Spider and the Fly

Sometimes I feel as if I am living inside a web; a spider's web with me as the hunted and trapped fly.

This morning I had a phone call from the JobCentre to talk to me about my ESA appeal. The person I spoke to was pleasant, helpful, charming.  He was trying to do his best whilst employed within a system which isn't working and is not 'person-centred' but 'finance-centred'. It doesn't matter that he seemed to genuinely care about what I told him about my condition and my ability, or inability, to work: he was obliged to spout the mantra about how the old system was based around what you couldn't do and the new system is about what you can do: blah blah blah.

I can do quite a lot of things. Even the brain fog and cognitive difficulties associated with M.E. don't mean I'm stupid. The point is, as I keep on saying, is that whatever I can do, I cannot do it for very long and I have to have frequent rests: otherwise I come to a complete standstill and relapse; become bed bound. This way of being isn't conducive to finding or keeping most jobs.

During the conversation, the JobCentre employee went through all the documents I (or DIAL) had sent in support of my appeal. It turns out that DIAL have forgotten to said all the supporting evidence that I worked so hard to get together before Christmas. It's all still in DIAL's filing cabinet.  I was also told, again, that probably the most important document the DWP could receive would be the letter from my GP supporting the reasons for my appeal. There is no such letter. The only document from my GP is a hastily completed, scrappy questionnaire where he has deigned to write five word answers and for which he charged me over £40. So I am trapped between an unsupportive GP, a benefits advice support service which is telling me one thing and doing another and a government body which doesn't see me as a person but as a target figure.

Everybody seems to be having a say in how I am, what I should do, how I should act and what's best for me....except me....and I feel powerless to change it because everybody else is in charge. Ultimately, of course, I am in charge of myself but my health, the 'bastard illness', always has the upper hand and yanks on the lines of sticky thread in the web, preventing me from actioning the feelings of frustration, anger, 'I'll show you' and making me feel miserable as well as ill.

What would it take for someone to listen to what I am saying ? This has been my experience almost my whole adult life. First it took nearly 30 years for someone to listen and believe I was physically ill instead of depressed or anxious or lazy. Now I have a doctor who believes I am ill (even though he will not agree with me on the exact diagnosis) but I have another group who believes I am still well enough to work at least 16 hours a week.

I know that this whole situation is bringing all sorts of old feelings to the surface. I don't know what to do with them. I have tried everything I know, over the past 40 years, to resolve these difficulties with my health and to be 'normal'. At this age, I know that the way I feel physically is just the way I am. I am not able-bodied. 

I am very strong mentally and emotionally so I have to deal with physical weakness and try to make a life for myself but I also feel like I am being made to look a fool when I know I am not a fool. 

I feel like a fly in a very sticky web and I know there are many more people out there like me. If only we could really rise up and make our tormentors see sense.