I have CFS and have been off work for a while. How do you know when is right time to go back?

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I have Cfs and have been of work since April, compared to how I was months ago not being able to get out of bed I am doing better. I have also had gastro problems but at moment no pain. I am a teacher and do really miss teaching, I am considering going back after Christmas on a gradual return but have slight worry could burn and crash again. I have had physio and occupational health and finished now really it's a case of manage it and pace myself. Have got referral for Cfs programme at hospital but it's a four month waiting list and to be honest I need to get structure back in my life. I am asking when or if is right time to go back and what are peoples experiences?

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  • Posted

    Hi Katoreo.  I'm not a medically qualified person but I understand that there is a link between CFS and Vitamin B12 deficiency and this could be exascerbated by your "gastro problems". I suggest you ask your doctor to test your serum B12 and Folate levels if for nothing else but to rule them out as a possible cause,

    I wish you well

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  • Posted

    If the hospital CFS programme is CBT and GET I wouldn't do them if I were you because many patients with ME say they exasperate their conditions. People have been trying to tell the medical profession this but they're not listening.

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  • Posted

    First of all, know that you are very fortunate to be at a point where you can even contemplate going back to work. I have to think long and hard before even walking across the room...You're right to be concerned about a crash. This is very common. We push beyond our capabilities and crash. Dr. Lucinda Bateman, an ME/CFS specialist in the U.S., believes that the more you operate outside of your energy envelope, the less chance you may have of a recovery. She recommends getting a device like a Fitbit to help you get a handle on your optimal activity level. I would be extremely cautious about going back to work. For instance, if you go for weeks without crashing, and are back to a normal level of activity, you might consider it. But above all, you don't want to crash and endanger your health. I pushed myself and went on a vacation 3 years ago. The result was new, pretty awful symptoms that still haven't gone away.

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    • Posted

      I had a look at Dr Bateman's website and downloaded a document about treatment. It says that her plan is best implimented after other conditions have been excluded, but one of the ones she mentions is autoimmune disease. ME is an autoimmune disease with inflammation of the brain and spinal cord.

      Sorry to hear that a holiday set you back so much! 

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  • Posted

    Which country are you in and what age group do you teach? I ask as a teacher myself in the UK, just to see if my experiences could help you.

    Mazpaz

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    • Posted

      I am a primary teacher but have just lost my job after suffering a bad relapse last year. sad

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    • Posted

      Oh that's awful and so unfair! This disease steals so much from us doesn't it but it can't take away our spirits, our fight and positivity. razz

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    • Posted

      Yes but it's other people that cause the issues. I could still be teaching but my new head decided I was to go despite my hard work to keep up and being graded outstanding. I was told it wasn't personal, not my teaching, just the situation. I have no clue what to do now. If I had the Head I had before... I would still be working. So in response to katoreo I'd say if you have the support go for it. But put yourself first because when you are gone they don't give a toss. Your place is filled and you become a shadow that fades quickly. Your health is more important and I am glad I am not doing the 70 hr week with weekends fIlled with work and the stress of keeping up. I'm just sad that is what I was driven to instead of being supported. I loved the children and doing what I could for them but it's not enough.

      Good luck!

      Mazpaz

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  • Posted

    Very happy to hear you're contemplating work. I'm a teacher myself and was only diagnosed 2 weeks ago after feeling unwell for several months. I'm still learning a lot about the condition but my occupational health therapist has said I should try to still work but only teach 1 class a week and build up up to more very slowly and only when I can teach without any symptoms coming on (at the moment max 5 hours a week). I'm starting this plan on Monday so I can let you know how it goes.

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  • Posted

    Hi, I was in this position in April 2014 and went back on a phased return. It was the worse thing I could have done as I made myself far worse. I was a police officer but they put me in an office on greatly reduced hours. I ended up going off sick again after 5 months and eventually got ill health retirement. I would think very carefully about going back, also because there are no visible symptoms people presume you are better than you are and don't make allowances. Good luck x

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  • Posted

    I was off work for 6 months, my doctor didn't want to sign me back to work but I was desperate to get out of the house and have a purpose to get up in the morning. I started a phased return to work that started with 2 hours a day Mon/Wed with 2 hours at home on a Fri. I stuck at this for a couple of weeks then gradually increased by half an hour each week. Some weeks I paused and didn't increase if I didn't feel able to. It took me over a year before I managed to get up to full time hours but I've not managed to sustain them. I now work just short of full time hours and half day on a Friday. I'm really fortunate that my boss and colleagues have really supported me through this, without them I wouldn't have managed to get back to the hours I have.

    I'm stubborn and feel like I'm failing myself and my colleagues if I have to reduce my hours etc, but I'm learning to listen to my body and make adjustments when needed.

    Good luck!

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    • Posted

      That is amazing its nice to hear about people that have been able to get back to work. Yes like you i am desperate to go back to work and not be stuck in the house. I am seeing the rehabilitation lady tomorrow hoping to come up with a plan for a phased return to work. I feel i a, much better at managing my symptoms but still having stomach problems but i am determined to make this work.
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    • Posted

      Good luck! I didn't think it would take me so long to complete my phased return to work but I'm really glad I took my time. Keep positive and keep listening to your body smile

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