Feeling tired of fighting!

Have been mega poorly lately with kidney infection, chest infection and sickness bug. Am on prednisolone, hydroxychloroquine and methotrexate and been told by my rheumy am immuno deficient. Was signed off work two weeks only to return this week and be told they cannot tolerate my absence any longer. Have been told I am allowed no more than four days absence up to Easter, if I cannot keep to this HR will deal with me direct. Have already been seen by Occupational Health and have now contacted my Union again for further support.

I am so tired of fighting illness and lupus, juggling different pills and then my blood INR goes sky high.

My work lack understanding and have no compassion, they do not understand I have no control over my illness. Am so tired of putting on a brave face and what makes it worse is I know this is the beginning of a very long road of battles at work - my Occupational Health report was talking about tribunals!

I am really worn out and have very little fight left. :(

13 Replies

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  • Don't know what you do for a living, but you need to get the union on side, I am a staff nurse and work for the NHS, they are not the most understanding employers, I have the RCN union on my side and whenever I have to have an HR review, a rep comes with me, and believe me they are amazing!!

  • Hi, I am a part-time teaching assistant at a primary school. Have been there over nine years now. I am so relieved I joined the union - I kinda new things would come to this as things have been brewing for a couple of years now. The union are supportive and make me feel I am not alone. I fear what I will have to endure though. Thank you for your encouraging words :)

  • Why is this desease not recognised by the so-called health authority.Only today I discussed with an Age Concern Legal Advice Officer.I had to explain to her(the best I could)what Lupus was.I have also had breast cancer and i am absolutely discusted at how difficult it is to get help. I just don't where to start when it comes to getting proper advice.I wish I could help but,I can't.

  • Thank you Binkey - it is so hard to get the message across to people. Lupus is so vast and what I find most frustrating is I always look so well and people fail to realise how poorly you are. I find some of my colleagues begrudge the amount of time off I have - it all adds to the stress I guess.

  • Are we getting the message across though,that is what really concern's me.I am sick of'you look so well'.I would not intentionally be rude to anybody that sais that to me but,if only they knew.Have to be grateful for small mercies,I don't look ill.

  • Its a sad thing when actually want to look more sick.

    But I know what you mean. I once had a doctor tell me that;' No You don't have lupus, I have seen people with lupus and you are far too fit looking' ~And another telling me that I couldnt have APS as I would have all sorts of problems. Er, doctor why do you think i am sitting in front of you?

    So good luck with it..

  • Ok.if we have had our bloods taken and proven to be Lupus positive,never mind the skin biopsy,what do we have to do?I am alway's being told how well I look and how fit I look for someone of my age.even a Doctor friend said to me 'you look to well to be ill'.Cancer,Lupus what more do they want,these people who assess us,the professional's who do not have Lupus should be helping us .Now the other problem's that come with the Lupus.Will somebody please realise we have a desease,one that we do not want.Sorry but,I have just been given more bad new's medically so,I am not very positive at the moment,just becoming very good at moaning.Stay well all.

  • hugs to all ,,,Lupus is real!!!! we are at Facebook!!!

  • When I recently went back to work, everyone was saying, wow, you look well, I just replied, its the lupus rash on my face and walked off, sick and fed up with people saying how well I look. WELL I DONT BLOODY FEEL IT!!!!

  • hi yols let other fight for you when you can your amazing blessings

  • I too work for the NHS and who you would have thought would be more understanding towards those of us who have long standing illness, but oh, no! The NHS absence scoring is called the Bradford Score and EXTREMELY unfair for people like us who have Lupus and are likely to have odd days off sick here and there. Myself i try to go in even when feeling rough, you force yourself to. 1 abscence of 10 days = 100 points but 10 abcenses of 1 day which us Lupees are more likely to have = 1000 points!!! When the total abscence points allowed is in the very low 100's we stand no chance and are in huge trouble at HR. I may look well apart from burning & itching, very sore skin on my body, not face ( def water also meds allergy?????) but i feel so so tired most of the time. I felt better when i was being kept alive by dialysis machines (thank you Lupus!) than i do now i have have a fantastically fully functioning kidney transplant ( thank you friend!!). Immune supressants knock me low so that if a virus or infection gets me then it does its worse. I have no understanding of my Lupus and and why if its negative (?) and i'm on immune supressants does the Lupus still attack my eyes (scleritis) at times. Stress is a no goer with this disease and with myself getting a chronic infection in my transplant and being very poorly in hospital, same day my dog dies, same day my Dad went into hospital and died, my body has decided its had enough and is going to play exhausted on me for awhile! Lupus is great, if that is what is making me so run down at the mo? Mostly i forget i have Lupus, i just have a kidney transplant and recurrent scleritis and horrendous skin. Oh and if you hadn't noticed i get by with a VERY dry sense of humour lol!!

  • I too am a fellow loopy and have been off work for some time now. HR people are not your most understanding of folk but hey, if my own GP is out of his depth with lupus who can I expect to understand! Anyone out there know of a doc with lupus?

  • i have the bradford score care home. im grateful i work 16 hours now. Still get very tired when im at home. think i should get more benifits just changed hours working 12 hour shifts rediculous.

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