I’m sick of being ill and tired 😓 : I know this is... - LUPUS UK

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I’m sick of being ill and tired 😓

Kelihunt41
Kelihunt41

I know this is nothing new for everyone on here but I’m so sick of being tired. I try and rest as much as possible but I feel my life is on hold. I can’t seem to do anything without feeling chronically tired. I’m on Azathioprine so understand that this doesn’t help. Just wanted to vent to people who understand. My work is fairly unsympathetic so try to avoid time off. Husband is amazing!! Just really fed up. Xx

5 Replies
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Hello Kelihunt41,

Very rarely do I ever wake up feeling refreshed and bursting for life. What I have learnt is that I am a tired person, but I’m also a fatigued person.

Fatigue to me feels far much worse than feeling tired. I’m not sure you can relate to this.

So my mind set is, accept that I am always tired, but my mind is so strong I can get through it. It takes a lot of will power to get through most days.

When the fatigue hits , I’m no longer strong , I can not even try to be, I become a different person all together. Them days I will rest and feel sorry for myself and close off from the world .

This may not work for you , especially if you are feeling more fatigued than tired.

Sometimes certain aspects of ourselves we have to accept and make them as good as we can using a positive mind.

Most importantly is if your having a good day you grab it with both hands. Maybe make a little video of yourself on a good day, to remind you of who you really are on a bad day. I forget this bit too easily and I’m still trying to find a more manageable solution .

How long have you been on this medication? Maybe you could visit your gp and discuss this with them, they may be able to prescribe something else to rectify the side effects?

Whatever you do, politely remind yourself of who you really are, and this is a hurdle for you to jump, which in time you will

Xxx

Paul_Howard
Paul_HowardAdministrator

Hi Kelihunt41,

Fatigue is definitely one of the symptoms that most people with lupus struggle with and it is unfortunately one of the most difficult to treat/manage. If you haven't seen it, we do have an article about managing fatigue on our website which may be of interest - lupusuk.org.uk/managing-fat...

I'm sorry to hear that your work are unsympathetic. Are they aware that you have lupus? Have they made any adjustments to help you manage better in your role? We have a couple of booklets about lupus and employment which you may find helpful. You can read/download them from our website at lupusuk.org.uk/working-with... and if you need physical copies posted to you, just send me a private message or email paul@lupusuk.org.uk with your name and address.

Oh yes I can so relate to this!!! I am really struggling with fatigue and exhaustion at the moment. 2 days ago I was having to come down the stairs on my bottom as had no energy to walk down! And managed to stay awake 2 hrs before needing to go back to bed and today I’ve managed to get up and be fairly normal for me anyway!! It’s just a rollercoaster and so hard as this is the worst part of the illness and most difficult to treat. I just wish there was a tablet to take that could make it all go away.

I think I’ve woken once in my adult life that I can remember when I’ve actually felt ok and like I’ve been to sleep. I never wake feeling refreshed I always am waiting to go back to bed!

Oh Yes...the FATIGUE..........I HATE it

Hi,

As most of us I can relate. I found the Pain Clinic Group helpful. Just things you probably already know but good to be reminded of. Most importantly (for me anyways), if you are doing a task at home, rest as soon as you start getting over done.

I'm sure the links Paul has sent have more help than that.

It is harder if you're still working though. It does get to you. You are so lucky to have an understanding husband!!!

I wish you all the best and I'll send positive thoughts to you.

😊🌻🌹🌼🧚‍♀️🌸🙋‍♀️

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