The Beast Vs The MonSter.

One of the hardest thing about MS is the lack of control. The unknown. As I've mentioned here before, I've a history of mental health problems. BPD to be precise. In the past, the BPD part of me, has always really struggled with uncertainties in life. Now, here this Beast has been thrust upon me, who can come and visit any time and wreck everything.
Every single plan I make, is made in the knowledge that MS has the capability, at any time to come along and quash it.

Everything from saying 'I'll Cook Tonight Honey' to 'Let's Go On Holiday Next Summer'.

There is the day to day fluctuations, one day I might wake and symptoms will feel relatively mild. I might be able to go out in the day AND the evening if I'm lucky. Another day, I might wake up and struggle to make it from bed to sofa.
You can just about get used to the day to day fluctuations by pacing yourself (a technique I practised in the Mindfulness sessions). I never over plan, I always under plan - then if it's a good day I'll see if I can make last minute plans.
Then there is the wider uncertainty of relapses. Looming on the horizon, like an axe swinging above my head ready to drop and cause damage any time. I am hoping this feeling will recede somewhat if I manage to go longer without a relapse on the Tysabri. But for now, it is there, like an ominous grey cloud on a hot summers day.

People with progressive MS often say they don't envy the unpredictability of relapse remitting MS. I can see what they mean. Although I personally do not envy those with progressive MS in the slightest.

I have my access course starting in September. I AM excited about it. But MS looms, threatening to destroy it. It's no different to having mental illness looming really. It's just that with mental illness gives more of an illusion of control, because you always hold this belief that somehow you have a choice in it, even though you damn well don't. But because it is 'of the mind' you seem to think the mind can somehow keep the control and sway the power in the direction it really wants. However experience has taught me over the years, that mental illness has access to the same licence as MS when it comes to being able to come along whenever it wants and disrupt life.

Don't get me wrong, I am happy 'n all. In fact, I am fucking surprised and how well I have coped with this MS lark. For the reasons above, the uncertainties, which before I have never quite coped with in life.
I think it was a mixture of being mentally strong enough at the point the diagnosis came along, and it being a real do or die situation. Everyone expected me to go totally off the rails, I expected I would if I'm honest. And I didn't.
Now that does point to a certain element of self control in the situation of mental illness. Maybe there is to some extent.......but it isn't anywhere near as simple as saying 'I am going to cope with this' and therefore coping with it. Sometimes you just can't no matter how hard you try. Sometimes you can.
Again, comparisons can be drawn here with MS. MS is out of my control, for the most part, but there are still things I can do to give my body the best chance of going longer without a relapse.
With both mental illness and MS, all you can do is arm yourself as much as possible against each Beast, but ultimately - when they decide they want to come out and play, that is what they do. You have to work hard to make sure you are as strong as you can be in order to try have the best possible outcome when they do decide to rear their ugly heads.

The mental health things I've been through in the past probably gave me better capabilities to deal with the MS. I was armed with years of advice from various therapists running through my head.
It wasn't easy, but it wasn't the crisis that it at one time, would have been.

So yes, MS is hard because, aside from the physical challenges, the uncertainty and unpredictability is a huge mental challenge. However it also brings many rewarding aspects to life. So much of my life has been changed by MS, but if you wrote them all out in a list I am pretty sure the good side would beat the bad. On the bad side would be 'I have Multiple Sclerosis', which granted is pretty damn crap. But on the good side would be a list much bigger in numbers than those four little words.

Maybe for my next post, I will compile said list ;)

New Life Begins Here.

I had my interview for an Access Course yesterday, that I want to start in September. I've wanted to go to Uni for years but it's always seemed such an overwhelming goal, to give up my job and bite that bullet. Now I've lost that job anyway. I'd been browsing through jobs and all the ones I could do with my limited qualifications were boring boring boring. I really had to think to myself 'is this all I want from life?' 
The answer was no.
The next question was 'how do I get more?'
The answer was further studying. 

So I started seriously looking in to ways to do this, and an Access course seemed the best route considering my background with education. (Those who've read my Spartacus blog post will know I left school at 14 with no qualifications whatsoever.)

Luckily, in 2001, I went to college and did an English GCSE. I've never 'used' it since, in that having that alone as a GCSE has never come in to play. Now, it does. For the Access course you need to already have either maths or english GCSE. I've was initially under the impression I would need to do maths alongside the access course. My maths is soooo bad, no, let me rephrase, my numeracy is sooo bad. I decided to undertake a numeracy course under the 'skills for life' scheme to prepare for the seemingly unavoidable maths GCSE. I had an assessment a few weeks ago and have done two weeks of the course (is just one evening a week). 
Having now researched the university courses I want to do, none of them require it. 
So the best news of the day, I don't need to do a maths GCSE at the same time as the access course!! Wooo! 
The second best news of the day, is I got accepted on to the access course. 

The level of help available at the college is simply astounding. When I turned up for the interview, there were dozens of people waiting for various 'welcome events' in a corridor, no seats of course. I managed to find a small window sill to perch on and rested my chin on my stick.
A lady then came along and said to about 5 of us who were waiting for the Access course interviews to follow her. We went down a few corridors and I was trailing behind, I was about to loose them as they turned yet another corner when this other woman, who I'd never seen before, came up to me and said 'Are you Sarah?' Wow, the relief that came over me at that point.
She stayed with me throughout the interview, literacy assessments and everything. She is going to sort out a scribe to take notes for my during lessons, a carparking space wherever I need it that is closest to where I am having classes that day, a key to the lifts, longer time to sit exams if required, a padded and high backed chair. 
It was all done with such ease and no hint of patronising. I didn't have to ask for any of it (in fact I was resisting some of, particularly the scribe) but I am simply overwhelmed by the support available. I don't want to appear different to the other students by having a support worker sat with me in classes, but they soon allayed my fears about that. The said the support worker would just be like part of the class, taking part in debates etc. In fact the support worker seemed so keen to sit in on this course she was chomping at the bit to have me accept her help! 
I decided to put aside my memories of school, of being bullied because I had a learning support assistant attend every lesson with me. That was for entirely different reasons though (ones I didn't agree with at the time and still don't) and with an entirely different sent of people. A group of 30+ 14/15yr olds are going to be generally much less accepting than a smaller group of mature students. 
So I accepted all the help they offered. I am still not sure on a scribe, but having done a short written test before the interview my arm was very weak and painful, so I thought maybe it wouldn't be such a bad idea.

I then did the literacy test and flew through that, beating myself for getting one wrong, only to be told it was a very good score, so that was a confidence boost.

There is however, one blot on the landscape, how the hell am I going to pay for all this. Tuition fees aren't a problem, (there is enough help available for them) but how will I pay my bills? The course is technically full time (16hrs a week at college, 16hrs at home) and I've been told that DWP often turn one down for ESA if you are doing what the college label a full time course. 
Money schomey. I WILL do this. I CAN do this. 


And why is my life going in this direction? Because of MS. Every cloud and all that.