On 26th November 2012 I became ‘officially’ classed as in recovery by the CFS/ME clinic.
I’ve been ‘recovering’ for a year. Pfft. (See my post from November 2012 here.)
It has become clear that recovery with this condition is more a state of mind than anything else. I was always aware that this state of ‘recovery’ could last years and perhaps the rest of my life, but until recently I didn’t want to have to believe that it’s true. Don’t insult my intelligence and tell me that I will get better. You don’t know that. Your hope and belief is lovely but it’s also unrealistic. I’m not asking you to be a pessimist, just to simply accept my illness for what it is; chronic. Yes some do recover but the majority don’t and I’m sorry if the truth bursts your fairy tale bubble. Aren’t I am misery these days?
I’m officially no longer classed as ‘severe’ but is that just so they can tick me off their list? Yes I am certainly better than I was in The Beginning and I no longer reside in our dining room but after filling in my latest ESA50 I am reminded just how poorly I really am.
These benefits form not short and sweet and in three years I have not been well enough to fill in any of these forms myself. I find them soul destroying and demoralising.
“Can you do this…” No. “Can you do that…” No
I am completely dependent. My mum writes and fills them in for me but just answering some of the questions or elaborating on certain points in completely exhausting and I really mean that.
The people who slate those dependent on sickness benefit and think we are milking the system have clearly had no experience of filling in these wretched forms themselves. And then there’s the medical assessment…
And while I know we cannot expect the welfare state to simply hand us financial support, the system seems to purposely work against us so as to deny us the support we need to simply survive.
I cannot afford to move out and live independently, nor can I save up my benefit payments to get a bit of money behind me. That’s not allowed and having a certain amount of savings means you are not eligible to claim.
We are branded and slated for applying for and asking for support. I was only 21 when I became ill but I had worked every school holiday, every weekend, some evenings after school, some mornings before university…I paid my way. I was not a shirker. It is a huge knock on one’s self esteem to suddenly have to rely completely on other people both financially and otherwise. It is laughable that the people at The Top are so far removed from the Real World that they simply have no idea what we, the masses, go through. Being poor isn’t a choice. Being sick isn’t a choice. And if it was, who would choose it?
When I graduated, probably one of the happiest days of my life, who would have ever imagined that the next bit of ‘writing’ I’d be doing was filling in the first benefit form? That’s not what graduates are meant to be doing. That’s not what I spent three years and twenty thousand pounds for.
I know and certainly hope that I am on the road to recovery but it’s a longer journey than I would’ve liked. Every single day I work hard to stick to the rehabilitation programme that the CFS/ME clinic gave me way back when. The last time I allowed myself to sleep in the day was in December 2010. That’s some seriously hardcore willpower my friends! (That’s not to say that other sufferers shouldn’t sleep in the day. Each of our cases is as unique as we are.) So often it would be easier to just sleep; to shut out the symptoms and let the fatigue win. I am often able to fall asleep and sleep thought the night now and all thanks to gently coaxing my brain into remembering that day time is awake time and night time is sleep time. Three years in and it’s still not great but it’s much better than it was and it’s good to see that some of the rehab programme is working.
I must cling to such silver linings. Like the fact that my family will look after and keep a roof over my head. And my friends try to understand as best they can. And people still include and invite me to join in.
People struggle with the concept of getting better. There is confusion from others when I am stuck in bed because they thought I said I was getting better? M.E. is far less black and white than that I’m afraid. It seems I’m heading in the right direction though, very slowly but surely.