OK, after many years of symptoms and illnesses that were treated singly, I finally got to see a rheumy last year and a diagnosis which brings it all together and makes sense. I was prescribed hydroxy in October last year, and am noticing some improvement, though I still need BuTrans patches and codeine to help with pain.
The first sign of improvement was a better appetite and a general feeling I can do "more". You will all understand by that, it means I can walk further and actually do some housework for 20 minutes, not that I'm suddenly taking holidays and days out, which is what many acquaintances expect. However, it's very hard to pace myself and hardest of all that there hasn't been a miracle. I'm so frustrated. I know that I'm seriously underweight and have lost muscle tone, which will take time to get back, not helped by the occasional day of throwing up everything.
I keep looking at everything that "needs" to be done, and just cry at the thought of ever doing it. OK, whine over .....
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Lupiknits
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I can totally relate to you and completely understand where you're coming from, it's even the littlest of things that take so much energy and nobody sees the effort it takes to do them which they wouldn't even think twice about doing but for us it is a massive achievement, gradually over the years I have found that I feel more at ease being left alone to get through the day at my own pace and then when I've done something however small I feel a sense of achievement, I used to set myself little goals but I think maybe that's not such a good idea as I feel disappointed and negative if I've not achieved them.
Yes when I say to people that I'm feeling a bit better ( sadly these words don't seem to pass my lips very often ! If they ask how I am I Sometimes say ' do you want the truth or a lie, the lie is much nicer' ) I think people then think I'm over it!
Like you I look at things around the house and just want to get on, I potter a lot and rest a lot and it's so frustrating especially when you're houseproud and have always been active, I hate it and sometimes push myself and do too much out of shear frustration but then there's always fall out from that.
Pacing is a pain in the backside but sadly very necessary, we have no choice.
steven69 said in my last post that the best advice he could give is to 'Be kind to yourself'
I have my fingers crossed for you that with everyday the Hydroxy will help you feel stronger and more able.
Hugs straight back to you xxx I'm not even house proud and beating myself up! Ah well, it's unlikely that you'd catch plague in the house, and there are no flies buzzing around. Good going xxxxxx
Haha well that's a plus...no plague no flies👍🏻....be proud 😃 It's been tough but I'm slowly learning to let things go in the house, as long as it's relatively clean, life is too short to worry about dust, right?
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