"...our society is only pro-disability until you scratch the surface...[making] it inevitable that many people with disability become cornered and tired and silenced. From then on, it's a matter of applying common sense; people who are cornered and tired and silenced are often riddled with self doubt or self hatred. It takes time and a conscious effort of will to overcome those things...Without pride in ourselves we cannot create pride in those around us...Like becoming that person with multiple labels, goals and ambitions, becoming a better society for people with disability is not a one-shot process. It's going to take a long time and a lot of thought. The first step is to recognise all our contradictions, traumas and mistakes. The second step is to stop hating them."
- A Journey Towards Pride, Leah Hobson, Ramp Up, 11 June 2014
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I am so scared. The tingling and pins and needles in my legs and feet is getting worse and more constant, I can't move two of my toes now and no doctor will help me. They said it might be because I have a folate deficiency and gave me folic acid tablets but the tablets upset my bladder severely so I stopped taking them. I explained the situation to the doctor but she just told me to keep taking them, no help at all to determine if the folate deficiency is even the cause of this or find alternatives to the tablets. So i started taking them again and my bladder has flared up again so I have to stop again. I don't know what to do. Also I received two vitamin D injections lately and now I have some symptoms of a vitamin D OD so I have to get that checked too. But no doctor cares, none of them are taking this seriously or will do anything to help.
My mood has plummeted. I can always gauge my mood by what music I'm listening to and now I am back to the Manic Street Preachers, which is the worst possible sign, they are always what I go back to when everything is hopeless and terrifying.
I'm not sure what to say, love. Take care as best you can
Thank you.
I managed to get another appointment yesterday evening for a second opinion with a different doctor and this doctor actually listened to me and tried to find solutions. He told me not to worry about the vitamin D as that's unlikely to be an OD, but he's pretty certain the numbness and tingling is due to the folic acid deficiency. He prescribed me some bladder calming sachets to take with the folic acid to see if that helps. He's also writing to the NHS dietician to see if they will help me work out a suitable diet for my food intolerances and deficiencies. He said it's unlikely they'll accept me as I probably don't meet the criteria but he'll try. It makes such a difference when a doctor actually listens and tries to help.
I am really glad you found at least one doctor who takes your issues seriously and who tries to help you. Keeping my fingers crossed something useful will come of it
Thank you.