How Do You Explain What M.E Feels Like?

Explaining M.E to the people in our lives can be difficult. Here are some quotes from sufferers who know exactly how it is!

      It's foggy and muddy in here

I have FM/CFS for 11 years.It feels like walking in mud,dragging a ball and chain in the fog.its so hard to work up to anything.It's hard to talk and exhausting to have to repeat anything.God how hard that is!Just let me sleep-night is the enemy.Nobody gets it.I look fine-why do i make everything seem so difficult??cause it is(for me).Just look at me and understand.Stop asking how i am.it doesnt change and it makes me feel as weak and embarrased to say i feel like crap yet again.Your worst day is my best day.don't you get it?AAAAHHHHH

Out With the Bathwater!

It first hit me in 1992 after a very stressful house relocation,and I thought it was just exhaustion.After a week,blood tests showed Epstein Barr and I had 3 months in bed sleeping most of the time.Family couldn't understand and my daughter,aged 21,thought I had somethig contagious,and wouldn't come into the room.Very hurtful! I felt like someone had pulled out the plug while I was standing in the bath and my energy had gone with it. I have had one major relapse,2002,after a flu,but when I feel cold sores developing,and generally feeling run down,I know to start taking a tonic high in Echinacea and vit C.That helps,but it usually means a few days in bed.Like others,I hesitate to pre-book outings as I have had to cancel so many times over the years. Be kind to yourselves,and laugh a lot,it helps.

How I feel about ME

When I smile I feel a hole, a heaviness inside, a place where I am empty, a feeling I cannot hide, I try to smother this sadness, with friendliness and smiles, I fill my heart with gladness, yet secretly all the while, you coil tightly around my heart, I feel your weighty chains, you try to tear me apart, but I will not play your game, so I carry on with smiles, and laughter too and hope, that one day you will loosen, and let me free to cope.

Every chore is like doing a marathon

I've had CFS/ME since 2003 and usually explain the symptoms to friends and family as a "never-ending flu". However, after doing stress exercise testing at the Pacific Fatigue Lab in Stockton California I have discovered a new way to explain it. The testing shows that Post-exertional malaise is so bad that the day after the maximum exercise test day #1 it looks like I had run a marathon, not exercised for 15 minutes. It shows that I don't even produce enough energy per day that is required (on average) to take a shower. That seems to be a good way for others to relate the CFS symptoms to their own lives.

Flu bug

At the beginning, the first couple of years was just like that, like having a really really bad flu, and just so weak, dizzy, achy, my brain hurt, eyes always wanted to shut. Now that just happens sometimes, although excitement over things that ask for energy are still low. 

Exactly or Ditto

Adrienne - It feels as if you have ESP and have read my thoughts. Everything you have said I have felt. Sometimes even the little things seem so hard to do. One problem I also have is that when I am feeling good (which isn't often enough) I over do things and then I feel like I have been run over by a steam roller. Sometimes it even seems hard to take a deep breath. I had Glandular Fever about 15 years ago and life hasn't been the same since. I would love to hear from anyone who has a similar story. I am so sick and tired of myself being sick and tired. I'm at my wit's end. If I was told I had a fatal disease and had only 6 months to live, it would be a blessing. Everyone take care, Mary-Anne

Like being under anesthesia

My life has not been the same for the last 12 years since I was diagnosed with fibromyalgia and Chronic Fatigue. I feel like someone has injected me with anesthesia and I am about to have surgery. You know when they say count from 10,9 8 etc.... and you feel like you are falling into a deep sleep. That is how I feel all of the time. What a horrible way to live. I hope and pray that someone finds help .

Explaining CFS

I am a veteran when it comes to having CFS acquiring this in 1984 at age 44. I am in the majority as Dr. Paul Cheney once explained to our support group. We get sick and then we keep acquiring all these wierd symptoms. To describe it would be to say it was like a combo of sleep deprivation, flu, hangover, and jetlag all rolled into one. Then, as we age (I am soon to be 70), we acquire new issues and its difficult to separate CFS from aging. To describe in more detail would take more space than what is allotted here.

10 Things I Hate About Living With M.E/Chronic Fatigue Syndrome

Being a sufferer myself i now understand how hard it is to live with M.E/Chronic Fatigue syndrome. It is one of those illnesses that you really will never understand unless you have experienced it yourself. I thought i would share with you my 10 Top hates about living with CFS/M.E! Some funny, some frustrating.. And not in any particular order. I am sure you have your own so feel free to add them!

1. Tasks that were miniscule before i was ill are now a huge effort. Never did i think that walking down the road or holding a ten minute conversation would exhaust me so much, now i understand that it can and have to keep reminding myself that what used to be a harmless daily task could now be enough to mess me up for hours/days!

2. Even the smallest noises can frustrate me to the point of tears.. If someone had said to me before i was ill that the television being a little too loud, or someone speaking a little too loud or dropping a heavy item could make me feel as though i wanted to cry i would have laughed my head off! Unfortunately that is the case! My ears are now so sensitive to loud or unexpected noises and it seems everything is ten times louder than it actually is.

3. Most painkillers do not relieve the tension headaches/migraines. I have always been one of those people that if i have a headache or a bodily pain i reach for the painkillers, quite simply because they work and provide fast relief. This is now not the case! The awful migraine type headaches i experience on a daily basis are rarely relieved by even the strongest painkillers.. Paracetamol.. Co-codamol.. Ibruprofen.. Even those special tension headache tablets.. They will either provide mild relief or work for an hour and then the headache comes back!


4. A lot of people do not understand how exhausted i am. I have always been a sociable person and before i got really ill i enjoyed going out with my friends and socialising.. However now i often have to decline offers of social events and even 'catch-up's for i just don't have the energy to do this. Even a two hour 'catch up' could make me even worse. But what is more frustrating is the amount of people who just don't seem to understand how ill you are.. "Oh it's only two hours" or "Have an early night and you'll be fine".. What people need to understand more about M.E sufferers is that no amount of sleep or rest is going to magically make us better for a day, and pushing ourselves too far could end up making us worse in the long run.

5. Having to explain to people what M.E or Chronic Fatigue Syndrome is. The few people who i have told about being ill, most of them say straight away 'What's that?!' and having to explain over and over again what it is. I appreciate it is not their fault that they don't know what it is but M.E/CFS is a disease that is as debilitating as most other serious medical conditions in the world, and the fact is that people can, and have died from it. More awareness needs to be raised on this matter!

6. People saying "You look well".. It may be a compliment but the fact is that most M.E/CFS sufferers do 'look well' - however inside they are profoundly ill and you just think 'If only you knew how i FEEL'!


7. Fuzzy/groggy head moments.. These can be ever so frustrating, but also rather funny at times too. Like the time i went to pour the kettle onto my dinner, or brush my teeth with the toothbrush i use for exfoliating my lips.. (Ew!!) Annoying on a daily basis but provides light laughter in times like this!

8. Mixing words up.. So many times i have been half way through a conversation and then as quick as lightning completely forgotten what i was going to say! Or times when i completely get my words confuddled.. Sometimes you wouldn't think i was 24, but 4 haha! However i know this is just part of the illness, as frustrating and embarassing as it is!!

9. People asking how you feel or if you are feeling better.. Obviously you don't always want everyone to know about your illness for fear of having to explain it all over again or people feeling sorry for you, but sometimes people know you are not well but do not know the nature of it. The amount of times people hav asked me 'Are you feeling better now' and i have just replied 'yes thanks' as i can't be bothered to explain it all is unbelievable! Sometimes it is just better to not say anything,


10. Fatigued constantly.. But often you can't sleep! I am sure every sufferer straight away knows what i am taling about here! You spend all day/evening feeling so fatigued you can barely do anything, and all day your eyes are just begging to be closed.. But when you hit the sack in the evening.. Sleep is so hard to come by!! The headache, the grogginess, night sweats and the general feeling of being 'unwell' make it so hard to relax enough to sleep, it's like a catch 22. The way i deal with this now is to literally snatch sleep when i can.. Whether that be 12pm.. 4pm.. or 9pm.. If it means getting some of what is so important to us CFS sufferers then so be it!

So that's my moaning over.. Sorry to moan but sometimes you just needs to let it all out!!