Cfs and full time work: Hi. I am feeling a bit lost... - EDMESH

EDMESH
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Cfs and full time work

Suzlj
Suzlj

Hi. I am feeling a bit lost. Last month my gp casually told me most likely i have cfs. I have been really struggling with fatigue, chronic pain and cold upon flu upon infection. I currently work full time in a mentally demanding job (nhs) . I am so confused as to what to do. The gp told me to rest but also to not rest as much. I'm finding i can only just manage work but when home i might as well be unconscious! I get too tired to even think about food and shopping never mind cooking and finding basically everything hard. I used to be a very fit and active person but now struggle to train once a week. I know this is on the extremely mild side for most who have/are under assessment for this condition but i am not sure i can keep this going indefinitely! Where can i get some advice? My work are trying to be supportive but occupational health just told me to cut my hours or geta new job. Neither are financially viable and this has increased my stress levels 10 fold. Apologies for the long post.

15 Replies
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Bless you. I really don’t know where to go myself for help. Nobody seems to have the answer. I’m so sorry I can’t help you, I do wish I could.

I work in NHS and struggle similar to you. Could a short term reduction in hours help you get over the initial flare up? Then build up gradually. Or just cut an hour or so a day. I would encourage some work life balance or the stress and fatigue could over whelm you.

Good luck with whatever you decide.

I to had a awfull year last year and also work in nhs and I started a fase return to work after a few months off and reducing my hours has helped me get my life back by working less I can schedule and pace everything around Work now so I don’t over do it I still get bad days but they no longer worry me as my days are few and no we’re near as bad as they use to be hope this helps xx keep your chin up

I also work for the NHS and have just been diagnosed properly by the Hospital with CFS. Thank goodness I only work part time. You need to go back to your gp and ask for a referral to the hospital for a diagnosis. The hospital have told me that I will have 10 1xweekly sessions with therapists and then I will be seen less reg there after. I have not started this yet (only just been diagnosed) but it sounds like im going to get more help that you are being offered by your gp! I have informed work and they are going to give me more breaks if I need them, at the moment I am managing and just collapse when I get home! I'm sure Occi health should be offering this to you at the very least! good luck

Thank you all. The tricky thing is employee relations said i can't cut my hours temporarily or phase them

as i haven't been off. Last year i had to have surgery and was off for 2 months and i know that completely stopping work again would actually increase my stress. I have a mortgage etc and would struggle financially (even though i have a decent salary) and live alone so don't really have any help (although friends are trying). Has anyone been able to use statutory sick pay to help in the short term? Also can i ask what hospital were you referred to? In terms of therapy i am actually a therapist myself so it can be tricky to find a therapist i don't know socially (turns out Scotland can be a tiny place!)

ChristianCT
ChristianCT
in reply to Suzlj

Each person is different so a suggestion would be to have someone to look at you in a holistic manner : Anxiety+fatigue+diet+ sleep+exercise all need to be seen in relation to one another, unless there are other issues (in which case blood and other tests would need to be done).

For some vitamin aids, 1 tablet Ubiquinol (enhanced q10) taken with food preferably with your first meal of the day, and Siberian or Korean Ginseng late afternoon (taken without food) are found to help recovery.

B complex may also be of help.

If you are having sleep problems, melatonin tablets can be a substitute for medicines. You need to sleep well to help recovery.

Once you start to recover (it is a very slow process so be patient), start adding a very mild exercise regime, even simple exercises at home, or some walking at a leisurely pace to start off with.

Don't get into a rush to get back to your "old self" too fast as it takes time.

It is catch 22 and it is not that easy to just cut or hours or get a new job if only it was that simple you need some other form of support in my opinion I work full time and like yourself after my shift I just collapse nothing else left to give my main concern is my legs they feel heavy and achey and I just want to lie down permently .

Hi!

I’m in the same boat as you (although my job isn’t within the NHS). I suffered with CFS severely in my teens after a bout of viruses following glandular fever and I managed to work myself out of it and although it never fully left me, I’ve been living a fairly normal life for about 15 years. I started to notice things were slipping when I went through a very stressful period of time a couple of years ago and it has gradually come to the forefront again making every day a struggle. This time, the doctor was first trying to rule out something called Cushings disease (which they have now done). Yesterday I was given my second diagnosis of CFS and have started the referral process to be placed back under a consultant.

I, like you, work full time and when the doctor suggested time off, reduced hours and altered working location, that paired with having to tell my employer, left me an emotional wreck! The worry of this and the long road ahead (that I have already climbed once) really hit me. I have to start somewhere though and what I have decided is that I will accept either some time off sick (a short period of no more than 2 weeks) or the reduced working hours for a short period, just enough to take the pressure off. My mum (who helped me navigate this last time) really helped me think clearly about why that is important. She said.... when you are at your lowest point and you have all this stress on you, how are you meant to breath enough to begin what you need to do? A week off or a short stint at reduced hours may give me enough breathing space to focus and get myself in to a good routine. I’m unsure which option to take currently and I am going to speak to my employer based Occupational Health to find out how each step will work financially. If it cannot work financially, I am going to take some time as holiday and utilise it to focus on CFS.

Perhaps go back to your GP and tell them work is being difficult and you aren’t sure what to do? Like patzi55 says, it’s also really important you are referred to a specialist for support. If all else fails, if you were to go sick with it, how long would you need to be off to qualify for phased return to work hours?

I really sympathise with you and your circumstances and I hope you are able to negotiate some breathing space to be able to begin getting yourself back on top of things and back to good health.

I’d be interested to know what methods people are trying too.

Sorry for the long post!

You are not alone. I was diagnosed with cfs a couple of years ago, and I too work in a demanding job (higher education). I ended up taking a year off, then returning on reduced hours. I now work 4 days a week, which works for me.

I think the crucial things I've leaned are:

1. Find out what you're entitled to. Talk to occupational health, and get the info supplied by the M.E. Association. They publish a purple book which is very helpful. ME is a disability, and employers have to make concessions by law.

2. Stop feeling guilty. This is very hard, but necessary. Cut out everything you don't NEED to do. Stop working out for a while, only do absolutely necessary housework, cook ready meals. Lying on the sofa isn't being lazy: it's vital self care.

3. Understand that this is only your life for now. You will stabilise and begin to learn your limits. I do lead a much more sedentary life than I did before (and a whole lot more sleeping), but I can also do far more than I ever thought I would because I've learned how to regulate the energy supply I have.

If you rest now, it will benefit you in the long term, honestly. Good luck, and get all the help you can. x

Hidden
Hidden

Hi ,if you call your DR's surgery ask them if there's pain management classes in your area or ask your Dr to be referred to pain clinic,it sounds like your really struggling and Dr just didn't pickup on how much maybe try a different Dr?you can't go on the way you have been that's for sure.please let us know how you get on if you go back to doctor s.?.

Hi. So the doctor gave me a formal diagnosis of cfs (on the same day i was also informed my arthritis has progressed and i will need major joint replacement in the future). He is referring me to the cfs clinic and the pain team. I'm hoping one of these services can help steer me into the right direction and help me try to get occ health input. When i saw them a few months ago the occ health doctor told me to cut my hours or get a new job. Which wasn't nice to hear and didn't feel like support at all. Thank you for all your messages.

Hello,

I am similar to many here, but I hope my experience can help. I had Glandular Fever when I was 7 very badly, and from that had CFS until I was 21, and it affected every area of my life. The reason this stopped at 21 was because I did the Lightning Process, which is a form of Cognitive Behavioural Therapy, and I have not looked back since then, I am actually more energetic now than most of my friends.

When I first heard about this process I was incredibly skeptical, and waited a while before going ahead with it, but it is the best thing I ever did for my health and I would recommend this to anyone with CFS. I also was diagnosed with CBS a few years later after a bout of food poisoning, but after applying the same process on my own, this too is completely gone. At the time I did this process (which was 7 years ago now) I had to pay for it, but a year later I did hear that the NHS were trialing it to try and make it available for free, but I am not sure if this happened, and by the sounds of things here perhaps it did not. But even if you still have to pay for it, I would recommend it without hesitation - you should be able to find it with a quick search, and there should be people in your area who can deliver it.

I really hope this helps - let me know if you have any questions and I will help all I can.

Hi, how did you get on? I've just been diagnosed with CFS due to a really bad flare up but I have had it all my life so I know I will go through ups and downs. I've held down a demanding full-time job for 12years now but this flare has been bad so interested to know how you are doing a year later from your post. Xx

Hi Suzlj, reading your post reminded me so much of my own journey with , which began in 2001 in almost exactly the same way as your illness. I could not sustain any work life balance as work took all my energy and left none for any sort of life outwith. After two years of struggle I was forced to give up work. I was 52 years old then with a mortgage etc. It was only after I had surrendered to the debilitating symptoms of ME and began accepting that I had a disability that I began to recover through pacing and diet, particularly eating less wheat products and taking lots of calcium. Like you I did still have the terrible stresses that lack of money brings and used all methods, of survival, including friends, family, citizens advice, a financial adviser and my workers union.

I did then manage back to work two days per week in 2004 and that went well until 2009 when I fell into the trap of taking on more hours. My job as Community Development Officer and Family Literacy tutor was very demanding and soon laid me low again. By 2012, I was forced to retire but by then I had a small pension and received my State Pension soon after. That came with huge relief.

I am now able to write and am self-published as the work brought on my having a publisher may be too much.

I sincerely hope my honesty does not weaken you further but if you do indeed have ME I sincerely believe that facing the reality is what helped me most. Whilst in denial I was merely hurting myself.

I do wish you all the very best Suzlj.

Alan

Hi, I work in the NHS as well. I was diagnosed 5 years ago. I have worked full time up until last month. I know how you feel. My department made me continue to do on call as well. Delightful employer! It's long getting on a conveyer belt on Monday, surviving the week and getting off Friday only to spend the weekend recovering. My advice is don't train. Just walk! Training is too much. I used to be a real gym bunny and massively in to yoga.

Think about your home circumstances. Is there something you can do to reduce hrs? I use a delivery company called allplants that make really healthy vegan food. It's scrumptious. I normally add a bit of veg and order meals for two as it works out cheaper. I don't have the energy to make food. I also have a little infra red sauna from Amazon which is great at this time of year when it's cold as my pain really flares up. I have a hot water dispensa that just gives 1 cup of water so I'm not having to lift a kettle. If you can afford it get a cleaner. No point exhausting yourself with cleaning as well.

I hope that helped a little. If you do get pre cooked food try and avoid supermarket stuff as it's full of salt and sugar.

Best wishes

Caroline

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