Sunday, 23 December 2012

Round robin (of the last six weeks)

Hello there!
Firstly, let me apologise for my slackness at updating this blog.
The blame lies solely at the feet of an online shopping frenzy over the last few weeks in preparation for Christmas.
Thankfully I managed to get it done with all but three returns and two long visits to the sorting office.
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.
Since my last post, things have been getting better and better. My energy is almost back to full strength and I feel good.
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?
I have avoided meeting people up to now and have successfully managed not to catch any nasty germs which would have hindered my recovery. 
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.
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! 
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.
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. 
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.
I am already worrying about this conversation and I have a fortnight left on my current sick note. 
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.
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. 
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. 
So to my friends, may you enjoy a merry Christmas. And let's all hope for a peaceful future.
With love,
Sian x

Wednesday, 5 December 2012

Three weeks since round two

Not much to report.
I'm feeling less pathetic which is a joy.
The slight vertigo remains which is anything but a joy. It's a bit of a nuisance.
I'm still tired and like to have a little nap during the day but overall my energy levels are higher.
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.
I suppose it is a case of still not 100% but getting there.

Thursday, 29 November 2012

Alemtuzumab: The cynical business of rebrand and recost

In August, I posted a blog about the withdrawal from the market of the drug Alemtuzumab (also known as Campath and Lemtrada).
As anyone who reads this blog knows, Alemtuzumab is the treatment I have been undergoing as a way to combat MS.
So far for me it has worked.
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.
I feel better. I feel ok again. I feel I can look to the future.
I’ve just had my second (and probably last) dose of the drug.
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 100,000 people in the UK have MS.
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.
But the company which makes the drug, Genzyme has taken it off the market while it seeks a licence for it to be used to treat MS.
Cynically, this probably means the cost of the drug will increase. And fears are that it will increase to a cost unaffordable for the NHS.
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) 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.
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.
So how can Genzyme justify withdrawing the drug and then presumably re-releasing it with a heftier price tag?
According to its website: 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.”
It’s not just people like me – people who have MS who are dismayed by what is probably going to happen.
T – a neurologist who uses Alemtuzumab to treat some of his patients – commented on my earlier blog.
This is what he said:
“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. 

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....

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.
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.
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.
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.
But just because it is good business, doesn’t make it right.
Let’s just hope someone’s conscience is pricked into doing the right thing. And soon.

Tuesday, 27 November 2012

Two weeks since round two

Today is the two week anniversary of the start of round two.
How do I feel?
I feel ok.
I'm still suffering from a bit of vertigo but it is more of an annoyance than anything else.
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.
Overall I feel better than I thought I would.
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.
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.
So I've gone off radar from meeting up with people for a while.
To be honest, I don't really have the energy to go gallivanting so it's no hardship.
From this time last week, I feel 100% better but from this time three weeks ago I still feel pretty pathetic.
All in all, things are looking up but there's still a little way to go before I feel me at full strength again.

Wednesday, 21 November 2012

Day five after round two

Every day I feel more myself.
I am still pretty weak and pathetic and standing for too long makes me feel lightheaded but I feel so much better.
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.
But that is fine, I am happy sitting in the warm house watching rubbish telly and eating.
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.
I have put the anti-histimin tablets into the bathroom cabinet now I no longer need them.
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.
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.
But you know what, it is amazing what effect time can have.
All of a sudden I feel peaceful again. I feel calm and I have started to laugh again.
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?!
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.
I was in a dark place both physically and mentally but things are looking brighter.

Monday, 19 November 2012

Day three after round two

This 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.
I am raging at the world.
Feelings of self-pity and 'poor me' wrack my mind and I am so bloody cross at everything.
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.
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.
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.
Boo hoo hoo!
The depth of my self indulgence knows no bounds.
Physically, I feel stronger than I did yesterday but I think a fair description of how I feel is: "Strength of the louse".
Standing up for too long make me feel light headed. And I keep falling asleep at the drop of a hat.
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.
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.
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.
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.

Saturday, 17 November 2012

Big A - round two

This week I underwent my second course of Alemtuzumab.
This is my experience of it.

Day one
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.
The dread was because I knew the treatment was not going to be pleasant and I didn't want to feel awful.
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.
But there I was, and it was time to get cracking.
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.
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.
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.
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.
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.
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.

Day two 
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.
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.
The treatment itself went pretty much as expected.
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.
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.
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.

Day three
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.
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.
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.
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.
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.
Thankfully, as soon as the treatment was done, I was unhooked and allowed to go home. It was all quite sudden really.
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.

Day one after the treatment
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.
I didn't remember feeling as bad as this last year, but my husband says I was.
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.
It wasn't a good day. In fact I would go as far as to say it was one of my worst. Ever.

Day two after the treatment 
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.
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.
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.
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.
I know I am lucky in many ways but right now I am struggling. Really struggling.

Friday, 9 November 2012

My MS adventure

Two things happened to me today.
The first was the realisation that in four days time I will be starting my second course of the Big A.
The second was the realisation of how much has happened since June 2010 when I was given the first definite hint I had MS.

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.

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.

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.

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.

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.

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.

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.

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.

Monday, 22 October 2012


Last week I reached a stage where I finally feel I've accepted that MS is part of me.
It happened without me even realising it.
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.
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.
"Oh dear, everything alright?" she asked.
And then out it came.
"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*
The words just came out.
And then she asked me questions.
And I answered without feeling uncomfortable.
It was just so matter of fact. It was just so normal.
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.
In fact, the conversation was upbeat and littered with laughter.
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.
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.
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.
And after that first breakthrough with my unsuspecting colleague, the floodgates opened up.
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.
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.
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).
At the moment I feel calm. Long may it continue.

Tuesday, 28 August 2012

Big A shortage?

Things have been pretty brilliant recently.
I didn't delve too much into it in my last post, but I had been dealing with a bit of a mini breakdown.
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.
But I dealt with it.
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.
Then I started to put it into perspective, and you know what, I feel ok. And feeling ok has made life so much easier.
I've taken steps to stop my energy levels dropping so even my fatigue is starting to feel manageable.
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.

  • And then I was rocked.
  • And I am worrying.
  • And I feel angry all over again.
  • And it is all down to this:
 There's a shortage of the Big A.

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.
They have kindly withdrawn Alemtuzumab until they can get a new licence to sell it as an MS drug.
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.
Who knows when the supply will be restored? It's like some kind of nightmare.

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.
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.
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.
I'm trying not to worry. But I am. In fact, I can't stop thinking about it.
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.

Monday, 6 August 2012

The Campath Club and other things

Funny 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.
It happened to me yesterday.
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.
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.
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.
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...
"Well," says Malcolm, "That's very unlike Joe to call in sick."
"Why do you say that?" I replied.
"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."
My curiosity was piqued.
"Trump card?" I asked intrigued at what this fantastic excuse could be.
"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."
"...Oh... right," I heard myself say as I felt the crushing blow that I have MS hit me yet again. It was horrifying.
Neither the charmless Malc or the lovely Jemma know I also have MS and I certainly didn't intend to enlighten them.
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.
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.
So what else has been going on?
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.
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!'
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.
Let's hope our efforts are not in vain.

Friday, 6 July 2012

The Big A: Round two

It has been nearly eight months since I had my first dose of Alemtuzumab (Campath / Lemtrada) and overall it's been a success.
No real symptoms to speak of - a couple of aches and pains coupled with the odd tingle but overall I've been pretty well.
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.) 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. 
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.
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.
And now I am just four(ish) months away from my next dose of the Big A.
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.
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.
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.
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.

Thursday, 21 June 2012

Uneasy 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.
But yesterday I discovered that MS is actually sometimes (And I only mean the once in a while, count your blessings for small mercies sometimes) good for something.
It is absolutely brilliant at giving you an instant reason for some random, innocuous and not-serious health complaint that may strike.
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.
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.
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.
I'll give you another example. Recently I've been suffering awful achy knees. I've been moaning about it constantly.
Have I been to the GP to discover the reason? No.
Do I tell myself that it is probably an age-related thing? No.
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.
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.
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.
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.
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.
We are at war.

Wednesday, 6 June 2012

Fighting a losing battle

Realising 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.
It's the old fatigue again.
It's finally won. I can't push on anymore.
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.
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.
I won't lie - it's worrying me a bit.
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.
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.)
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.
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.
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.
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.
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.

Friday, 13 April 2012

My MS excuse

It'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.
My energy levels are at an all time low and I am permanently tired.
But it got me thinking.
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.
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.
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.
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.
And suddenly it has become a reason... no, that's the wrong word. It's become an excuse for me to avoid social occasions. It's become an excuse to opt out of things that I would have forced myself to do pre-diagnoses.
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.
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."
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.
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.
I feel cross and narky at my own sappiness.
I feel slightly miffed that I have let MS do this to me - I could do things before so why not now?!
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.
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.
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.
Will this realisation change my outlook? I hope so.

Tuesday, 13 March 2012

Sick of the sick

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.
I’ve clumsily dealt with:

1.       Shock and denial
2.       Pain and guilt
3.       Anger and bargaining
4.       Depression, reflection, loneliness
5.       The upward turn
6.       Reconstruction and working through
7.       Acceptance and hope

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).
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.
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.
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.
But now I simply cannot stand listening to anyone moaning they feel under the weather.
If someone starts blowing their nose noisily into a tissue, I feel disgusted by them.
If someone complains about having a headache, I throw some paracetamol at them.
If someone dares mention that they feel cold and shivery, I snap grouchily “Put a jumper on then!”
I’ve lost patience with the patients.
And it’s actually not a very nice thing.
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.
I just can stop myself from thinking: “YOU’VE NO IDEA WHAT FEELING ROUGH IS!”
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.
Because this is all I want – to be completely well again. MS has other ideas. 

Friday, 24 February 2012

Back to the grind

I have just completed my first week back in work after 14 months of maternity leave (with a bit of annual leave thrown in).
This time off has been pretty life changing.

  1. I had a beautiful baby boy who makes me laugh every day and who I love so much.
  2. I got told all these weird things that had been happening to my body was down to MS.
  3. I had some treatment which could halt MS in its tracks, for a little while at least.
I'm sure you can imagine there has been some dark times, magical times and hopeful and hopeless times that I've worked my head around.
Sometimes when I look back at this time, I cannot actually believe these things have happened to me - and it's a bit of a head spinner.
So on my return to work as a journalist in a busy newsroom, I was expecting... I don't know, something *different* I suppose. But I've been amazed that actually nothing seems to have happened.
There are a few new faces, the old faces are, well, older looking, and the prices in the canteen have increased, but in essence everything is just the same.
It's weird. 
People in the office are still complaining and moaning about the same things they were complaining and moaning about 14 months ago. And the answers they get to the questions they ask about their complaints and moans are the same.
In equal measures I find it comforting and depressing.
Comforting because in this MS world of uncertainty, there is one huge solid I can rely on. Something that I can use to define and identify who I am.
Yes, I'm now a mum. And yes, I'm now a wife.
But my career and what I do is something that is totally, utterly and completely me.
It frightens me, that if I get a relapse which affects my arms and hands, I may not be able to type and therefore will see part, a huge part, of my identity (as a print journalist) get taken away from me by MS.
It scares me, that if I get a relapse which affects my legs and balance, my colleagues will start to look at me differently.
At the moment, I have a reputation as the 'office noise' which I am happy to have. I have a reputation as someone who is pretty feisty, good fun but also deadly serious and passionate about my work and if I do say so myself, someone who is bloody good at their job. 
I don't want to be known as that 'girl in the newsroom with MS'.
So my old friend MS is taking a back seat in my priorities. It can sit where it is quietly and without making a fuss or it can take a run and jump because I'm fed up of it taking over my life and thoughts.
I feel like I've got some certainty back with my return to work and although I never thought I would say it... it's great to be back (even if nothing there changes)!

Wednesday, 8 February 2012

Stressing out

I'd love to write something that will be intriguing, inspiring and revolutionary in the fight against MS but my old friend has been so quiet lately that I'm starting to wonder if it has gone into hibernation.
It's a good thing. I've been feeling happy, healthy and 'normal' and it is great. Long may it continue.
However, I fear that things may be about to alter the status quo with my impending return to the land of work after a year of maternity leave.
My job is stressful, full-on and can leave me buzzing with negative (sometimes positive) thoughts I find hard to banish when I am trying to sleep.
Stress is apparently a trigger for my old friend to wake up and shout out: "Coming out to play?" so I am feeling a little apprehensive.
I am determined to be one of those calm, sandal-wearing, chilled out souls when I get back to the grind but I know this dream will be laughed and mocked at by my alter-ego working self. I'm determined to do some kind of class like pilates or yoga but after a 10 hour shift I think this will also be something that is sidelined for an hour slobbing on the sofa in front of the box grunting conversation with my long-suffering husband.
So who knows what is going to happen when I get back to the office. Things will either be A-OK or my old friend might decide to join in the fun and make life hard. I'll let you know.

Wednesday, 25 January 2012


Isn't it great when you wake up from what should have been a lovely refreshing nine hours of deep sleep only to feel absolutely shattered, minus any energy and engulfed with a general feeling of fed up-ness?
My old friend MS has decided that after the miracle of the baby sleeping straight through for the last six nights that I have got too used to feeling raring to go on waking and that it is definitely time for it to remind me that it is boss and the best way to do that would be to give me a delicious dose of fatigue. Brilliant.
Now I know many with MS already know exactly how I feel but for those lucky enough not to realise what fatigue is, let me explain.

  • I don't feel tired - I feel absolutely and utterly exhausted.
  • I don't feel a bit weary - I feel like I've been trekking a mountain for the last three days. Without a break.
  • I don't feel like I need to put my feet up - I feel like my legs will collapse under me if I stand.
  • I don't feel like I can't be bothered today - I feel like if I did, I would die.
  • I don't feel like I've had a late night with a bottle of wine - I feel like I was beaten around the head with the bottle and then kicked in the face and forced to stay awake for three nights straight.
  • I don't feel like going up the steps is a drag - I feel like the steps are so steep I will need a pulley to help me.

The thing is with this fatigue is that when you tell people without MS you feel tired, people without MS relate it to when they feel tired... but is it SO different.
In fact it is so different that I am getting too tired to explain any more.

Thursday, 19 January 2012

Week seven and eight after the Big A

Eight weeks after the Big A treatment, my immunity should now be back to full strength and my old friend MS should be kept at bay.
These last two weeks I seem to have turned a corner. I finally managed to shake off the bug which had been plaguing me for I don't know how long and I started feeling 'normal' again.
The bug had seen a bit of return of the MS symptoms I've had in the past such as feeling very dizzy when I lay down or stood up and my grip had become very weak which left me feeling quite flat about things.
But apart from that, I've been feeling ok generally and the symptoms haven't been that unbearable.
I've had my second monthly blood test and now I'm just waiting to see what happens next.
My guess is that I'll hear from the MS nurse or the neurology people at some point soon to see how I'm getting on... or I may not hear from them until I'm due for my second dose of the Big A in ten months time.
So overall, this whole treatment hasn't been as awful as I was expecting it to be.
I have learned a few lessons though which I will be putting into place for the next dose and among those are:

  • Avoid people with colds or any other bugs at all costs
  • Do not assume my weakened immunity be back to full strength before eight weeks
  • Remember it will take AGES to get over a bug until that eight weeks is up
  • That refusing to see people because they are ill is not rude, it is sensible
  • That if I find myself in a situation where I am in close contact with a buggy person, to leave...
  • ...And not feel bad about it
  • Do not listen to non-medical-people who try and convince me that after three weeks my immunity will be ok. It won't be.
  • To make sure I'm not rushed to feel better immediately after treatment
  • To rest and recuperate for as long as I need to
  • To be as selfish as I need to be to let my body get over the treatment.

I'll let you know how I'm getting on.

Tuesday, 3 January 2012

Week five and six after Big A

Apologies for the slackness in my blogging. I shouldn't moan, but I will. The reason for the silence has been:

1. Christmas and New Year festivities
2. The evil bug from hell still hanging around
3. A very snotty baby

I have been feeling pretty rough over the last fortnight, fighting this cold has really taken it out of me and I simply cannot seem to shake it. I fear I will always have this runny nose, cough and general lethargy. I also fear that people will start calling me by a new name... Phlegm Sian. (I'm sorry, too much detail. I have disgusted myself.)
It is hard to tell you how I am feeling post-the big A because I am so wrapped up in the misery of this cold.
But on a couple of positives.
I cooked a three course Turkey roast for eight people on Christmas Day. And on Boxing Day, I managed to cater for another seven. And I didn't collapse from exhaustion until a couple of days later. So the earlier fatigue that came with the Big A seems to have abated.
In fact, apart from the lingering bug which maybe is taking longer to shift due to my compromised immunity, I feel pretty much ok. I've had no reactions / no relapses / no negative effects.
Hopefully the next two weeks will see my immunity return properly and I can kick this bug in the head!