One Month Before Heartbreak......

One Month Before Heartbreak

(written as part of the broken of britain blogswarm  )

Sometime before Christmas I found myself unable to blog.

I hadn't even been blogging for long.

Surely its easy to write a little sometimes, with a break in between sentences what may even seem a small post.  To manage my pain.  Its called pacing.

I am fortunate the only benefit I claim is DLA (Disability Living Allowance).  My husband works and hard.  We have invisible disabilities in our family of four.  A husband & son with Epilepsy, dyslexia, dyspraxia. Myself and my daughter ehlers danlos, with the addition of osteoporosis, osteoarthritis, arthritis.......    We live simply on a low income.

I found myself increasingly affected by the media and Government onslaught, regarding the status of my verity & probity.  I am honest and so are my family.  It is not my fault or my families fault that our genetic pool collectively includes the conditions it does.  Does it make me a scrounger? 

So somewhere along the line and this is where the writing of the blog became intertwined with a deep seated unhappiness about the treatment of those with disability in the UK.  I became unable to write about how living with Ehlers Danlos was affecting me.  Until this feeling became overwhelming I had felt liberated that I was able to write here.  Perhaps in some small way helping another with this devastating, rare condition to cope a little better?  Then little by little my confidence became shattered.  Perhaps I am overwhelmed by guilt.  I know not what the actual cause of this affliction was, except that it coincided with the assault on the disabled of Britain.  Why guilt. I asked myself.  It has taken me a long time to even be able to say that.  Guilty for my disability?

Ehlers Danlos has a profound, lifelong affect on those who have it.  For years I worked and struggled to do so.  Eventually it became obvious to all that I am simply not fit to do so.  This does not make me a scrounger.  This is the truth.  So we live together on a low income.  My only source of personal money is via DLA.  My lifeline.  I could talk forever about the why's and wherefore's.  Dislocation, subluxation, the fact that much of the money is spent on keeping warm.  Is that my crime?  Autonomic dysfunction, raynauds, pain..... means that the cold has a profound effect on my wellbeing both emotional and physical.  If I get cold my body temperature drops too fast and I become hypothermic.  Is that my fault?

An able bodied person could possibly go out for an invigorating run to warm themselves.  I smile wryly to myself, the memory of running an obscure one, you see even as a child I couldn't run.  What one doesn't know one does not miss.  There is more to my condition than getting cold. This is just a small example of the additional expense of my disability.  A tiny weeny glimpse into my life.  To overheat is pretty devastating also.  So the heat and the cold are equal enemies to me.  Fans are expensive to run also.  So is much of the paraphanalia required living in constant severe pain.  I won't bore on that front.   Don't get me wrong, I like the feel of the wind in my hair and the warmth of the sun on my face just as much as the next person.  Its the wild variations in blood pressure.  The inability to stand on my own two feet literally that interrupt these natural pleasures.  Its not just that, knees, ankles, bones in feet, hips, shoulders, wrists, thumbs, fingers, elbows sublux and dislocate with even minor pressure.  This is not just a standing thing, turning over in sleep is enough to wake in searing pain.  Muscles which have altered collagen stretch then stretch more meaning that with each daily multiple dislocations/subluxes injuries are ongoing and further weaken that which is already weakened.  Do you know anyone who dislocates their finger touching the touch sensitive pad on a microwave.

This is just a taste of EDS.  A starter.  It is a complex, painful condition.  It is not something I have made up, although many including myself spend many years being labelled a hypochondriac, until finally a diagnosis is made.  If one has the condition severely, one is destined for a life of pain.

Do the government see my pain?  When I am forced to take a medical in 2013 when my 'indefinite' award comes under scrutiny.  Will I have to endure the humiliation of a medical which will be undertaken by a doctor who in all honesty will have no clue as how to appropriately examine the severely hypermobile patient.  Why should they know.  When many consultant rheumatologist's shake their heads and wonder why the patient before them is so debilitated.  This rare condition also has few specialists who have an innate understanding of the complexities of how it affects each individual with it.  This medical examination which I am happy to comply with, I don't have a problem trying to explain to a doctor? who cannot see my altered collagen about the effect it has on my life, my body.  I have nothing to hide, nothing.  But how much will it cost to essentially go through it all over again?  To re-apply for something which I have already been deemed eligible for? Seems nonsense to me.

I am honest, if my condition improved I would let the dwp know.  In fact I would let everyone know.  This is not a condition where my physical capabilities improve. My world is small enough as it is.  To face the scrutiny, the humiliation, all over again.  The thought of this is tipping me over into a deeply unhappy place.

Is it not enough that every waking moment I am wracked with pain.  I dream pain at least I thought I did.  Now I know having communicated through the blogosphere to others with EDS that I am not dreaming pain.  I sleep an unrestorative, interrupted sleep IN PAIN.

Until the recent persecution of the disabled began, aged 46 I was beginning to feel that the relatively small amount of money I receive from DLA was something I need not feel guilty about.  After all we live do we not in a democracy.  I contributed via taxes etc. for a long time.  Now overnight apparently I am a scrounger.  My debt to society is too great.  Perhaps they should put us disabled up against the wall and shoot us.  Aiming for the perfect race, perfection.  All humans are flawed some more than others.  When I gave birth to my daughter all those years ago I didn't know I had EDS, I did not know it was genetic. Should I have denied the world her vibrancy, her very being because she is not genetically perfect.

So just when I was finding that I could reach out via this blog and gain inner strength from other bloggers.  I found myself - polaxed.  Crippled in another way.  Because apparently I am not good enough, to warrant respect. My privacy invaded, my bodily functions, the most intimate of functions shared with strangers, where is the respect there.  Shall we look to our sisters who chained themselves to railings to get a vote, to be heard.  I thought in part much of our fight had been fought.  Equality it is surely some sort of sick joke.  To re-apply for DLA or pip will be a humiliating, degrading and depressing process.

I am not against reform, I am not against change.  I am however appalled that the very weakest in our society are being bullied so.   I have a message though.  Beware be very aware that those that are being picked on here are used to pain.  Bring it on.  For we are stronger than you think.

A year ago I was awarded an indefinite award of DLA.  Previously to that I had been awarded three yearly awards.  For the preceding years as the three years ran out.  I braced myself (those with EDS may be smiling wryly here at the double entendre) braced myself for the invasion of my privacy, the explanation that yes my husband has to perform intimate caring for me, this I explained in detail and the rest.  I will do it all over again.  Still thinking that surely it should be enough that my GP could write a letter without actually having to go into intimate detail over and over again.  He could outline my condition and the limitations it has on my ability to function independently.    Will this save the government money all the new pip pip pippety pip.  I think not.  Even changing all the logo's on the websites, the headed paper, the paying the IT consultant's to programme, etc will probably cost more than is saved.

DLA is actually the least fraudulent of all benefits.  A tiny minority and surely they must be a little ill to be willing to lie so extensively in order to be in receipt of money which for the truly disabled is in fact a lifeline.  Enabling us to have a little self respect.

It seems that now not only do I face life with a disability so crippling I sometimes wonder if I did something bad in a former life to deserve such a thing; I also face the guilt, shame, and relentless invasion of my privacy simply because I was born disabled.

I am not sure how much of what I say makes sense anymore on this blog, which is why comments have been randomly latterly turned off.  I have turned them back on but please don't feel obliged to do so.  Particularly if you want to stop by to say, if I can type this I don't deserve DLA.  In truth, and I don't know why I feel obliged to explain, it has taken me in small chunks over a week.  With the additional help of extremely potent pain killers and good pain management techniques. Another example - the need to explain even as I write here, that the disabled of Britain are in fact being targeted in an underhand, unfair and inhumane manner.  Its obvious this supposed consultation before the inevitable changes to DLA take place that there is a sinister undercurrent at work that only the history books will unveil.  Long after I have left this world.


Others are so much better than I, at campaigning, I doubt very much whether my one small post will change one single thing with regard to DLA.  But I am used to shame and guilt.  I am disabled.

(By the way I have worked out as I write again a little of why I could not do previously, I think I was worried that I was pitied.  Along with the government/media induced guilt. For the record, the majority of disabled, sick people understand that pity is futile.  I was worried that I was moaning over and over again.  Well at least I do it here instead of over and over again at OH!

(Working out along the way that worrying about what I may write, have written is just me and anxiety.  Its like the tv, turn it off or change the channel if its boring, purile crap).

I just read this and although I can't do much of the list of want to's in the linked post it is food for thought and I think I should shed the guilt!

Silly me, they cannot steal my dreams, yet... Read & enjoy,  ......  Diary of a benefit scrounger - you-will-never-take-away-my-shoes

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....