Work

Oh the memories of that 9 to 5 existence. Well, actually, an 8.30am to 7pm and then never quite switching off in the evenings and at weekends existence.

Now, for me, the prospect of a full day’s work is a distant memory and a future dream.

It’s been nearly a year since I last managed to do so; since then I’ve been signed off work. The most I’ve managed is the odd hour or two here and there.

The amount of energy just going to work sapped from me really took me by surprise. A combination of apprehension over whether I’d manage to do what I used to do, being overwhelmed by the kindness and good wishes of my colleagues, and then the unwelcome sensation of brain fog and blurry eyes once I started doing some actual work has taught me that pushing myself through that process isn’t good for me.

For now, I am lucky enough to be able to do some work from home – and average of 10 to 15 hours a month. A month! It’s a far cry from the time when I’d manage that much work in a day.

There’s probably a lesson in there somewhere!

So where does work fit into this?

Well, we’re all different, with our unique version and pattern of symptoms and our own individual circumstances.

I am incredibly lucky to have a fiancé in full time work and an employer that’s gone above and beyond to look after me.

But, that said, I have still spent considerable time thinking about how I may utilise my skills in a different way if I end up not being able to go back to my job.

I love writing. I can write anywhere. Indeed these posts have been written in bed, I the lounge, in coffee shops, and this one is being done on board a flight to Scotland!

My point is that there is a way to make a living, if needed, that doesn’t involve being in a physical workplace, or working traditional hours.

For me, that writing could be journalistic, or promotional, or simply the book I’ve got inside me that I’ve never found time to write.

Of course I also need to be aware that writing tires me, so I must be careful to manage my energy levels and expectations of what I can achieve.

If you’re anything like me, being off work is frustrating and upsetting. I love my job and I just want to be back there doing it. But there’s every possibility that I won’t be going back any time soon.

Accepting that, instead of fighting it, is an important step in the right direction. Just as I’ve learned to pace myself – to avoid my battery running flat leaving me bed bound – I now know pacing my mind matters, too.

But I also need to feel ‘useful’, as I’ve written in a previous post.

We are lucky to be living in a time when traditional work days and work places are fragmenting, when technology means we can do more things anywhere.

You may have a creative skill and could write or draw or paint from home. You may have an educational or coaching skill that you could deliver via Skype. You may have previously worked in retail but could transfer those skills to running an online shop.

The point is that, however much you miss what you used to be able to do, there is probably something you still can do – even if it’s only for a few minutes a week.

That’s if you need to work. If you are financially secure, have a partner who works, or have access to a benefits system to support you, it’s vital you don’t feel guilty about it. That network is in place precisely for times like is and people like you. It’s hard to think that you deserve it, but the sooner you can think of it like that, the sooner you can focus and save your energy for things that matter. Worrying is not a good use of that scant resource!

How have you made work fit into your life with ME? What hints and tips do you have that others may appreciate? How have you let go of the ‘old you’ who likely worked too many hours in the first place? Share them with other Zonked Club readers so we can help each other.

2 Comments

  1. Hi, I listened to your radio show yesterday on Twitter. I was diagnosed with CFS in 2005 aged 21 after been ill for a couple of years. They found I’d had glandular fever from my blood tests and I’d never recovered properley. I was then referred to the CFS service in my area and did a graded exercise programme over a year and went to a physio who specialises in CFS and I made a 80 % recovery and was able to get back to work. Over the years I have always had very low immune system always been more ill when catching virus and ended up with bad case of tonsiltus relating in guttate psoriasis and I had to have my tonsils out as I was always getting infections easily but aside from that it was atleast manageable. Then beginning last year I became ill again my back muscles went in to spasm wouldn’t come out spasm and I had problems with my bladder. I ended up at a & e they thought I had trapped nerve I didn’t then my left side predominantly became very weak. I’ve had severe nerve pain muscle pain,awful insomnia, bladder problems, dizzy spells and all my CFS symptoms and Chronic Migraine. As it had been 12 years since I’d been really poorly again, been under the CFS service they had to explore all other possibilities. So I’ve seen an orthopaedic surgeon which I paid for hoping to speed things up, rheumatologist, neurologist as well as been under the care of the pain clinic. I’ve had to have an MRI of my head full spine to rule out MS as the symptoms are similar. Now I’m told I have symptoms of Fibromyalgia as well as CFS and have been referred back to the CFS service again. My mum has Fibromyalgia and all medical consultants have basically reiterated I have mixture of CFS and Fibromyalgia symptoms. I have been off sick from work since May last year as Drug and Alcohol Revovery Practitioner within Prison Service. This is a job I am probably going to have to give up as I am not safe to go back and certainly not fit or well enough. Obviously the pressure from work/ home visits obviously wanting an answer so they can fill my job hasn’t helped. This is a job I loved so I’m finding this difficult to let go. I have a lovely partner who I’ve been with nearly a couple of years he moved in last year so I’m reliant now on him financially. But before I met him I was a single mum and I like my independence and that for me has been taken away. I like my routine and the feeling of uselessness is familiar and also the social aspect of going in to work too. I have a 7 year old and am reliant on friends family to help me out with school runs. I might do 2 a week I could never do the drop off and pick up as I’m exhausted for the day. I’m not sleeping well so the moment I wake up I’m shattered and my battery’s never recharged. I’ve tried pacing since I first came off sick unfortunately it’s not worked. I see the Dr at the pain service regularly and all they offer is pain relief. I do not wish to spend my life drugged up and do not feel this is a solution as your body becomes more dependant then things stop working. They’ve referred me to physio 3 times they refuse to see me, the mention of CFS fibro the look of horror as if they darent do anything incase they make you worse. Now obviously people with our condition as well as any form of treatment need to be built up before going back to work etc especially with conditions that affect nerves and muscles. Like everybody my body is weak I’ve had recent occasions we’re my legs given way and my left side is the worst I tend to over compensate on the right. I suffer with terrible muscle spasms especially at night. So currently I’m in the process of having to give up my job and waiting for an appointment for the CFS service. This is after a year of investigation. My sick pay stopped then my SSP stopped I had to claim for ESP. When I did I was told by the advisor on the phone due to my long term health condition to apply for the PIP benefit. This is like a disability benefit. I had the most awful experience when I went for the medical. The asser had no idea what CFS was and said “oh your just tired”and couldn’t grasp the fact all the symptoms came along with this condition. Then she said sarcastically “who diagnosed your CFS the GP” I was mortified. I snapped immediately I said “no a specialist in infectious diseases, my parents paid as I was so poorly”. I couldn’t lift my legs when she examined me and she actually lied in the report and said left side movement normal. I shake when I move my arms especially my left she said “ is that normal” nothing mentioned in the report. Oh because I could hold a conversation and I had no problems sitting everything was classed as normal I got 0 marks. When I mentioned brain fog she thought I was in somewhat trying to say I had a form of learning disability. Currently my walks are short 5 mins she said I could walk 20. I’ve actually made a complaint to the DWP I support of all people with M.E/CFS and Fibro as this is a true disability a lot of people large majority are unable to work and when attending a medical people should know about these conditions. I came out in tears like I gave up a good salary just because I felt a bit tired. Ive took it further to support all people with our condition. I stared when I complained I’m a health worker myself and found her unprofessional and rude and really offensive. When it came to talking about personal things there was just no thought she had no filter. I was appalled. My words on the phone I do not choose to be like this I’d rather be healthy and be able to work and have my life back!
    I’ve always been a positive happy person who takes pride in my appearance I’ll never change. Most days I’m lounging in joggers pjs no make up messy hair but if I’m out having a coffee etc people see the made up not always real you so they make assumptions. I’m not giving up people think when you are not constantly moaning you look ok that you are. That doesn’t bother me I bother for my daughter, I want to stay smiley positive. I would be thrilled to be 50% better. Your health is your wealth. My GP gave good advice to me last week just for now accept how you are don’t push yourself. I’m thinking of a uni course or something to aim for In 6 months. I know this time with Fibro and with CFS it’ll be more difficult and I have these chronic migraines which are awful. But I know often we are all desperate because we are in so much pain and it’s difficult but been drugged up just isnt the long term answer. I’m on two types of medication for epilepsy for nerve pain and migraine and Amitiriptilyne. Have tried stuff for muscle spasms don’t find it successful opiate meds’ trigger my migraines. Best of luck to you just thought I would share my story. The current benefit system really annoys me for people who are signed off unfit for work through no fault of there own and the NHS taking so long for diagnosis and treatment and basically the medically profession for lack of interest in CFS and Fibro.

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    1. Oh Kelly, thanks for sharing. So much of what you’ve written resonates – especially that sense that people think ‘oh you look well so you must be well’. Please continue to look after yourself as best you can, and find ways to be kind to yourself – even if that’s just finding five minutes to look out of a window and hear the birds in the trees (or whatever’s out there!). Sending my best wishes.

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