[purplesnowflake]

Hi. It's me again
Still off work. My legs have sme strength back and I can potter abit before they start wobbling and giving way. I have phoned work and I'm not sure how to play it. I spoke to my boss and she wants to know how long I'll be off and what it is etc? I do nt know how long my legs will play up - I really hoped they 'd be strong enough now but I know if I struggle in they'll give up completely again. It is like they are running on supermarket value batteries instead of good quality ones. I also do n't know what causing it. She also wants to know if I want/ will be able to continue studying for my nvq. I wanted to study so eventually I could qualify to be a librarian instead of library assistant as I am now. I love my job and I do n't want this thing to affect it. I've already given up one career because of this thing affecting me. IShe's says she'll talk to me about the course at the end of the week.
Have n't heard from dr yet either. Worried she's got letter form hospital to say it's all in my head like first dr at a and e thought and decided i'm fine.:worried:
Fed up again!!!! And bored of being stuck in house!!!!!!

 

[LolaLola]

Hello, Unfortunately, unpredictability is part of this illness, and your Employers will have to learn to accept that. It sounds a little like they are "punishing" you by querying your ability to carry on with your Course. I may be wrong. If you have a Union or Occupational Health I feel an introductory chat with them may be a good safeguard.
x Lola

 

[Meriel]

Hi Purplesnowflake

I'm at home at the moment too so I can totally empathise with you. I've struggled with work over the last few months and haven't known what to tell them. I've now spoken to HR and Occupational Health and have made them aware of my situation. Could you do this?

I have also changed GPs because my previous GP didn't know very much about Lupus or how to manage it. One thing that I am learning (SLE is fairly new to me) is not to go back to work too soon otherwise I usually go straight back into a flare, so try and take it easy if you can


Meriel

 

[granny weatherwax]

Hey purplesnowflake

I am sorry you are having such a rough time at the moment so sending big hugs your way.

Like Meriel I have changed my GP to one who understands Lupus better and is happy to listen to me and help me to help myself shall we say. She helped me with my employers and got my hours reduced and got my bosses to listen to me. I will say since then they have been really supportive. I was at work covering a branch last week with one of the directors and I was having one of my little dizzy do's. Even he said (not to me of course) that I looked rather off and strange! Bless him.

I hope that you find some answers soon and are feeling better.

Take care
Claire xx

 

[onetay]

Hello sorry to hear of your problems. I have a few questions if you don't mind. Is it just the legs or is it energy also? Have you asked if there is work you could maybe do from home? I was thinking that if it is just the legs you might be able to work in a wheel chair. It is not most likely what you would like to have people see you in but at least you could work. You might ask if there is something that you could be seated all day and only use the wheel chair for like lunch, bathroom, etc. Not sure I helped very much and for that sorry
Tammy

 

[pollianna]

Hi, I am having the same problems and do feel for you. It's weird when your legs just wont keep going and your taking them for a walk instead of the other way round. Mine are painful as the joints seem to be being attacked. Do you have pain?. You might try getting a cane for use at home to take the pressure off of them. Do you feel that they are too long? I noticed when I start to become aware of them that they are getting weaker and then I try to lie down and keep them raised until it passes. I sleep with a pillow between my knees which takes the pressure off of the spine.

I don't know what to suggest at work as I am not sure if you have a definate diagnosis. Hope you feel better soon

 

[purplesnowflake]

Hi Guys. Thank you for all your replies.
My legs have started to behave abit better and I'm hoping to go back to work next week even if I have to use a stick if I'm walking anywhere. There will hopefully be stuff I can do sitting down.I will contact my union to find out where I stand if this keeps happening. I'm just dreading the questions as I'm not diagnosed with anything yet and not sure what is happening with me. I've not heard about my appointment yet.
My joints (all of them) have decided to hurt like crazy and I do feel really tired.It's like recovering from flu. At least my dog is enjoying all the hugs she getting while I'm resting. Luckily she is a really lazy dog and is happy to chill out.
Hope you all ok.

 

[pollianna]

Aww snowflake, it's so hard when they haven't diagnosed anything. I find the best thing at work is honesty. Tell them that your awaiting diagnosis, they are sure to understand. good luck with getting to the right practitioner