Empire State of mind

Today I had a huge decision to make. Which version of myself I chose to present in my medical assessment with ATOS, on behalf of the DWP. Do I go in, with my usually sunny, positive disposition, and risk being told that I am obviously coping fine, or do I go in showing the vulnerable, exposed me that i generally keep hidden?

It’s a strange thing being chronically ill. On one hand you are seriously ill, but on the flip side, that is your ‘normal’  and you are still the person you have always been. For me, I hope that I come across as strong, positive and thankful for all the wonderful people and things I do have. I focus very much or the what I can do, not the what I can’t. I have never wanted to be a burden, or to have people to feel sorry for me, I only ask for a bit of compassion, and kindness.

Of course there are moments when I feel lost, and alone. I wonder how I can ever cope with this being ‘it’ for the rest of my life. In fact, one of those days lead me to here, doing this.

There is always a silver lining, if only you can find it.

I was incredibly grateful to receive such supportive, kind message this morning, from people I know and don’t, having read my posts thus far. The one thing that all the people I know told me, was ‘don’t just do your ‘im fine’ thing, will you?’. Which left me thinking, whilst good advice, why is it that to be taken seriously, as someone that is long term sick, you are expected to be permenantly miserable, and grumpy?

In no way would I criticise people that find it is how they best cope, but for me, it’s crucial that I keep fighting. That I never give up. I allow myself moments of self pity, of course, but my way of coping with the hand I’ve been dealt is to try my best to keep going, finding joy and pleasure where I can. In usual circumstances when meeting a Stranger, I don’t dwell on my health, I slip it into conversation but it’s rarely something that is focused on. It’s private and personal, and a long story that I have trouble re telling.

So I meet this lady, still undecided on which way I’m going to go. Then think  f**k it, I’m just gonna be me, whatever the outcome. Having had such a horrific experience previously, I have to say today the lady I met was lovely. She treated me with respect and dignity. I felt she cared, and  told me how refreshing it was to meet someone so empowered, despite my limits.

It turns out explaining a lifetime of serious illness, is actually pretty traumatic, so I needn’t have worried about which ‘me’ I presented. I ended up getting tearful anyway speaking about my previous life, and all the various negative impacts there are on my present and future. The Lady I met with was an Occupational Therapist, and they are incredible people. Their job is to give you a sense of occupation without employment, and to enable you to be as independent as possible. Their primary focus is the empowerment of the individual, and she told me that my team have done an excellent job with me.

Another amazing unsung service that the NHS provides.

I think that the point I’m really making, is that everything in life is about state of mind. People can go through extreme trauma and come out the other side finding happiness again, as long as they have the right support. Some of the policies being run through our latest government, aim at taking so much of that support away, along side perpetuating the image that disabled people should either be getting on with working without support, or being out of sight, out of mind.  God forbid you should reconcile your loses and try to live as normally as possible. Our great British empire’s current state of mind, is to cut away those that drag us down, to save the taxpayer’s purse.

So that would be people like me then….

Whatever happens in two months time when I find out my fate,  today I hope I stood up for all the people that still refuse to be beaten. To help change the image of ‘disabled’ even just a tiny bit. I’m still smart and funny, I’m so much more than my list of illnesses and I will never give up on life.

Let’s just hope it doesn’t royally backfire……

 

 

P.S. If you are at all interested in finding out more about any of my weird and wonderful illnesses, below is a list, there is endless information on the Internet 😄 I recently had a brain scan and they told me that my brain is pristine!! Hurrah something works…

Stills disease (juvenile onset polyarticular idiopathic rheumatoid arthiritus)

Fibromyalgia

M.e./ CFS

Pericardosis

Limited renal function

Constant pleuracy and sinusitis

Asthma

Execema

Hayfever

Lupus

Expressive dysphasia

The list will grow year on year now as my immune system get more compromised.