Battling the System and Accepting Limitations

I took Lib to her swimming lesson yesterday, and while I was stood around waiting (because there are never enough seats there) I started to feel a bit faint. It had been a busy day, and taking them up to swimming is always a bit of a struggle. 

5 minutes later someone stood up from their seat to leave, and after looking around to see if anyone was going to take it, I swooped in and plonked my bum down. 

But, I ask you? Why did I do that? Why did I look around to check?  I needed it. I should have confidently taken that chair for myself, and been OK about it. I'm disabled.

It got me thinking about how tricky it is navigating a invisible illness. I was automatically checking for anyone older who may need it, even though I was in desperate need. I was so concerned about not looking rude, I was willing to bypass my own health. Looking 'well' and not appearing disabled means you put yourself out there for rudeness and glances from people, automatically assuming that I'm well and taking up a chair someone else may need. I felt like I needed to turn round and say to everyone "it's alright, I have MS" - which is a sorry state of affairs. 

Have I actually come on at all in 20 years since my diagnosis? I feel like I'm better at accepting my limitations now but maybe not. I came to the conclusion that it's actually the way society is that has got in the way of me accepting my limitations. 

After all, we are run by government guidelines that, following my PIP assessment (whereby I was struggling with my stick because I was so run down from the stress of it all) that I needed no mobility help at all. 

This has meant my disabled badge is no longer valid and has now expired.

I feel like the whole system has just turned around and given me the finger, because according to them I'm fit and well and can cope. But I can't. How is that supposed to make me feel?

It makes me feel like I'm a fraud and a charlatan if I take a chair in a swimming pool viewing area when I'm feeling ill. It makes me feel anxious and self conscious about just looking out for my own health when I have an incurable disease. According to the government I shouldn't be struggling, and if I am then maybe that's a failure on my part. I feel like I get it shoved down my throat, this concept of 'not being ill enough to ask for help', that I've just stopped asking for help. Which I guess is what they want, so the system works. Hurrah for them!

I've even tried to get in touch with the hospital appealing for a letter to go with another blue badge application, but I've had no luck. I mean, they are insanely busy, but I was hoping that if anyone would understand then it would be them.

I'm welling up now, because it all just feels so helpless sometimes. 

Without a blue badge I can't guarantee that I can park close and be able to walk to and from places without pain or stiffening up. I can't go into the city centre, because I know I won't be able to park on double yellows if I need to for lack of parking and car-parks are never close enough to where I need to go. Again, if I apply direct to the council for a badge I need to go through a physical assessment and I'm somehow meant to illustrate that on some days I can't walk, and others I can. I guess their answer is, "well only go out on the days when you can", which for a disabled mother with two young children is an impossibility. 

Huh. Writing this has actually made me want to fight this. Perhaps I should write a letter direct to my consultant? Maybe not all is lost. I should try and battle the system. This need in society to be thinner, fitter, more beautiful, richer, healthier (the list goes on) is doing my head in. We're constantly told we are not good enough. And if that is because of someone incurable like MS then it's just simply unfair. 

 I AM GOOD ENOUGH!