Quote:
Originally Posted by Corbybird
Hi Villier,
What does PM mean? Thanks for your response.
I've just been on 2 weeks hols (I work in a school) & work started back today. Everyone was asking each other about their hols. What was I to say? Seven of the 9 working days I had were spent doing medical stuff and I learnt how to self-cath? Lol. Yeah, I wasn't in a laughing mood and my foot pain was so bad I barely made it home before bursting into tears. And that was a worry because the kids aren't back at school yet. I just sat on my backside all day!
Just now I went to take my evening meds & realised I hadn't taken any this morning! Problem explained. I hope. Though every working day is a huge struggle.
How long did it take you to come to terms with the catheterising? I think my neuropathy has autonomic aspects as well, though that's not diagnosed. I have dry eyes, dry mouth, I don't sweat, have heat/cold problems and the bladder problems. Some dizziness. So tired now...
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Hi Corbybird
PM means private message, it was just in case you wanted to ask any questions that you didn't feel comfortable asking on the thread. It probably took me about six months to come to terms with the cathetering and remembering to carry them with me, it was such a bind to start with but now it is a way of life and I don't really think about it anymore well not very much.
You say you have dry eyes mouth don't sweat and dizziness, have you been tested for Sjogrens Syndrome? all classic signs of it, I also have the dizziness and have just started taking steroids for it apparently it is down to a hormone which I haven't got all the details yet as there has been a mix up at my doctors surgery.
I also get the heat/cold problems, I can't stand going out in the wind or having the sun beat directly on me as it flares everything up, I only have IVIG every three weeks as all the neuropathic meds I have tried in the past either didn't work or they gave me horrific side effects it keeps my pain bearable at rest, result is I now can't work, even dressing myself or standing on my feet exacerbates the pain, I hope at least the meds you are on is helping with your pain.
If there is anything else you want to ask I will gladly try and answer you, I am surprised though that your neuro hasn't sent you for tests for Sjogrens if I was you I would maybe ask him what his thoughts are on your symptoms.
I hope you have managed to get a rest and are feeling a bit better...........tc............xx