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.

Acceptance

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.

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.