Same old s*** different day! : Does anyone else... - LUPUS UK

LUPUS UK

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Same old s*** different day!

Sara_A
Sara_A

Does anyone else just feel like their life is just like one long vicious cycle of pain, tiredness and exhaustion!!?

I get up every morning and it’s just the same old s***, can’t/ don’t want to get in the shower cos I’m so stiff and in pain, then it’s a short walk to take don to school, killer on my hips now it’s cold again.

Then I spend the rest of the day with my 2 yr old just trying to stay awake til it’s time to collect my son.

Then struggle to make a meal for t or just do the kids t and dad will have to fend for himself when he gets home, then struggle to bath kids so usually have to wait for dad to get home to do it. Get into bed at 7pm when kids go up read if I’m not either too drugged up on pain relief or have a migraine or just soooo tired can’t physically stay awake. Am asleep very early anyway and then I wake up for the whole s*** cycle to start all over again!

I’m on so many meds and quite a high dose of immunosuppressants so there’s not really anywhere else to go from here so I kind of think this is it for me this is just how life will be.

At the moment I only have to be laid, sat or stood still for about 10 mins or so and am so stiff.

People really don’t realise that this is how restricted our lives actually are, I can’t even just pop out and do a food shop, I may as well run a marathon!

Met some friends at soft play this morning and I was just sat looking at the soft mats thinking I could actually just lay down on them right now in here and go to sleep, no joke! I always say to people I could literally go lay out on the pavement and go to sleep and they just laugh like I’m joking!

Anyway that’s my moan sorry!

6 Replies

Yep. Sums it up nicely, Sara. I cannot tell you how much I admire you for parenting young children whilst you are coping with this. I've always tried to tell myself that even on the worst days, I can do something useful for my daughter in showing her how to deal with illness and disability with grace and humour. However, that's how I imagine things when I'm actually feeling OK! In reality, on a bad day, I'm mainly modelling "grumpiness" and "whining".

Bet you are much better! x

Sara -had to smile at your very visual description of your day, I been in the phase of - if your don't laugh, then I might cry mood, kinda living from moment to moment for the same reason plum tired...tired

If I analysis to much I think it can be oh so depressing & that could be also due to the disease & exhaustion...

I too admire you with coping with little ones, that hard even for healthy moms...Tough when your really tired.... I tend to try & find ok moments where I feel ok for a minute or more & acknowledge it & try to find something pleasurable in my day to make the struggle a little well worth it..

today was some nice music 🎶 to enjoy & a joke about paperless day at work (it world paperless day) & as my work involves caring for paper (historic that is) we sent a photo out of me working on a parchment to the rest of the company 😀 no paper (their request for photos).....they turned off our photocopier s, etc... I was very close to offering to teach with my artist colleague how to make paper - for appreciation purposes....made me smile.... at least they didn't say toilet paper was out 😂.

So thanks for ending my day with making me smile at our struggles...it the desire of just wanting to put your head down anywhere....been there for sure & many moments like that.... Hug to you. ML

I admire you very much indeed for what you cope with, and with two small children. I was knackered by mine and I was well. All I have to look after now is my dog and the poor hound annoys me sometimes.

You are a gem x

moan away, we've all done it. sometimes just putting it in to words helps. In a strange way seeing what others are going through makes me glad I have my version of ill health than other peoples because I think subconsciously we learn to deal with our own version even if we don't feel we are and we feel relieved we don't have what others are coping with. for example I see posts by people who get skin reactions from ordinary lighting, I don't get that and don't know how I would cope with it. Yet others may read about my problems and be thankful they don't have my problems. right now I feel I could join you in sleeping on the pavement ;)

Well I’ve just been on the school run, I think on auto pilot and I kind of ‘came to’ in the playground and was like oh god I’m here and I’ve got a feeling I look pretty rough! Like I looked really knackered!

Just started topiramate and been feeling quite sick on a morning especially and no appetite at all really, I do need to lose about 2-3 st thanks to the steroids!! But think this is adding to the tiredness but am ready to go to bed now and it’s not even 4pm! Even the kids aren’t ready for bedtime yet!

Still got my shopping delivery to come yet and don’t even have to energy or inclination to just put it away! Maybe kids will help! 2 yr old likes that job! X

Yes, everyday sadly xx

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