I'm currently sat on the sofa with my dog feeling so down. I have just come home early from work because I couldn't keep my eyes open, my forearms are sore and finding it hard to concentrate. Fortunately I work for my father in law and he's very kind, but in some ways that's worse because I don't want to appear to be taking advantage. But how do you explain that you need to go home because you're just so tired that you can't type or hold a conversation with people? I feel so embarrassed. Sorry for the moony post but I just need some advice from people who understand....
I feel your pain. I'm sat at my desk with so little energy or enthusiasm to do any work because of the lack proper sleep I get from this stupid illness. I'm just watching the clock untill 3.30 when I can go home and lay down and then have another crap nights sleep and do the same again tomorrow.
I feel for you, I am exactly the same. I am sat at home, alone. What have we done in our life to be given this awful illness that no one can see.
Hi Nacho,
I'm 10 months into my CFS, diagnosis was made July. Look into adrenal fatigue.
I'm suspecting this is what is wrong with me. It made alot of sense when i read the book. I had to give up my job because of this condition. I envy you because you can go out and work, i couldn't.
How about trying 15mins break every 2 hours sitting in your car listening to some soothing music? Then at lunchtime spending 30mins in your car listening to some soothing music again? Get approval for the 15min breaks of course explaining why you need them. I'm sure your boss would prefer 15 min breaks rather than whole days of feeling too tired to work. It would also be better if you could get / afford part-time hours. My OT said that our energy batteries run down during activites same as everyones. However if you don't have ME when you have your lunch break your energy battery fills up really quickly to give you energy for the afternoon. If you have ME our batteries hardly fill up at all and therefore we don't have the same energy as others to complete the day. Therefore we need to keep topping our energy batteries up along the day.
Good luck
Hi Nacho,
I can completely sympathise - I started a part-time job about 6 weeks ago, I return home after the shift and am exhausted and in quite a bit of pain. If I do any more than 4 hours I feel sick and dizzy and my head feels like it's being crushed 
Some days I don't struggle too much being there, but other days I do struggle. I haven't told anyone at work about my condition, but I am struggling to hide it- I think I must come across as being quiet or aloof! Maybe you could work out some different hours with your boss? Or work from home if possible? It's good that your father in law is sympathetic, maybe if you explain more about your condition it would help? Don't lose faith 
I completely identify no should b there til 5 but had to leave early. I like the idea of topping up batteries a few times in the day.
I've tried explaining to my boss who just doesn't understand - sort of negotiated working from home but oft get snidey comments and feel guilty about doing so.
It's so tricky as I want to stay in work, it's a fairly emotionally demanding job w lots of driving. I'm now on my bed , blinds closed, with a headache.
I almost feel the CFS coming on - in fact I do feel it coming on, I'd like to b able to identify earlier warning signs , then think about a way to recharge my batteries. Do you have early warning signs?
I hope u manage not to give yrself too much of a hard time. It's not your fault. X
Wish I got early warning signs . The professionals would probably just look at what I do in a day and say that is your early warning sign. However, when I'm feeling as though I can do more then it seems wrong to stop. It's as though I haven't reached my full potential when there is still so much to do. I'm never going to win - I either stop before I drop but feel disappointed that maybe I could of achieved more, or I achieve more but drop feeling yucky 
To all of you pushing yourselves to work and feeling guilty if you you don't. I'm a long-time sufferer of ME/CFS, and I totally understand, because I did the same thing. The result? My illness got worse and I relapsed badly. Please be careful. Believe me, it's way better to feel bad because you're not working than to get an even worse case of ME/CFS. Think of it as advocating for yourself. If people don't understand, well, too bad. Get the rest you need to improve your chance of getting better.
hi, l cant say if lve cfs and its not been diagnosed, l do have intersticial cystitus, ibs allergic rhinitus, few skin probs, all being immunity conditions. But l do get chronic tiredness-fatigue, very low energy and virtually no stamina, used to have lots and could go on doing jobs for hours, if need be till early hours of morning and get up ok. Now if l push it with even minor-moderate exertion for above l0-l5minutes l feel very nauseous an off it, need to sit quietly for 20min or so, then push to do another 5-10min moderate jobs, frustrating as hell, and guess many are like me on their own. l prioratise best l can, meaning pets fed and let into garden, basic tidy up, no thorough cleaning gets done, garden maintenance near impossible, hedge clipping l try in sections, near pass out if l do too much. But like others push it to try get things done, some satisfaction at achieving something and getting a job out of way. l feel a need to nap during the day, eyes heavy sore, in the hope of feeling less off it. Still the tiredness doesnt mean a good nights sleep, can wake up, drop off and wake again, then get up feeling like l want to go back to sleep. l cant say if its cfs, seeing doc tomorrow, but its so easy for them and others to put it down to phycalogical, whilst l feel like a semi invalid, but its not just work its also social life that suffers, invites missed, difficult with friendships. Is nausea a symptom, with poor appetite, do sufferers gain or lose weight, does it affect temprature, re overly cold or warm. Whatever cause l definetly know what fatigue feels like, even when out shopping, just a short plod around feeling older by the minute, Like you nacho, sat with my 2 dogs on sofa, who have empathy and comfort, often fall asleep with mine snuggled up, at least no pressure from them to perform physically or mentally. Its good your father in law is kind about it, meaning he has some understanding, think all you can do it your best and whatever advice is about.
You describe me to e tee. I'm scared of going off incase I am off for months ( only have few weeks sick pay).
But feel tempted to as doc for month off to her used to some sort of level that is my ability. Have you read/ heard about the 'envelope of energy' strategy? Ie working out what your capabilities are and working to about 80 % of that capacity. Mind you, my energy fluctuates so much - that might b tricky - just Thot I'd ask if you ( others?) have any experience of this idea.
Thanks for your responses - it helps to talk to real people with CFS and not just health profs who only know the theory ! Xx
Lynne: Unless bloodwork reveals another illness, your symptoms sound spot-on for ME/CFS. Even your interstitial cystitis is a possible symptom of the illness (I also have it, along with ME/CFS). Everything you mention-- fatigue, skin problems, nausea, gain and loss of weight, problems regulating body temperature-- are symptoms of the illness. Don't let anyone, including doctors, tell you it's all in your head. If your doctor doesn't give you a diagnosis tomorrow, go to an ME/CFS specialist. GP's often cannot diagnose this illness. From everything you say, I'd be very surprised if you didn't have ME/CFS. Best of luck to you.
Hi jackie, thanks for info and advice, wow suprising how many of these conditions and symptoms overlap, guess its all to do with immunity. l sometimes think gps cant diagnose anything thats just a bit rarer, got to be a common complaint, or it takes them an age, it did for my ic diagnosis, and that was down to urologist cystascope, not gps, no clue, seems once you get one immune prob others can follow, but at least l know symptoms are right, wasnt sure, thanks.
Let us know how your doctor's appointment goes.
Hi David, thanks for your reply. I do feel fortunate that some days I can work, but I do have a total of about half the day where I'm just staring at the screen! Do you mind me asking how you manage financially without working? I can't see a time when I would be able to not work...
Hi Nacho,
I manage financially because of the years i was in work i had been saving up, so basically using the life savings at 34, borrowing money from friends and family, selling my 3 triathlons bikes, swimsuit, various other things. Before i was unwell i had 2 jobs and an online business. I perhaps was burning the candle at both ends too long. After 10 months of this i strongly suspect i have ADRENAL FATIGUE. I did get a virus as i remember how utterly horrendouS i was December into Febuary. Literally thought this is it i am dying.
Every test under the sun has been normal. I did do an adrenal stress test and it's conclusion was stage 3 adrenal fatigue, or pre fatigue stage which could be the root cause of my chronic fatigue.
Good luck mate. You don't sounds as bad as me so i suspect some good quality adaptogenic herbs will transfrom your energy levels pretty quickly.
The battery thing makes a lot of sense actually. Because it's true that everyone gets tired during the day, but as you say, we just can't seem to 're-charge' very effectively. I might look into having little breaks - as it is, I just eat my lunch at my desk, we don't really do lunch breaks, I'm self-employed so if I'm working while I'm eating I'm still earning money. Thank you for the advice
It's funny, I'm back in work today and trying to explain why I just bolted yesterday has been interesting! I dunno, I just feel embarassed, like people must be thinking 'what's the big deal?! We all get tired!!'. I do 3 days a week at the moment, and like you Emma, some days are better than others. I think next time I feel that bad I'll just stick it out and put my head on the desk!!
I too am a long term sufferer of ME/CFS but didn't know it until last year when my condition became much worse! The year before I was working 7 days a week some weeks and late into the evening (that's being self-employed for you and unable to say no). I now am really stuggling to even work even 10hours a week. Have to use a mobility scooter or 2 sticks if I'm having a good day. Hardly drive and got to bed about 8pm. So everyone I strongly advise you that it could be you next if you work too hard. I never thought it would happen to me (I'm 36).
Wouldn't recommend it. Cos if you're anything like me you'll get too ill to be able to stand up - let alone get from. Then you really will scare your colleagues. Consequently they will keep looking at you as if you're about to collapse again.