I don't know what to do, I feel so down :(

I was feeling so much better a couple of months ago and my rheumatologist said I could reduce meds! I was so happy and feeling great apart from being a bit tired. I thought right, time to move on then! So I went and applied for a job, and I got it! I was over the moon and couldn't wait to get started. Then ended up back in hospital on 12th jan with pericarditis / serositis, which is how my lupus affects me. So they quickly upped my meds and put me back on the ones I had stopped and the pain got better, but the trouble is since then the tiredness has been unbareable! I truly am exhausted. I sleep well at night so that's not a problem, I even sleep well in the day, because I have to, and trust me I try not to. Yesterday I felt like I was dying I was that tired, I felt I had done 5 night shifts in a row when in reality I have hardly done anything for the past 2 weeks, not even housework really, just cooking and washing up.

I keep telling myself, go for the job, this won't last forever. But then I think yes but will it last forever? And I am meant to be starting on Wednesday, am I going to be feeling better by then, because if not I don't think I can do it :(

Was I being too optimistic to think I could hold down a job? Its only 16 hours a week but even that seems a massive task right now.

(I wrote this the other day, thought it had been deleted! so i'll post it now. Must not have pressed the submit button ooops)

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24 Replies

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  • Dear Zebedee, I am so sorry that you are feeling so down and hope you will soon feel more like yourself again.

    The job is 16 hours per week, how is this split? If it's say 4 hours at a stretch then go for it, it will give you something to look forward to. If it's eight hours at a stretch it becomes more problematic, only you can say if you could work for that long. It is an effort when you feel unwell, sometimes to just get out of bed, but at least having to get up can sometimes be a good thing. Try it and see. Best of luck, hope you soon feel better. Kath.

  • It is 3 or 3.5 hours per day, so not a lot, but I feel terrible, like I can't even function properly at the moment. :(

  • I know the feeling of not being able to function properly. Don't berate yourself for feeling ill. How about ringing your prospective employer and gaining some time by explaining you are ill and can't start on the correct date. Remember, don't ask, don't get! Don't fret on it, if the worse was to happen you would lose the job that is not the end of the world, if you feel much sicker then it would not be worth it anyway. Remember, your health comes first. Here's a hug to try and make you feel a little better. Kath

  • All I can say is to see how you feel on the day. try not to stress about it because it will only exhaust you further. Your health has to come first, so if you can't do it, you just can't do it. I tried to continue working and went part-time after I became ill. I really struggled because my fatigue was so overwhelming and I could not sustain that level of activity without getting constant flares. in the end as much as I wanted to continue working I just couldn't.

    I hope you will manage it, but if you cant don't be too hard on your self.

    best wishes.

  • I agree with field above and just trust your instincts. The other thing is that when you are stable again could you apply for a job then. I think with this condition our health definitely has to come first. That's hard as our mind tells us 1. The money is needed, 2. It makes us feel good. 3. Helps us to socialise, 4. Gives us a purpose. However, it may just be that you need time to recover.....your body is trying to tell you that it is struggling hence why you are tired now. It may be that next year (after you know the condition better) and are on meds that are keeping it stable that you feel emotionally and physically ready to do a job. To me lupus can be a bit like a runaway train and if that happens we never know the damage that will be done. We have two choices....we can let this happen or we can take control. Best wishes too xx

  • Thank you, those four points are exactly why I applied for a job x

  • Dear zebedee

    I'm so sorry that you're unwell and right at this time, when you're due to start a new job. Lupus has a terrible sense of timing.

    You've already been offered great advice and I agree. If the hours are manageable ie 4 hours a day, then give it a try. I work part time, and find that it gives me a sense of purpose. It also takes my mind off my symptoms for a while. It helps me, which surprises me! Sometimes when I get home I need a nap but that's ok!

    Good luck in making your decision and I wish you well. X

  • Hi Zebedee,

    I am currently off work due to the terrible fatigue that Lupus causes, and I find that the more I stress over work the more tired I get. I have not been back to work this year yet but I remind myself that it is 7 years since I last had a flare like this where, I was off work for 3 months but got back to my job which is very stressful and demanding. The point that I am trying to make is that there is life between flares so my advice would be to get back on your feet before you start a new job because you will build credibility with your new employer before you are ill again. Hope you feel better soon x

  • Hi Zebedee, I feel exhausted everyday, even when Ive had 8 hours sleep. Even the washing is a task and am drained through doing it. Ive also got Fibromyalgia, Arthritis and Spinal nerve encroachment. The Consultant is still diagnosing me. I know what the kind of fatigue you mean, its awful and I hope one day it will go away... but I dont think it ever will as even the Meds Ive been given only just touches the pain Im in. I had to give up my career in mid September (broke my heart as I loved my job). I keep thinking it will all go away, Im finding the lack of my health is hard to except and am really not facing it. Ive been signed off sick for 4 weeks at the moment but Im still trying to find a part time job (harder than I thought it would be) Ive also had to face changing career paths as no way I can do what I was doing. Its been really hard. Lupus affects everyone in different ways, many can go back to work and dont have it so bad. Ive been judged by others who have Lupus... its like they think if they havent got the extreme fatigue then neither should I ... Every Lupus sufferer is different and have different experiences. I was a normal healthy fit person a year ago, I worked hard and am a single parent ... now I dont recognise myself ... its demeaning when you struggle, especially when you're positive yet your health isnt playing ball. Go back to your doctor and tell them how you feel and how its affecting your life ... I do hope things are going to look up for you ... but dont push yourself as I found you pay for it later Xxx

  • Thank you xx sorry you had to give up your career :( I hate this, being forced to give things up! This time last year I was at college and looking forward to training as a midwife, it makes me so angry and upset, especially since I was only just getting over years of depression, anxiety and agoraphobia so it was a massive achievement for me to go to college :( I hoped I would be going back in September but that didn't happen either.

  • Thanks everyone for your replies xxx

    I still feel in a dilemma though, because I have got myself such a lovely little job I think, so if I was to give it up and felt better in a few weeks I might regret it. Part of me wishes I never applied, maybe I'm not ready.

    I have managed 3 days in a row now without sleeping in the day, but saying that sat and sun I got up later! And yesterday I felt quite good actually, I made a birthday cake for my niece and went round to her party in the evening, I was shattered by 7 o clock though!! Then today I feel totally exhausted again :( Oh its awful this.

    Now I'm going to get an hour sleep before I have to pick my son up!

  • I do feel your pain as the fatigue element is the pits and still gets me too. I have had to give up my career but I still live in hope that the next med I'm placed on take will make it all just disappear and that I will have more energy. I never know though whether this is just wishful thinking on my behalf. From living life at a much faster pace with both career and life before this change of lifestyle that I have now really does take some adjusting to. I know though if both my mind and body was in sync that I would be out there now working but the fact is that my mind can be good (on the days I don't have brain fog) but the body just will not play ball. I read somewhere once that lupus is like having your mind in 5th gear but your body in first (think it was that way round lol). To be honest is seems that you are still unsure and I can understand why. If you tried the job would it help? might determine whether you could or not. I guess the only thing would be then would be to really listen to what your body is telling you it can do. I would love to hear how you get on xx

  • Oh sweetheart i understand. I went on leave from my career due to my flare ,felt better for about a month and went bak.started to feel sick again and cut my hours to part time.i lasted one week.i resigned last Wednesday because even at 20 hours i couldn't pull it 39 and i can only do things for short periods of time ,,,,,the have to bed.i start Benlysta infusion study this week so ,mabye it'll get on everything, imuran,plaqunal, and steroids low dose as needed.i get it.

  • what is benlysta infusion hun? xx

  • Hi Callingjen27,

    If possible, would you be able to share your experiences of having Benlysta by completing our anonymous survey at please?

    Thank you.

  • I worked 20 hours a week and have struggled over the last two years to keep working,I have tried to keep going for all the reasons stated above.I am off sick at the moment and I doubt if I will go back,I could not cope with the level of activity expected and after work would end up in bed feeling ill.I really felt I had no quality of life.When I had hospital appointments or was off sick from work it was greeted with disapproval,no support at all,I would have needed to be in plaster from my neck to my toes,so my employer could see it! I would think carefully,if you take it on and it does not work out,well you've tried it ,on the other hand do you need the stress.Its a difficult decision ,I hope it works out for you!

  • Google it if you can.Benlysta infusions are done in the hospital.they are a 52 week treatment for Lupus.

  • Just wanted to send you my best wishes. I fully appreciate where you are coming from. I work part-time, but I can't even manage that due to fatigue, I was off last week and this week I have taken holidays just to rest up. Don't know what I am going to do next week, I just hope I get over this period.

  • I hope you do too xx It feels like it will never end doesn't it x

  • Hi zebedee01, I completely understand going through the same myself at the moment. Were you reducing steroids by any chance?

    I keep finding myself so tired I feel I could drop on the spot and sleep but it is interspersed with better days of activity

    All I can say is try when I first went back it was awful spent the hours working and the rest sleeping, I came up with all these coping strategies - but felt like I was walking around like a zombie most of the time - It did get better for me and it has been a struggle but the think I most enjoyed was getting my brain going and feeling like I could still achieve things even with the way lupus completely changed my life

    Can I ask what the wonderful job is because if it is physical I must admit I would not have gone back when I did and may never have gone back

  • Yes I was starting to reduce my steroids when I became ill again!

    The job is care support and activities co-ordinator (for the elderly) so yes it will be quite physical :(

    I am due to start at 3pm today!

  • Good luck!

  • I understand. After my 10 days in the hospital last year I feel horrible. I am in healthcare and am on my feet 9-10 hours M-F. No lunch break. I have to work but it is a struggle. I push through and collapse at end of day and same on weekends. My wonderful husband is cooking ,etc. Could you work your job so that it wouldn't be days in a row? I all always thought if I could take Wednesday off it would really help.

  • aww that sounds really difficult for you :(

    I didn't start my new job in the end, I am still really upset about it now! And we are really struggling financially too.

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