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....

Necessity, not bondage...

This is my new knee brace, sexy oh so sexy.  It is not a picture of my leg by the way.  My brace is blue.  It is interesting that when wearing this, people try not to stare.  The positive is that they give me a wide birth which is helpful as I fall over if people don't make way for me.

Finding appropriate clothes to wear with it is challenging.  It was expensive in the many hundreds of pounds.  I feel I should accessorise appropriately. The NHS in this instance did me proud. Skirts would be best to hide it.  But its getting colder and I need covering.  Because I am small, I cannot wear it under jeans as they would fall down (the jeans would need to be bigger) and over jeans is not a good look.  Because of my thin skin, leggings work well but the bionic woman look is so 70's.

Because it holds my knee in place it seems my ankle has decided to join in the game.  Wobbling away.  But one thing at a time.  GP forgot about other knee so for the moment I have one knee braced.  I am not keen I must be honest and it will take some getting used to.  For the moment though my knee is happy to have a friend who does the job a knee should do.

Next on the list is OT assessment.  I am hoping there is a long waiting list as the house, particularly upstairs is not for public viewing.  She is to assess for a stair lift and lightweight electric wheelchair.  We shall see what happens.

With the current budget cuts I expect she will agree that I need all of the above and more but due to constraints she will not be able to provide, the wheelchair in particular.  It has taken me a very long time to come to terms with all of this.  I am still somewhat in denial.

I like denial.

On the crotchet front, getting absolutely nowhere with it!   However, looking on the bright side, I have plenty of time to get the hang of it!

 

I am watching a film with subtitles.  I have always loved as long as I can remember watching films with them.  Perhaps its because I miss so much because of mild hearing impairment.  I also become lost within them, entranced by languages I can't understand.  The film is complicated, fascinating.  http://en.wikipedia.org/wiki/All_About_My_Mother    For some, shocking.  Its unusual for me to watch a film throughout.  This one I would like to watch again.

My son has passed his driving test. I have been through this with my daughter.  I must not panic each time he goes out.  He will be fine.  I keep repeating this to myself over and over.  He looks at me each time he goes out as I say 'I love you' and helps to ease my rising fear by smiling with his beautiful blue eyes and says 'I love you too, mum'.  I am proud of myself that I am learning to let go.  When in reality I want him back in his cot, sleeping soundly, safe secure.  OH has agreed to another kitten, he sees me panic and I see him thinking.

Yes another kitten will definitely help.  I can spend time thinking of a name.  Distraction.

* mini note: On denial, I actually had a home OT assessment ten years ago.  Wheelchair electric, stair lift, bath thingy were approved.  I have been in denial for a very long time. As none of the suggested 'stuff' was allowed in my house thanks.  Oh yes.. denial...