I am the worlds worst when it comes to having a positive outlook on using my mobility aids.
It’s been a definite love/hate relationship for me. Even 12 years into my illness I still have that battle.
One of the main things for me personally is the fact my illness is completely invisible to anyone. There’s no plaster casts on my ‘broken joints’. There’s no bruising or swelling visible. I don’t walk with a limp or have a missing limb.
So, to anyone that meets me I look like anyone else. Until they clock that I use a walking stick.
So when I meet people, quite often for the first time, I will be greeted with the usual comment ‘ Oh what have you done?’. Meaning I must have hurt my leg in some spectacular fashion and that I’m now going to tell you the full hilarious story!
Any of you that have been following me for a while will know that I have ME and Fibromyalgia, which in layman’s terms means I am permanently exhausted and have constant chronic pain. There are lots of other symptoms but the list is too long to mention.
I was diagnosed in 2009 and after being initially referred for a 12 week management program in London at the start my Borough decided they would not pay for me to go out of borough for treatment. So, after being diagnosed I was then left with no input apart from pain relief from my GP.
I spent years on Tramadol until my body totally adjusted and they were having absolutely no effect. Last year when the pain became to difficult to handle my GP switched me to Morphine (slow release) and Oramorph for breakthrough pain during the day. Again as my body adjusted they had less and less effect and the dosages where increased to a point where my GP could not authorise another increase without referring my to a Rheumatologist.
This was probably the best thing that could have happened. I had an appointment in February and she confirmed 18 tender points of Fibro around my body alongside all over body tenderness. That means my body feels bruised so wearing clothing/ shoes etc all hurts as though someone is pressing directly on a bruised piece of skin. From there she referred me to the Fibromyalgia clinic and I had that very long appointment yesterday. It takes all afternoon as you see three separate specialists in different areas who all work together to approach the illness from different angles.