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MS, limitations and acceptance

tingly mum

I took my daughter to her swimming lesson the other day, and while I was standing around waiting I started to feel dizzy and faint. It had been a busy day, and taking them to swimming is always a bit of a struggle.

Five 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 the chair. I should have confidently taken it for myself, and been OK about it. I'm disabled.

Navigating an invisible illness 

It got me thinking about how tricky it is navigating an 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. 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 I’m not. I still question myself when I need to ask for help. It’s like the 18 year old me is screaming "You can do this!" at me. But it’s just not possible in this 38 year old MS-weary body.     

I came to the conclusion though that it's society that’s got in the way of me truly accepting my limitations.

Feeling like a fraud after my PIP assessment

Following my PIP assessment, I was told that I needed minimal help with mobility, even though I was struggling with my stick at the time. The fact that my condition is fluctuating was held against me. This has meant my disabled badge is no longer valid and has now expired.

I felt like the whole system had turned around and told me 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 this concept of 'not being ill enough to ask for help' has permeated into me so much that I've just stopped asking.

MS symptoms and blue badges

But 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. And car parks are never close enough to where I need to go. 

If I apply direct to the council for a badge I need to again 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 children is an impossibility.

Accepting my limitations 

But then, I’m just making assumptions now. Maybe all will be fine, and it won’t be as traumatic as the PIP debacle. So I’ve decided that I am going to fight the system and I have applied for a blue badge directly with the council.

I know what my limitations are now, and I’m putting my hand up and saying I need help.

It’s hard to ask for help, and despite what some people believe I don’t think people do it lightly. Having to accept that you have limitations is a tough old thing, but making peace with that is even harder.

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