It has only been a few days but it feels like such a long time since I last went through all your lovely blogs. I keep popping on with all good intentions but I am getting so tired so quickly at the moment that I just can't read that much, but I will.
I have just got back from the reumatologist. I can't decide if it was a productive meeting or not. Was confirmed that it is Ehlers-Danlos, it isn't going to go away(have known this since I was 16!) I can't be put on any more medication as I am already on it all, I am being referred to pain therapy again but told not to get my hopes up. OT again, physio again, I have to see some other consultants in different departments to deal with the other symptoms with the condition and told that I should look into having a second opinion from a specialist...IN LONDON! It took it out of me going a few miles up the road lol.
Just feel that when you have something long term or for life that you kinda get dismissed. There is a sort of attitude that, 'Well you know you have it so what more do you want?' My weight has come on due to my conditions, I have lost the ability to take part in all the activities that I use to love, I can hardly walk without ten ton of painkillers or a week in bed afterwards, they tell me that I have to be really careful with the activity I do due to being so sensitive to pain as my body has gone through so many traumatic, painful events that it has made me extremely sensitive to pain(I don't really understand this, I am assuming it means all the dislocations, slipped discs, scoliosis etc) I think I am great with pain, but she said something like 'you can deal with the big pains but it makes everything else painful like little pokes and prods' which is true, it does hurt when the children hug too hard or someone grabs me even lightly.
I then get told to lose weight!!! Then I get told that losing weight is extremely difficult in my condition...I am just a bit worn out right now. I try my hardest to lose weight and it is a slooooow process. I use to have a lovely figure and when they look at me like I must love being overweight I want to cry and throw photographs in their face. I want to show them videos of me dancing and pictures of me playing with my children.
I don't want stupid advice on top of statements that include, 'you just have to play the hand you have been dealt', 'you are not getting better but hopefully you can find things that help', 'ooooo you have the bipolar on top of this so that is going to make things harder for you!'
Talk about confusing and deflating. I know there is no cure but is it too much to ask to have some black and white responses and to have some positive and clear information that isn't followed by something depressing?
I am sorry that I am probably depressing you all with this but I needed to let out a little steam. I am blessed in so many ways and I am so grateful for the life I have, the roof over my head, the children I have been blessed with, the love that surrounds me. That all keeps my spirits up, but sometimes when I wait ages for some answers and get nothing new and nothing concrete it gets to me and I moan.
I will be feeling better soon and much more positive(I might buy lots of flowers soon, they are awesome for lifting the spirit) and I will be popping by everyone's blogs to say hello and see all your gorgeous colour and creations, but for now I am going to curl up in bed with a Special K cereal bar and relax with a little hooking :)
Happy Tuesday x