The words came tumbling out...

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....