The Lupus Awareness Month Diaries: Day 24

Good evening,
So everyday starts like this now:

Because I’ve finished working for this month, most nights I’m not setting an alarm. Sometimes I’m woken by noisy neighbours, sometimes from pain but in all cases, I’m too tired to get up!
I’m really, really tired!

Aside from muscular pain and joint stiffness in the morning, I also get pins and needles and an all over crushing type pain. There’s something about waking in pain and feeling tired enough to go straight back to sleep, that puts you in bad mood.

I know it’s related to Lupus and Fibromyalgia but my body is so deconditioned that I always feel close to collapse for most of the day. In my past life, I’d walk for miles and love it. Walking was a big part of my routine, especially as I didn’t start driving until my mid 20s.

Today I left the house around lunchtime and felt ok, by 3 I was ready for a nap! I’ve not done too much today but I’ve seen family and friends and went to my favourite place for lunch.

It’s gone 8pm and I’ve still not made dinner. I just don’t have the motivation to do it! I live in an open plan flat and I could be in the kitchen in less than 5 seconds but the thought of cooking is actually making me tired!
I know I have to do it, along with putting laundry away but for now, it’s not going to happen. I know if I asked someone to come help me they would but it’s late and I don’t want to be a pest!

I’m really tired of feeling tired and really tired of feeling lazy! I sleep in because getting through the day requires so much energy. It’s a luxury to get the time to rest and it makes sense to take advantage when you can. But you can’t help feeling lazy when your day starts at 11am not 6am. I think depression encourages you to sleep more too. It’s not a case of lacking the motivation to get up and go, it’s the physical limitation to get up and go. Therefore, might as well stay in bed?

I don’t ever want to be perceived as lazy. I posted before how Fibromyalgia impacts sleep. Fibro prevents you reaching the deepest stage of sleep and so you never really have quality sleep, nor do you feel refreshed in the morning. It’s the height of frustration! Sometimes I really beat myself up but then remember that I’m doing the best I can. I’m doing everything I have to but with pain and chronic fatigue. Simply getting through the day should be enough. I should do a little victory dance before bed! That goes for everyone else battling this horrible illness.

I’m gonna sign off now. Still haven’t made it to the kitchen and I can’t see that laundry going away anytime soon. Maybe tomorrow…


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