Thursday, 9 July 2015

The MS Liberation Post

Something odd happened the other day. Momentous, really. 

Something clicked, and I felt like I had finally accepted that I have wait.....accepted is the perhaps wrong word. I mean I have finally embraced it. 

But blimey, let's start from the beginning and settle yourselves in. This is understandably gonna be a long one.


It all started when I realised that unless I think 'practically' our holiday next week is going to be an absolute wash-out for me. I knew that I'd get one, maybe two days tops, where I was feeling ok enough to go out and have a bit of fun, but that was it. After all I'm still having a relapse and won't be fully recovered for a couple of weeks at least. But what to do about it? Well, the wheelchair is no longer practical if we go anywhere with the pram, because I don't have the strength to propel myself, so that's out. Or we could just not go out, and allow me to rest in the cottage, and just make do with having fun on the farm? But NO. 



I want a nice holiday with my family, full of smiles and me not stressing about my health!!
I'm fed up with missing out on things.
I'm fed up with not being able to go out with my children.
I'm fed up of not being able to have days out as a family because I know I'll get too tired.
I'm fed up with having to do online shopping all the time because I don't have the energy to go to the shops and browse.
I'm fed up with being scared to make plans to go out knowing that the likelihood is I'll have to cancel.
I'm fed up with EVERY YEAR wanting to go to the Balloon Festival but not going because I know I can't walk far enough.
I'm fed up with thinking we'll never be able to go on a family holiday abroad because I can't cope with the travel.
I'm fed up with not being able to travel anywhere or use public transport without being anxious.
...urrgh....the list goes on.
So I've done something about it.

I've purchased a mobility scooter.
And I'm damn happy about it.

Because despite being diagnosed for 14 years, I realised that I've always fought against my MS. I've always changed my behaviour to hopefully prevent things flaring up, and thus maintain a illusion of normality. Because who wants to look different and ill, right? 

But I've been missing out on so much of life.

I was so concerned with what people thought and how they would react to me using a stick, or being in a chair, that I just wanted to avoid it. Really, I've been hiding it away from people. But why?
When I was 18, stubbornly thinking 'I'm not going to let my MS stop me from living a normal life' was ok because when I had a relapse I'd be severely disabled and then when I went back into remission I pretty much went back to normal. So hiding away for a few weeks and making up for it and having fun afterwards was do-able. But over the years my MS has changed, and my periods of remission aren't as clear cut as they used to be, so this stubborn way of thinking really isn't helpful.

Now that I've seen the situation for what it is though, I'm kind of appalled by how much pressure and stress I have heaped on myself over the years. There are so many stigmas attached to being disabled in our society, that it's not surprising that I've struggled to come to terms, but it's stupid.  I've beaten myself up so much about having to let people down, because I can't do things, and I've felt paranoid about getting funny looks or confrontation about using my blue badge because MS can be such a hidden condition. But you know what, I've decided that despite what the scaremongers (*cough* Daily Mail *cough*) would like you to believe people don't. give. a. shit. People might stare and feel a bit sorry for me, or even judge me, but it's impossible to control what others are thinking, so why bother worrying? 

Also, any previous notion that I am protecting Lib from some great evil by pretending I can keep up with her, has been ridiculous. My MS has worsened because my life is so much more demanding now, and if I want to make the most of being a Mum, things need to change. Simple as that. Lib would much rather I be on a scooter but out with her more often, than have one fun day on my feet followed by 3 days of me being too ill to get out of bed. Being ill these last few weeks has taught me that my beautiful kids will carry on as normal whether I'm walking, in a wheelchair, on a scooter, or using a stick because they love me regardless. All they care about is whether I am happy. And I really haven't been happy because trying to fit into this 'normal' box I've created for myself has been exhausting. For too long I have been making things un-necessarily hard for myself, and I need to treat myself with more respect. 

So no more. No more hiding things away like it's something to be ashamed of. No more worrying what people think, or worrying that they won't understand why I might need to use a scooter one day and not another. That's just the way my MS is. And whereas before I would have been scared about confrontation, and felt like I needed to justify myself, now I would relish it so I could explain a few things about disability to the unlucky person!

At the end of the day, my friends and family couldn't give a monkeys about the fact that I'm disabled because they know that it doesn't define me as a person. All they want is for me to be happy and comfortable, whatever it takes. 

I finally feel comfortable with just going with my MS, and I'm not going to put the pressure on myself with trying to control symptoms. It's impossible with children around! Instead I'll just put things in place so that even if I'm having a bad day, or having a relapse, I don't have to miss out on life. I sounds so simple, it makes me feel like an idiot for not getting to this point sooner, but for what ever reason, that's just the way it's been and at least I can move forward now. 

So hazzaaaa! I'm going to sit on my mobility scooter with gay abandon, and go shopping, or go out for the day with my children, and if I catch someone staring, or frowning when I get off my scooter and put it in the car (because surely if I'm disabled I shouldn't be able to walk at all, right?!) I'm going to smile. Because I don't care. I'm out living life, not missing out on things, and despite my MS being worse than ever, I'm finally happy and comfortable with the way I am. 

I feel like a huge weight has been lifted. *sigh*

Going for a ride