Chronic fatigue - return to work

[Itsallchangehere]

Hi all,

Bit of background: in 2021 I was a fit 31 year old (very active, always out and doing things and away abroad when not working). In October I started to develop panic attacks weirdly but I’ve had them before so was fine carrying on. In December I got promoted to a very senior finance role (basically the deputy to the person in charge of the finance function) for a huge business. Was over the moon, life couldn’t have been going better. Not really relevant but we also bought a huge renovation house in Dec-21 which is currently being renovated. 2 days after Xmas I was so unwell through to 3 Jan. Thought it was Covid but was negative. January I ran everyday and did Pilates/strength training too most days. I then got my Covid booster 3 weeks later

and 4 days after I was positive for Covid for 16 days.

Since then I never really recovered, I haven’t exercised properly since Jan, I pushed through with work but was falling asleep all the time (at work, missing my stop on the tube) but kept pushing through. Then the weird and wonderful pain symptoms started in about April. All of the sensations and pain and embarrassment of falling asleep made the panic attacks worse (I’d had them since October but didn’t let them stop me living my life) and I’ve became agoraphobic and the only place I went was work.

From august I could barely get up never mind leave the house and worked at home for 5 weeks until I seen a specialist who diagnosed me with chronic fatigue - turns out I had glandular fever after Xmas and then Covid 3 weeks later. He signed me off for 4 weeks 3 weeks ago but told me this would just be the start.

I’ve been totally naive. I thought 4 weeks of healthy eating, sleep, fresh air (treating it like a mental health reset) would cure me. It hasn’t - not even close. I’ve been in bed for 2 days after a 15 minute walk on Friday. But I don’t want my career to be over - I feel like I just got promoted to a role I’ve worked my arse off for ages and I really want to find a way to do my job. One of my main stressors before going off was if they found out I was ill (both physically and mentally) they’d manage me out of the business.

I won’t be back at work for at least another month I don’t think but even that I am struggling to see how I’ll be able to go back and do it. How have people done it?

My role is office based and the week after I went off my employer mandated 3 days per week in the office (I’d been doing 2-3 until July before I basically couldn’t get up) but I know I won’t be able to do 3 days (1 hour commute there and back will kill me never mind a day in the office).

I don’t have a routine yet, some days I have to sleep the whole day, other days I nap once or twice but what I’ve noticed so far is I need to sleep for minimum 1.5 hours during the day everyday. If I don’t I feel grossly unwell.

How have people returned to their jobs? Should I be thinking about asking for remote working, flexible working, reduced hours? I want to get to a point where I am back to my 100% self and being in the office - to be clear this is just whilst I recover but am conscious this could take a year or longer. I am so worried about being paid less so would rather do 5 days in 4 than give up hours (also I think my employer would say my role can’t be part time - and I don’t want to be). My work so far have been excellent and have said they’ll give me everything and anything I need. I really don’t want to go back and be in this position again in 6 months time. What should I be thinking about and asking for? Help!

Ask about a staged return
Sounds like work from home so you can sleep when needed
Sounds like part time until you are strong enough for full time

I have ME/CFS and know lots of others with it too. Your story is horribly familiar.

If you push through the tiredness and try to keep working, there’s a high chance that you’ll just deteriorate. You’ve already discovered how slow recovery is and it will be even slower if you get more ill. Gradually you’ll find it gets harder and harder to do what you can do now, and before long you’ll be housebound or even bed bound. That’s way more common than you think.

Your best chance of recovery is to get yourself signed off work and take lots of time off - probably months - and rest as much as you can. Don’t try and exercise as that will make you worse. Don’t ever push through the tiredness to try and do something. Just stop.

If you can take a complete break and give your body time to heal then you may be one of the lucky ones and get back to work.

Hello, I had covid in summer '21, was diagnosed with glanduar fever (reactivated Epstein Barr virus) in the September and then with CFS in January. I was very unwell and off work completely for six months. It is really, really important to accept that you are ill, not to push through the tiredness, and to give your body space and time to recover.

I was referred to a fatigue clinic which helped enormously, particularly in understanding what pacing it, micro managing your day into small chunks of activity/rest, rather than pushing on through the morning then sleeping all afternoon. There was a big focus on improving routine and sleep quality, and also mindfulness. Daily (very gentle) yoga helped me lots.

I had to scale back my career significantly but started a phased return from February, literally working up from an hour a day. Again, really key to take it slowly. I'm now working apx 3 1/2 days a week. I can do decent dog walks, yoga and some swimming.

I did lots of my own research too, and lifestyle management has given me loads of my energy back. I follow a wholegrain Mediterranean style diet, very little processed food, caffeine (sob!), sugar or alcohol (all big fatigue triggers for me) and saw a significant difference within two weeks. I now feel very lucky, at around 85% of my 'normal' health and can live a pretty good life providing I listen to my body.

Good luck, I know how tough it is x

Thank you so much for sharing. How long did you take off from work? I hope you don’t mind but I might message you.

i have no idea how we’re going to manage through this financially, I’m the breadwinner so to speak and the pressure I’m feeling to get back out there once my paid sick leave is up is huge.

Please feel free to message. I was off from my main job for six months, and then on the phased return for two months.

What a previous poster said about not pushing through is really important. I did continue some freelance work to begin with, a massive mistake in retrospect, which definitely prolonged the illness.

Thank you so much for all of this advice, ill definitely take note about not pushing through

The point is if you go back to work under financial pressure and try to do full time you will quickly become incredibly unwell again and be forced to go off sick again. You will have burned goodwill with work and be financially no better off anyway. You cannot brute force this.

Phased return is going to be your best bet. Look at a 12 month recovery as a minimum. Join a union if you haven't already. You may need support to get workplace to follow through.

I had CFS and it took 3 years to recover to the point of being able to work FT again. I could probably have recovered quicker if I hadn't kept trying to push myself harder when my body wasn't ready. It's easy when you have a day of feeling OK to take on too much which you then crash and flake out on all your plans for 2 weeks. Don't do that.

I have CFS - I’ve had it since my teens but only just been diagnosed. The only way I can maintain a full time job without crashing is to work remotely - I go into the office once a week and that’s enough. Some weeks I don’t go in at all. Before lockdown and WFH became so widespread I would frequently find myself getting in trouble at work and even losing jobs because I was so tired I couldn’t function - I’d be late every day and sometimes just not turn up because I’d sleep through all my alarms, and I’d get home at 7pm, collapse into bed in my clothes and sleep through til the next morning so I didn’t eat properly or do any laundry, chores etc. my health has been so much better since remote working and personally having had fatigue for so long I don’t think in terms of recovery but making the rest of my life fit around the fatigue. That is to say, you might not ever recover. And definitely don’t try and push through the tiredness. If you need to conduct your work and life mainly from bed or the sofa, then accept that’s what you need to do because doing any more will make you more ill.

Wow amazing could you share any books or recipes you follow.

OP I feel your pain as well, covid 3 times, flared all other autoimmune conditions and trying to get back on track is exhausting me mentally and physically.

Sending big hugs

I'm sorry you've had such a tough time health wise @Itsallchangehere

You need assessment by your works Occupational health (they will have a service they buy into)
You also need input from the HCP involved with your fatigue management.

Basically you need a very gradual phased return that works for you on your bad days as well as your good days.
So starting with 2 x half days a week and gradually increasing over 6-8 weeks. This will allow your body time to adapt, as otherwise you run the risk of quickly crashing and burning. You should have regular rest breaks built into your day where you can switch off physically and mentally for about 20 mins.

However You do need to consider the possibility you may get "stuck" at a level of work eg 25 hours which your body simply can't get past.
Working from home as much as possible will definitely help with fatigue management but you need all this put in writing by Occ health and/or your HCP

Good luck

I was floored by Covid and had to have 6 months off work (couldn't even walk in the beginning) and then a further 2-3 months on a phased return. Even then I'd have overwhelming fatigue and have to sleep in my car on my lunch break - it was awful. In the end I applied for a work from home job as a secondment and that helped. I was full time but could sleep when I got very tired and catch up later in the evening.

I never returned to exercising sadly (I'm mid 50's) and have put on weight and no longer have a lot of strength. I do try to walk 10k steps if I'm having a good day at the weekends.

I think I'd push for wfh and part time and ask for an OH assessment. You may need to take a less stressful role in the future. It's not worth jeopardising your long term health for.

My DD had CFS for three years after a nasty infection picked up travelling. For one year she was bed bound, the following two years almost housebound. I gave up work to care for her, take her in and out of school for her key lessons only. The only help we got was an OT who liased with school.
Anyway we tried all sorts, acupuncture etc…..
She couldn’t walk more than 2000 steps a day without a two day ‘pay back’. Emotionally she was struggling knowing she would never get to university.
In July after her A levels we did the lightning project ( by Phil Parker).
Its a lot of hard work and commitment, but she now has no problem walking 20,000 steps every day, the brain fog has gone as has the pain.
She’s made it to university and is coping fine.
Its definitely an alternative therapy that has given my daughter her life back.

The NHS did nothing, we were left to just accept that this would be her life!
it doesn’t have to be like that.

The Zoe Nutrition podcasts are brilliant, also any of the Tim Spector books on food (The Diet Myth, Spoon Fed). Megan Rossi also good for recipes on Insta or in her book Eat More, Live Well. I'm reading Jessie Inchauspe's Glucose Revolution now, which is all about flattening glucose spikes.

None of those are specifically about fatigue but have been really helpful to me. I must say, though, that very little I did in the first six months of glandular fever made much difference, you just have to let the virus run its course. The nutrition stuff made a big difference from 9 months onwards.

So sorry to hear this Op. This happened to me ten years ago post-virally & I never recovered or returned to work. Turned out my thyroid was affected by the EBV virus & now I'm getting treatment, I am showing improvements now.

For others after a virus, they often just needed to improvement their vitamin status, learn to rest properly, keep away from stress & PACE!! I cannot emphasise the PACING enough. Being in bed for two days after a walk is a classic sign that you've over-exerted & used more energy than your body has spare. Google energy envelope. Listen to your body & rest + sleep + relax whenever you can. Give it time to recover. Sorry, I know you need the income, but pushing yourself now could have long term consequences. I went back to work far too soon & became medically retired as a consequence.

Oh & because of the timescale, you would be diagnosed with M.E/CFS now. People do recover from this & their communities will support you with excellent advice along your gentle journey. You'll get there if you don't push.

I'll be honest, I mainly answered to link to this below. Don't listen to the Lightning Process which encourages you to push through your symptoms. I needed a wheelchair for years after trying it & many others have been harmed long term.

NICE specifically say:

1.12.27 Do not offer the Lightning Process, or therapies based on it, to people with ME/CFS.

meassociation.org.uk/2022/10/the-lightning-process-should-not-be-used-by-gps-to-treat-me-cfs/

But the process doesn’t encourage you to to what you can’t!

I'm so sorry this has happened. I'm in a similar position and it's really hard to get the balance right.

Would endorse a very slow phased return over 12 weeks. Working from home, minimal meetings and frequent rest sessions during the day.

Diet really matters - I've cut out alcohol, refined sugar and refined carbs. Plus a low histamine diet and loads of water. X

Hi OP! Your story is very similar to mine. My GP referred me to a ME/CFS clinic (on the NHS). I had my appointment last week. They have various treatment programmes and I will be invited to join one of them. They have told me to mediate before I get out of bed and before meals and also to take breaks throughout the day.

I was going to add that I injured my leg and had to call in sick at work last week. I like my job and didn't want to call in sick. However, I feel so much better! I was forced to rest because of the injury. It has been a real
Lesson to me.

I had a year off with long Covid and a phased return that took another year. I am still struggling with chronic fatigue, and have to be really careful about pacing myself.

I highly recommend Alex Howard's book - Decode your Fatigue. Like others have said it's about being regimented with my diet, sorting out my sleep, careful conserving emotional energy. Working out what are triggers for pushing me back into chronic fatigue, etc. Mindfulness and Qigong are really helpful.

Good luck. It's a long slow process and you can't push on through it, unfortunately.

I have ME.. I work 4 mornings a week (3 from home) I go to bed every afternoon and do very little else-try to do something social at the weekend eg. meeting a friend for coffee etc as well as some bits of housework but my partner has to do a lot. Definitely would not suggest long days.

I have ME. I gave up a career I loved because I just couldn't manage. It's so hard but be kind to yourself and remember you know your limits

I completely lost my teaching career with ME/cfs and its got worse again recently so have asked to be referred.

To confused things I suspect I am neurodiverse so get a level of burnout from daily living now I'm older too.

Its crap.