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Discussion Starter · #1 ·
Hi everyone,

Haven't been online for a while as not felt like talking. I am still off work and trying to recover from my flare in March 08, but seem to have stagnated.
I have recieved my blue disabled parking badge, which I was advised to apply for as still need a stick to help with walking. I am still needing regular rest periods due to extreme fatigue, need help with bits at home and not able o return to work. The latest blow is that I have to be assessed by the Occ Health Dr to see if I am allowed to return to my current post as SSN in ED, which is the only job I have ever wanted to do since I was little. I am trying to improve my fitness, having regular hydrotherapy and each day go for a walk with hubby and try to extend the distance I can walk without my stick, although some days I can't manage as far as the day before. If I can walk without the stick and manage a 4 hr shift I can start back on phased return, but I don't know where I would be working as could be redeployed to another area of the hospital. I've had to increase my pred again, still have joint and muscle discomfort and my moods are up and down like a yo-yo, one minute I feel positive and confident the next I cry at the slightest thing and just want to shut myself away. If I'm not allowed back to work by beginning of September then my wages drop to half pay, which will only add to the stress as this will then cause financial problems. I don't know what to do or which way to turn, but am trying to remain positive for my family as I don't want to cause them anymore worries.

Sorry to moan, but I am feeling confused etc. and don't know what to do. Are these feelings/mood swings part of Lupus and the infamous question - will I get any better or am I at the best I am going to be now?

Take care everyone

love beanbag :sad::worried:
 

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Hi Beanbag,

I can absolutely relate.:worried:

i was off work for six months last year following my first systemic lupus flare and felt that pressure to return to my work as a nicu nurse.
I felt very well supported by occie health and followed a phased return starting at two three hour shifts per week initially doing admin and reviewing protcols and stuff, on the unit.

Looking back though....and comparing how I am now......I returned too soon. I got through each shift on adrenaline I think and I remember my moods being all over the place. The fear of 'failing' didn't help.

Now I have reduced my hours permenantly to 3 shifts a week with the approval of my rheumie and occie health. i never count chickens with this disease so I'll just say 'so far so good.'
I hope you gain more strength from the increased pred, but there really is no rushing this wolf. Also don't see the occie health assessment as a threat.........they too want you to get back to work but in a safe and sensible manner.

Good luck and take care
 

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Beanbag,

Sorry your having such a rough go of things right now.

I would not rush back to work too soon as this is not a good idea.

I miss working. Now I long for adult conversation that I used to take for granted.

I sure hope you get feeling better.

Any thoughts on cutting back your work hours?
 

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Hi Beanbag,

Things don't always progress as quickly as we want. You are doing the best you can with the therapy and walking.

The mood swings are two fold. One is getting back to work, the second could be the prednisone. When I am on higher doses of prednisone my moods can turn on a dime.

Take care,
Lazylegs
 

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Discussion Starter · #5 ·
Thanks to you all for your advice and support. I am trying to stay positive and think of ways I can adjust my hours etc. for when I return. Last year I reduced my hours to 30, which did help but I think the 12 hr shifts didn't. I am in discussion at changing my shifts to 7.5 hr, means I'll work 4 days instead of 3 but at least they are only short shifts instead of 2x12 hr and 1x6hr. Also contacted RCN (as advised by colleagues) to enable me to know what my legal rights are and what questions I need to ask when I have my review next month with HR, management, Occ health etc.

Once again, thanks for your support. I'll keep you posted. Just off for my afternoon nap then going to make some more christmas/birthday and anniversary cards. A hobbie I love doing.

Love beanbag
 

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Dear beanbag
I am sorry you are feeling like this just now, you need to be kind to yourself a bit I think. (I recommend chocolate, warm baths and sleep whenever you want - if you can of course).
The roller coaster of emotions you feel are, in my experience, pretty normal for lupus but over time I have found them easier to understand so they don't hit me like they used to. My partner usually knows I am flaring when I start crying about nothing very much and my anxiety levels go up! Also like someone else said Pred can make you moody or high. Or both!!
You are absolutely right to do something you enjoy like card-making. I got into embroidery and patchwork when I got very ill and it really does help, I got bullied into classes by my community nurse.;) The bonus was I was not working so had more time to do my hobby and get better at it.
One thing I know about this illness is that it is best to live to the full in the present rather than worry about the future tooooo much. I am well when I least expect it and then can be not well at all for seemingly no reason. I do appreciate that this up and down stuff, plus the physical problems, makes it hard to work and also I understand the financial worries. I chose to accept a simpler life with less money because work was impossible for me but it is not always an option for those with families.
Everyone is different with Lupus so that question "will I get any better" is not one I have ever got an answer to. However ffter 8 years of coping with lupus I am one of those cases that is really no better and yet not much worse. What is better is the way I deal with the pain, fatigue, infections etc. etc. And my asking for help (which I was lousy at before, I had to swallow an awful lot of pride). So overall medically I a tiny bit worse, psychologically I am much better and would go as far to say I have become a kinder,less frantic, more patient and caring human being. So lupus is not all bad all the time for some people as you can see.
Gentle hugs... take good care of yourself, there is only one of you are you are special.
Sara
x
 
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