LUPUS UK
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Fatigue

Hi,

How do you differentiate between fatigue and general laziness? I hate these dark mornings so I struggle getting up even more. Sometimes I can be at work for half an hour and feel ok and sometimes I can feel like I ran a marathon on my way to work but by then I’m too exhausted to consider travelling home.

Im sure I shouldn’t be pushing myself as much as I do but I find my illness hard to accept in the sense that I can’t do as much as I’d like to and it’s like admitting defeat.

I’ve been diagnosed 11 months now and I’ve got my next rhuemy appt in early Feb. I find it hard to talk about it as I don’t know how to describe it besides “meh” but everyone gets like that so there can be a lack of understanding.

Because I push myself I suffer the consequences later but I try not to let it impact my work. I feel like having a half decent personal life jeopardises my working life but I never give in.

Any hints, tips or advice would be greatly appreciated.

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Hey, this is exactly how I feel too, I’m still not formally diagnosed but have felt like that all through my teens, only now thinking it was justified?

I am always pushing myself too hard and then wander if I’ve just made it worse for myself or caused my own problems, it’s a real chicken and egg situation.

Getting the balance is difficult for me, I often end up doing so much that I’m then burnt out in every way for a few days, having to go to bed ridiculously early, back on naproxen, hot water bottles...everything...you have just got to learn to pace yourself, I try not to over commit now incase I let myself or others down and allow a day or so in between stuff to recover physically and mentally.

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That’s my issue, I don’t know what the balance is and if I do too much socially then it might affect work and I’m scared of that being frowned upon but surely I’ve still go to have a life.

Likewise, why should I always burn out at work so I can’t have a social life.

So far I’ve been ok through the winter and haven’t had many flares but the Raynauds is bad. I finish work tomorrow until new year so I don’t have to worry about getting up early xx

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Hey

Please don’t laugh, I work OUTDOORS..I’m only just starting to take the Raynauds seriously as I’ve had it since teens and thought it was just crap circulation (varicose veins since I was 8) so just ignored it to some extent, but the pain I get in my hands is pretty bad too...I’m also pretty bad at social situations, find them mentally and physically exhausting so I prefer to bail out and stay at home anyway, but then I’m only just starting to put the pieces of my puzzle together and maybe my ‘always being like that’ is where this Lupus has sat in the background throughout my teens and I’ve just thought it was me if that makes sense?!

Plenty of notice for big social events works for me so that I can mentally and physically build up to them, I’m sure the slogan ‘I’m the life and soul of the party as long as it’s finished by 9pm’ was written for me!!

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Hi N1k07a

It really is not laziness and do not let anyone tell you different and more importantly do not convince yourself it’s you being lazy! The hardest part of this horrendous disease is the realisation that you cannot do what you used to do and how other people genuinely think your just damn lazy. I am 46 years old (although I feel 80!) and have had SLE and Fibromyalgia for 20 years now. I have had to stop working permanently just recently due to the constant pain and the chronic fatigue I experience every day. The pain can generally be managed although not when a flare occurs but the fatigue can be unbearable. I have worked continuously since leaving school for only two companies so I have always classed myself as a good employee, but recently I found the more I pushed myself at work, the more stressful it seemed and the more tired I became which in turn made me ill therefore it became a vicious circle which I no longer could be a part of. I had to leave a very well paid job to a very poor benefit system. The thing is I am now a lot less stressed resulting in the fatigue a bit more controllable and I am a lot happier in myself, although not much money is not too much fun, but we cannot expect everything! All I can suggest is do not let work get to you as it will still be there tomorrow. Do what you can at work and no more and don’t worry about anything at work, you and your health is far more important than what’s happening or not happening in the work place! Please find someone to speak to about how you are feeling. Do not keep things bottled up. Speak to a partner, a friend, your GP, your Consultant or anyone who will listen! You will be amazed what people’s reactions will be! I kept everything bottled up until it got to the point I was referred to a Psychiatrist with depression, I learnt that there are people out there that let you rant on, moan and have a good old cry to. I took my partner along so she could understand how I was feeling and it done wonders for our relationship! Keep the faith and all I can say is do what your body will let you do and do not push yourself for no one, it’s not worth the pain or the chronic fatigue, just take your time and chill! 😁💤👍

The best of luck to you,

Col.

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Thank you for your reassuring comments. I guess I’m just coming to terms with the diagnosis and will have to accept that my life has changed and I can’t do what I could do previously.

Luckily I finish work tomorrow and I don’t return until the new year so I’ve got a decent break to have some “me time”.

Already on the anti-d pills. My Dr has tried me on them for a month and now put me on them for the next 6 months to see how I go.

If I wasn’t off work from tomorrow I’d be going back for an increased dose as I feel like they’re not as effective as they first was.

Without work the anxiety should really ease off.

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Your story is sooo familiar, I have same diagnosis for SLE and fibromyalgia, about 20 years! I was diagnosed when I was 21, that lasted for two years, then went into remission for 12 years, only to return, and this time again with a vengeance, no remission in sight 😕 I keep trudging along myself, I also lost a great job.., only to lose my health, house, and car 😐 I finished raising my 4 kids, who are awesome! I myself have also learned about pacing myself, and letting some things go, which was not my nature, being a go getter myself. I have also been blessed with caring and understanding physicians and counselors. One day at a time! 😉😇😁

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Hello Everybody,

Just a quick reminder:

YOU WORK TO LIVE

NOT LIVE TO WORK!

Try and enjoy those pain free days and always enjoy the things that mean the most to you, like your spouse, your children, family and friends. Everything else in the scheme of things are not worth worrying about!

Good health to you all,

Col 🦋😴💤

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Best of luck to you also N1k07a 😇😉

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It’s very difficult to accept the fatigue. I think only other people with our disease really understand as ‘normal’ people sometimes think we are just experiencing their normal tiredness when ours is so debilitating (and can be very depressing). You’re definitely not being lazy. I always feel the same in a big flare and start to wonder if I’ve just become lazy but then the flare lifts and I realise it was just the lupus attack.

Hopefully you will have same times inbetween where your energy returns - especially if you get some treatment but until then you have to learn to pace yourself (easier said than done, I was rubbish at it until recently!). When I was really bad I had a day in bed every other day then as I recovered I divided each day into 4 sections and made myself rest for one of those.

I’m not sure if it worked or if I just got better over time as lupus does that but I’m almost fine now - after 7 months of crawling up stairs and feeling deeply exhausted I have pre lupus levels of energy so you might too soon.

I am on steroids which helps me a lot but I am currently thankful about 8 times a day for all the little things that now seem so easy that were so exhausting before.

Have you told your work? Can you do some from home? That really helped me if I was having a bad day and when every day was a bad day I just had to be off sick. Don’t push yourself too hard because it never works with lupus

X

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Hi N1k07a,

Fatigue is one of the most common symptoms of lupus; it affects around 90% of lupus patients. We published an article on our blog about 'managing fatigue' which contains helpful tips and information which you can read here lupusuk.org.uk/managing-fat...

It is advised to not push yourself too hard as stress can be an important trigger of lupus. If you need information about lupus and employment, including information about your rights and what support services are available, we have two booklets that you can read and download at lupusuk.org.uk/working-with... If you need physical copies sent to you, please email me with your name and address at chanpreet@lupusuk.org.uk .

Sometimes, certain situations can be overwhelming which is why talking to someone can help relieve worries and anxiety that you may have. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me.

Before attending your appointment you may like to read our blog article about getting the most from medical appointments here: lupusuk.org.uk/getting-the-...

Wishing you all the best.

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