I think a combination of asthma, adrenal insufficiency and depression has robbed me of any vague levels of energy i used to have. I'm on pred at themoment, and so can usually be awake a 10hrs before im falling asleep wherever I am. Off pred i can cheerfully sleep 18 hrs a day, i set alarms especially to wake up to take meds and pretty much other than that I just sleep. That is something I'm going to discuss with my endo on the 6th of Jan, but I dont think endo stuff is going to 100% be the answer (the only reason i suspect its part of it is that pred makes such a difference) and sadly my GP is pretty disinterested in any answer that isnt 'over-medication' so as i'm massivly feeling the effects of some of the meds we've dropped i'm reluctant to go back to him as we're down to the bare bones of what i REALLY notice fast if i stop and I don't want to loose the ability to function.
my question is ho do people live when they're so tired. In an ideal world I wouldn't have to drop out of uni, and move back home but frankly I cannot function as I am and I can't ask my friends to live with me. If i lived by myself then it wouldnt matter if dirty dishes piled up in the kitchen as no-one would be there to be annoyed, but i also suspect i would quite frequently not eat. But I don't know how to cope with it. If i am in bed, and really need to get up for something I will leave it till the last second until I do, and my brain will come up with any excuse not to do it (I have had to start maknig sure I am drinking enough as frankly getting up to get a drink and THEN getting up to go to the loo seems like a whole load more effort than doing neither) in terms of uni and getting to lectures I often am able to physically go, but so often am passing out i've even started dreaming with my eyes half open in a vague attempt to stay awake. I am so tachy (esp since stopping the verapamil) and with the uniphylinne I do try to avoid excessive caffine, not that it does much anyway. But does anyone else have any ideas for how to manage this level of tiredness?? even just tips you've learnt from short term that could be do-able long term.
Also, as well as the tiredness i am physically very very weak atm (again, im blaming steroids, although my instinct is to blame too many steroids this time) and i cant make the bed or shower and wash my hair properly anymore. exercise doesnt feel to be doing much and with it being so very hard to actually do any weight-lifting type stuff (or even just raising and lowering my arms alone) that i am strugglnig to motviate myself, but if people have experiecne of this and have found that eventually the exercise does start to help, just much more slowly than usual then i will try to get back to doing that! any other tips for the muscle weakness??
also - seemed like an sppropriate post to share this cute little story i found abiout spoon theory, i like it, thought some of you guys might
hugs to all! hope we're all going to have a healthy and fun xmas!! xxx