Sorry, this is long, I'm treating it like therapy.
I WAS intelligent articulate outgoing and active. I say WAS because whatever is going on with my body seems to have changed all that (hopefully temporarily).
Last year I had massive headaches (I've always suffered with migraine but these were off the scale) I became confused - getting lost at the end of my street, couldn't concentrate and was totally exhausted, sometimes I couldn't remember words. Me being me chose to ignore my body and push through it making it worse as there seemed no logical reason for the tiredness. I'm a mind over matter type
I functioned (in that I managed to get back to work but with no other life) for a few months then KA-POW (trying to make this amusing with sound effects) the fatigue was back.
So I'm off work again - the fatigue is the main issue. I've seen rheumatologist who thinks sjogrens (my GP and I think it's more like lupus) I've got at least 13 symptoms which are rapidly increasing in number. Coming up next month I've got lip biopsy to test saliva glands for dry mouth, endochrinologist for adrenal gland malfunction and 2nd rheumatologist appt. At least it now feels like we are trying to get to the bottom of things.
I've sort of come to terms with the fact that the worst case scenario may be that I don't get back to my current job and something less taxing would be OK (high stress and a lot of driving). I hope I will be able to save energy and get out and about in some way with my partner even if that's not as full on as it used to be.
Don't get me wrong I've not given up by any means! I'm doing well being home and enjoying what I am able to do I'm certainly not bored
The bit I'm struggling with and frustrated by at the moment is the fatigue. Am I being a wimp? Should I push myself more? My instinct is no and no but want a reality check please?!
Some days I get showered and dressed and make dinner. Unloading the dishwasher is a major achievement. Those fripperies of blowdrying and make up and jewellery no longer occur to me. I'm putting on weight, what is happening to my cardiac health with all this inactivity?
I've read the lupus uk exercise advice, I've read the stuff about pacing. I've dusted off the 10 minute Pilates Dvd. I'm counting my steps (3k is a MAJOR success). I've put the swimming, meditation, knit and natter sessions in my diary in case one day I'm up to it. I've tried, really I have, but it's all TOO FLAMING MUCH!!!
I have good days and end up paying with a kind of activity hangover where I feel terrible and I'm stuck in my chair. The more I do (no matter how small) the worse I feel. Is this usual (it's not normal)?
Do I just keep trying in the hope that one day I won't get a hangover? Should I just accept it for now until I see rheumatologist again and until I get diagnosis and treatment?
Do you have any little tips that helped you get more active or are there just some days when it's not even worth trying?
I'm not known for my patience but I'm learning, slowly. Some days though I want to cry because it's frustrating and today is one of those days. Today is the first time I've cried - that in itself may be a good thing.
I'm putting the kettle on, surely that will cure it ... Xxx