I collapesed last summer after feeling really tired as if i had a bad cold or flu like symtoms, just thought it was I was working too hard. I was then told that I had just had a mild stroke. After a few days in hospital they let me go home only for the pain in my left leg and arm to come back next day. This time the hospital said no it was not a stroke but a migrane and again let me home. After a few weeks off work I returned to work but never felt really well. Was always sore esp on my left side. My strength never returned fully. I returned to work in January after 3 weeks Christams holiday for one week then work up during the night with really bad pain again. Went back to my GP and they booked me off work again for 3 weeks, but after this I still felt ill. Again the GP Booked me off for another 4 weeks and refered me back to the hospital. The hospital said this was defo not a storke but was not sure then referred me to ano doctor. After now being off work for 7 weeks this time I finally got to see someone who has now told me that he is sure it is ME/CFS I am suffering with. I find my legs dont always want to work, i loose my balance, get pain in my neck and down my spine, am tired but cant sleep, my arms feel sore all the time. I am really cold most of the time and find that I am forgetting things and sometimes cant find the word I am looking for, I slur my words and my whole body shakes (the gp said temours dont happen with me). I am an HGV driver and at the moment been told I am not allowed to work or even drive a car as I would not be safe. I feel as if I have just had my life taken away from me as I love driving.
Has anyone else been told they cant drive? or not allowed to work and what happens they wont tell us they are just saying we just have to see how things are in 6 months.
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Davy42
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Do you honestly feel safe driving 100% of the time? I don't, so I only drive when I feel safe - that way I keep myself and everyone else on the road safe. It was hard to accept at first but a couple of very minor paint scratch bumps (brick wall/pillar) and a few times when I have been at junctions/roundabouts when I just know that I am just not taking it all in and had a near miss or two made my mind up. I need to drive for my job too so I fully understand where you are coming from. I have had over a year off work while I accessed treatment and am now back part time.
I was not told I could not drive - I made my own mind up thinking if I could live with myself if I severely injured someone or worse because I was driving and felt tired. Its not worth it. Your life will get better and your body will fix its self, if you give it time and the right conditions. You may just need to rest for a bit while your body recovers. Don't risk some else's life.
Yes all the above I agree with. Sadly with an illness like ME many of us do lose our careers, jobs we love and it can be loved hobbies too. Hopefully for most of us this is temporary and we can get back to something like our old life. But it takes time. I do have tremors, always when I have overdone things and I know others with ME who have them too. Sometimes my head is too muzzy for driving and/or too tired and know I wouldn't be safe driving. It is a waiting game with ME - pacing is all - is there something you like doing that doesn't use much energy, such as photography, drawing, painting - it helps me to do something productive that I can pick up and put down. Fighting ME just results in relapses - where all the symptoms are worse for a while.
It took me ages to 'listen to my body'. I've found help/info/contact with others with a self-help group and info from the two national organisations : Action for ME and the ME Association. Best wishes for better health.
I was diagnosed with ME a long time ago (1989) and thought after a year I had thought I had beaten it. then a few years ago I had Pneumonia and it took a long time to get over it and that is when one of the consultants in the hospital told me that you never get over it totally, I fought to get better and then a couple of years later I got it again. This time it took forever to get over and as I have had arthritis I have been fighting for years that hit hard and I have had a total life change, it has meant me having to leave the job I loved with an excellent wage to get put on benefit and so far no hope of regaining any part of my life. If I do slightly to much I am incapacitated for days after, and it could be good things, I am always exhausted and have to fight the exhaustion or I would just vegetate and that is the last thing I want to do. Sleep is always broken by pain and as you know with ME it is not always the sleep but sometimes just the pain and exhaustion that get you down.
Sites like these are a godsend for me as I feel I can read how other people are doing and sometimes write in and hope that I can be of some help as life is not all doom and gloom if you work at it and it really does take a lot of work to overcome sometime but it is worth it as you are not a vegetable, you can get about and there are a lot of people who are unable to do that.
Sounds like Fibromyalgia is well. I have both (to name a few!!) as with driving, I don't drive if I don't feel safe, tired, in pain, better to be safe than sorry. Never worth it, especially if your legs feel wobbly.
Many do lose jobs, this illness's so unpredictable, I used to say each day is different, lately each hour is different, no employer will put up with me wanted to lie down every so often, especially if I need to go to sleep as well!! Have a google of Fibro, you could well have both.
If anyone is having their thyroids tested, please note, blood tests are unreliable. my tests always came back negative, till my doctor done his own research and final agreed I was hypothyroid.
Check Dr Sarah Myhill's website. a good English website!!!
Thanks Edmesh and yes since the org post we have been to it is looking like Firbromyalgia but could very well have both. My HGV licence has been pulled been told I will never drive HGV again but may be allowed to drive a car sometime in the future but not for a long while. I have been getting phsico which has not really done a lot but now that I have finally accepted (although still angry about it) things are starting to settle down. My imune system seems very low I catch colds, and infections really easily now. I have a wheel chair for bad days when i really cant walk at all and a walker to help me round the house. Other days I get up and you would think nothing is wrong with me but always the little niggles and the tiredness to remind me if I do too much. Really hard on family and friends most dont understand as it is not something they can see as I am only able to go out on good days so they dont see me on a bad one.
Yeah I applied for my driving licence in 2013, and it was refused, due to anxiety and the medication I was on. I was very p.......d off. Anyway another friend has said forget driving, it's too stressful out there anyway, and too much traffic. So I let my man drive, and chauffer me around like a PRINCESS LOL !!!!
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