The truth and I hate the PCT for not funding adolescent pain management....

Ok I hope this is ok to put in my blog - its not the whole thing but perhaps this is why I haven't been able to blog.  See below.

Here is what B wrote.

   I will sum up my life in three statements:

       I am severely restricted in my daily life.

       As extreme joint instability and pain limit my mobility

       There is no cure for Ehlers Danlos Syndrome

Surely these statement sum up your life too mum.

Sometimes I feel like giving up mum really I do, like lying down and never getting up again because of the pain that radiates through me 24 hours a day.

Maybe I will give up, who knows  but I try to carry on and pretend I am ok for my family and friends and those who love me.

But inside I am dying.

I know you know how this feels and can only say this to you because you understand and will not just say oh she is depressed or over reacting.

This is the reality of living with ehlers danlos.

I love you.

My daughter (nearly 20) she writes to me often. (she lives at home apart from staying with her boyfriend quite a few nights a week).  Sometimes they are pages of beautifully written words full of love, she has done this since she was little and they touch my heart.  We talk a lot but she is full of words all the time and they spill from her mouth, her pen & via art, from her soul.

I am sharing this one and I hope its ok with her but as I say its just a little bit of the whole 'letter';.

I am overwhelmed with life at the moment - as you all know she has been really ill.  With what we do not know.  Important consultants shook their heads and did not know what to do. Yet they never think to consult the Professor.  He is another discipline afterall and admitting defeat perhaps is not the done thing.

We have decided to see the Professor and pay privately despite the fact that she is a patient of his in the hope that a private consultation will give us the opportunity to vent our spleen a little without the confines of 'the clinic' and time constraints the NHS puts upon us.  She did have an appointment with him and I hope he is still seeing patients as he is old so I will have to check on that but the good old NHS delayed it for six months more.  He did say if she has problems he will see her sooner but I am concerned she will be seen by someone who does not know her instead 'in clinic' and she is too fragile physically and emotionally at the moment to 'trust' I think someone new.

It is essential the Professor says and has been saying that she should attend Bath Pain Management and he has written letters to our practice and Bath more than once saying this is an essential and urgent referral.  It is expensive I understand that.  The PCT will NOT fund this which he says is a travisty and he predicted the meltdown she is having right now should she not go.  I know its expensive I know very expensive but I fear as she does that she will not be able to contribute to society in any meaningful way and is having great difficulty coming to terms with the fact that she has been given a break from uni on medical reasons and that she is not sure she will ever be capable of holding down any job at all.  For an intelligent young woman this is earth shattering let alone the fact that she finds fitting in with her peers really really hard.  One good friend understands but still she smiles a lot masking the agony she is in.  She is ready for Bath now having previously not wanted to go realising she needs helps psychologically to deal with her pain and condition. 

Young Adult  Bath Pain Management

Launched in 2006, our young adult course is a three-week residential programme which looks to address the particular needs of those aged between 18 and 30. This programme is specifically tailored for those who are finding it difficult to make or sustain the transition to independent living because of their chronic pain. Our course is the first in the UK which sets out to meet the specific needs of this age group.
The programme focuses on issues such as work, education, leaving home and relationships. Our young adults stay in nearby flats and a parent, partner or significant other is encouraged to attend for the first week.

for further info click the link ....  
bath centre for pain services.nhs.uk




This is the ONLY centre available in the UK which helps young adults/adolescents with chronic pain conditions.

The bits in bold are exactly how it was presented to me.  She is insisting on working part time at the moment her perception being that if she does nothing that would be awful too but she is in so much pain I can't bear it for her much longer.  tonight we talked about her having a complete rest

To BG is you are reading this is there anything you can say anything at all to help 'us' through this.  Having known more of our story over the years than most.

To bloggers who read my blog I am asking for your suggestions, I am not going to the doctor at all at present despite my condition really worsening which I am trying to hide, my spouse knows its getting really bad, fearing they will just think oh no not another member of the H....... family with that bloody condition.  I don;t want to overwhelm them.I want them to concentrate on B.

She takes a low dose of Prozac which I disagree with because some young newly qualified doctor felt it would help with the pain before her periods and also her PMT.  This may be true but I have witnessed first hand even the small dose is having on her and am concernced it is leading to the dark thoughts she is having at the moment.  This is just my personal hypothesis.  She has been given a low dose of slow release Tramadol yet she feels this is a med possibly more suited for acute pain as on the days she does not take it her pain is even worse.  I believe this is a well known problem with Tramadol.  She is also just been given low dose amitriptyline by the dermatologist for the severe pain from her mystery severe skin conditon causing massive inflammation/necrosis.  The local pain clinic will not treat her as they do not have the funding to see under 25's as they do not have a specialist pyschotherapist qualified to deal with that age group and also state that Bath is the only option.  She has been offered hydrotherapy but is not allowed to go because of the undiagnosed skin problems and illness which has debilitated her so.  The 'rash' am using that word for want of a better name has improved a great deal but until they know what it is will not let her go.  In the past she has had extensive physiotherapy to teach core stabilising.  A lower limb course which made things worse for her severe ankle/knee instability.  Professor Grahame was horrified that she did this but we in our naievety thought it would help.  She saw a podiatrist a long time ago who unfortunately also caused a terrible problem by providing her albeit with custom made orthotics but of the hard type and with her thin skin issues they caused a massive skin infection requiring intravenous antiobiotics.  Professor G was also horrified by the use of these hard orthotics.  She has never been seen by Great Ormond Street as on diagnosis aged 12 it was not common place to refer.  I am jealous now of the mothers who get their children seen by the team there and helped.

I suppose the reason I haven't been blogging is because I have been wanting to say how it is in our life at the moment.  Always always I have coped, I have gone through the guilt of passing on this fucking awful condition and have always before been able to offer some sort of solution to B which seemed to help her get through.  Professor G did say the last time we saw him that often when children leave home to go to uni or just fly the nest with EDS its not long before they return their condition deteriorated to the extent that they have to live at home and find it depressing that they are not able to live independently keeping up with their peers.  B was in the situation at uni where even before she was sent home on medical grounds permanently unable to study due to pain and the stress combined with having to be independent that she couldn't live in halls so she commuted daily.  This became too physically exhausting and she got behind in her work, the parochial support came too late for her.

So this is where we are - I feel helpless, I don't know what to do.  I don't expect anyone to come up with a solution.  But blogging friends please if you can could you come up with some clues as to how I can continue to stay strong enough to give her the strength to keep on battling.that would be good.

This letter was the final straw, she wrote it in her bedroom and got her brother to bring it downstairs unable to walk down them.  It seems its time the stair lift came for me and her.

I am not asking for miracles and won;t mind no comments if none of you feel able I will understand.

Perhaps you can understand now why I haven;t been able to blog.  You see not tell the whole truth was a cop out.  Although I would say writing it down even if its long and rambling.  Has helped.

I am afraid to hit publish but will.  You see its the only way.  I would prefer that I had the facility to just allow this post to be seen by those of you I trust as it is such a lot of really personal information but I have to trust this blogging community.

Thank you for reading this far if you have.  

I decided to write this in the end in case anyone else who has ehlers danlos in the family and has a young adult struggling with it.  I am sure this is just a bad patch but boy its taking its toll.

I too am clutching at straws.  On the outside I must be giving the impression that I am not finding the whole thing too much.  But I am.  I don;t know where to turn for solutions or coping tactics.  I have no choice but to continue trying as hard as I can but I am running out of fight.

So in essence this is why I haven't been blogging - I am not sure people want to read stuff like this.

BG knows until starting uni B was a vibrant young woman with fire in her belly.  She did have to have allowances made during her A levels but only so that sometimes she could study at home.  

Now its like watching her disappear before my eyes.  She wants to fight on still, she doesn;t want to be in a wheelchair or just stay at home.

Please help me out here, I am struggling.  I don't expect a magic wand.  But watching one's child suffer is so hard, I think this latest letter may also have broken my spirit.