10 years since my first dose

Hello there,

Long time no speak eh?!

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.

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. 

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.

This video from 22nd October 2011 explains in a much better way than I can about Alemtuzumab

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.

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. 

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.

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.

Although not my eye (mine has more wrinkles) when I get feel under the weather, my vision gets blurry (Pic: https://www.pexels.com/photo/extreme-close-up-of-woman-eye-256380/)

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. 

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. 

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.

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.

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. 

So enough was enough. 

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. 

Less of the lesions

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.

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.

How long things will last only time will tell. But for me, this treatment has been simply magnificent. 

Sian x

  

Five years on...

Hello!
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.
And in one word - GREAT!
Really great actually.
In the five years since the treatment, I can confidently say that I have had zero relapses. Zilch, nada, none.
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.
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.

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."
And it has been.
I have been given the gift of delay.
Not to delay my life you understand. No, I've been given the gift to the delay the disease. And I am so thankful.
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.
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.

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.
And I am still working full time in a pretty stressful environment which (most of the time) I am happy with.
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.

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.
But I've reached the magic five year point so no longer have to have those monthly blood tests. Amazing!
I actually paid very little attention to the whole blood test thing.
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.
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.
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.

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.
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.
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.

With every scan I have, I have to fight the rising panic which starts as soon as start thinking about it.
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.

And so that is that.

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.

Sian x

End of an era

Dear friends,
My first MRI scan since I had two rounds of Alemtuzumab treatment has almost brought me to tears.
But those tears are of joy because the scan was only totally clear of any new MS activity on my brain!!! Woohoo!
Yep, so far so good. The Big A has done what it said on the tin and put my MS monster into hibernation.
I don't know how long for and quite frankly any time at all is a bonus.
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.
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.
And this may well be one of my last blog entries...
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.
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.
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.
Maybe if life throws some more surprises in my direction, I will be back.
But until then my friends, good luck, good health and stay positive.
Au revoir, Sian x

Spinning around

Something amazing has happened.
But before I reveal all, let me take you back a bit.

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.  

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.
A short visit to the GP later I was diagnosed with something called labyrinthitis - an inner ear infection which can cause vertigo. 

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.

A year or so later and MS welcomed itself into my life.
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.
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.

So now I've filled in the gaps, let's skip forward to May 2013.

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.
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.

"It's all down to MS," I rage at my long-suffering husband.
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.
Oh how wrong I was.

A quick explanation of symptoms and the neurologist declares: "This sounds like an ear thing to me not an MS thing."
Apparently I had benign paroxysmal positional vertigo (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 Epley Manoeuvre.
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. 

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.

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. 
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.

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.
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.

Loosening the mind trip grip

Shhhh - I don't want to say this too loud, but I feel so convinced this time that I'm going to say it.
I don't want to make too much song and dance about it but I have to share.
Ok *deep breath* here goes...
I think I might have got through the MS mind trip!
There I've said it.
And now for the disclaimer.
At least I feel like I have anyway.
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.
But today it feels different.

And believe it or not, it has all got to do with Northern lass, all around beauty and marathon runner Nell McAndrew.
Ever since that fateful day in June 2011 when I was diagnosed with MS, exercise has not been on top of my agenda.
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.

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.
"I'll start again tomorrow" became my mantra.
And suddenly the 30 day shred became the 30 day slob.

Enough was enough. And today I decided to give Nell's DVD a whirl.
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.

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.

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.

So my conclusion is that after much soul searching I may actually have got through the MS mind trip.
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.

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.
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!

Handbag vodka and other things

I am ashamed at how long it has been since I last blogged. More so after my first 'group' meeting with some MSers last night.

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.

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.

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.

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.

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!

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.

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.
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.
Life is good. Long may it continue.

It's a MSsy business

Yesterday I met my first real life MS person.
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.
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.
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?
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?
And so the elation turned to dread and I quickly found something else to do that day.
But my MS friend didn't forget me as easily. And another invitation soon followed. This time a one-on-one.
By God this friend was persistent.
"Right," I thought, "I'll meet her for half an hour for a coffee. Job done."
And so arrangements were made.
But in the misery I have been loitering in recently, our coffee date was shoved into the recess of my mind and I forgot about it.
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.
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.
I was going to have to do it.
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.
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.
Nope. I didn't hear it.
After getting my coffee, I scanned the cafe. How do you find someone with MS?
I shamefully confess I was looking for someone with a visible disability. Someone with a stick, or a crutch, or a wheelchair.
But there wasn't anyone in the place who had any of those tools.
I sat down. And I text my friend. She replied "I'm coming in now" as I watched the door and spotted her.
The nervous knot in the pit of my tummy tightened as we greeted each other.
But you know what, it was ok. It was more than ok. It was good.
She was nice. She was friendly. She was normal. And I really liked her.
Our half hour coffee date went on for more than an hour.
We chatted about normal stuff. And about MS stuff. And about MS people we were both in contact with.
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.
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...)
She laughed. She thought it was funny.
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.
She well and truly popped my MS cherry - and I am glad she did it so gently.
Now I want to meet my MS online friends in person and I want to become part of the gang.
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.