Working, career and illness. Need some advice please!

Brain and nerves
1

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

2

*that should say "family" not "famstress!!!!!

Although, I'm liking that term which I could adopt for when my family is causing me stress! ;-)

3

I feel for you. I was in the same position when I first got M.E. never dreaming it could return. I was working for a company who had a six month sick policy. The next move was redundancy. My working days were. driven to work duck and weave through the day. Picked up. home eat go to bed. Weekend stay in bed until Monday off we go again. Now retired I don,t have the work stress but M.E. is just as bad. I have never come to the conclussion as to being under pressure to carry on is better than sitting  here waiting to see will happen. Stress doesn't help, if I get stress I swet.

Wish I could give you some advice, the only thing I can say is it did go. I am 79 in July so not sure if I will get through it this time.

Good Luck but don.t expect others to understand because I expect you look well

 

4

Hi, I'm new to this illness too. Still waiting for diagnosis but I know it's ME.

When you stop getting sick pay you can claim ESA. Also, apply for PIP. Even if you're working you can claim.

It's hard for family members to understand. I read a simple book for beginners: 101 things you need to know about ME. It might help your husband to read it. Good luck x

5

I think we are in a somewhat similar situation....I am 27 years in the same company, running several businesses. Finally arranged to go half time in July....I prefer to work...and, living alone, need the social contact from colleagues. But part of me thinks I should just take a complete break....am intending to give the part-time thing six months and then review, if my body lets me. If no improvement then I'll probably go the career break route..with great reluctance.

Really tricky call...especially as how we feel is changing all the time.

6

Hi Elmo,

Sorry you are having to deal with all this, with perhaps less family support than you need. It's so hard for other people to really understand, isn't it, unless they have experienced it themselves.

I'm fairly newly diagnosed, still working, though struggling. I work in education, so have regular weeks/fortnights off which let me recover from the term. Even so, I have had to reduce my days from five to four, with a day off mid-week. Is there any chance of you reducing your hours? Perhaps temporarily to see if you improve?

Your letter is full of worry and stress and guilt - for your patients and your family. I know to my cost that these things all drain your energies fast and deep, worse than a marathon run! While saying "stop being stressed" would be pointless and crass, have you sought any strategies to help you deal with these things? There comes a point when you have to be a little bit selfish to look after your own health, so you can look after others.

One thing which did help me cope with anxiety and work related stress was a mindfulness course which my GP referred me to. It was a local group which was very supportive, and there were people there who also had CFS/ME, as well as anxiety. It's not for everyone, I know, but some form of meditation, yoga, tai chi, massage, relaxation classes - worth trying?Just to find a way of standing back from our situation can be helpful and restorative. As you are getting support from your manager and local CFS/ME team, they may have more suggestions; and CBT might well help too.  

I hope you find a way through this.

Let us all know how the Occy Health meeting goes.

Jean

7

Hi Elmo,

I think the hardest part seems to be getting the support we need from family, friends and co workers/management. This is from what i see on the forum as well as supporting a friend with this condition. The more support, the better we can feelabout/cope with how it affects us.

Read all you can on the condition, see how many people on here are saying how important rest is. it is good that you have been referred to the nearest cfs/me service, the CBT can be useful and be as gentle as you can on yourself. I cannot work and I loved my job and I have felt a real pull from not being able to do it. I have however, managed to complete a 13 week course in teaching and training (it exhausted me!) which I am proud of. I also managed a level 2 first aid. It was hard and I got payback in a big way but, I felt that this will help me in the future when I'm better. I truly believe hope is the bedrock of this condition.

I appreciate money is always a concern for people but, health is too. Can you take a career break and go back to nursing? What kinds of things do you enjoy doing? is part time an option?

Your husbands fears are about finance but also about you becoming depressed again? could you explore this with him? if you carry on working and feeling ill it could do the same at the end of the day. Or you could do either and not become depressed. No one has a crystal ball to predict, only you know how you feel. I was angry recently when someone raised the depresssion card with me in a heated exchange when I felt I was being ignored and asked outright if the felt I was depressed would that mean that they wouldnt be able to be ok with me? After cooling down they said it was an off the cuff remark and said they didn't think this. We can be down, upset, hurt, scared, angry, joyful, happy, playful etc with this condition-just like he rest of the population! 

Sit with yourself and think about you for a moment. About how ill you feel, about how much energy you have and what you hope for for your future. Put yourself in the ventre of the picture (I know how hard that can be when you work in one of the caring professions) Maybe extening the sick leave until therapy begins is the thing to do, only you can have a gut feeling on this.

Hope this helps

Best wishes

Beverley

8

Hi, it is an extremely difficult position to be in. I was working full time in my late 20s when I got glandular fever,never felt better and doctor told me 'you've got M.E., go and buy a book about it, I don't have time to discuss it with you'. There was no help at all then (21 years ago). I was off work for a year, on half pay for half the year. At the end of year I had choice of going back to work or losing my job. I was so worried about losing my job I stupidly tried to go back to work part time even though I knew I wasn't well enough. I did this for a few years, in a few weeks, relapse, off for months, back again, off again until one day it was like my body packed in and I got paid off on ill health grounds. I spent this whole period of my life in a state on constant stress, constantly worrying if I would be well enough to go into work and when off sick worrying about getting doctors lines, phoning in sick,etc. After I lost my job I felt really depressed. I was lucky enough to get CBT through a trial they were doing at hospital and it made me realise how stupid I'd been pushing myself all these years. The therapist I saw said by pushing myself like this I had made my condition worse. The CBT really helped me come to terms with my illness and how to think about things more clearly. I'm not working now and don't have a lot of money but can get by and am actually happier than I was when I was working as I'm not under pressure to be well enough to do things. Everyone is different and some people with M.E./CFS can do more than others. I would advise you to extend your sick leave if possible and have your CBT before trying to go back to work as it might help you think about things more clearly. If you are off sick try and rest as much as possible and eat as healthily as possible. Would also suggest you could maybe try relaxation CDs for stress as this can really drain your energy too. I use them all the time now if I'm feeling stressed and find they clear help my mind switch off.

Good luck with your meeting.

 

9

Sorry - last sentence meant to say 'find they help my mind switch off'. Think I should go and do one now!!

10

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

 

11

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.

12

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.

13

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  

14

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

15

Thank you Retriever.

Sounds like my life - I work (part time) and on time off I rest to recover and re-energise to work again.

Definitely not really the "living" life I expected.

Colleagues definitely don't seem to realise how awful this illness is, as I do look well on the outside.

Hope you get on ok too! :-)

16

Thank you.

I'm at my "give it x time" endpoint now but it is so difficult letting go of a career I have loved!

As you say, the symptoms and our feelings seem to change all the time. One moment it all seems so obviously clear what I need to do and the next I'm in a panic about if it is really what I should do. I suppose that is just how life is - you can never have certainty in your decisions!

I generally have a "what will be, will be" attitude to life - not sure if everyone with a chronic illness diagnosed begins to doubt themselves, as that is what I seem to be doing! Crazy really, as the fact I have got this "diagnosis" is due to having reached an acceptance that "I" know best about my own body and health.

Such conundrums!

Hope all works out for you too! ;-)

17

Thanks...and good luck!

18

Thanks so much Jean.

My therapist recommended a Mindfulness book which has a "meditation" CD and I have started reading it and done the first meditation. Finding it helpful.

Well done to you for managing to keep up work at present! I already do part time - work four half days per week with a day off. I will see how the Occ H goes.

Look after yourself. :-)

19

Thanks so much Beverley!

Your advice very much reflects my own thoughts - are you psychic??

I do just need to remember to keep believing in myself and that I am the only one who truly knows what is best for me!

I am so used to looking after others and know I need to be kinder and more caring now to myself.

Very best wishes to you. :-)

20

Thank you so much Elaine for sharing your experience which sounds so much like how my life currently is with work!

I am fairly sure that I will feel a lot of relief and be able to cope much better with managing my symptoms if I stop working. Maybe it won't have to be forever? Although I think I know I won't ever return to nursing if I leave.

As you say, at least if I have some time out it is something I need to address through CBT. I had some CBT yrs ago when I had severe depression which was very helpful so I'm sure this will help now.

I have started reading a mindfulness book which includes a meditation CD and that is helping.

Very best wishes to you. :-)