tag:blogger.com,1999:blog-76810902623545145582024-02-08T04:24:03.735+00:00Alemtuzumab, MS and meCan alemtuzumab help keep Multiple Sclerosis at bay? Sian Gwilym records her experience of it.Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.comBlogger49125tag:blogger.com,1999:blog-7681090262354514558.post-28948570092997770122021-11-14T12:40:00.003+00:002021-11-14T13:01:17.193+00:0010 years since my first dose<p>Hello there,</p><p>Long time no speak eh?!</p><p>I realised a week or so back that it was 10 years since my first dose of Alemtuzumab so I thought it was a good opportunity for an update.</p><p>So what's happened in the last decade? Well lots obviously but the reason you are here is to find out how my MS behaved. </p><p>And I can tell you, for me, the best thing that happened between 14th November 2011 until 14th November 2021 is that my MS is STILL in hibernation. Yep! That's right. No new symptoms. No new worries. No new nothing.</p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/Hq3KQFsK7qc" width="320" youtube-src-id="Hq3KQFsK7qc"></iframe></div><h4 style="text-align: center;"><span style="background-color: white; font-weight: normal;"><span style="color: #2b00fe; font-size: x-small;"><a href="https://www.youtube.com/watch?v=Hq3KQFsK7qc">This video from 22nd October 2011 explains in a much better way than I can about Alemtuzumab</a></span></span></h4><p>Okay so I may not be completely truthful when I say I have had no MS type things happen at all in the last 10 years, but the things that have happened have been re-emergences of old symptoms due to a variety of things such as getting a cold.</p><p>When I feel slightly under the weather, my MS comes back just to pinch me into remembering it may be sleeping but it is still there. </p><p>My vision is the first thing I notice. The eye which was affected by optic neuritis all those years ago, gets very blurry and my glasses don't feel strong enough to be able to see the telly (an absolute disaster for me to be honest...!). My hands ache and my grip is affected. And the worst is I get completely and utterly exhausted. Yep, the 14 step staircase does suddenly feel like a trek up Mount Kilimanjaro.</p><p>It's not just getting a bug that brings back these annoying symptoms either - stress has been a major trigger. There have been pretty regular occassions over the last decade where I have been forced to take time off work as a result. Usually at really inopportune times too like at the start of or during a big project.</p><p><br /></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5jzzEAVZtLX1qkHJ4PUh8sPpoRLbbmemMekwUb0J9JbPx8_16U6W1bAD2wdVSj4dtalnQIC_gclM7CyPe8_7MSCIQf8bdcCvQgRBaSdP-S3AzQHecG83Jrzmjy-h_8LfOKDCoy_OJuK81/s1920/pexels-pixabay-256380.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1080" data-original-width="1920" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5jzzEAVZtLX1qkHJ4PUh8sPpoRLbbmemMekwUb0J9JbPx8_16U6W1bAD2wdVSj4dtalnQIC_gclM7CyPe8_7MSCIQf8bdcCvQgRBaSdP-S3AzQHecG83Jrzmjy-h_8LfOKDCoy_OJuK81/s320/pexels-pixabay-256380.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;">Although not my eye (mine has more wrinkles) when I get feel under the weather, my vision gets blurry (Pic: <a href="https://www.pexels.com/photo/extreme-close-up-of-woman-eye-256380/">https://www.pexels.com/photo/extreme-close-up-of-woman-eye-256380/</a>)</span></td></tr></tbody></table><br /><p>And that has been the worst. There is nothing that can bring on self loathing as when your body lets you (and other people) down. You feel a crushing sense of dread, helplessness, and overall disappointment that you are being forced to stop. It feels like a weakness in every sense of the word. You feel like you are letting people down... that it will be percieved as a negative by others... that you are failing. That's when it has been challenging to not slip into a depressive mode. </p><p>Thankfully, I have been able to find my inner pragmatism when needed and have dragged myself out of any self pity that threatens to envelop me. </p><p>In June this year I decided to take myself out of the situation that was causing the most stress and I left my job of nearly 20 years.</p><p>It's been strange. And getting used to the change has taken a lot longer than I thought it would. It was a job I had 100% loved with a huge amount of responsiblity and pressure. It was all encompassing. Hugely rewarding but equally hugely stressful.</p><p>My family life was suffering because I was giving my all to the job. Weekends were usually spent with me lying supine on the sofa in an attempt to recoup my energy and trying to disguise to my work colleagues how much the toll of the stress was having on my MS health. </p><p>So enough was enough. </p><p>An opportunity presented itself and I decided to take it. And although I am now in a world where I am not really sure what my next move is going to be - I am so much happier and more importantly healthier. </p><h4 style="text-align: left;">Less of the lesions</h4><p>Up until last year I was having annual MRI scans on my brain but due to an exhilarating lack of any MS activity in the form of any new lesions, it seems these are no longer needed with the obvious caveat that if any new symptoms appear then of course a trip to the noisy white coffin will have to be repeated.</p><p>I have so much to be thankful about. I honestly thought the Alemtuzumab treatment would give me a few years at best before the MS came back to bite me on my (growing) behind. I never imagined in my wildest thoughts that a full 10 years on and I am still feeling the benefits.</p><p>How long things will last only time will tell. But for me, this treatment has been simply magnificent. </p><p>Sian x</p><p> </p><p><br /></p>Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com0Cardiff, UK51.481581000000013 -3.1790923.171347163821167 -38.33534 79.791814836178858 31.97716tag:blogger.com,1999:blog-7681090262354514558.post-40495329974253806432017-01-20T10:13:00.000+00:002017-03-02T10:25:45.345+00:00Five years on... Hello!<br />
It's been a while since I posted anything but as I have reached the five year anniversary of the first treatment of Alemtuzumab I thought I'd let you know how I am getting on.<br />
And in one word - GREAT!<br />
Really great actually.<br />
In the five years since the treatment, I can confidently say that I have had zero relapses. Zilch, nada, none.<br />
Don't get me wrong, I do get occasional bouts of extreme fatigue where I have to take time off work, hole up on the sofa and just sleep (in fact I'm currently having one this week) but it happens maybe two or three times a year. And I can cope with that - and thankfully have a very understanding employer.<br />
But in terms of the other stuff, you know, the blurred vision, the muscle spasms, the tingles, the hand clawing, the fingers that refuse to work, the limbs that feel unstable in their sockets, the sight loss, the vertigo, the failure of your body to obey instruction to move, the confidence loss, the feeling of uncertainty and hopelessness and all those things... well I've been free of them for five years.<br />
<br />
When I first decided to go ahead with the treatment, I said to myself: "Well if it gives me five years MS free, it'll be worth it."<br />
And it has been.<br />
I have been given the gift of delay.<br />
Not to delay my life you understand. No, I've been given the gift to the delay the disease. And I am so thankful.<br />
In that time, I have lived by the mantra that one day I might not be able to do something, so while I can, I will.<br />
So I have run a couple of long distance events, lifted weights until I felt myself about to break wind and stopped hurriedly, worked out so my heart feels like it is bursting out of my chest and my face turned a magnificent shade of crimson, danced (only on on the odd occasion mind) until the early hours fuelled by copious amounts of alcohol, I re-sat my maths GCSE for the fourth time finally achieving a B grade, and have generally done as much as I can - because I can.<br />
<br />
My family has grown - I now have two little boys who delight and frustrate my husband and I in equal measure with their hilarious attempts of understanding this mad world we live in.<br />
And I am still working full time in a pretty stressful environment which (most of the time) I am happy with.<br />
So my life is busy, sometimes hard work, often with me shouting having stepped yet again into the puddle of pee that accumulates at the bottom of the toilet thanks to little boys not paying attention. But it's a good life. And I'm happy. Especially as I have been able to have this time minus any intrusion from MS.<br />
<br />
That said, I have of course been having monthly blood tests to monitor for any side effects from Alemtuzumab and the annual MRI head scan.<br />
But I've reached the magic five year point so no longer have to have those monthly blood tests. Amazing!<br />
I actually paid very little attention to the whole blood test thing.<br />
When I first started, I was handed a blue folder by one of the MS nurses in which to record the results and was also ordered to ensure I rang up to get the results. I did it. Once.<br />
The documents inside the blue folder remain blank. I was not interested. If there was something up, they'd let me know I figured. When I look at my lack of interest and participation in filling in the results sheet I think it's probably just an act of rebellion or maybe an act of control. It was bad enough I had MS and had to have monthly blood tests, I'd be damned if I was filling in a results sheet as well! Stupid and childish I know. But because I felt so well, to have to be reminded monthly that I had MS annoyed me. And having to speak to someone about it annoyed me even more.<br />
So I didn't speak to anyone about the results. Because I didn't want to and actually because I didn't care. Obviously I would have cared if something had been wrong - but I just knew there was nothing wrong. I felt (and still feel) so well.<br />
<br />
And the annual MRI head scan. Well now that's been an experience. Not for the results which have consistently showed no new MS activity in my brain since the first treatment. No that's all been fine.<br />
What I struggle with is the actual ordeal of being in that machine for three quarters of an hour, not able to move and being deafened by the banging and whirring and tick tick ticking of the actual scan.<br />
And the itch. There's always an itch that starts usually on the back of the leg or possibly on your ear just as the scan begins that you are desperate to scratch but that robotic voice from the control room has just reminded you to stay as still as possible. All the while the itch torments you and then the sweating starts because the itch is driving you nuts but you are not allowed to move.<br />
<br />
With every scan I have, I have to fight the rising panic which starts as soon as start thinking about it.<br />
I have now even resorted to using the breathing techniques I learned in preparation for birth (that is a whole other story) which if nothing else calmed me down. There's nothing like a deep breath in through the nose for a count of four before a long slow breath out through the mouth to the count of eight to quell the rising fear.<br />
<br />
And so that is that.<br />
<br />
Five years on and things are good. MS has little impact on my life at the moment thankfully. I am very aware that could all come to an abrupt end in a heartbeat but while the disease is in hibernation I'm in no hurry to wake it.<br />
<br />
Sian x<br />
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Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com8Cardiff, UK51.481581000000013 -3.179089999999973851.323433500000014 -3.5018134999999737 51.639728500000011 -2.8563664999999738tag:blogger.com,1999:blog-7681090262354514558.post-87532299449326524432013-07-07T20:21:00.001+01:002013-07-07T20:21:13.108+01:00End of an eraDear friends,<br />
My first MRI scan since I had two rounds of Alemtuzumab treatment has almost brought me to tears.<br />
But those tears are of joy because the scan was only totally clear of any new MS activity on my brain!!! Woohoo!<br />
Yep, so far so good. The Big A has done what it said on the tin and put my MS monster into hibernation.<br />
I don't know how long for and quite frankly any time at all is a bonus.<br />
It's made me smile. And it's made me so thankful to my neurologist for giving me this chance. And it's warmed my very soul that I made the choice I did when I considered my treatment options.<br />
I've been so lucky. Okay I know having MS isn't the luckiest thing in the world, but the timing, the location and the opportunity that came my way has been so very very lucky.<br />
And this may well be one of my last blog entries...<br />
From symptoms to diagnoses to treatment, time flew. I didn't have a chance to get my head around it all. But as Dear Diary has evolved to be able to share every thought, emotion and mood with anybody who happens to stumble across it, I found salvation in this blog.<br />
When my world turned upside down, it was here I was able to off-load. It's been cathartic. And I've been humbled by the friends who have blessed me by reading the nonsense I have often spouted.<br />
I feel like I have done the full circle. I'm back to me again. And all this despite my MS nemesis which although not welcomed with open arms is certainly now just part of me.<br />
Maybe if life throws some more surprises in my direction, I will be back.<br />
But until then my friends, good luck, good health and stay positive.<br />
Au revoir, Sian x<br />
Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com1tag:blogger.com,1999:blog-7681090262354514558.post-78174575810747560542013-06-03T21:34:00.000+01:002013-06-03T21:34:00.062+01:00Spinning around<span style="font-family: Arial, Helvetica, sans-serif;">Something amazing has happened.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">But before I reveal all, let me take you back a bit.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">About three or four years ago - before I was diagnosed with MS - I started experiencing a bit of a spinning sensation in my head. When I lay down to bed I got a bit giddy. The only way I can explain it is when you have one or two too many sherries and you get that horrible world is spinning feeling when you lie down to sleep. You attempt to enter the world of nod with one foot on the floor in a bid to halt the nausea from the spinning but to no real avail. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I put it down to tiredness and thought no more about it. And then a couple of days later, I woke up to find the whole world was in a mad spin. I couldn't walk unaided. I was in a constant state of fear that my stomach contents were about to erupt from my mouth and it was generally a really scary, horrible experience.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">A short visit to the GP later I was diagnosed with something called labyrinthitis - an inner ear infection which can cause vertigo. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Two weeks of bed rest *lying on the sofa with an abundance of day time telly to keep me company* and it disappeared as quick as it arrived.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">A year or so later and MS welcomed itself into my life.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">And as anyone who has had a recent diagnoses of MS knows, during the obligatory Google search afterwards, dizziness and vertigo pops up as one of the things to look forward to having.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Being one of those idiots who frequently self-diagnoses - not from the many years of medical training a real doctor has to do but from a five minute internet search (it's amazing what you can find at the click of a button these days) - I put down the labyrinthitis to my friend and partner in crime MS.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So now I've filled in the gaps, let's skip forward to May 2013.</span></h4>
<span style="font-family: Arial, Helvetica, sans-serif;">Work is frantic. My hours are long and the stress levels are at an all time high. The toddler has become plagued with the agony of the crowning of the back teeth and a full night's sleep has become a distant dream for him and for me.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">And lo and behold, the dizzy head is back. I bend down to pick up my bag and my head is in a spin. I turn around quickly to answer a question and my brain feels like it rolls in my skull. As I walk down the stairs I have to clutch the bannister because the stairs feel like they are racing up towards me. And then I go to bed and for a few moments after lying down it feels like I am on a boat in stormy seas. Please someone pass me the sick bag.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">"It's all down to MS," I rage at my long-suffering husband.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Two weeks later and I ring the MS nurse in a fit of desperation but knowing full well that I can't be helped (see, my years of medical training have paid off...) and off I trot to the clinic fully convinced that it is all down to over work and sleep deprivation and there's nothing that can be done anyway.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Oh how wrong I was.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">A quick explanation of symptoms and the neurologist declares: "This sounds like an ear thing to me not an MS thing."</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Apparently I had <a href="http://www.nhs.uk/Conditions/Vertigo/Pages/Treatment.aspx" target="_blank">benign paroxysmal positional vertigo</a> (BPPV) or in layman's terms, grit stones stuck in the inner tubes of my ear messing with my balance. They needed to be encouraged to leave the tubes and this could be done using the<span style="color: #006699;"> </span><a href="http://www.ncuh.nhs.uk/our-services/epley-manoeuvre-quick-guide.pdf" target="_blank">Epley Manoeuvre</a>.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">He proceeded (with the help of the MS nurse) to throw me around the bed (not quite but kind of) and hey presto! Five minutes later and the dizzy head has gone. No more uncontrollable rolling of the eyes trying to focus when I changed head position. The spinning sensation was banished. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Such was my joy that I immediately went home and sought out a YouTube video of what magic treatment I had just endured to cure me of this ailment. There were loads on there but here is a short one just for you to get an idea.</span><br />
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<br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/ZqokxZRbJfw?feature=player_embedded' frameborder='0'></iframe></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Despite putting up with the dizzy head several times over the last few years and unfairly blaming MS, the real reason was some pesky little grit crystals stuck in my ear tubes. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">And even better, it means that my MS monster is still in hibernation. I had feared that dizzy head was something more sinister but nope. It's been six months since my last and final treatment of Alemtuzumab and so far so good. MS has been rendered dormant and long may that continue.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">And on that note, it struck me that today (3rd June 2013) is the second anniversary since MS and I became an official couple living our lives in perfect (kind of) harmony.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">What a two years it has been. Lots of ups but lots more downs. But you know what, I'm ok about it. And to use a term I've stumbled across on Twitter but never believed it before now: I have MS but MS doesn't have me. Who knows how long I'll feel like this, but at the moment, it's all ok.</span><br />
<br />Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com4tag:blogger.com,1999:blog-7681090262354514558.post-89983734852144707022013-04-18T16:52:00.001+01:002013-04-18T16:57:34.705+01:00Loosening the mind trip gripShhhh - I don't want to say this too loud, but I feel so convinced this time that I'm going to say it.<br />
I don't want to make too much song and dance about it but I have to share.<br />
Ok *deep breath* here goes...<br />
I think I might have got through the MS mind trip!<br />
There I've said it.<br />
And now for the disclaimer.<br />
At least I feel like I have anyway.<br />
I've said it before on this blog... and probably at the time I said it I meant it. And then all of a sudden a couple of weeks later I would write about how MS had got me in its mind trip grip again.<br />
But today it feels different.<br />
<br />
And believe it or not, it has all got to do with Northern lass, all around beauty and marathon runner Nell McAndrew.<br />
Ever since that fateful day in June 2011 when I was diagnosed with MS, exercise has not been on top of my agenda.<br />
But as a new year's resolution for 2013, I decided I would try and exercise a couple of times a week. And up until three and a half weeks ago, I was managing to stay on top of my resolution. I found a DVD called 30 Day Shred by Jillian Michaels and was managing to do one of her 20 minute work outs at least every other day.<br />
<br />
And then I fell off the exercise wagon. It was a combination of my toddler developing a filthy habit of waking up a couple of times every night, a bit of a stressful time in work and general tiredness enhanced by not having a full night's sleep. It didn't take much for me to abandon my trainers and fall into a ball on the sofa every night rather than follow Jillian and her helpers as they tried to encourage me to tone up my midriff. Chocolate became my friend. And wine became my de-stresser.<br />
"I'll start again tomorrow" became my mantra.<br />
And suddenly the 30 day shred became the 30 day slob.<br />
<br />
Enough was enough. And today I decided to give Nell's DVD a whirl.<br />
It was great. It was hard, and I had to stop several times because my lungs felt like they were on fire and my legs had turned to stone, but it was great. Ok it did take nearly an hour for my red cheeks to return to normal colour but it felt so good to actually move again. Nell got me back into the exercise groove.<br />
<br />
Then a few hours later, it dawned on me that despite being in an exercise void for nearly a month and feeling guilty for being so lazy, I hadn't (for the first time since becoming me with MS) blamed my inactivity on the monster.<br />
<br />
As I reflected, I realised that unless I had been specifically asked - I hadn't even talked about having it. I hadn't spent time dwelling on it. Nor had I used it as an excuse to avoid an occasion.<br />
<br />
So my conclusion is that after much soul searching I may actually have got through the MS mind trip.<br />
I'm not saying it'll be the case all the time because I am sure I'll get my dark times again, but at the moment MS is at the back of the queue of everything else in my life.<br />
<br />
Like an adolescent pup it tried to assert itself but I've shown it who is top dog and I've also made it quite clear its place in the pecking order is at the back.<br />
And just to make it absolutely clear, I've blown a big raspberry at it and debagged it when its back was turned in a public place. Ha!Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com0tag:blogger.com,1999:blog-7681090262354514558.post-77164684969576440062013-04-03T21:10:00.000+01:002013-04-03T21:10:55.809+01:00Handbag vodka and other thingsI am ashamed at how long it has been since I last blogged. More so after my first 'group' meeting with some MSers last night.<br />
<br />
I had persuaded myself that now I have admitted my MS status to myself and anyone else who wants to listen it was time to go public with the MS crowd.<br />
<br />
And so it was that I ventured into town on a school night and was confronted by a gang of giggly, handbag-vodka swilling, funny and overall nice bunch of people in a Cuban-themed bar in the middle of Cardiff.<br />
<br />
It was nice and strange all rolled into one. Nice because these people were friendly - each varying in degrees of gregariousness. They were welcoming and kind and just an all around nice gang.<br />
<br />
But it was strange too because on the face of it, to a complete random person who knew no better, we were a gang of mates meeting up and loudly laughing (and laughing and laughing some more). It would have looked like there was nothing unique about us apart from being a bit tipsy (which in a couple of cases was spot on but in a couple of other cases was actually a balance issue) and we would have looked like we were all old friends instead of the reality of us being complete strangers to one another with not a great deal in common apart from fighting the MS monster which was flummoxing each and every one of us often in totally different ways.<br />
<br />
It was humbling and interesting hearing snippets of how these people were coping with MS. Don't misunderstand me - this was not a night of soul baring about MS. Nor was it one full of 'woe is me'. It was a night meeting people with a shared interest but not one where our shared interest was dissected to within an inch of its life. Yes there was chat about MS and about treatments and everything connected but it was also a night of sharing nachos and avoiding getting photographed by the keen phone-camera snapper in the group!<br />
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In other news, I went back to work in February It took longer than I had expected to get over round two of the Big A. For lots of reasons really including feeling the need to lick the emotional wounds MS dished out and generally not feeling physically ready to get back into full time work. But I'm back now and things are going well. My baby turned from a sweet smiling lovable little soul into a two year old with an independent streak and a determination (and a scream to go with it) to do things his own way.<br />
<br />
My life seems normal at the moment. MS is keeping its ugly head down and so far the Big A appears to have thwarted any attempts by my monster to re-emerge.<br />
I do get floored by fatigue by the end of the week (despite me changing from working shifts to a 9-5 day) and am often forced to spend my weekends on a big rest which is frustrating and guilt inducing but overall, things are going okay and I feel positive.<br />
Life is good. Long may it continue.Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com0tag:blogger.com,1999:blog-7681090262354514558.post-72393533995784552002013-01-29T11:33:00.001+00:002013-01-29T11:33:51.588+00:00It's a MSsy businessYesterday I met my first real life MS person.<br />
Thanks to the wonder of Twitter, I have made some online friends with MS. But until yesterday, I had not been brave enough to actually meet these people in person.<br />
Instead I preferred to imagine what they looked like and pictured them in their homes with their lives going on around them. I gave them careers and families and even chose what cars they drove if they could drive.<br />
Then out of the blue, I had a direct message on Twitter from one of my online friends. Would I like to meet for a drink with a couple of other people who had MS?<br />
At first I was smothered in a feeling of being part of a new gang that wanted me to join and I replied yes please! But soon after that feeling started to change. And I began to wonder who these people really were. Would they be nice? Would they be 'normal'? Would they be a bit clique-y? Would they be a bunch of moaners who were going to drag me into an MS slump? Would they gang up on me?<br />
And so the elation turned to dread and I quickly found something else to do that day.<br />
But my MS friend didn't forget me as easily. And another invitation soon followed. This time a one-on-one.<br />
By God this friend was persistent.<br />
"Right," I thought, "I'll meet her for half an hour for a coffee. Job done."<br />
And so arrangements were made.<br />
But in the misery <a href="http://alemtuzumabmsandme.blogspot.co.uk/2013/01/confidence-hangover.html">I have been loitering in</a> recently, our coffee date was shoved into the recess of my mind and I forgot about it.<br />
Until yesterday morning, about an hour before we were due to meet, when my treacherous mobile phone helpfully beeped a reminder while I was at the opticians.<br />
I dabbled with the idea of standing her up. But my conscience stopped that notion in its tracks - after all she may well have made a real effort to meet me and I didn't know if she had mobility problems.<br />
I was going to have to do it.<br />
So I made my way to Starbucks (yes I know they are tax dodgers but everyone knows where the Starbucks is) and waited in the queue to place my order.<br />
Helpfully the Starbucks team now have to ask customers' names when they place an order so I was listening intently hoping to hear my friend's name being given.<br />
Nope. I didn't hear it.<br />
After getting my coffee, I scanned the cafe. How do you find someone with MS?<br />
I shamefully confess I was looking for someone with a visible disability. Someone with a stick, or a crutch, or a wheelchair.<br />
But there wasn't anyone in the place who had any of those tools.<br />
I sat down. And I text my friend. She replied "I'm coming in now" as I watched the door and spotted her.<br />
The nervous knot in the pit of my tummy tightened as we greeted each other.<br />
But you know what, it was ok. It was more than ok. It was good.<br />
She was nice. She was friendly. She was normal. And I really liked her.<br />
Our half hour coffee date went on for more than an hour.<br />
We chatted about normal stuff. And about MS stuff. And about MS people we were both in contact with.<br />
And then I confessed that my name Sian isn't the name I go by in real life, rather it is my middle name and my MS alter ego.<br />
When I was in the MS closet I was Sian. But now I am out of the closet and people know I have it but I still like to pretend it is Sian who has MS and not me. (Yes I know I am a weirdo but it's an identity thing...)<br />
She laughed. She thought it was funny.<br />
We shared stories of how we were affected by MS, how we were coping with it, how it still screwed our heads up when we were least expecting it.<br />
She well and truly popped my MS cherry - and I am glad she did it so gently.<br />
Now I want to meet my MS online friends in person and I want to become part of the gang.<br />
It's a funny old business this MS thing and sharing it with people who know what it is like too can only help turn it from messy to MSsy.Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com1tag:blogger.com,1999:blog-7681090262354514558.post-5464992650306572422013-01-22T13:28:00.000+00:002013-01-22T13:28:39.621+00:00Confidence hangoverSometimes things are set to try us.<div>
Sometimes we overcome them. Other times no matter how hard we try, we can't.</div>
<div>
And on the odd occasion, we won't even bother to attempt to get through it. We just let it happen.</div>
<div>
I find myself being tried by something I don't even know how to get over.</div>
<div>
My current crisis is: I have lost my confidence.</div>
<div>
It hasn't been a sudden thing, it has been a long, slow creep. </div>
<div>
I doubt everything these days.</div>
<div>
Questions on how and why something and everything is happening haunt me. </div>
<div>
And friendly teasing about my personality traits from those closest to me suddenly feels like merciless cruelty.</div>
<div>
Doubt and loathing are now almost daily currency in how I view myself.</div>
<div>
I find myself waiting for everyone and anyone who is close to me to also realise what I am. And to quickly rush upstairs, pack a holdall and run screaming from the house, without a backward glance. Never to return. Everything feels temporary now. Nothing seems permanent and it all feels so fragile - and breakable.</div>
<div>
I've become self obsessed.</div>
<div>
And this is a pretty embarrassing confession to make. </div>
<div>
We've all got friends or family members who literally cannot even contemplate that the world doesn't revolve around them and what they are doing.</div>
<div>
We love them and we cosset them and we allow them to believe that they are the universe's centre, all done with a wry smile and a fond shake of the head.</div>
<div>
But I now find myself in a position where I too have become self obsessed and am all consumed with me.</div>
<div>
How ridiculous! What on earth has happened?</div>
<div>
But try as I might, I cannot seem to get through this challenge to put me back where I was - confident, happy but a bit of a worrier.</div>
<div>
The only thing I can muster these days is the worry. </div>
<div>
I smile occasionally, I even laugh sometimes. </div>
<div>
But the confidence has slipped.</div>
<div>
It is currently lying on the floor in a heap. As if it has been out on a hard drinking session and has only just made it back home. Unable to make it up the stairs to bed, it just lay on the floor. Its coat is half off. Its skirt is tucked into its knickers. Its blouse has a red wine stain and something a bit suspect down the front. Its carefully straightened hair has got wet and dried frizzy and now sports a little bit of sick in it and its lipstick is smeared over its face. Its tights are ripped and one of its shoes is lost. The contents of its handbag are strewn around it. Its purse lingers on the back seat of the taxi which drove the long route home. And the house key remains in the lock on the outside of the door which is still half open despite the cold weather. It's going to take some time for the life to get back into Confidence and when it does, it is going to have a very bad headache.</div>
<div>
So what can I do to help poor Confidence get back onto its feet? I can but offer it time and a bit of TLC and just wait until it is back on form.</div>
<div>
And until it is ready, I just have to wait because I just don't know what else to do.</div>
<div>
<br /></div>
<div>
<br /></div>
Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com0tag:blogger.com,1999:blog-7681090262354514558.post-35056697867308994532013-01-07T10:26:00.000+00:002013-01-07T10:34:48.014+00:00New year and new startIt's now the year 2013. And this year feels like a momentous year.<br />
<br />
The reason? Well unbeknown to me, all of last year I was waiting. I was waiting for my second and final dose of the Big A. I didn't realise that I felt like I was carrying a weight. My life felt on hold until I had the treatment. And now I have had it. And I feel free.<br />
<br />
Weirdly it feels a little scary to be free and not having the excuse of an upcoming treatment to blame my woes and my reluctance and my hesitancy on.<br />
<br />
It feels a bit like I am leaving home for the first time with the MS nurse becoming my mother patting me on the head and saying: "Off you go child, make your way. You father (neurologist) and I have provided you with everything we can. Now it is your turn."<br />
<br />
I admit I rebelled in the first few weeks after the second Big A. I became a petulant child and took delight in telling anyone and everyone how hard life was for me. Slamming the fridge door in a Kevin-the-teenager kind of way grunting: "It's so UNFAIR!"<br />
<br />
Shocked family and friends who I have always shielded from the real truth of how I feel about having MS were gobsmacked at the venomous truth which I answered their well meaning questions on how I was feeling that day.<br />
<br />
And then all of a sudden and with considerable relief, I felt calm again.<br />
I disliked the rage and the frustration and the ball of fury which had taken over my being.<br />
I'm now back to being me.<br />
<br />
But the anxiety lingers about the future. I realise this is because I have focused only on getting the second dose of the Big A and haven't really thought further than that.<br />
So new year and new start.<br />
<br />
I've been given a chance at a relatively-free MS life so I need to grasp it and crack on. I've got to make the most of this thing.<br />
And I am going to.Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com1tag:blogger.com,1999:blog-7681090262354514558.post-28592247641334107692012-12-23T13:54:00.002+00:002013-01-07T10:39:07.831+00:00Round robin (of the last six weeks)Hello there!<br />
<div>
Firstly, let me apologise for my slackness at updating this blog.<br />
<div>
The blame lies solely at the feet of an online shopping frenzy over the last few weeks in preparation for Christmas.</div>
<div>
Thankfully I managed to get it done with all but three returns and two long visits to the sorting office.</div>
<div>
Now the planning has all been done and the Big Eat is about to begin. I fear after the festivities, my jeans will be too tight to fit my increased girth into... but hey! I'll worry about that in 2013.</div>
<div>
Since my last post, things have been getting better and better. My energy is almost back to full strength and I feel good.</div>
<div>
Unfortunately I am still plagued with vertigo. I have all but lost patience with it now and if I still have it after Christmas, I shall be making a trip to the GP. It's surely not normal for a 'temporary' re-emergence of an MS symptom to still be lingering on like this. Is it?</div>
<div>
I have avoided meeting people up to now and have successfully managed not to catch any nasty germs which would have hindered my recovery. </div>
<div>
My sick note from work lasts runs out the first week of January. Although I am feeling good, I don't feel ready for the full on pressure work will bring and so I suspect I shall go cap in hand begging the GP for another couple of weeks grace.</div>
<div>
I always feel guilty about asking for a sick note. I come from a family who are ingrained with the work-ethic gene that inflicts major torment if illness tries to get in the way of making it into the work place. Got the plague? Pah! It's just a cough. Burned in a fire? Ha! It's just a blister. Scurvy? Eat an orange and stop moaning! </div>
<div>
Me and my family are probably the reason why vile bugs like norovirus spread because we idiotically go to work when we feel awful. Almost revelling in the martyr like status we adopt after struggling into work despite our affliction.</div>
<div>
So you can imagine the guilt at not feeling 100% and know work isn't an option and then have to go to the GP for a note. </div>
<div>
I get myself worked up. I rehearse the conversation in my head. I imagine the GP sitting there shaking his head denying me the note. I work out what argument I will use to convince him to change his mind.</div>
<div>
I am already worrying about this conversation and I have a fortnight left on my current sick note. </div>
<div>
And then I see the GP and he is kind and patient and nice and I wonder what the heck I have been worrying about.</div>
<div>
Over the last few weeks, I've also reflected a lot on MS. I never imagined MS would bring my anything but negativity. But I was wrong. I've had many moments of positivity. </div>
<div>
One of those is meeting (online mostly) people in a similar situation to me. People who although I have never met in person, I consider as friends. These MS friends, know what I am feeling and the emotions I am going through. They know what struggles I face and the fragile state my mind can occasionally be in when I am at my weakest. They know how the future is filled with worry - and hope. And they know because they are where I am. They are me and I am them. And we laugh. And we cry. And mostly we are filled with the hope that it will all be ok in the end. </div>
<div>
So to my friends, may you enjoy a merry Christmas. And let's all hope for a peaceful future.</div>
<div>
With love,</div>
<div>
Sian x</div>
</div>
Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com0tag:blogger.com,1999:blog-7681090262354514558.post-14069849551166987872012-12-05T11:14:00.004+00:002012-12-05T11:14:49.178+00:00Three weeks since round twoNot much to report.<br />
I'm feeling less pathetic which is a joy.<br />
The slight vertigo remains which is anything but a joy. It's a bit of a nuisance.<br />
I'm still tired and like to have a little nap during the day but overall my energy levels are higher.<br />
Leaving the house is still a bit of a chore because it seems like hard work but when I do go out it is actually a bit of relief to escape the confines of the house.<br />
I suppose it is a case of still not 100% but getting there.Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com0tag:blogger.com,1999:blog-7681090262354514558.post-23434087214927730732012-11-29T13:42:00.000+00:002012-11-29T13:56:31.207+00:00Alemtuzumab: The cynical business of rebrand and recost<br />
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<span style="font-family: Arial, sans-serif; font-size: 10pt;">In August, I <a href="http://alemtuzumabmsandme.blogspot.co.uk/2012/08/big-shortage.html" target="_blank">posted a blog</a> about the withdrawal from the market of the
drug Alemtuzumab (also known as Campath and Lemtrada).<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 10pt;">As anyone who reads this blog knows, Alemtuzumab is the treatment I have
been undergoing as a way to combat MS.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 10pt;">So far for me it has worked. <o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 10pt;">It has turned my life around. I no longer suffer from tingling feet and
legs. My vision is not affected. I no longer get painful spasms in my arms. My
hands and fingers work as they should. I
can now walk with confidence. I’ve even done a bit of running since I had the
first dose in November 2011. <o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 10pt;">I feel better. I feel ok again. I feel I can look to the future.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 10pt;">I’ve just had my second (and probably last) dose of the drug.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 10pt;">But I am one of the lucky ones. I am one of the fortunate few who had the
opportunity to get this fantastic drug. According to the MS Society, I am one
of the</span><span style="background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 10pt;"> 100,000 people in the UK
have MS. <o:p></o:p></span></div>
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<span style="background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 10pt;">This drug might not be appropriate for all of those 100,000 – but for
some of them it could offer the chance for a relatively MS-free existence.<o:p></o:p></span></div>
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<span style="background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 10pt;"><a href="http://www.mssociety.org.uk/ms-news/2012/08/drug-reporting-positive-results-ms-temporarily-withdrawn-market" target="_blank">But the company which makes the drug</a>, Genzyme has taken it off the market
while it seeks a licence for it to be used to treat MS.<o:p></o:p></span></div>
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<span style="background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 10pt;">Cynically, <a href="http://www.bbc.co.uk/news/health-20151891" target="_blank">this probably means the cost of the drug will increase</a>. And
fears are that it will increase to a cost unaffordable for the NHS.<o:p></o:p></span></div>
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<span style="background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 10pt;">This fact makes me feel angry and saddened that a drug which has already
made its developers a lot of money to treat people with chronic lymphocytic leukaemia (CLL</span>)
is being used yet again to make another fortune at the expense of the health of
those people who could really benefit from such a treatment.<o:p></o:p></div>
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<span style="background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 10pt;">I don’t know if the story about a patient with CLL who also happened to
have MS was treated with Alemtuzumab and saw a dramatic improvement to their MS
is true. Or if this is how researchers realised the drug could be used to help
MS. But the simple fact of the matter is that the drug was developed (and paid
for) to help patients with CLL. As a complete coincidence, it also happens to help
people with MS. <o:p></o:p></span></div>
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<span style="background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 10pt;">So how can Genzyme justify <a href="http://www.nelm.nhs.uk/en/NeLM-Area/News/2012---August/10/Discontinuation-of-licensed-supplies-of-alemtuzumab-Mabcampath/">withdrawing the drug</a> and then presumably
re-releasing it with a heftier price tag?<o:p></o:p></span></div>
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<span style="background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 10pt;"><a href="http://www.genzyme.co.uk/corp-info/news/local.aspx?id=030410" target="_blank">According to its website: </a>“</span><span style="font-family: Arial, sans-serif; font-size: 10pt;">Genzyme is
dedicated to making a major positive impact on the lives of people with serious
diseases. Since 1981, the company has grown from a small start-up to a
diversified enterprise with more than 12,000 employees in locations spanning
the globe and 2008 revenues of $4.6 billion.”</span></div>
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<span style="font-family: Arial, sans-serif; font-size: 10pt;">It’s not
just people like me – people who have MS who are dismayed by what is probably
going to happen.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 10pt;">T – a neurologist
who uses Alemtuzumab to treat some of his patients – commented on my earlier
blog.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 10pt;">This is what
he said: <o:p></o:p></span></div>
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<span style="background-position: initial initial; background-repeat: initial initial; color: #222222; font-family: Arial, sans-serif; font-size: 10pt;"><i><b>“To put it
bluntly, Genzyme has withdrawn the drug 'Campath' from the shelves. As the sole
supplier you'd think they can't - but they can. It is NOT a licensed treatment
for MS so they do not 'have' to supply it. It is a licensed Rx for relapsed
chronic leukaemia - so they DO have to supply it - and have undertaken to do so
on a 'named patient basis' - for free. So if a haematologist wants to treat a
CLL patient they make a prescription, pharmacy order it, it is 'for the named
patient only' and hey presto. Unfortunately we neurologists cannot use any
"leftovers" under law (or prescribing rules); even tho the blood docs
use literally hundreds of miligrams for a course and we use 12mg per day (less
than half a vial) for 5 days then 3 days a year later - as you have been
blogging about.<span class="apple-converted-space"> </span></b></i></span><span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 10.0pt;"><i><b><br />
<br />
<span style="background-position: initial initial; background-repeat: initial initial;">The current list
price is about £200 per vial. We split vials for MS-ers like you: so perhaps
your total course will cost about £800-1000. Not including 8 days in a bed,
food/drink/drip costs/steroids, extra scans etc. Just drug costs. The RUMOURS
are that they are looking at a price of £60-70,000 per course for the 'new
drug' (ie brand) Lemtrada - ie the 8 doses split 5:3 12 months apart. So
perhaps just under £10K per vial!!! So not the "10-20x hike"
mentioned in the Independent but a little more eye-watering than that - maybe
50-100x hike. They may well have spent £250M in developing the drug, running
rigorous worldwide trials etc, but this will potentially ensure that NICE
simply says 'no'; at least in the UK. As sure as eggs is eggs....</span><br />
<br />
</b></i><span style="background-position: initial initial; background-repeat: initial initial;"><i><b>We managed to
stockpile Campath and have enough to treat all our existing patients, as does
the Royal Free so I hear on the grapevine. Other centres, even Cambridge that
have developed the damn stuff, failed to do so and as you will know Alasdair
Coles has been in the news on about this. Frankly, it is incompetent NHS
administrators unable or unwilling to make immediate decisions to buy it with
less than a day's notice and hence stockpile; that have caused this shortage
aswell as the company. That's also a disgrace.</b></i><span class="apple-converted-space"><i><b>”</b></i><o:p></o:p></span></span></span></div>
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<span class="apple-converted-space"><span style="background-position: initial initial; background-repeat: initial initial; color: #222222; font-family: Arial, sans-serif; font-size: 10pt;">So it seems patients and medics are united
in pulling this drug off the market to rebrand for sale at a higher price
is a cynical, calculating and thoroughly underhand thing to do – everyone is
united... everyone apart from those people who are set to make an absolute mint
out of doing such a thing.<o:p></o:p></span></span></div>
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<span class="apple-converted-space"><span style="background-position: initial initial; background-repeat: initial initial; color: #222222; font-family: Arial, sans-serif; font-size: 10pt;">I suppose for those people who make such
decisions, money is no object when it comes to treating the health of ‘me and
mine’ but for the rest of us, it’s a pretty shoddy deal when a drug which can
turn the health and life of someone with MS around is denied because it is too
expensive.<o:p></o:p></span></span></div>
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<span class="apple-converted-space"><span style="background-position: initial initial; background-repeat: initial initial; color: #222222; font-family: Arial, sans-serif; font-size: 10pt;">We’ve seen it with the banks – big profits
overrule any moral or ethical issues. And I suppose, those with their eye on Genzyme's coffers say rebrand and recost is good business.<o:p></o:p></span></span></div>
<div style="background: white; margin-bottom: 15.6pt; margin-left: 0cm; margin-right: 0cm; margin-top: 0cm; mso-line-height-alt: 7.3pt;">
<span class="apple-converted-space"><span style="background-position: initial initial; background-repeat: initial initial; color: #222222; font-family: Arial, sans-serif; font-size: 10pt;">But just because it is good business, doesn’t
make it right. <o:p></o:p></span></span></div>
<div style="background: white; margin-bottom: 15.6pt; margin-left: 0cm; margin-right: 0cm; margin-top: 0cm; mso-line-height-alt: 7.3pt;">
<span class="apple-converted-space"><span style="background-position: initial initial; background-repeat: initial initial; color: #222222; font-family: Arial, sans-serif; font-size: 10pt;">Let’s just hope someone’s conscience is pricked
into doing the right thing. And soon.</span></span><span style="background-position: initial initial; background-repeat: initial initial; color: #222222; font-family: Arial, sans-serif; font-size: 10pt;"><o:p></o:p></span></div>
Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com2tag:blogger.com,1999:blog-7681090262354514558.post-874987650321884872012-11-27T10:14:00.000+00:002012-11-27T10:14:51.757+00:00Two weeks since round twoToday is the two week anniversary of the start of round two.<br />
How do I feel?<br />
I feel ok.<br />
I'm still suffering from a bit of vertigo but it is more of an annoyance than anything else.<br />
My energy levels have increased although if I do too much standing or try to do too much I do need to go and sit down for a little while. But it's getting better.<br />
Overall I feel better than I thought I would.<br />
I've been signed off work for six weeks which I am glad about because I fear my work colleagues, as lovely as some of them are, are not the cleanest bunch. One takes great pride in sneezing (loud with an accompanying spray of germs) without covering his mouth. Apparently the particles which get fired out in a sneeze can travel up to 12ft. I feel repulsed and disgusted by this on a normal day. But with a compromised immunity as the one I am now sporting as well, you can add fear to that as well.<br />
The dread of catching a bug is paramount in my mind at the moment. To the point where I've become a little obsessed by it. This is an absolutely ridiculous state of mind to be in considering I have a 21-month-old son who has a cough and runny nose on an almost permanent basis bringing home nasty little germies picked up after his day in nursery. Be that may, I am still a bit paranoid about being around anyone (apart from my son!) who may be harbouring some filthy bug desperate to find a new host.<br />
So I've gone off radar from meeting up with people for a while.<br />
To be honest, I don't really have the energy to go gallivanting so it's no hardship.<br />
From this time last week, I feel 100% better but from this time three weeks ago I still feel pretty pathetic.<br />
All in all, things are looking up but there's still a little way to go before I feel me at full strength again.Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com0tag:blogger.com,1999:blog-7681090262354514558.post-57241544978306893602012-11-21T14:02:00.001+00:002012-11-21T14:02:43.921+00:00Day five after round twoEvery day I feel more myself.<br />
I am still pretty weak and pathetic and standing for too long makes me feel lightheaded but I feel so much better.<br />
The vertigo which came back to haunt me as some of my old MS symptoms returned following the treatment is proving to be a stubborn swine to shift and I still have the feeling of a rolling brain every time I move my head suddenly. I don't know if you have ever experienced when you have a few tipples too many and when you go to bed the world starts to spin and you feel sick? Well that is what it feels like. Thankfully after the sudden head move, the rolling brain starts to settle within a minute or so. So it isn't unmanageable. It does make me not want to drive yet though.<br />
But that is fine, I am happy sitting in the warm house watching rubbish telly and eating.<br />
My appetite is still on over-drive. I still can't work out if it is because of the steroids or if it is because I'm being a little piggy... Oink oink.<br />
I have put the anti-histimin tablets into the bathroom cabinet now I no longer need them.<br />
I'm continuing to take the anti-virals twice a day and will do for the next couple of weeks. I still feel fatigued and am snoozing continually throughout the day.<br />
My mood has lightened. As you can probably tell from my last post, I was a very angry lady a couple of days ago. Nothing could stop the ball of rage which was building up inside me and I felt I was fighting the world.<br />
But you know what, it is amazing what effect time can have.<br />
All of a sudden I feel peaceful again. I feel calm and I have started to laugh again.<br />
One of the overriding emotions I have at the moment is a bit of embarrassment at how I suddenly became Mrs Tantrum. But hey, I'm not going to let that consume me. Haven't we all made idiots of ourselves at some time or another?!<br />
So overall although the last five days haven't been easy - in fact they have surprised me at how hard they have been, I finally feel I can see the light now.<br />
I was in a dark place both physically and mentally but things are looking brighter.Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com0tag:blogger.com,1999:blog-7681090262354514558.post-33350110361200936942012-11-19T11:46:00.000+00:002012-11-19T11:55:30.834+00:00Day three after round twoThis weekend has been a mixture of feeling pretty weak and pathetic along with the continuation of the MS symptoms that have re-emerged and an agonising and relentless feeling of anger.<br />
I am raging at the world.<br />
Feelings of self-pity and 'poor me' wrack my mind and I am so bloody cross at everything.<br />
Every little thing feels like a slight and to those poor souls - family and friends who I love dearly - who are just getting on with their lives and haven't been in touch to see how I am, well I'm afraid you have borne the brunt of my wrath.<br />
If it is any consolation, I know I am being unreasonable and I also know that my anger is misdirected. But bear with me because at the moment, try as I might, I can't help it. I will sort my head out soon I promise. Normal service will resume soon.<br />
I just need some sympathy at the moment. I don't want to be strong. I want people to see I need a bit of TLC. Just for a bit. Just an acknowledgement would suffice.<br />
Boo hoo hoo!<br />
The depth of my self indulgence knows no bounds.<br />
Physically, I feel stronger than I did yesterday but I think a fair description of how I feel is: "Strength of the louse".<br />
Standing up for too long make me feel light headed. And I keep falling asleep at the drop of a hat.<br />
The scorched cheek syndrome has thankfully calmed down and yesterday I only took one anti-histimin and today (so far) none. So we are on the road to recovery.<br />
My appetite is still on over-drive which I'm blaming on the steroids but if I'm perfectly truthful is probably because I am feeling blue. I wish I was one of those people, who in times of trauma forgets to eat. Ha! If only. I have the opposite. In crisis? Reach for the crisps. Feeling low? Swallow back that chocolate. I'm like a cliche but hey, it's my cliche so I'm gonna embrace it.<br />
And on that note, I can hear the toaster so I'm going sign off. I've got to keep my energy up after all.<br />
PS. I have a new follower on Twitter. They make walking sticks. Funky walking sticks I may add but walking sticks all the same. I'm hoping I will never have to use their service.Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com0tag:blogger.com,1999:blog-7681090262354514558.post-92086092867540243742012-11-17T10:52:00.000+00:002012-11-17T10:52:32.763+00:00Big A - round twoThis week I underwent my second course of Alemtuzumab.<br />
This is my experience of it.<br />
<br />
<u><b>Day one</b></u><br />
Fear and dread were to two overriding emotions which gripped me as I walked through the ward doors. I had worked myself up into a bit of a state truth be told. And the fear was all related to the canula of all things. I didn't want it in me and I didn't want my veins to get sore like they did last year.<br />
The dread was because I knew the treatment was not going to be pleasant and I didn't want to feel awful.<br />
Now before you accuse me of being ungrateful, I know I am very lucky to be getting this treatment and I am fully aware that I am one of the lucky ones - but it doesn't stop that feeling of self-pity creeping in and moments of darkness starting to crawl around my head.<br />
But there I was, and it was time to get cracking.<br />
There was a bit of a delay in the actual treatment starting and I managed to eat a whole family size bag of wine gums before the dreaded canula had even been inserted. Something which I regretted as soon as the steroid was hooked up because the filthy metallic taste came back and haunted me for the rest of the day.<br />
Needless to say, along with the metallic taste came the increase in appetite and I managed to forage my way through various chocolates / biscuits / crisps and anything else I could lay my hands on.<br />
After an hour, came the actual drug and as I lay there for the next four hours I managed to eat more in between napping and getting my blood pressure, temperature and heartbeat checked every thirty minutes.<br />
Overall, the first day hadn't been a bad experience. That was until another MS patient getting his second dose of the Big A suddenly and without warning began having a terrible reaction to the drug.<br />
He seemed to be in an incredible amount of pain and was crying and moaning. The nurses all rallied around and afterwards I found out his temperature had rocketed. He was moved to a different ward and I didn't see him again. But it was very upsetting to see someone in such a state and it panicked me that I would also react in a similar way.<br />
That night, I began feeling quite nauseous and started getting 'scorched cheeks' but anti-sickness tablets and anti-histimins sorted me out. It was not an easy night's sleep though.<br />
<br />
<b><u>Day two </u></b><br />
Again the scorched cheeks plagued me on waking as did my increase of appetite but the treatment got under way pretty soon after waking and I managed to nap my way through it. I felt very tired.<br />
The reaction of the man the day before was still on my mind and I found out that he was doing ok and would be continuing the treatment but he would be getting it over eight hours rather than four. I felt very relieved for him.<br />
The treatment itself went pretty much as expected.<br />
It was later that I started to feel pretty awful. I had terrible nausea. The first anti-sickness tablet didn't help and I was given a second which although took the edge off didn't actually get rid of the feeling. I have to say I felt pretty dreadful at this point.<br />
I had a very disturbed night's sleep and the re-emergence of some past MS symptoms came back to haunt me - the worse being vertigo. It woke me in the night as I turned my head in my sleep and my brain felt like it was rolling around and around in my skull. It passed off but every time I moved my head too quickly, the feeling would come back.<br />
During the night, after one of the observation checks by the nurse, I went to spend a penny and through my half closed sleep eyes looked at myself in the mirror as I washed my hands. I was amazed to see that my nose and chin had developed a strange hue of red. In the morning, my cheeks had also succumbed to the colour. Thankfully an anti-histimin came to my rescue.<br />
<br />
<b><u>Day three</u></b><br />
The last day of the treatment couldn't come fast enough for me. I had suddenly found myself enveloped in a cloud of self-pity and it took all my energy not to cry at the slightest thing.<br />
My scorched cheeks continued to glow as the anti-histimins wore off and as well as the vertigo symptoms I was also finding it hard to focus my eyes.<br />
All of these past-symptoms were to be expected, I was reassured. It was very common for this to happen and it should wear off in a couple of days.<br />
The treatment began early. But this time there was no continuous scoffing of sweets - the nausea was too bad. Again another anti-sickness tablet was administered which took the edge off.<br />
Then suddenly as a young nurse who I had not met before came to take my obs, I suddenly broke down into tears. The poor girl didn't know what to do - which I was grateful for because everyone knows if you are too sympathetic to someone in tears, you can be trapped talking to them for hours about every woe. I apologised, said I was tired and managed to stop the crying. I was angry and annoyed at myself. I didn't know where this was coming from. The feeling of general unfairness and self-pity had started to take me over.<br />
Thankfully, as soon as the treatment was done, I was unhooked and allowed to go home. It was all quite sudden really.<br />
Home though didn't make the scorched cheeks or the nausea disappear and it was only the packets of drugs I was given that managed to make a difference.<br />
<br />
<u><b>Day one after the treatment</b></u><br />
Two words described my general mood - anger and resentment. All the old feelings about MS came to bite me again. I felt so bloody angry at the world and I felt so bloody awful due to the treatment.<br />
I didn't remember feeling as bad as this last year, but my husband says I was.<br />
I felt weak, I felt awful, I felt like I had been through the mill. My cheeks continued to blaze and I felt so lethargic. The nausea was there on and off and again I couldn't stop crying.<br />
It wasn't a good day. In fact I would go as far as to say it was one of my worst. Ever.<br />
<br />
<br />
<b><u>Day two after the treatment </u></b><br />
And now we are here on day two after the treatment. The vertigo is still there as is the poor eye focus. The scorched cheeks are ever present and I now feel like I am walking under water - everything is moving slowly.<br />
My patience is still at snapping point and I still feel rubbish. But at least I am starting to feel like there is a light at the end of the tunnel now.<br />
I realise the anger I have been feeling is partly because I want someone to acknowledge that I am having a shit time. I want someone to acknowledge that yes it is that bad actually. I want someone to acknowledge that this is ball-aching for me.<br />
But then maybe I should stop putting on a front when people ask me how I am doing and instead of telling them that yep, I'm doing great, I should for once be honest and tell them the boring truth that MS is a killer to try and get your head around.<br />
I know I am lucky in many ways but right now I am struggling.<i> </i>Really struggling.<br />
<br />Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com0tag:blogger.com,1999:blog-7681090262354514558.post-49783889608931734192012-11-09T14:01:00.002+00:002012-11-09T14:01:32.952+00:00My MS adventureTwo things happened to me today.<br />
The first was the realisation that in four days time I will be starting my second course of the Big A.<br />
The second was the realisation of how much has happened since June 2010 when I was given the first definite hint I had MS.<br />
<br />
So much has happened since that day when I spent an afternoon with my unborn son flourishing and fighting inside my body in a hospital ward with a sympathetic doctor called Ellie (whose kindness I will never forget and will always be grateful for) as I started wailing and mewling about the unknown and unpredicted future it looked likely I was facing now MS had reared its ugly head.<br />
<br />
That day several sympathetic cups of sweet tea were presented in polystyrene cups and remained undrunk (because pregnancy had created an unwanted and unexpected aversion to my favourite beverage) and hope and ambition turned (temporarily I am pleased to say) to despair and fright.<br />
<br />
Over the next months, the fear that my growing baby would be affected by the sensation loss I experienced from my toes, up and across my swollen belly to my chest was replaced by fear about how I would cope with a small infant.<br />
<br />
And then the guilt. The guilt spilled from every pore. It invaded every thought, every conversation, every breath I took. MS and guilt had taken over my very being.<br />
<br />
As if by magic, anger soon appeared. I raged. I cried. I hated. Oh how I hated. I became resentful and rebellious and impatient and generally a vile excuse for a human being.<br />
<br />
It built up inside. All of the emotions, all of the unfairness of it all, all of the self pity. And suddenly I was cast into a dark, dark place. Was it depression? Possibly. Was it a break down? Maybe. Whatever it was the pent up emotion and pain was finally released over two weeks in tears. With every teardrop that fell, a little bit of hope returned. With every tissue thrown into the overflowing bin, a bit more of me started to return. Pain, someone said to me recently, is weakness leaving the body and with every tear I shed, the emotional pain was relieved.<br />
<br />
Now I am here. I am me again. But this time I am me with MS. And you know what, I can cope with this. I have hope again. I'm going to be ok. I may not be the ok in the way I thought I would be before MS, but I'm going to be ok.<br />
<br />
And in four days time, as I lie on the hospital bed with a drip attached to one arm and a bag of jelly babies being devoured, I won't be dwelling on the hand I have been dealt. Instead I will be dealing with it. I will be coping with it. And I will be ok.<br />
<br />Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com0tag:blogger.com,1999:blog-7681090262354514558.post-28545857322847850382012-10-22T14:05:00.000+01:002012-10-22T14:07:33.502+01:00AcceptanceLast week I reached a stage where I finally feel I've accepted that MS is part of me.<br />
It happened without me even realising it.<br />
Someone from work - who works in a different department - asked me if my son would like to go to her son's birthday party in November.<br />
I replied that he would love to but he wouldn't be able to this year because I have been pencilled in for some hospital treatment so wouldn't be able to take him.<br />
"Oh dear, everything alright?" she asked.<br />
And then out it came.<br />
"I have MS," I replied. "And I'm getting some treatment which means my immunity will be compromised so am trying to stay away from situations where germs may lurk. Not that your house is dirty or anything..." *Backtracking*<br />
The words just came out.<br />
And then she asked me questions.<br />
And I answered without feeling uncomfortable.<br />
It was just so matter of fact. It was just so normal.<br />
For the first time, I didn't feel I had to hide. I didn't feel like I had to change the conversation. And I didn't feel self conscious.<br />
In fact, the conversation was upbeat and littered with laughter.<br />
To the point where someone else came up to join in the conversation asking what we were giggling about. And so I had to explain again. And again it was ok and pretty painless.<br />
Maybe it is because I am finally in a place where although I am still furious about being dealt the MS card, I have started to accept that it is here to stay.<br />
The dark times that have come and gone over the last two years have waned and I find myself laughing about it in what some might call a sick and twisted way but what I describe as gallows humour.<br />
And after that first breakthrough with my unsuspecting colleague, the floodgates opened up.<br />
I have started making plans in work explaining without any trace of self pity to those who need to know I have MS and am having treatment so things can't happen straight away.<br />
On another occasion, I found myself having a conversation with a woman who had just had her first year anniversary of being clear of breast cancer sharing the shock, horror and absolute desperation of diagnoses and its aftermath. We both found ourselves describing emotions that the other identified with making us both realise that although vastly differing illnesses, the impact on our sanity has been very similar.<br />
I don't know if I have accepted it for good or if my MS monster will throw something in my face to knock me off balance (literally and mentally).<br />
At the moment I feel calm. Long may it continue.<br />
<br />Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com0Cardiff, UK51.481581 -3.1790951.402471999999996 -3.3370185 51.56069 -3.0211615tag:blogger.com,1999:blog-7681090262354514558.post-7130301941744978912012-08-28T13:11:00.002+01:002012-08-28T13:11:18.057+01:00Big A shortage?Things have been pretty brilliant recently.<br />
I didn't delve too much into it in my last post, but I had been dealing with a bit of a mini breakdown.<br />
The realisation that I had MS had hit me in a BIG way and what with trying to convince the rest of the world that I was fine thank you very much and trying to maintain that same facade in my private life, it all became a bit messy.<br />
But I dealt with it.<br />
I cried. I felt sorry for myself. I moaned. A lot. I lay on the sofa watching rubbish day time telly and thought about things.<br />
Then I started to put it into perspective, and you know what, I feel ok. And feeling ok has made life so much easier.<br />
I've taken steps to stop my energy levels dropping so even my fatigue is starting to feel manageable.<br />
Don't get me wrong - life isn't perfect, but in this imperfect world I occupy, it's probably as good as it is going to get. And I feel at some kind of peace for the first time in a while.<br />
<br />
<ul>
<li>And then I was rocked.</li>
<li>And I am worrying.</li>
<li>And I feel angry all over again.</li>
<li>And it is all down to this:</li>
</ul>
<span style="font-size: x-large;"><b><a href="http://www.mssociety.org.uk/ms-news/2012/08/drug-reporting-positive-results-ms-temporarily-withdrawn-market" target="_blank">There's a shortage of the Big A</a>.</b></span><br />
<span style="font-size: x-large;"><b><br /></b></span>
Not content with having made a fortune first time around when the drug was first released to treat some forms of cancer, the drugs companies appear to be having a second bite of the cherry.<br />
They have kindly withdrawn Alemtuzumab until they can get a new licence to sell it as an MS drug.<br />
So this drug, which is helping so many people get on with their lives, is now in short supply to those who desperately need it.<br />
Who knows when the supply will be restored? It's like some kind of nightmare.<br />
<br />
You see (and now I am going to rant about why this is a really hard pill to swallow for me) I am now 35 years old. My husband and I would like another child but our plans have been put on hold because it isn't wise to have a baby within six months of having the treatment. Our plans are on hold because we want to get this treatment out of the way so we can concentrate on our family.<br />
I am/was due to have my second dose of the treatment in November. Six months after that we hope to be crossing our fingers that we find ourselves blessed with another child on-the-way. I will be 36 then. Time is ticking on. And who knows if we will even be lucky enough to extend our family but we hope so.<br />
Now we are in a position where my treatment could be delayed and this could mean we are forced to push back our plan to give our son a sibling. And at my age, I can't really afford to delay trying for a baby.<br />
I'm trying not to worry. But I am. In fact, I can't stop thinking about it.<br />
And I can't stop thinking about how getting richer seems to be more of a priority for some. And as a result, an army of people in the Campath Club, like me, who thought their life had been given back after it was snatched by the MS monster are now facing a world of uncertainty and despair again.Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com2tag:blogger.com,1999:blog-7681090262354514558.post-72885427903397271662012-08-06T11:47:00.000+01:002012-08-06T11:56:03.934+01:00The Campath Club and other thingsFunny how some days when you are feeling well and just getting on with the daily grind with nothing apart from the routine worries of 'where did I put my pen?' and 'I've run out of milk so no coffee for me' something can happen to make you suddenly be reminded that lurking under the surface is the beast of MS waiting to strike at any inopportune moment.<br />
It happened to me yesterday.<br />
I was working (yes it was a Sunday and yep I too think that working on a weekend should be banned!) and chatting (gossiping) to a colleague - let's call her Jemma - when someone who knew her but not me, came to join in the conversation.<br />
Without giving too much away, the chap - let's call him Malcolm - who walked uninvited into our heady mix of laughter and intrigue is, to put it politely, a bit - well a bit more than a bit actually - of an odd ball. Highly intelligent, fantastic at his job but sadly lacking in any social niceties. And to put it bluntly, by stepping into the little tete-a-tete Jemma and I were enjoying, the laughter and gossip (which was highly interesting I might add) ceased rapidly.<br />
And so the conversation turned into a work-mode one. You see there was a bit of a staffing crisis where someone had called in sick and I was attempting to drag some other poor soul into the office on a Sunday when all other right-minded people are enjoying a lie in with the Sunday papers and a big mug of coffee to stave off any remnants of wine/beer effects from the night before.<br />
The discussion turned to the person - let's call him Joe - who had called in complaining of food poisoning. I confess Jemma and I both had suspicions this may not actually be the truth...<br />
"Well," says Malcolm, "That's very unlike Joe to call in sick."<br />
"Why do you say that?" I replied.<br />
"Joe doesn't need to call in and pretend he is sick - he already has a fantastic excuse at hand. His trump card if you like."<br />
My curiosity was piqued.<br />
"Trump card?" I asked intrigued at what this fantastic excuse could be.<br />
"Yes," said Malc. "His wife has MS or something equally degenerative so he doesn't need to pretend he's sick, he can just wheel out the excuse his wife is on the turn."<br />
"...Oh... right," I heard myself say as I felt the crushing blow that I have MS hit me yet again. It was horrifying.<br />
Neither the charmless Malc or the lovely Jemma know I also have MS and I certainly didn't intend to enlighten them.<br />
But an uneventful day which had been rolling along pretty smoothly and one in which MS hadn't been on my mind at all suddenly came falling around me and I could feel myself analysing yet again the reasons why I have been unfortunate enough to be given this thing to deal with.<br />
I'm trying to stop myself dwelling on this before I fall head first into that pit of despair which I have only recently managed to climb out of and wash myself off so I won't bore you any more with my mind-tripping reaction to Malcolm's seemingly innocuous comments.<br />
So what else has been going on?<br />
Well one thing that has absolutely delighted me is that I have been contacted by people via email who like me are in The Campath Club.<br />
As I discussed with one of those emailers, it is like there is this secret underground movement of people who are about to / have had the Big A and when you finally make contact with one of them, no matter what other differences/similarities you have with them, there is this one huge bond and you finally feel 'I'm not alone!'<br />
I like being a member of The Campath Club - makes me feel like we're an army trying our best to battle this demon which is trying to destroy us.<br />
Let's hope our efforts are not in vain.Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com0tag:blogger.com,1999:blog-7681090262354514558.post-13587855236748720462012-07-06T08:50:00.000+01:002012-07-06T08:50:10.405+01:00The Big A: Round twoIt has been nearly eight months since I had my first dose of Alemtuzumab (Campath / Lemtrada) and overall it's been a success.<br />
No real symptoms to speak of - a couple of aches and pains coupled with the odd tingle but overall I've been pretty well.<br />
I could moan here about the endless fatigue that has plagued me but I won't because after a bit of a mini crisis last week where I was suddenly overwhelmed and found myself in a world of tears - where I was crying for no apparent reason... for days and days and days (and there was me thinking I had dealt with this thing emotionally.) <span style="background-color: white;">I took stock and realised I've been overdoing things in an effort to prove to the world (but more to myself) that MS can't stop me. Oh what a silly girl I've been. </span><br />
All that swollen red eyes and boxes of wasted tissues and for what? Well, actually for me to realise I need to slow down a bit. I need to do what I have to do in work and life but to stop overdoing things in order to prove to everyone that I'm not some kind of special case.<br />
For the first time in quite a while, I'm starting to feel a bit 'normal' again. I've managed to regain some energy and I'm actually feeling positive for the first time in an age.<br />
And now I am just four(ish) months away from my next dose of the Big A.<br />
I recently saw my neurologist. It's been the first time since I had the treatment but we both discovered that actually I had missed two earlier appointments - one just a month after the first dose in December and one in April - and all due to the magic of disappearing mail.<br />
It's a trick not even Paul Daniels can conjure up. Somewhere out there, just like the illusionist's doves are two appointment letters flying around. Only these two will never be pulled from a hat to reappear before a clapping and appreciative audience... tah dah! I've never liked magic tricks.<br />
Anyway, he seemed pretty happy with my progress and shipped me off to get about 300 (ok about 10) blood samples for testing. He told me I'd be having another MRI before the treatment began - I'm assuming it's to compare and contrast to assess the progress of my MonSter and said my next dose would be over three days rather than five.<br />
So being aware of the mystery of missing mail and with the hospital appointments telephone hotline now programmed into my phone, we're all set to go.Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com0Cardiff, UK51.481581 -3.1790951.402471999999996 -3.3370185 51.56069 -3.0211615tag:blogger.com,1999:blog-7681090262354514558.post-38738357260660320952012-06-21T12:37:00.001+01:002012-07-06T08:50:39.218+01:00Uneasy truce? Oh no sir!Recently I wrote how I had realised that MS had become my excuse for not doing things that before diagnoses I would have done. It was a tale of regret and grieving.<br />
But yesterday I discovered that MS is actually <i>sometimes </i>(And I only mean the once in a while, count your blessings for small mercies <i>sometimes</i>) good for something.<br />
It is absolutely brilliant at giving you an instant reason for some random, innocuous and not-serious health complaint that may strike.<br />
Take the common garden cold for example. Pre-diagnoses days, I would have sniffed my way limply into the chemist, bought a mountain of flu remedies and tissues and felt extremely sorry for myself while dabbing vaseline onto the end of my sore and red snout.<br />
I would have moaned to anyone who would listen that this wasn't just a cold - this was flu and they had better feel sorry for me.<br />
Now, when a cold strikes my reaction is this: "Bloody MS - I wouldn't have caught this cold if it wasn't for the MS." And I find myself angrily fighting the cold blaming it all on my old friend MS (which on this occasion hasn't actually done anything wrong). But it feels so good to remind my monster that I hate it and it can think again if it even thinks that its home in me is going to be anything but a dark, cold place to be.<br />
I'll give you another example. Recently I've been suffering awful achy knees. I've been moaning about it constantly.<br />
Have I been to the GP to discover the reason? No.<br />
Do I tell myself that it is probably an age-related thing? No.<br />
Does the thought that as a teenager I managed to strain the ligaments in both knees on separate occasions ending up on crutches both times and it is probably the niggling of these old injuries? No of course not.<br />
What I have done though, is during my moaning about how sore my knees feel is say: "Bloody MS - it's got to be something to do with that." Maybe it is, maybe it isn't.<br />
But yet again, I remind my MS monster that I seriously am not a good place to be setting up camp and that it needs to change locations fast.<br />
It's quite liberating to realise that for everything that goes wrong now, I have a fantastic reason to shout loudly into the face of MS that it needs to move on now, there's nothing to see here.<br />
And it is even better to remind my MS monster that we do not have an uneasy truce. Oh no sir! There is no truce at all. In fact there is only one four word sentence that sums up our current situation.<br />
We are at war.Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com0tag:blogger.com,1999:blog-7681090262354514558.post-35554428956779756662012-06-06T14:03:00.000+01:002012-07-06T08:51:33.878+01:00Fighting a losing battleRealising I am fighting a losing battle has never been a strong point of mine. But my MS monster has other ideas and is letting me know in no uncertain terms that sometimes I need to stop fighting and give up.<br />
It's the old fatigue again.<br />
It's finally won. I can't push on anymore.<br />
My shifts in work are pretty insane with the level of intensity needed and for the last few weeks battling through shifts I've noticed a couple of worrying things.<br />
Weird little black floating spots cross my vision. I keep seeing spiders climbing on me in my peripheral vision which has me panic hunting the imaginary beastie. Little electric shocks run down my arms into my hands. Driving home is an effort of untold proportions in order to keep my concentration on the job in hand. Most days, the 15 minute drive home is a total blur when I finally fall through the door and onto the sofa.<br />
I won't lie - it's worrying me a bit.<br />
Recently I attended a newly diagnosed with MS workshop. I can't say I was looking forward to it much. And my fears weren't without foundation. Seeing people with MS which was affecting their daily lives in a really negative way in terms of their balance, their mobility, their swallowing, their memory was quite breath-taking and got me wondering when it was going to get me like that.<br />
I sound selfish - I probably am. But quite frankly, this is my MS and I'll deal with it how I want to. (All said in a very whiney and snotty little voice.)<br />
Everyone there seemed to be dealing with their demon in their own way. Some seemed - on the face of it at least - positive and hopeful. Some seemed desperate for some kind of cure. Some seemed defeated while others seemed like they were taking on the fight of their lives.<br />
The monster was lurking in every one of the MSers there. The stand out observation for me was not one person there could understand what the hell they had done to deserve this thing intruding into their lives.<br />
But back to my current woes that fatigue is becoming more and more apparent in my life. At the MS day I learned there are such things as fatigue management workshops happening locally - something that I fully intend to embrace when the chance comes up. I'll let you know how I get on.<br />
Onto other things, I've just had an invite to another neurology appointment - wonder if it will involve another MRI scan? I'm quite interested to see if the Big A treatment has prevented any new lesions forming since I had the first round in November.<br />
So I'll sign off now - I don't feel too positive at the moment and for that I apologise. Hopefully when I say hello next time, I'll be feeling a bit more myself. Until then, I'll keep my upper lip stiff, my chin held up high and the very best of British attitude to stop me from falling apart.Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com0tag:blogger.com,1999:blog-7681090262354514558.post-36065830024514720262012-04-13T08:50:00.000+01:002012-07-06T08:51:56.355+01:00My MS excuseIt's been a while since I updated my blog. Since my return to work, my life seems to be one long roller coaster of getting up, work, going to bed, getting up, work, going to bed. And so the cycle continues.<br />
My energy levels are at an all time low and I am permanently tired.<br />
But it got me thinking.<br />
Until June 2011, I didn't know I had MS. I felt tired all the time, but I kept going because I didn't know it wasn't just tiredness but actually MS fatigue.<br />
In my pre-diagnoses days when I obviously had MS but didn't know I had it, I didn't allow myself to stop. I maintained a very active social life. I worked extra shifts. Sometimes on a Friday night, I'd volunteer to do the overnight shift after a full day of working using all of Saturday to catch up on my sleep and then by 8pm, I'd be on the bus to town to meet my friends and dance the night away stumbling through the door at about 3am.<br />
It seems like a dream when I think about it now - I was totally wiped out on a permanent basis but I kept going. I thought that everyone got tired like me and that it was completely normal.<br />
But now I have a reason for why I feel so half-baked all the time. Why I feel like I am functioning at under 100% the majority of my waking hours.<br />
And suddenly it has become a reason... no, that's the wrong word. It's become an <i>excuse </i>for me to avoid social occasions. It's become an <i>excuse </i>to opt out of things that I would have forced myself to do pre-diagnoses.<br />
This realisation has made me think that although it is a relief to have a diagnoses about the 'physical' symptoms of MS, it has actually had a really negative effect on my outlook on whether I can do something or not.<br />
I notice my automatic reaction to the possibility of a weekend away or a night out or a shopping trip is always to think: "I'll be too tired - I have MS you know."<br />
Sometimes, I'll speak the words aloud. Other times I'll agree to go to the said event and then pull out the day before citing those reasons of fatigue. Occasionally I'll go - have a blast and feel good I did something even if it did leave me feeling too wiped out to carry my handbag up the stairs on my way to bed.<br />
On analysing my reaction to this realisation that MS has become my fail-safe excuse to avoid doing things (I mean who is really going to argue with me that I won't feel awful if I do something they want me to do - mentioning my old friend MS has people recoiling in a horror of not understanding and bringing to life that at-the-moment hidden thing I have?) I am experiencing a whole range of emotions.<br />
I feel cross and narky at my own sappiness.<br />
I feel slightly miffed that I have let MS do this to me - I could do things before so why not now?!<br />
I feel guilty - guilty for my loss of the experience and guilty for not sharing that experience with people who wanted me there. Guilty for letting MS do this to me. Just plain old guilty.<br />
I just feel ever so sad and mourn that life I've lost and that part of me that would put aside my own body weaknesses to embrace life.<br />
I suddenly feel like I have allowed MS to change me. Instead of recognising I have MS and getting on with life, I have unwittingly let it creep into my very being and have let it alter who I am. And this despite my efforts that I would not allow this to happen.<br />
Will this realisation change my outlook? I hope so.Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com1tag:blogger.com,1999:blog-7681090262354514558.post-88586337718794727552012-03-13T14:16:00.001+00:002012-07-17T13:17:49.637+01:00Sick of the sick<br />
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<span style="font-size: 13px;">Being newly diagnosed with MS brings a huge head rush of emotions which need to be dealt with and over the last nine months I think I have gone through the seven stages of grief at being told this monster is now living and thriving in my body like some sort of parasitic alien.</span></div>
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I’ve clumsily dealt with:</div>
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1.<span style="font-family: 'Times New Roman'; font-size: 7pt;"> </span>Shock and denial</div>
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2.<span style="font-family: 'Times New Roman'; font-size: 7pt;"> </span>Pain and guilt</div>
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3.<span style="font-family: 'Times New Roman'; font-size: 7pt;"> </span>Anger and bargaining</div>
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4.<span style="font-family: 'Times New Roman'; font-size: 7pt;"> </span>Depression, reflection, loneliness</div>
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5.<span style="font-family: 'Times New Roman'; font-size: 7pt;"> </span>The upward turn</div>
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6.<span style="font-family: 'Times New Roman'; font-size: 7pt;"> </span>Reconstruction and working through</div>
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7.<span style="font-family: 'Times New Roman'; font-size: 7pt;"> </span>Acceptance and hope</div>
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It all sounds very American and therapy-like but it is exactly what I’ve been (and still occasionally find myself) dealing with to get my head around the fact that just as I live and breathe, so MS is part of me (despite my absolute hatred for it).</div>
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But I’ve now found that I have become... well to put it bluntly... a bit of an old bag when anyone close to me starts moaning that they’re not feeling very well.</div>
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Be it a few little sniffles to a full on bout of flu, I simply cannot find it in me to be all that sympathetic.</div>
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To be fair, even before my old friend MS made itself known to me, I kind of stood in the ‘tough love’ category of caring for my nearest and dearest when they were struck down with a bug. I was pretty good for a day or two, making the right sympathetic noises, making caring cups of tea and chicken soup and even resorted to forcing the patient to rest while I did everything. However this soft side of me never ever lasted longer than 48 hours and then I would start demanding they got up, had a wash and went for a walk to get some fresh air.</div>
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But now I simply cannot stand listening to anyone moaning they feel under the weather.</div>
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If someone starts blowing their nose noisily into a tissue, I feel disgusted by them.</div>
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If someone complains about having a headache, I throw some paracetamol at them.</div>
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If someone dares mention that they feel cold and shivery, I snap grouchily “Put a jumper on then!”</div>
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I’ve lost patience with the patients.</div>
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And it’s actually not a very nice thing.</div>
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All they want is some sympathetic words, someone to look after them for a few days, for the heating to be turned up... All I want is for them to go away and don’t come back until they have stopped whinging.</div>
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I just can stop myself from thinking: “YOU’VE NO IDEA WHAT FEELING ROUGH IS!”</div>
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I can’t bring myself to empathise with them because in truth I am jealous that all they’ve got is a cold. That all they’ve got is a temperature. That all they’ve got is a cough. And that in a few days or weeks time they will be completely well again.</div>
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Because this is all I want – to be completely well again. MS has other ideas. </div>Sian Gwilymhttp://www.blogger.com/profile/14941659495588729642noreply@blogger.com0