5/05/2011 03:16:00 pm BenefitScroungingScum 9 Comments

Yesterday was a long and busy day. I had three hospital appointments to attend, fortunately all in the same hospital and then an interview for a documentary. Which is probably why I was grey, shaking, whining and sporting a heartrate of 120 whilst sat down by teatime. 

I saw the hand physio and specialist hand OT yesterday to get another custom made splint and decide upon the supports we need to order for my wrists. The physio and OT are concerned about 'joint preservation', in layman's terms making sure I don't destroy my joints 50 years before their 'use by date' The NHS spends a fair bit of time and money on this kind of thing, the understanding that money spent early to save more later having worked well in some services. The problem is, whilst the NHS is spending all that money ensuring my condition deteriorates at the slowest possible rate, all our hard work is undone by the lack of support in the social care sector, which means, however hard I or my NHS therapists try, there is only so much we can do to preserve my future function without practical help on a daily basis.

The main appointment was Freak Clinic. Dr FC has been my doctor since just after I was diagnosed with EDS. He's not a rheumatologist, but in the absence of continuity of care in that specialty he has overseen my care, and despite claiming he knows nothing about EDS now has a better understanding of it's impacts and how to deal with it than most rheumatologists do. But he's always had an EDS specialist he could call upon if needed, until now. Since Professor Bird retired there have been rumours of a dedicated EDS clinic in the north, but they still remain rumours. Dr FC feels, quite understandably that as a district general hospital they are out of their depth attempting to manage a patient like me, without an expert they can more readily call upon.

It was a depressing appointment. So depressing I don't want to talk about it, as that'd be acknowledging the reality of what was said. I like it better in Egypt. It's warm and they know how to throw a good revolution so I'm staying there. Writing about it to the entire interwebs however weirdly remains in the Nile territory and so is acceptable.

The words 'there is only one way this can go' were uttered. The look on my face must have prompted the clarification that actually there could be a second way, one where we keep things stable. I like that one better so we're all sticking with that and no comments to the contrary please. I explained that I'm having choking episodes more frequently and that I point blank refused hospital last time because I was scared A&E won't know what to do. An opinion that unfortunately my consultant agreed with, they won't have a clue. I could see how nervous that was making Dr FC and so that made me nervous. My reassurances that if worst came to worst I can hook out my larynx and put it back myself didn't seem to improve the mood much.

So we agreed upon a plan. The reason I haven't been seen on the three monthly review basis my new rheumatologist wanted is because the PCT (Primary Care Trust) have been refusing to fund three monthly reviews, since long before the election. The drive is to push care back on the GP's, regardless of whether the GP's have the expertise to cope, and the logical conclusion of that policy may explain the lack of funding. Maybe. My GP cannot cope with this, nor should he have to. He does a great job of being my GP, keeping track of my general health, prescribing and referring as needed while he oversees the situation. My consultant doesn't feel he or the hospital can or should have to cope alone without specialist input, he is not trying to push me off to be someone else's responsibility, the local hospital will always care for me, but they need back up to do so, even if that backup is only advice at the end of the phone. The plan is that Dr FC will talk to my rheumatologist and they will see if they can find anyone else to advise and work out some sort of plan for A&E to follow should I have to be admitted. They will also investigate whether anything is available for me to use at home, the neighbours most likely to be called upon in a breathing emergency are medical professionals and had enquired about the possibility of using something like IM diazepam to reduce the spasms. The potential problem with that is that it relaxes me so much none of my muscles work and so I stop breathing that way so specialist advice is desperately required.

And now you see why I'm planning on staying in Egypt. It really does look nicer there.


RosieHopes said...

Oh Kaliya, what a tough week. There's a lot to be said for de Nile. It can be an easier place to be. Hope you feel stronger soon.

Fiona said...

(((hugs))) you've put my current problems in perspective.

Jaci A said...

Kali - I'm joining you in Da Nile for a fair few weeks. We can top up our tans together ;o) Jaci xxx

Emma said...

It's definitely a good place to be. I've spent a lot of time there in the last few weeks. Emma xx oh and my captcha is blessin. Apt I think

Emma Lou said...

Emma Louise:
After 4 long years I was diagnosed with EDS on 18th December 2010. I am 20 and I am seeing Prof Aziz and Mathias in London I am having to pay private and its costing a fortune but i simply cannot afford to wait any longer. My local hospitals haven't got a clue how to deal with me. Yesterday I was rushed in after passing out and hitting my head. They strapped me to the bed with a fear i had damaged my neck once they knew i hadn't broke anything and filled me with morphine all they had to say was your seeing the right people in London and let me go. Anyway Mum went to chemist today and she mentioned you and to read your blog has made me cry and laugh. I know that this is a life long condition but i can cope now i know it's not in my head which is were we had got to. My life has been totally turned upside down with this but I am glad that I have got your blog and belong :) Thankyou I hope you get time to read this. And can i join you on Da Nile.....

Emma Lou said...

After being ill for 4 years I couldn't believe my ears last year when I was told I had EDS. I cried! It's been a tough 4 years and at 20 i have missed alot of partying and spent it in hospital instead. Last night i fell and hit my head that hard that i didn't come round my mum and dad took me to hospital and they taped me to the bed because they thought i had damaged my neck, when i was given the all clear and they had filled me up with morphine they told me I could go home because i was seeing the right people. Very true I agree I am seeing the right people however I am having to pay to see the right people I have tests next week that come up to £2500 and a consultation is £500 but after 4 years of being ill its worth paying for it just REALLY annoys me?? My local hospitals haven't got a clue but I haven't got a money tree growing at the end of the garden and I can't spend 15 months on a waiting list to see the right person!!!! I was told that it was all in my head and at my age I thought i was going mad!!! I could swing for them now. Getting Ill has totlly changed my life but I am hoping that soon I will get back on my life track and get back being the normal, fun loving Emma. Not the friend who is 'always ill!!!' I am so glad i found your blog and for some reason feel like i fit in. I have laughed and cried today reading them. Thanks :)

misspiggy said...

oh crikey, I'm so sorry. Someone as great as you shouldn't have to deal with anything like this amount of rubbishness.

Regarding the rumours of a specialist EDS clinic in the North - Dr Ho at Manchester Royal Infirmary is supposedly running one, but the waiting lists are ridiculous. I was referred in December, they only book appointments 3 months in advance, and I've still not got an appointment booked!

And in the meantime none of my other doctors will do ANYTHING as they don't know how to cope and want to me to see Dr Ho first. :|

I hear it's warm and dry in Egypt too.