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Working, career and illness. Need some advice please!

Posted , 12 users are following.

Elmo69
Elmo69

Hi,

This forum is beginning to feel like "famstresss I am still finding my feet in coping with new diagnosis but my husband isn't really understanding the seriousness of my problems!

I am in a complete dilemma (ongoing for at least past couple of yrs) about my work/career. I know it contributes hugely to my stress which makes my symptoms so much worse and it is more than likely that work was a big trigger to developing my CFS/me.

All I ever wanted to do was become a nurse and I did so. Now been in nursing for almost 29yrs, more recently (past 10+ yrs) as a nurse in a GP surgery. Now my role is excessively demanding (nursing not alone in this, I totally agree!) and I find myself struggling to deal with "patients" as well as the politics and educational update requirements of the job day to day.

I know in my heart that I need to leave for my own health, not least being aware of my professional code that I have a responsibility to my patients care if I am not fully healthy myself!

I am struggling to find an alternative occupation and in itself, this causes me additional stress because I love being a nurse and can't imagine doing anything else! Anything else will require some form of adapting to, which I worry will still cause me stress. I also feel incredibly guilty and as if I am abandoning my nursing profession, plus all the patients; especially those with illnesses such as CFS/me and mental health disorders because there are little enough health professionals championing these conditions anyway!!!

My gut feeling is that I need a career break but then this creates anxiety within my family relationships, especially with my husband as he has several concerns:-

a) I will become depressed again if not working regularly and my "work ethic" will reduce!

b) It will affect our family income and, with our daughter due to start a four yr degree at uni from September, this has impact on our financial plans!

c) His own plans around him retiring in 2-3yrs (he has worked already 42yrs in same company and will be 60 in 2yrs)!

I am having an Occupational Health Assessment this week and am worried a little about this. My manager is fairly supportive and it is very helpful having advice and information from my local specialist CFS/me service. I am awaiting start of CBT but just don't know whether I should extend sick leave until therapy is in progress!

I am on the verge of going onto half-pay due to my sickness absence in the last year and this again, causes me increased stress!

If anyone has any suggestions or experience I would love to hear it.

Many thanks for reading through!

Elmo x

1 like, 37 replies

37 Replies

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  • elaine62759
    elaine62759 Elmo69

    Posted

    Another thought is what would you advise one of your patients to do in your situation? 

     

  • Retriever
    Retriever Elmo69

    Posted

    Elmo,

              One thing my wife and I decided we would talk honestly. Mind you being married 56 years I don't think I could fool her. The last couple of days I have started to feel a little better. Now I have got to only do what needs doing. I think the difference has been I am now sleeping properly, swet most nights, but I learned not to let it worry me.

  • jackie00198
    jackie00198 Elmo69

    Posted

    Whoa! That's a lot of stuff on your plate. I think you really know the answer to all this, as you mention it in your post: you need a break. Nothing matters more than your health--nothing. And not only is your career too much, but all the worries you mention in your post are only adding to your stress. You don't want to become even more ill, and continuing to work at your job, and getting mired in other concerns, only can add to the stress load. As you well know, stress is extremely bad for those with ME/CFS. I found meditation extremely useful to quiet all the noise and worries in my head. I took a free, secular 6-week course online (Google Palouse mindfulness). The course is sponsored for the University of Massachusettes Medical Center. Again, it's totally secular. Whenyou quiet your mind down from all your worries, you can start to think clearly.
    • Elmo69
      Elmo69 jackie00198

      Posted

      Thank you so much Jackie!

      Think you must be psychic too, like Beverley who commented earlier! Your response mirrors my own thoughts!

      I am finding starting reading a Mindfulness book with attached CD with meditation programme helpful.

      Very best wishes to you! :-)

  • wknight
    wknight Elmo69

    Posted

    At least you have people around you even if they don't understand. I am completely on my own so if I didn't work, cook something to eat, no one would. I kept going, on and on, trying to cope and it never worked. In the end I took the plunge and gave up my mega well paid job and took all the stress out of my life. I seriously paced and now I am on the road to recovery. 

    Hate to be cruel but if your family member is going to university, they are 18, let them support themself. yes I know its nice to help them, but they need to learn to stand on their own two feet. Will they appreciate you being ill while they are having a great time, probably not. 

    Look at your expenditure, you might be surprised where you can make savings. We spend money on an awful lot of stuff we don't really need. The world went on along just nicely with no mobile phones, satellite tv, eating out, owning two cars, going on foreign holidays you get my drift

    Best of luck and at least you are in a profession where your employer helps you, many of us are not and get the bare minimum if any help at all  

    • Elmo69
      Elmo69 wknight

      Posted

      Thank you so much wknight! So reassuring to hear you are improving since making the decision to quit work!

      You are so right about my daughter going to uni! That's my thought too and I'm not sure why my hubby thinks it will make much difference to our finances on her behalf if I stop working. Also, I'm sure I will be much happier and stress-free if I stop working. I'll be able to do some volunteer work probably (symptoms allowing) so I know I won't fall into depression again.

      Just need to take things day by day - I will discuss it all with hubby after I've had more advice from my therapist and got the Occ Health assessment done.

      Good luck with your continuing improvement. Best wishes to you. :-)

  • Elmo69
    Elmo69

    Posted

    Thank you all so much for your advice! It is really helpful to have views of people who have the illness themselves and can understand.

    I work only part time already and Jackie really nailed it for me, pointing out I do already know the answer!

    I am due to return to work this week. I will have a back-to-work interview with my manager and think I'll tell him I need to have the Occ Health Assessment first before decision.

    I also intend to contact the specialist service for further support- especially from the therapist with whom I am awaiting CBT, also want to find out when my CBT is likely to start.

    Again, many thanks to you all! You make me realise that none of us are alone with this awful illness! My very best wishes to all of you! X

  • Harriet72
    Harriet72 Elmo69

    Posted

    Hello, I have just read your thread and I could have been reading about myself and my present dilemma .... I too am a nurse and adore my job, I have CFS and Fibromyligia following breast cancer in 2011 and bilateral mastectomy and lymph clearance then reconstruction surgery a thirteen hour operation after six months of chemo three weeks of daily radiotherapy and a year on monthly IV herceptin. I love nursing but when I come home from work I need to go to bed it's awful I feel like someone has swamped and covered me with an exhaustion blanket I am up with irritable bladder minimum of twice maximum of six times nightly wake up go to work and do it all again. My bones hurt so bad I cry, I get muscle spasm/cramp and have difficulty concentrating which is dangerous in my job. I became so burnt out that I ended up in my managers office in tears telling her I was going home as I needed to see my doctor I found it hard to make decisions. I cannot even perform CPR which is part of my job description due to my breast surgery and chronic bone pain, I have my managers support in going even more part time or medically retiring, if I walk too far I loose my balance and am short of breath. I am now on long term sick, my GP had advised me to apply for ill health early retirment and has said he will support me 110% he admires me for continuing to work as long as I have. I am 56 and I love my job but even when I cut down my hours at work nothing changed my days off were spent in bed I had no work life balance. My husband is great very supportive but I feel sooo guilty at giving up the job I love plus my husband is in poor health. It's been a very difficult decision to come too but it's a case of needs must for my health we will just have to cut down on things health is more important although the money will be tight. At this stage I don't no if I will be successful in being awarded medical retirment but I have decided to try for it. It's an awful debilitating illness I have found since being off work on sick leave that I can pace myself and enjoy doing the little things like reading, cooking, taking my dogs for a walk instead of sleeping, some days are good others bearable others terrible. I wish you well and whatever decision you come too make it about YOU...everything else and everyone else will be fine life is too short and none of us knows what's around the corner, I am to have a top to toe bone scan and CT scan of thoracic, abdomen and pelvis in two weeks time yo check for me tastiest if all is clear then it's defiantly Fibromyligia and CFS that is making me feel this way fingers crossed. I hope my story has helped you as yours has helped me in knowing I am not alone Harriet X 
    • Harriet72
      Harriet72

      Posted

      Sorry last bit should read to check for metastasis X 
    • Beverley_01
      Beverley_01 Harriet72

      Posted

      Hi harriet

      Reading your post made methink of another member on here who also had cancer, recovered and then got cfs fibro symptoms. There is a condition that mimics these symptoms caused by a reaction to the chemo/drugs used called Complex systematic syndrome. Their rheumatologist stated this? Similar to cfs/me symptoms wise but can be helped by raising serotonin levels. Maybe research this for yourself. It not be this, cfs/me fibro, is often as a result of a trauma such as surgery.

      Hope that helps

      Best wishes

      Beverley

    • Harriet72
      Harriet72 Beverley_01

      Posted

      Thanks Beverley my GP has already looked into this and is certain my diagnosis is chronic fatigue Syndrone and Fibromyligia he feels it is a reaction to all I have been through especially the 13 hour operation for both breasts reconstruction, thanks tho Hariet
    • Elmo69
      Elmo69 Harriet72

      Posted

      Thank you so much for sharing your story! Gosh, you have been through so much!

      I have been back to work for two half days this week and feel so drained and have aching neck/shoulders/legs and my brain feels so fuzzy! Have a day off now and another half day to work on Friday but also have my OH Assessment on Friday morning. It seems crazy how draining the job is! However, because my nursing colleagues haven't been so understanding my appointments lists have been busier than they should be. It seems they are waiting for my OH Assessment first rather than trusting I know best what I can actually do! I feel really disappointed that my nurse colleagues are not helping - the very people who surely ought understand best!!!

      But I'm determined not to let their attitude affect me, I know how much I have given to the profession and especially my current role and know it is time to look after myself! The past couple of days have made me realise that I AM an excellent nurse and I CAN do my job, I just need to amend slightly! I intend to adhere to our Nursing Code and patient care and safety is paramount so I feel protected knowing that is my safety net! (If that makes sense)?

      It is very helpful knowing that I am not alone in my dilemma!

      I hope all goes well with your scans, let us know how you get on!

      Very best wishes to you!

  • sandy53965
    sandy53965 Elmo69

    Posted

    Hi Elmo,  my husband is also 58, and he has had severe ME/CFS for almost 30 years.  His was so bad that he became completely and totally bedridden for two decades.  It was impossible for him to work at all because he couldn't even get out of bed without falling down onto the floor due to severe weakness and inability to function.  Are you working full time?  If so, what about just working part time?  I wanted to be a nurse as well, but I knew that with my herniated discs, I would never be able to be on my feet for the full day - too painful.  But I am a certified caregiver since my husband cannot take care of himself, and I've also been a caregiver for other people.  You could consider something like that where you only have to go out on certain days, and could sit down & rest on the job whenever you can.  That way, you won't have to use quite as much energy, and you'll still be helping people.  You could also work as a nanny for a newborn.  (That's what I'm doing now) along with taking care of my husband.  I work 2-3 days a week, and can sit down and rest while the baby is sleeping, and don't have to wear myself out too much.  Now toddlers, that's a different story.  I wouldn't want to take care of them because it requires way too much energy and is so stressful.  One of the main reasons my poor husband became so ill and unable to do anything is because he kept pushing himself over & over & over again to work, and to exercise despite the horrible weakness he was experiencing and the severe pain.  Back then, they told anyone with this illness (which they didn't believe was real) to just fight it, fight fight fight.  And so that's what he did, and that is why he ended up completely bedriddn, and is still so sick today.  So yes, you need to get your hours reduced, and perhaps do something less demanding.  Also do what you can to put less stress on your system and mind.  I know that's not easy, but it needs to be done.  CBT MAY help in certain ways to deal with stress, but the problem with CBT is that they try to get people with ME/CFS to believe that they aren't really sick, and that they just need to change their way of thinking.  But you ARE sick, and don't let them push you to exercise more than you can handle.  You need REST and Relaxation.  Try to explain to your husband what happens to you when you overdo it, how you feel, whether it's dizzy, weak, light headed, nausious, sweaty etc.  People with this illness, their nervous system is screwed up and the central nervous system does not work right, nor do the mitochondria work right.  The mitochondria are the "power packs" of the cell where the energy is created.  It does not work right in ME/CFS patients, and that's why they feel so exhausted and can't do as much as they used to.  Best of luck to you.  You can write to me anytime.
    • Elmo69
      Elmo69 sandy53965

      Posted

      Thank you for your supportive message, story and advice, Sandy. One of my greatest fears is that I am just making myself more I'll by battling on! That is certainly what my husband doesn't understand - he is convinced I can just "push through it" and will actually be worse off if I give in! As I am so tired and having difficulty articulating myself, I don't feel able to explain it all to him, although know I need to!

      My local CFS/ME service are excellent. They are fairly newly established (2014) and philosophy for care is very much based on the newer thinking about the illness.

      I really appreciate your support. Very best wishes.

  • Bunnyhugger
    Bunnyhugger Elmo69

    Posted

    If you continue to push yourself, you will make it less and less likely that you will recover.  How about working part time?  Or switching to a job that is more administrative and less on your feet/hands on?
    • Elmo69
      Elmo69 Bunnyhugger

      Posted

      OMG Bunnyhugger! That is so what I would love to be able to do - have more administrative role so I could use my skills and experience still but be less hands on!

      I am hoping that my OH Assessment will be helpful in this respect.

      I just feel so impatient sometimes but know I must learn to take things much more slowly and become calmer! I just wish I could get my husband to understand what I need to do! Without his full support I feel alone and am left struggling to work things out myself!

      Many thanks for your post. Best wishes to you.

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