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Discussion Starter · #1 ·
Hi all -

Hope you are all doing well.

As some of you may know, I've been sick on and off since January with various mysterious viruses, UTI's and chest infections all of which have caused my lupus to flare. As a result, I've been bouncing up and down on steroids trying to get the flare under control.

Anyway, I've had more serious flares in the past, but this is just going on so long. I've a serious case of the 'blahs' (just lacking in energy and motivation), fatigue, aches, rashes and randomly swollen joints. I went to the rhuemy on Tuesday and she just said that I looked worn out. I think it hit me then how much I've been trying to hide this and how much of a struggle it's been over the past few months.

So, I wanted to ask how people manage to work with this? I know not everyone does, but for those who do. I've taken almost 30 sick days since January - that's 6 weeks of work! My rhuemy offered to do a letter for me for work and I've taken her up on that. I've to go back to her in 6 weeks and if there isn't an improvement, we will have to look at doing 'something drastic' - whatever that may be.

I'm not in any danger of losing my job because of this (although I may be made redundant next year), but I just feel so guilty! I'm the manager in the place I work and my colleagues are very supportive, but I feel so bad about the whole thing. Until today, I've just been forcing myself to go in - today I decided not to go in.

I'm not really sure what I want to say - I guess I just wanted to see if anyone has any tips, advice or stories to share?

Take care,

Nellie
 

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((((( Nellie ))))), I am so sorry you are feeling so rough. I can totally empathise I am flaring and it feels like it has been forever, I have hardly been well all year. I have had numerous infections triggering my lupus and RA. I am unable to work due to my illness. I used to feel guilty about that, but now I am grateful that I don't work and that I am able to do things I enjoy and look after my family. I really admire those with lupus who manage to work, I just flare if I do too much so the doc said I will never work again.

I can imagine how you feel about work, but you have to put yourself first. Its good you took today off, maybe you need some time off to rest and get right and then think about going back. Maybe you could cut your hours down or work from home some days? I am glad your colleagues are supportive. The letter from your rheumy will help.

I hope you feel better soon. Sorry I have no useful advice to give, but I wanted you to know you are not alone and that I understand how you are feeling.

Take care

Deb
 

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Discussion Starter · #3 ·
Thanks Deb! I guess I'll take it one day at a time, I do feel a bit better this evening so I guess the steroids are kicking in. I hope you start to feel better too - I was reading your post about the sweats - I hope the pred helps them.

Cheers -

Nellie
 

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Hi Nellie :grhug:

Sorry to hear that you're still feeling so rough. It sounds as if you have done what I did a couple of years ago and simply pushed yourself a bit further than you could go. It's not easy to find a balance and whether people can keep working or not or whether they need breaks from time to time will vary a lot from one person to another. It's so hard to advise and I suppose we're all so influenced by personal experience.

I initially stopped work at the rheumy's insistence for a period of two months - that seemed so long to me. Before, if I had been off even two weeks I'd have been climbing walls... this time the two months went in a flash and my overall feeling was of still feeling exhausted. It took me about four months to start feeling a little more "normal" but I wasn't able to go back to work.

Almost a year later I tried to do some part time work (as I could translate from home) but, unfortunately for me, my cognitive problems really had the last word there and earlier this year I had to face that I just couldn't do it any more. It was very hard to come to terms with. I'm a very independent minded person and have never been the "stay-at-home Mum" type. I completely stopped work at the end of June. I have no idea yet how things will pan out financially. My GP has said that I have to apply for invalidity and that's a process I'll be starting in the weeks to come.

I know that mine is not a very encouraging story but it's not all "bad". When I was trying to work I was an exhausted wreck. Life only consisted of trying to get through each minute of the day. Lessons with my students seemed so so long and each minute just another minute of torture. When I got home my life had just become one constant quest for sleep. I didn't even have the energy to concentrate long enough to talk to hubby or the kids.

Now, although things are not always great, life has a sort of balance and I can enjoy my family. I think the main thing that I am so glad to have lost is the stress and the pressure. I used to be the "best" (bosses words not mine) on the team and I used to get all the difficult clients, all the high levels, all the new projects... and every time I'd feel I had to give 100%. I tried telling work that I just couldn't do it any more but people really can't get to what extent this disease can affect you and, understandably, can't comprehend that you can't do what you always did.

I used to love teaching and translating but my overwhelming feeling now is one of relief.

Not all that is very relevant to you but over the last two years when going through all this I found it helpful to see how people had managed, how they felt and what they eventually decided to do.

I hope for you that the six week rest will be sufficient. If it isn't, remember that you come first and that being "selfish" is sometimes a very necessary thing.

Katharine
 

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Discussion Starter · #5 ·
Thanks Katherine - I think you hit the nail on the head, I do find it useful to find out how other people cope in similar situations and how they get through.

Thanks for posting your story -

Nellie
 

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I am also one who gets "the best" results at work, more evidence ( if it were needed) how we push ourselves. I drag myself in no matter how I feel as a rule. I start at 10.30 am and finish at 9.30pm, I work 6 days a week and I know I shouldn't....there was a time when I couldn't and the illness forced me out of work...

I guess the part of us that wants to be "normal" pushes us to our limits . If I could give up working full time I would in a heartbeat. My advice is if your married or have someone to look after you give up or drastically cut your hours
 

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Hello there,

Katharine hit the nail on the head when she speaks of exhaustion to the point of not being able to chat with the husband or kids............that was me too.

I agree if you have someone to help with the bills then by all means cut your hours down as much as possible. I am sorry your having such a tough go of things but glad your employer is understanding. Mine was not, forced me out of my job and I never looked back.

Hindsight being 20/20.............best thing that ever happened to me.

Take good care of yourself Nellie and be kind to yourself too.:wink2::wink2::wink2:
 

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Discussion Starter · #8 ·
Cheers folks -

You've all given me much to think about - I really appreciate the replies.

I'm not married and don't have anyone to look after me so it's not really viable for me to cut back or give up work. I also feel like I have to cling to my job in these recessionary times!

I'm on annual leave for two weeks in August so I'm really looking forward to that guilt free time off - I guess I'll just see how it goes. If I'm not made redundant next year it's very likely that I will have to reduce my working hours anyway so I may be getting that extra rest anyway!

Take care -

Nellie
 

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Discussion Starter · #9 ·
Slight update

Hi folks -

So here is a slight update from me - the last time I posted, my rheumy had put me back up to 40 mg of steroids.

Anyway, I've tapered down to 10 mg and I don't really feel any the better for it. I still have that case of the 'blahs' and it just feels like an endurance test to get through the working day. I'm achy and stiff and the mouth ulcers! Oh! The pain. I've tried so many things to try and get rid of them, but nothing is working and now my teeth are all stained from the various mouth rinses I have tried.

I'm mildly depressed I think - I went to see my GP and he offered me some anti-depressants, but I am going to hold off until I see the rheumy next week. That appointment really can't come quick enough for me!

I got the blood test results back from my GP today - someday I hope I'll get results back and none of them are abnormal! But they are more of the same, low white cells, low platelets, low neutrophils etc. The GP ran a complement screen too and my C3 and C4 are pretty low too - 0.54 for C3 (normal range 0.75-1.86) and 0.03 for C4 (normal range 0.13-0.49).

So I started this post saying it was a slight update - there isn't really much to update though as I just seem to be right back where I started, despite me diligently swallowing my pills.

Maybe next week .....

Nellie
 

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((( Nellie ))) I am so sorry that you are still struggling. No wonder you feel down, its horrible when feeling ill drags on and on. I hope the week passes quickly till your rheumy appt. Are you back at work? Make sure you tell your rheumy how bad you are feeling. Let us know how you get on.

Take care

Deb x
 

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Discussion Starter · #11 ·
Hi Deb - thanks! Yes, I'm back at work, in body if not in spirit anyway. I will indeed keep you posted -

Nellie
 
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