Birmingham Centre of Excellence Support Worker

Hello Janine

thank you for taking the time to drop by and say hello. I wish you well in your new role, it must be very exciting to be the first person ever to do a job because you make the job whatever you want it to be! There is so much to learn hear by reading our experiences - we have all been amazed at ourselves and have learnt so much. It is also very empowering to be with people who understand the very specific and sometimes very troubling difficulties we face as individuals and as a group. I hope that by keeping up to date with us you will be able to ensure that the medics and associated professions are also kept up to date. I'm particularly thinking about conditions or ailments that are either 'definitely not BD' or 'unlikely to be BD.' When so many of us complain of the same ailments then, although it's not firm evidence, surely it's an indication that these ailments should be investigated.

Sorry, on my soap-box! I just wanted to say hello really...

love

Di

I apologise for the glaring spelling errors - my excuse is that it was the middle of the night

Hi Di,

I have been advised that I should seek help but unlike in Birmingham here in Grays Essex I am unaware of there being any kind of support workers relating specifically to patients with Behcets. Perhaps one of your roles in your new job would be to see if you could seek and link up with others such as yourself in different area's and then try to refer us to them. I have no idea how the system works but I'm sure that people suffering in other areas other than Birmingham would benefit greatly from this. I have indeed had Behcets awhile now but still find I may as well have been diagnosed yesterday.....In my thus far expeirience either people don't understand that it is a multi-systemic illness or are just not interested!!! I have found that on my good days people involved in my life in one way or another look at me as if to say 'see I knew she was making it up' or on my bad days I'm just a plain hypocondriact....prob havn't spelt that right :S. Now I am trying to face the fact that not only am I forgein looking, 4'9" tall and act like an old lady but I am to continue in life as do poor little old ladies sat at home alone with no-one to talk to trying to remember how good life once was and how did it get to this???? Im 38 years old not 78 but I feel I may as well be...and anything good that I once had to look forward to has gone..i.e marriage, owning our own home and having a great career...if nothing else but to set a great example to my boys. These things are now not only unreachable but are becoming ever increasingly a torment!

I feel unable to keep going round and round in circles in a system that either wants to see how various medications affect me without even testing for various things first i.e anti seizure drugs without doing an ecg test or being presented with new doctors that are curious but fundimentally still pass the buck. In eight years I have only come across one doctor who had a real interest in the illness to be able to understand what it is like and he had been pulled out of retirement on a temporary basis. ARghhhh!! Having gone down the road of seeking help through a charity run mental health organisation and got absolutely NOWWHERE I am at a loss. We as a family have been promised sooo much by them i.e to be moved from a property that is exacerbating the symptoms of the behcets due to lack of insulation in the walls and it is over 200 years old. I've been told that because it is a fluctuating illness my priority is minimal. To boot I have a landlord who couldn't give 2 hoots as long as his rent gets paid and the repairs and insulation has been an ongoing thing for 3 years. None of the promises have been met so we have yet another huge gas and electric bill to look forward to just to try to keep the cold (pain from arthritis) at bay. I am an artist so I use my hands to work, over the last couple of months I have been waking up repeatedly in the night and early hours because my fingers hands and arms and legs have been going to sleep a hot tingling sensation which takes me getting up and trying to walk around for the feeling (blood to return)this is accompanied with swelling and stiffness this has also been happening when I try to draw drive or put my hair up. Ive reported this several times to various medical professionals but it seems it is not a serious thing to them....to me it is devastating because a) I dont get a decent nights sleep, the sleepers i take only initiate sleep and b) I cant work! Hence worrying about how I am going to pay the dreaded bills. I am unable to bathe now it is cold because you could catch a cold in the shower room if youre in there more than 5 mins and nearly every room has a step up to it. I've given up sleeping in my bedroom upstairs after falling down the stairs several times either in my sleep or even awake due to my awkward movements and lack of agility. We are at our wits end, I have even had enviromental health in here but because the Landlord is 'in there' with the council no report was ever made and no action taken! My advocate expected me to go to the CAB yet again to say everything all again and to be honest I really havn't got the energy to keep banging on doors that refuse to open. I've tried to contact social services and school support workers but because they see me as coping it not a concern to them. I am stuck between a rock and a hard place because if I go to the mental health team and say I'm not coping and I need to go into hospital then my children will probably be seperated and put into care and if I say i'm coping then no-one wants to help......I really don't know what to do for the best..Staying out of hospital and suffering in silence seems my only choice. I love my boys very much so for obvious reasons I can't give up even though I feel like i'm hanging on by my teeth. phewwwwy god that felt good to get that all off my chest. I know you prob can't do anything about any of this but just letting it out sometimes helps x

Oh shoot I meant Janine not Di. Sincere apologies make silly mistakes like this all the time. Thanks for your reply yesterday btw DI. Love G xx

HI

I think birmingham is the closest to me. Is it possible to arrange an appointment Phone or in person?

Regards

Mark