My neuro said this to me in the early days, but at the time they weren’t sure what was wrong with me and I didn’t understand my body and what was happening to it. So despite them not giving me any idea of why I couldn’t do the same things anymore, I was been told I should still try and do the same things! And these are qualified people?
I’m thankful for my research skills I learnt at University as these have been instrumental in my understanding of what appears to be going wrong, as they couldn’t help at the time until I had a confirmed diagnosis (yes, I got no physio despite going from walking normally to barely been able to move and no speech therapy either as I was deaf and would therefore never talk normally anyway!)
So everything I have learnt about coping and adapting, I have taught myself and picked up tips from others who have lived with their disabilities much longer. These are the people I consider the ‘experts’ and have quite frankly lost my faith in the medical profession. I don’t even bother visiting my GP.
I saw a program on telly where they had put some old blokes in isolated farmhouses to look after themselves to see if modern life was making people lose skills or age faster I think. I can’t remember all details but some of results were that the men actually got some skills back, one was able to walk without his stick and stopped using it, another was standing up straighter rather than bent over and doing more with his hands. What does this have to do with me?
Well I was wondering as I lived alone and had been more or less ‘left to my own devices’ to work out everything myself if that was why I had managed to stay independent?
On one of my few medical appointments when the OT (I did get one eventually!) from Neuro Rehab Team comes out to assess me – now they have finally realised I do have something that has been progressing for the last 7 years – she was impressed by my ‘initiative and compensation skills’ and that I had found a way around all the daily difficulties so I could carry on independantly. At least, I hope she was genuinely impressed and not just been patronising.
The argument I have with my GP surgery is when they come to take my blood for thyroid levels, they ask you to phone and they will say if its ok or not. However they wont test T3 which was the one that was dangerously low when the Ataxia started and they wont tell me the numbers, so how I’m expected to manage the condition effectively to prevent it happening again I don’t know. The nurse tends to talk down to me like I was a child.
Why do people assume you have learning difficulties just cos you are struggling to speak/in a wheelchair or deaf? If like me you have all three to contend with you get it on a daily basis from most people! It does tend to put you off the whole ‘socialising’ thing and it’s much easier to socialise online where you don’t seem to get judged as much.
Anyway time to get up, Inca needs her walk, getting dressed is a physio routine in itself! Time to get on my daily routine of exercising every part of the brain before the day is out.