How to be tired

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

4 Replies

  • What has helped me when fatigue has been a big issue:

    - ""sprints"" - break tasks into small chunks - even if you wash only one dish and then are exhausted its something

    - to do lists - put bite-sized tasks into a to-do list when feeling energized pick something and do it

    - think about ways to organize things so you can stop midway, example: if shopping - sort things while packing - i.e. freezer stuff in one bag, refrigerator stuff in another - if get home and too tired to put things away - stuff the whole darn bag in freezer and forget about it.

    - self-appreciation: one dish or two pages of a reading assignment may not seem like much, but if one gets them done be proud of it - take into account that it was genuinely hard given your level of tireness, but you still got it done!

  • Soph, I don't have any answers, as I battle similar issues (another exhausted, brain fogged, long sleeper!) - I feel for you trying to battle through Uni. Unfortunately I had to give up any idea of full or part time doings as my lungs werent having it. Now the AI is added to the mix Im struggling more - I thought treatment would help but at the moment all I want to do is sleep. Not sure why but its pants.

    The only suggestions I have is like Beth said (but Im crap at it) of setting yourself small goals each day and pacing yourself. Frustrating as it is to have to do it, at least then you feel like you've done something rather than nothing. If only I were so good at following my own advice ha! x

  • Soph,

    Good luck with the endo appt and I hope they have some ideas to help you manage and minimise the fatigue.

    I know the feeling too and it is horrible.

    In terms of how do people manage to live and function, Beth and nurse furby have great tips. It sounds like you could do with help managing fatigue be it self help in the form of advice and information from reliable books or websites. Or even if appropriate for you and if available in your area, a chronic fatigue service in the NHS.

    Practical bits,

    * Pacing helps,

    * cook several portions of meals at a time if you have the space,

    * keep a bottle of water nearby to help with fluid intake,

    * Exercise regularly, even a short walk out of the house, can help

    The spoons theory is good.

  • Hi Soph - and Lynda too,

    I find that when I've been very low on cortisol, when I first get corrected I'm actually very sleepy. I guess it's the compensatory-adrenaline leaving, and all the various processes that need to rebalance.

    Of course exhaustion is a symptom of cushings as well as AI... so that's all rather complex. Basically I seem to eventually hit a sweet spot where I'm no longer knackered after a bit of stability.

    On the muscle weakness - for me that usually means my electrolytes are/have been out of whack. Could that be partly to blame?


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