Four years and the fatigue still catches me out

Today is supposed to be a working from home day for me but I'm still in bed struggling to convince my body that it can get up. I have lots to do and time is flying by. Then I decided to visit this place as it always acts as a grounding experience reminding me that I have a serious condition and my body really can't get up and what I actually need is sleep.

If sleep is not in my gift then what I need is kindness to myself. A gentle voice encouraging and reassuring. It's so easy to step into reprimanding and feeling guilty that friends and family around you feel bad for 'wearing you out'. I don't want my friends to feel responsible for my fatigue I worry that it might make them think twice about visiting or inviting me out.

I'm smiling as I consider that so many days on and I am still thrown when fatigue hits. How easily fooled I am when I have a period of wellness.

Thank you for reading this and I hope it resonates with some of you out there and helps knowing that a positive attitude is imperative the occasional reality check is necessary too!


Ps. My partner is doing a parachute jump to raise awareness for lupus, please donate if you can.

5 Replies

Glad to hear you are being kind to yourself. That's what we all need the most yet one of the things I think we struggle with the most. Will check your partner's fundraiser out. How cool is that?

Hugs from USA



Thanks Joy! you are absalutely correct. At times like this i try and talk to myself as I would if one of my girls were unwell. I think I'm hit hardest when I have been feeling really well. For example last weeken I tried our rockclimbing for the first time and although it took me a few days to recover i felt great. therfore, feeling so beaten this morning really just doesnt make sense. I guess its not a rational process is it?!

Hugs from England


Hi, yes can completely relate. A few good days of wellness does tend to trick us. I think it takes time to learn this......after not pacing myself a few weeks ago I am totally practising 'rest' periods now. Just doing exactly that now....herbal tea, quick look on here then sitting down to energise for the afternoon. I did the same yesterday.....sat for an hour and watched escape to the country. It probably sounds blissful to those that don't have this condition but it is very necessary for us. Take care xx


It takes time to learn how our own body reacts to different things on different days, and just when we think we have cracked it - it all changes again !! Just listen to what your body tells you, if you feel up to doing something - do it and enjoy it and even if you have to rest afterwards even for a few days, it's still worth having a go at doing things. I try not to let it dominate my life and accept that when l need to rest l do. Certainly keeps us on our toes or backs as is often the case :) Take care .


Hi It most certainly takes a lot to understand our own bodies cause we are all so different , tho we do suffer the same Lupus ails .Can i ask a question ,before I go on, Is this working from home for a company that you do so many days / hours in their workplace ?


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