Work, ? lupus and me

Flare up, beginning of week 5 (I started counting again this weekend).

Good morning all, I just need to have an early morning vent. Frustrated and tired and it's only 7 am.

My aim over the weekend was to go in to work today. My pain was reduced and my tiredness seemed to be less. So bags, clothing and everything I need for today was laid out last night ready for this morning.

My alarm went on at 6:30 and I opened my eyes to my dear friend pain. Knees, shoulders, wrist and fingers are all throbbing (I am typing using my thumbs). I feel like I haven't slept, I am exhausted and my eyes burn, they are so dry. This has been going on now for 4 weeks and a day. My sickness record I know is abysmal. Since 2015 my episodes of sickness has been increasing and the time off with each episode is getting longer.

I also feel so guilty about not being able to go in to work. My colleagues would have had to take on some of my responsibilities and the rest would be piling up waiting for my return. So I am on sick leave and anxious and stressed about work. This can't be helping and I am sure in some small way is adding to this flare up. I have been thinking about changing jobs to one that has less responsibilities and shorter hours, at the moment I work 4 days a week which is equivalent to 50 hours a week, full time is roughly around 70 hours a week. Work follows you home for the evenings and weekends and it is relentless. So with this in mind I think a change of occupation would be an excellent idea. All this plus home life and kids makes a good combination for a fine flare up.

I must admit that changing jobs at this time in my life is daunting. I have something wrong with me that I can't control and I have a family to support both physically, mentally and financially. What do I do? My husband thinks that I should push myself to go in, as distraction may alleviate some of my pain. But I am worried that if I drive in to work (it takes about 35 minutes) through traffic, work with a flare up which I know will only get worse as the day goes on (did this before and regretted it), I probably won't be able to drive home again. What's even worse is I would only be going in for one day, as I had booked my annual leave since last year to start from tomorrow for 2 weeks.

The problem with autoimmune conditions is that you rarely see any physical disabilities, so telling someone that you can't do something is hard for them to comprehend, as they can't see what's wrong. If I had a walking stick or required a wheelchair, I am sure convincing my loved ones that I was ill would be less difficult. Sometimes I even begin to believe (as my family do at times) that I am making it all up and this illness is really all in my head. I know this is stupid because I can feel the pain, but with people around me doubting my complaints sometimes I really do feel that I am being a hypochondriac at times.

I am then left with all these questions in my head, it's far too early. Am I making up these symptoms? Are they a figment of my imagination? Is the pain real? Is the tiredness real? I am getting low in mood and really need to get back on track. Work, ? Lupus (? as I am classified as undifferentiated at the moment) and me. Not a great combination. Getting the balance right is tricky. What do I do next?

Thanks for reading.

Nicole2000 ☹️

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4 Replies

  • When I was first diagnosed they knew much less about SLE and I went round the houses to get diagnosed and one consultant did try to suggest that I might be depressed as this would have been a nice easy option. But I wasn't and never have been fortunately. When I became more physically stable and more used to my level of symptoms I lost touch with the literature and was amazed when I recently came back to it that all the things I had been experiencing over that period were now known to be connected to lupus...All the GI stuff..The anaemia...everything really. It helped me shake off the feeling that I was some kind of fuss pot over focused on my health (after all how could one person be troubled by so many unrelated things....surely they had to have a low fuss threshold!!) . So give yourself a break. I think people who are hypochondriacs are far more rare than our society seems to want to fact I don't think I have ever really come across one. If it hurts it hurts. If you need sleep you need sleep. We all have great lives out there waiting for us...none of us chooses to let the hours slide by. Trust yourself. Hope you feel better soon. ☺

  • Hello Nicole2000,

    As a mental health professional, the experience of coming down with this disease (I have UCTD and Interstitial Lung Disease) has made me think a lot about how we diagnose depression and anxiety, and how we present this suggestion to patients.

    Periodically, one or another of my medics may suggest that depression and/or anxiety underlies some of my difficulties.

    Now, I do recognise that the physical and functional disabilities caused by this condition will tend to lower my mood.

    But I am absolutely clear that low mood and "worrying" is a normal and logical reaction to a condition that neither my doctors really understand nor can manage very well. 18 months in, we are all still puzzled at some of the symptoms and unable to manage some of them.

    It seems to me that in this context, and without positive clinical signs, to suggest "depression" or "anxiety" is not just unhelpful, but positively undermining.

    That's not to say that psychological therapy or even antidepressants is never helpful. The point is not to take one's eye off the ball. It's the auto-immune disease that is the real problem, not our strained psychological coping mechanisms.

    When I get the self doubts that you mention, I find it easy to refute them. I just force myself to do something challenging. Walk to the shops, for example. The physical consequences are so dramatic and undeniable that it immediately quashes any thought that it's all about my mental state! If only my GP would accompany me on one of these trips - that would be the last time he mentions "depression" as a cause of my symptoms!!

    Sorry for rambling. You have touched a nerve! I haven't much advice, I'm afraid, beyond this:

    - What sort of "part-time" job takes 50 hours a week??!! That is a heavy load for people in the best of health. There is definitely something wrong there!

    - Trust yourself and your intuition.


  • Whisper it and Driven,

    Thank you both for replying. I have been asking myself the same question about my 50 hour part time job for months now and really have been going with the flow and only in the last few weeks have come to realise there needs to be a change asap.

    I have found the psychological aspect of having a long term condition more challenging than the physical. Coping mechanisms need to be well developed and if not, you need to get some strategy in place from the onset, when diagnosed, The day to day battles can be consuming and you need to be an optimist in order to get through the day in unscathed. I have learnt that it's one day at a time, planning for the future for e.g. family outings, visiting friends etc can be hit or miss. So I have learnt to prepare my family way in advance that there is always the possibility that I wouldn't be able to come along.

    I also think the fatigue and general feeling of exhaustion does contribute to the low mood I get from time to time. But as you say doing something different can often lift that mood. In a moment my youngest daughter and are going to walk and browse through ASDA (5 mins walk from my home). Although a short outing it would make me feel 'normal' again. Make no mistake my low moods are in now way depression. I have been down that road before and can clearly make the distinction.

    My aim is to get control of this disease and not let it control me. With help from my rheumatologist I am hoping that with the right treatment, lifestyle changes and a positive attitude I can be the master of my life once again.

    Once again thank you for replying. Enjoy the rest of your day.


  • Oh, I really felt for you reading about your alarm going off and you feeling so tired and ill and still had to go to work, don't know how you do it, I feel the same every morning tired, worn out and fatigued even after a good sleep, luckily I don't have to work, so give yourself plenty of credit for managing too. Agree with others you really need to get another job, something easier on you with less hours because the stress of having to work can't be helping. I suppose these days with all the cut backs getting help with any form of benefits is a no go? Typical for people with genuine illnesses to get no help while others like my tenant who gets £400 a week plus her rent paid just because she has two small children. For some it doesn't pay to work.

    Agree, autoimmune conditions and the suffering that goes with them are secretive and hidden nobody knows how ill you are, so yes they start to think you're not - no cure for small minds huh, they need to educate themselves about lupus and all the different side effects, and more to the point the effect it has on your life.

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