Anyone still work with CFS?
Posted , 13 users are following.
Is anyone still capable of working with this illness?
I had to give up work a few months ago, just couldnt do it anymore, run a house and look after kids, i was only working 4 days a week, but it was just too much and the driving was horrendous!
At moment, I still do the odd bit of Avon or work from home opportunity if i can, but im hoping that when both my kids are at school in sept i might feel more able to cope with this illness and seek a part time job again, maybe 2 days a week or something to help pay the bills
I know its all very individual and i can only answer these questions myself, i just want to hear some hopeful stories of people returning back to work or continuing to work as they are able to manage the illness
Thanks in advance for your responses 
0 likes, 19 replies
peter01102
Posted
atso as the final say not ur gp.
dawn97
Posted
I'm very lonely though I miss seeing people yet I never take up invertaions of nights out asim in bed by 7 !!! I also feel as if I'm on the outside of life looking in & No way feel able to join in !
I don't want to frighten anyone I enjoy things in my own way ! When I have strength I've taught myself how to bake & friends/family love my cakes !so to still achieve something new learn when my grain is fogged up most of the time is one hell of an achievement !! So life's good just different good !!
Take care x
Deb1982 dawn97
Posted
this is my first time on a site like this. When reading your comments it could have been written by me.
i am 53 and was diagnosed 2years ago after I crashed out at work unable to turn on computer remember my passwords, this was 2years go. I worked for30 years and now stuck at home I feel lonely I'm no longer the person up for a laugh. I am a totally different person.
my main problems are I can sleep up to 14 hours a day, I have a problem that I don't see on here which is that I sweat constantly, because of this I don't go out an less I have to,just writing this and I have sweat running down my face, I have told the GP but they don't seem to take notice.
by the way I bake too.
chin up
DawnMcG Deb1982
Posted
The sweating...menopausal hot flashes? We're the same age and timing is right for this.
olivetree Deb1982
Posted
Glad you mentioned the sweating as I also have that problem and was wondering if it was a common feature. Almost every activity has me over-heating. I was 41 when I was hit with this and that is relatively young for 'age-related' symptoms of that nature. However, I think my doctor beleived this to be the case. That was 9 years ago but more recently I have begun to experience a different kind of heat problem which I suspect probably is 'age-related' this time.
jelelly Deb1982
Posted
I also sweat. It's horrendous just like I cannot control my thermostat. I only have to iron or hoover and sweat is pouring from my face like someone has thrown water over me. It's very embarrassing and makes me feel odd.
X
peter01102
Posted
zulfat1234 did u get a tin ?
mike76241
Posted
I was self employed which made it easier to work round the physical exhaustion,
thirty five yrs ago this was referred to as yuppie flu, those vunerable
seemed to have worked excessive hours as I did,
I was lucky to find work on a computer, which today there are more opps
you need a job sitting at a desk all day which is so much easier,
a very sympathetic boss and partner, we have two disabled kids with a hearing
loss, one has a good IT job, the other sells goods on the internet,
but the change in lifestyle must mean respecting what the body is saying,
plan your days for minimal exertions, a holiday in the sun sounds the
perfect solution, but it is not, lugging cases, flights, heat,
expectations of your family to take part with the
kids etc, lead to stress, read all the forums as there is so much information,
it helps people post their condition and boost moral as there so many with varying degrees
of this illness, stay strong y will improve, a lot of patience
wishing y all the best,
Joerathinam
Posted
ChloeCybil jacquie14742
Posted
dragontest jacquie14742
Posted
just to sum up my condition as everybody is different.
I have had several good jobs but failed to hold them down for much over a year, it’s been a bit of a cycle find a good job work hard take on more and collapse as the ME comes back... lose job or give in my notice it’s all the same... then you start all over again six months later...
Ok how I am…
I have had ME for 20 years plus and still suffer despite the doctors telling me when I first got ill, you will be OK in six months Haha.
It also runs in families so watch your children, my daughter developed it at 13 years old and I have had to watch her being ill with ME for the past 6 years, she missed her GCSE's and was home taught, it can break your heart knowing what she may have to go through... but you have to stay positive and not give in to the illness/condition.
You can’t give blood in the UK if you have ME, they say it will weaken you too much? However, the American blood service tells it another way, its toxic blood and others will develop it if they have your blood. Straight and to the point don’t you think?
The UK government has undertaken research in to ME and the chief medical advisor at the time has ensured the findings have been locked away for 72 years under the official secrets act, by which time many people with ME would have passed away… so no compensation from the government?
Well I have finally come to terms with the condition after a neurologist told me I have ME 100% no if's or but's… It’s incurable and untreatable and not to try full time employment unless its gentle work, where I can take breaks as and when needed. (Not easy to find such work unless you can self-employ) overstressing the heart by 1% can result in death in ME patients as the heart is a muscle and as you may know tired muscles take a while to recover, the heart cannot do that… so I do not go the gym or take on anything strenuous or stressful, I don’t have a working life if I have a social life I can’t do both so at present I work and don’t have a social life to speak of.
Going shopping I have a wheelchair if needed or use a mobility scooter from one of the shopmobility places, if I overdo it will take 3 to 4 day to partly recover and I will sleep for 20hrs a day during this time. I try to use aids wherever possible, and have a blue badge for the car as it was always getting back from the shopping that was too much, I never knew I have done too much until I found I could not drive home.
Therefore, to answer your question yes you can work but you have to give just about everything else up in order to continue working, people with ME are physically ill and live a compromised life 90% of the time.
Have you tried Access to work? They help me a lot and the employer can get help to pay for the adjustment they have to make (if they are a small company) ME is covered by the Equality at work act 2010 ( http://www.meassociation.org.uk/2010/10/new-equality-rights-in-workplace-come-into-force/)
So it is not the end of your working life, more of a change in the way you work and fingers crossed the medical experts will come up with suitable treatment that works, curing ME in anybody who has developed it. On the other hand, perhaps not… and we just have to make the best of the situation.
Never ever give up the glass is half full, you just have to do it all yourself, dont wait for hand outs as the goverment will find a way of saying your fit to work and not give you anything, but approach if from I want to work now help me, they fall over backwards to get you in work. Play them at their own game and aim to win...
regreba jacquie14742
Posted
dragontest regreba
Posted
Your quite right working has helped me cope better, being organized is the key.
I find I have a set routine of sleeping by a certain time and getting up also at a certain time in the morning, unfortunately I have the same routine at the weekend and on holiday. However, it does help me to control the condition just a little. There are days when I am too ill to go to work but my employer is very good, and I do not tend to trigger any sickness monitoring with the ME due to occupational health informing to the employer I need adjustments to stay in work like phased returns after being off sick.
I also have Access to Work that also highlighted my additional requirements in the workplace. I would recommend anybody with ME to get these people involved as the Equality Act 2010 covers you if you have medically confirmed ME.
cheryl5535 dragontest
Posted
olivetree jacquie14742
Posted
I have been living with this for 9 years and yes, I do work but had to change my job and only work 3 days a week and this is not easy! I find that most of the time this is about my limit and my house is a disaster as a result as I rarely have the energy to clean. I spend my days off recovering and have to pace my activity according to how I am. My sympoms and energy levels fluctuate and sometimes even improve greatly but I have to tread carefully or will end up over-doing things and crash again. Good luck.