Thursday, 29 October 2009

Message from someone who`s story was simliar to mine

Hi ya,

Just had a quick look at your blog and the magazine article. You've had a really rough time but im glad to see that despite this you are still optimistic!

Looking at your symptons I had them all too, but unlike you I did go the doctors. Not that it helped as each time they prescribed me something different - including anti-depressants, Quini for cramp and Sleeping tablets. I didnt actually take any of them as I knew that it wouldnt solve the problem. I also went to to the opticians and was prescribed glasses about two months before diagnosis. Luckily eyes are back perfect now but for 8 weeks I was convinced I was going blind. To the point I could no longer drive or read and could only make out outlines of shapes. At this point, like you I still carried on thinking that I was suffering somekind of breakdown! In the week leading up to diagnosis I spent a night out with old Uni friends in London and drank copius amounts of wine. That night I was up for about 4 hours with the worst cramp ever. I collapsed at shopping and had to get the assistant to pack my bags, looking back, I can laugh about it now but I spent about £40 on liquids alone! I then drove home! I also had to get my husband to come and collect me when I was out on my horse in the middle of nowhere as I didnt have the enerdgy to continue...the list goes on...Oh and I had lost two stone and was down to 8stone11, which at 5'11 is not good either.

Finally I was taken to hospital by my Grandparents who had visited and found me in a complete mess as my Mum and Husband had both tried contacting me and couldnt get through. On admission my sugars were at 39.8!!!! No wonder I felt like crap. The most annoying thing was that 10 days before this I had had a bloodtests when my sugars were at 18 and my doctor called me to say they couldnt confirm the problem but I would need to go back for further tests to prove what they suspected but to not worry! He then called when I was in hospital for 4 days t ask why I hadnt turned up for a second bloodtest!

Oh well, enough about the ranting, suppose we just have to get on with it. Its good to have read about other peoples experiences though as all the press mentiones is about Type 2 and I do think the impact of Type 1 is a lot more difficult to do with!

Louise Xx

Sativex

Had a another productive meet with my consultant... he is going to see if i can get Sativex cannabis based product to help with the pain relief as the tramadol and pregablin arent really having much affect now.. been on them for a while.. so will se how that goes.. you have to get it as a named patient and there is alot of red tape involved in getting in .. funding etc..
he asked if i would speak to a patient about the pump which i jumped at the chance to.. that went really well. we got on the subject of support groups and i gained some more support about getting one started around here.. the hard thing is getting people to know its happening... mmmmmm watch this space...

Documentry

had a good meeting with the students who are doing the documentry on me, so that is going forward.. they are using the angle of me and my photography so we will see how that goes..