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They have kindly withdrawn Alemtuzumab until they can get a new licence to sell it as an MS drug.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.

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.

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.

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.

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.

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.

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.