I'm here with no particular reason to post. So the words will tumble out tonight.
So here I go.
Still I haven't returned wheelchair services calls. They keep leaving messages on the phone, which I don't pick up. My son informs me of them. 'They want to know if you want a right or left handed power chair' silence. I can't process any of it. I want to ring really I do and explain my muddled thoughts. Coming to terms with this is sending me to troubled places in my mind. . My home is my sanctuary. Its the place where my family and I live our muddled life. Perhaps I feel guilty. I am not paralysed afterall. Pain is a major factor with EDS. I can walk but before I walk it hurts big time. But my house is small and why are they asking if I need a right handed one or left before the wheelchair environmental assessment. My social phobia is grabbing me round the throat big time. I didn't realise I was so adverse to 'strangers' in the house until now. I know they are there to help I know this. Perhaps I should ring them and say it would be more realistic to start with an attendant wheelchair to see how I get on? I actually am struggling with the stupid stress this is causing.
The other telephone message repeat - is from the OT. Now I know I need a stair lift and more. But I am over worrying? Probably because of the current trend in the UK of making out the disabled are fakes.
I accept that having written the above it may appear that I am neurotic needing the services of a psychiatrist rather than OT or wheelchair services. Perhaps I am. In truth I long for the impossible. Financial independence. Then I would not have all this unnecessary worry. Because like it or not the not returning calls thing (which obviously means I am not answering the phone) means I am getting in a state probably for no reason. I keep saying to myself, stop ringing me up, write a letter with an appointment. Why is the latter acceptable?
The only benefit I receive is DLA. Which I completely deserve. What is happening in the UK at the moment. Am I the only person with a disability who feels like a scrounger. I have never felt this way before. Could it be that I need to stop all outside contact, so that I am not bombarded with news overload on how the disabled of Britain appear to be the cause of all money problems the country suffers. I am a rational reasonably intelligent person, I know this is not true. So why do I feel this way. I am beginning to think that the whole attack on the disabled of Britain has caused some bizarre sort of reactionary depression. Normally I am happy go lucky. My family and I are pretty insular, we muddle on. Laughing at our lot. I had thought I cope reasonably well with what is after all a chronic condition.
My husband works locally so that he can be close by, for me. The only money I receive is DLA. I am not a liar. A scrounger. So why can I not get the overwhelming feelings I am having about accepting help in perspective. It is not right or realistic to live in a bubble, never exposing myself to current affairs, the media. However wherever I turn its there. Is it actually possible to have a reactionary type depression because of the disability hatred going on at present. Am I soon to add to my list of medication, anti-depressants?
So worried that even an Occupational Therapist won't believe that my collagen is wonky I think she will contact the DWP to say. Mrs Achelois is a fraudster. My pain is real, my condition is real. I am honest. So why? Ehlers Danlos is a lifelong inherited painful and debilitating condition so after all these years, it has come to this. It could be said I am being paranoid and perhaps I am but something has triggered it.
I think I know what it is. Its the equivalent of racism. Disablism? Hatred for the weak, sick, vulnerable. To pick on a minority I had thought was illegal in the UK. It seems not.
I have been wanting to write how I feel about this for a while but haven't for my thoughts are troubled. Saying has made me feel better but no less worried.
I know that others have far more to worry about. Cholera for example. So perhaps I haven't voiced my fears previously through guilt or fear of being accused self indulgent. All I wanted when I spoke to the GP initially about a referral for a wheelchair was more independence I guess. The process has backfired somehow and I have ended up feeling worried, angry and stressed.
Perhaps I should ring wheelchair services and explain a little. I would appreciate any input here as for the first time in a long time I am floundering around. Should I ask for an attendant wheelchair initially? Instead of this overwhelming process.
Is an Occupational Therapist really a government spy? Ehlers Danlos is so rare, so misunderstood. I don't think I could bare it if my DLA were taken away because I asked for help.
I know I am panicking. Aware my thoughts are running away with me. In pain tonight, that I am used to but not this.
Looking back, I wish I hadn't gone and spilled out to the GP just how difficult things were getting with the EDS. This stuff is new to me. Paranoid? Maybe. Or a realist? Living with EDS is hard each day is a challenge, I have always met that challenge head on. Until now....
