Living with ME

Hi all, I have been doing some research into ME as my gp has suggested that I may have this condition. My main question is does it get worse as time goes on and in what way does it affect peoples daily lives.

Im only working part time as I cant cope with full time hours. I have to rest regularly which Im doing now as I have done two hours work on my computer, making appointments, looking at bank account etc. I find it difficult to explain to people how I feel as I have been called lazy as I need to rest regularly. How do other people explain how they feel. What do people find difficult. I dont drive much now as I dont feel safe nor do my passengers! Shall I give up completely as I still drive at times. Will I get better.

This is a long journey but I know there is support here. I have used the depression forum for a while.

Thank you


11 Replies

  • Hi David,

    Sorry to hear you are struggling at the minute. Im only 24 and had the diagnosis made of Fibromialgia and CFS two weeks ago although i have been suffering for a while now. The main thing i would advise is try and find a doctor who understands and supports this illness as many will fob u off. Im lucky as i have a brilliant doctir who i put my trust in which does help.

    Apart from that im not really full of advice on how to cope etc as its a newish illness for me and what ive found is no one illness is the same. Unfortunately to say i have slowly gotten worse over the past 18 months but i am feeling more positivenow i have a diagnosis as im hoping i can start getting some help i need.

    All the best. And good health.


  • Hi Stacey,

    Thanks for the message. It is good to know we arent alone in learning about this condition.

    My GP has been very good, in fact it was him that suggested ME. I kept pushing him to find answers to why I feel like this. He kept to his word and found a diagnosis. I didnt want this but at least now I can make plans.

    Take care.


  • Hello David, it must be a relief for you on some level to have a diagnosis and actually know what condition you are dealing with. I was diagnosed after 2 years and eventually diagnosed with ME/Fibromyalgia. Currently have had it for 6 years. Initially my symptoms were wildly fluctuating and now have balanced out. Your main question on whether this condition worsens, I understand depends on the individual, for some it does, others it doesn't and is such a fluctuating complex condition and impacts on so many aspects of people's daily lives, and at different levels and you'll know that this condition also affects people in different ways and you may find it helpful to keep a health journal to make more sense of how you are affected. Is there an ME Clinic you could be referred to if you feel that could help? I found it helpful to belong to a support group, read books & topics on the condition when I was able to. It is difficult to explain this condition to others who are ignorant and become invalidators on the illness. It may be good to have a few short sentences up your sleeve to respond and educate them on some level, some will listen and try to understand and others not, and it becomes telling on what kind of person they are. I find it is the post-exertional fatigue/malaise which is the most misunderstood symptom, finding it across the board, (including the ME clinic I attended, where there was little understanding that by even attending the 2 hour classes and the time to get ready and be transported there was exceeding the limitations for some and the impact of that)! Patience strong.

    Take Care.


  • Hi Golfer 15, get your GP to do thyroid tests (the full panel). I've had M.E. for 21 years and have just had a heavy metals test and am full of the stuff - taking medication. Diagnosed by a Naturopath. Good luck and keep pacing.

  • Hi, I have had all sorts of blood tests so my thyroid must be ok.



  • Hi David,

    You should be proud of yourself still working and especially for knowing when to rest. Listening to your body is key,It is trial and error with everything.. For me trying to get others to understand is the most difficult thing. Now I can tell who will and who won't so save your energy trying to explain to some people who just can't emphasise..

    Don't ever be ashamed! You know your struggle and don't need everyone to get it because mostly they won't. I know it's hard, but try not to take it personally when they don't understand it's tricky but fight for yourself when you feel you should pick your battles and don't let anyone call you lazy because it's that's simply not true! !

    Amitripyline can help with depression, pain and sleep doesn't work for everyone, though it helped me.

    I've had M.E for about 2 years only properly diagnosed about 6Months ago. I can think back to glimpses of it my whole life strangely..

    Here is a link to a site that might help

    I'm finding full time college hard wish you all the best in your job :):)


  • Thanks for your reply Shauna. I will look at that website. Im trying to find out as much as I can about ME.

    Good to know there is support on here.

    Take care


  • You're welcome David it's a great way to approach it there is plenty on the Web.

    Don't be afraid to ask and educate the GP on certain medications or treatments you think will be helpful. If you don't have a helpful doctor find one ask for a M.E/cfs friendly one some really aren't.

    Glad you're getting plenty of support from here I know I have over the years :)

    Take care


  • Hi David

    I agree with everything people have been telling you. I've personally gone from full time work all my life to not working at all for the past four years, diagnosed with CFS/ME after almost a year. I reckon it was actually building for years before hand, but it took me years of badgering different doctors as to why I always felt so rotten before I finally found a doctor who would even listen and doesn't just say "well some people are just susceptible to viruses, you will just have to live with it". Really helpful eh! Now I stick to my GP like glue as she listens and believes.

    She doesn't have all the answers but that's not surprising given how little the medical profession know or agree on about the condition, but at least she is someone I can work with. As people say that is one of the keys to feeling and hopefully getting better. Find as many medical professionals as you can that at least believe the condition is a genuine one and always seek them out if you need help. And I'm afraid that also applies to your family and friends. I'm lucky that my husband is brilliant and very supportive, possibly because he has different but probably more serious chronic illnesses himself (diabetic for one). I also have a sister who has had ME for nearly 30 years now so my family have a fair bit of experience and understanding of the condition. But I do come across many people, even people I thought were friends, whose attitude is much less empathetic and who often respond " oh yes I get tired a lot too, don't we all?" As Shuanna says you have to brush that off and get on with your life.

    And that is another key to improving. Get your mind in the right place. Stay positive look to the future, realise you are going to have setbacks, peaks and troughs but learn to accept them and learn from them. Easier said than done but I find it helps with improving. So another key that helps you do this is listen to your body. With CFS/ME one problem is that by the time you see the warning signs you have done too much, it's too late. You need to learn how you feel before that happens and what is likely to bring it on. It's tricky and very variable but can broadly be done with practice. You do need to pace yourself, but sounds like you are doing that. I still find it difficult and my husband often tells me don't you think you should rest as I get wound up with battling on so much I can't see the wood for the trees sometimes.

    Self help is another vital key. When not even the medical profession can agree on the condition it sadly means you have to manage it largely yourself, with support yes, but take control yourself (that is also where positive thinking helps a lot). Read as much as you can, use the internet as much as you can, talk to sympathetic professionals and patients and friends as much as you can. Open you mind to what they have to say but take nothing as gospel. Just relate it to your circumstances and if you think it might work give it a go. It really is trial and error, hence you will have setbacks but keep looking to the future. Try anti-depressants as soon as your GP suggests or you feel you may need them. They can help. Personally amytriptalene was awful for me but as Shaunna says it works for some. Now I am on Prozac which seems to be better for me.

    As with everything about the condition it is a case of try it, see what works for you and move forward with the support of those who understand and ignore those who don't. Try and explain if you can but don't excuse yourself, you have nothing to explain, they should try and understand and worrying about it will only stress you out and stress is really bad news for CFS/ME.

    Sorry I seem to have written a book so I'll stop now, but I hope you can find something in it that helps.

    Take care.


  • Hope you are doing better these days?

    Just wanted to say thanks for your post (and all the comments), I am finding them really helpful.

    I've had chronic fatigue in the past, recovered after a few years and assumed it was gone. A few years later (this time last year), the symptoms suddenly resurfaced. I am seeing a chronic fatigue specialist next week, having seen the doctor a fair few times, and had lots of tests done. I have been pacing myself, and after lots of days off and being signed off (only for a week) I have now cut down to 4 hours work a day instead of 8. It seems to be suiting me better, but it helps to know how different everyone's stories are. I have days where anxiety convinces me the consultant won't believe me or take me seriously because I'm still managing (just!) to do part time work.

    I'm not really sure what to expect from the appointment but I'm thankful to have read all your stories.

    Best wishes

  • Hi, thanks for your message. I now have a diagnosis of fibromyalgia, so Im taking life slowly. Ive given up paid work but I do a few hours voluntary work each week. I dont drive further than the local shops, I walk to most places and try to visit the gym for gentle exercise. Having fibro, ME or CFS is difficult but not the end to everything, It is about learning how to cope with the symptoms.

    Enough about me, how are you getting on. It is good to keep in touch and realise we srent alone.

    Take care.

    David x

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