Our Family

Our Family
Paul, Lara, Chantel, JD, Lou and Reece

Our Passions and likes

  • All of us love music of all kinds
  • Anti Whaling. We support "Sea Shepherd"
  • Camping
  • Chantel - Modeling
  • Chantel - Modified cars and attending events Modeling
  • Discovery Channel lol
  • Festivals
  • JD - Cycling
  • Lara - Making bead jewellery
  • Lara - Reading
  • Lou - The World Wide Web
  • LOVE
  • Motorbikes
  • Paul & JD - Cars - classic and modified
  • Paul - Making everyone laugh. lol
  • We love animals especially our 2 cats(Mulix & Charly) and 2 dogs(William & Blitz)

Thursday, 12 August 2010

My "new" Symptoms for my appointment with Professor Graham on Tuesday.

At this point I have more to add, this is what has changed since my last appointment with Professor Graham at the UCLH (University College London Hospital)

1) When I was 19 I was an addict. I had an addiction to heroin. Yes the lowest of the low, I suppose it was my way of dealing with the lack of help or listening, and as I had pain all the time but no reasons why. I was a mess and felt so alone at that point. I was lucky enough to realise I needed help and quick! I managed to get into a rehab unit quite quickly. Some people have to wait months. I had a great drug councillor and she said, “If you don’t get help now you will be dead within 6 months!” Even that didn’t worry me enough. Its strange how an addict thinks!.
I went into rehab and my young son stayed with my Mum. The rules in the Rehab unit stated I would not be able to see my son for the first month! “A month!” That I could not handle. So I left after 3 days. Everyone was so disappointed with me especially my stepfather and it hurt, it hurt a lot. But I had to do it, I could not stay away from my boy! I went cold turkey. I have been clean from heroin since May 1996. My reason for telling you this is because I have issues asking for medications now, even though I know they will and do help.
It drives my fiancĂ© mad that I still have the paranoia of being an addict, but it still affects my everyday life 14 years later. I need to use Diazepam, but hate to ask for it. I don’t even want to ask them to update my dosage of Morphine patch even though at this point it would help immensely. All because I remember how I have been made to feel in regards to being ignored for years about my pain and that I was called a hypochondriac and because I am an addict. I have 1 diazepam left and have been away on a break and all I want to do is walk the dogs along the Sea front 1 more time before going home tomorrow, fingers crossed this last one works for me. But yes am too paranoid to ask for more (I know everyone thinks I am ridiculous!)
That was number 1 on my list to mention lol..I got a bit carried away.
2) My elbows were fine at last check but now my left elbow snaps and cracks and when it does OMG it hurts! Sometimes you can even see a movement in my arm due to the “crack”
3) My hips are extremely bad mainly my right, but I have figured out that after the swelling goes down I can “pop” my hip back in properly. (it does not completely dislocate only sublux) but now my left hip has started doing the same thing, I am yet to figure out the movement to “pop” it back in, When trying, it is immensely painful.
4) My middle finger on my right hand keeps popping and cracking is always painful and is a bit disfigured now.
5) Both thumbs throb. They hurt from my thumb joint to my wrist, a deep throbbing pain that is so frustrating and annoying. They are also constantly snapping which hurts a lot.
6) I have started to get small bruises on my legs, or that’s where I am noticing them. They are very weird. Some are little blue dots and some are proper brown/blue/green bruises, but no explanation on how they get there.
7) I am getting dizzy spells when I look up or lift my arms up, this does not happen all the time but it is certainly more common than before, sometimes my eyes go black and I wobble a bit more than before too.
8) My big toes! They pop out and they don’t go back in from anything from a day to a few weeks. All of a sudden they will just snap back and feel fine. Its ever so painful to walk on when not in properly
9) My back feels like I keep catching bone against bone. I have not yet managed to find the position that causes it as it is always different. But this is also ridiculously painful.
10) My calf muscles are very tight, and especially painful after sitting down. My right leg is definitely the worst. Even if I touch it in the right place it feels so bruised.
11) Back to my hips again. I have a new nerve pain, which has me doubled up and drop all of a sudden, I have been prescribed Gabbapentin which seems to be helping.
12) My shoulder is as bad as it always has been, I did have surgery on it approx 5 years ago but it feels just as it did before and I am still unsure how stable it is so try not to lift my arm away from my body too much. (before surgery I would move my arm away from my side and it would immediately drop out of socket)
13) For the last year I have had 4 nasty abscesses, They are Gross, painful and really ugly and always somewhere on my face. The worst being at Christmas last year behind my ear! Paul took photos and I keep trying to delete them lol, but he likes to record how bad they get.
14) I rarely sleep through the whole night (unless I have had a dinky poo) I am always tired. But when I do sleep through I have been known to sleep for 24hours!(but am usually exhausted beyond belief)
15) I would like for my Fiancé Paul to get some counciling as he is my carer, I cannot even begin to understand what he goes through watching me in pain and having to deal with so much, I would also like him to meet other carers of EDS/POTS sufferers.
16) I have behaviour issues with my son which are causing me a lot of depression and has made me quite ill. I am thinking of getting counciling to help my with the “tough love” approach which everyone I know has advised me to do for a long time, its just hard. I love my son. But hate how he can be sometimes. I am starting to be scared of him.

At this point I think this is all the “NEW” stuff I have to tell Prof Graham… I hope I don’t have to add much more.

I posted this and then edited!
I sometimes wonder if I should be so open about my addiction. and "yes" I think I should. My children all know and so do all my close friends and family. I decided when starting this blog that I should be as honest as I can be. So here it all is!! I was disgusted with myself for a long time. I have since been taught by Paul and close friends that although being a heroin addict is as bad as it can get, I would not be who I am today or know what I know if I did not live through this. I no longer feel dirty about it and have never hidden my addiction from anyone. To me I do feel it is something that I accomplished. And yes I am proud of me.


  1. I don't see any problems with admitting you were on heroine. If anything, I'm glad you're telling people. It might make one more person aware of the issues faced by people with EDS and/or POTS. To think that the lack of a diagnosis of one of these things could cause someone to go into the world of drug addiction might just give researchers and advocates one more push towards finding a cure or treatment. Even getting the information out there so people get diagnosed earlier would be greatly beneficial.

    I'm sorry you had to go through that.

    I tell doctors I'm addicted to being pain free, and I will take certain legal and illegal, prescribed, or not medications and substances, if it means I can be pain free. Mostly, the best I can get to is "less pain than without the drugs" but not usually so far as "pain free."

    I hope you find a balance.
    Good luck, and gentle hugs,

  2. you are a very understanding person, thank you bubbleGirl