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| | From:  Dee-Dee_1 (Original Message) | Sent: 5/12/2008 11:26 PM |
Hi I'm Dee I am nearly 37 years old and have had a chronic pain condition most of my life. I have been using a wheelchair for the last 6 years because the pain got so bad. I was diagnosed just over 2 years ago with Fibromyalgia but know that I have had it for at least 30 years. Also 18 months I was told that I have the hidden form of Spina Bifida which has affected my bladder and bowels. I struggle to do must things people take for granted but get no help from Social Services. dee |
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Hi dee: I am sorry you are having a rough time with your pain. I have been disabled with 2 back injuries for 34 years but only maybe 6 months in a wheelchair. I am 54 now and wear two back supports and tho I cannot work, I manage my pain very well. I wish you the best. Raymond. |
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Hi Thanks for the reply. I'm in a lot more control of the pain now than I was 5 years ago before did the pain management programme. Before the programme the pain controlled me. Also my depression has got a lot better since I got my darling dog Jai-Jai 2 years ago. Jai is a long haired German Shepherd. I am waiting to hear back Support Dogs to see if Jai can be trained as my assistance dog. Dee |
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| | | From: CyndyK2 | Sent: 6/6/2008 8:30 PM |
Hi, Dee, and welcome to the family! So sorry we missed you joining us last month, but most of us don't look here until someone posts in the General board first. : ) I just found your post by accident while looking for something else, which was lucky for us. We don't have too many members from the UK, which is one of my favorite places in the world! I was fortunate enough to be able to visit there in the late 1980s before my pain got too bad, and never forgot it. You have a wonderful country. I'm so sorry you are in so much pain, and that your spina bifida condition went undiagnosed for so long that it has now caused you continence problems; I should have thought that alone would qualify you for some assistance. Keep trying for help; eventually they may reclassify you. In the meantime, post here in the General board; we're a very supportive group!
Cyndy |
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| | | From: Litchuk | Sent: 6/6/2008 9:04 PM |
Hi Dee,
Im James and i am from the UK the south east to be exact. Can i ask why you dont get any help from the SS? I take it you are geting DLA hight rate and this should access direct payments that should allow you to get some help in.
I am getting a old hand with the wonderful sustems we have here so if you need some advice it's alwase free and i am happy to help. Welcome to a very surortive bunch and i hope it help you....
_James Kemp |
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| | | From: Dan | Sent: 6/6/2008 11:54 PM |
Hi, Dee. Welcome to the family. I would say your dog has already been of assistance to you if he's helped you out of your depression. It's pretty hard to stay depressed in the face of all that unconditional love, isn't it? I have a question. How do you walk and exercise such a large dog since you're wheelchair bound. I would like to get a larger dog like that, but I'm afraid I won't be able to take proper care of him. Over on the left there's a lot of information on chronic pain. Let us know if you have questions, and welcome again. Lots of love and healing hugs, Dan |
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Hi Dee, welcome to my world! It only took the doctors 25 years to figure out one of my biggest health problems was severe fibromyalgia. Try explaining to people or doctors how the pain feels when you look as healthy as a horse. I spent many years having doctors {if they were kind} patting me on the head and telling me it was nerves and I needed to find a release from stress. I was busy raising four kids at the time and didn't have the energy or strength to find a release from stress. I'm 64 now and they finally acknowledged that fibromyalgia was real and they have found several drugs that help with the pain and the mobility. My doctor recently put me on Lyrica and it has cut my pain in half and I have more mobility than I've had in years. We went to visit my son and daughter-in-law and our precious grand daughter Katie [she turned one year old in May} We had been there 3 months before and the pain was so bad I couldn't pick her up or hold her. This time we rolled the ball back and forth to each other building precious memories. Life is good!!! Don't give up and keep looking until you find something that works. Another new drug is Cymbalta, I don't know much about it but they say they are having great luck with it. I'm new to the group too, they have been a big help to me, it helps to talk to others who have walked in your path in one form or another. Hope this finds you feeling better soon. lol gramanan
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