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.

F.A.Q's By Non Sufferers

It is very difficult to understand any illness unless you have experienced it yourself, that is why i have researched and compiled a list of 'F.A.Qs' often asked by non sufferers. Hope it is helpful!

  What kind of symptoms do people with ME/CFS have, aren’t they just tired? 

Cognitive dysfunction, including impaired memory or concentration , post-exertional malaise lasting more than 24 hours (exhaustion and increased symptoms) following physical or mental exercis, unrefreshing sleep, joint pain (without redness or swelling), persistent muscle pain , headaches of a new type or severity, tender cervical or axillary lymph nodes, sore throat (and many more) Telling  a person you are tired too is the ultimate insult to someone with ME/CFS.

Do people ME/CFS recover?  

The disease can be managed, but no cure exists.  People with ME/CFS often live in isolation in part because their activity levels do not allow them to leave the house, work, or even get out of bed depending on the severity of their condition. However, isolation also serves as a way to avoid viruses due to an already compromised immune system. 

But I’ve seen people with ME/CFS and they look okay? How can that be possible?

 People with ME/CFS endeavour to take part in what activities they can. Unlike people who suffer from depression, they have not lost any interest in hobbies, activities or life. In fact, not being able to participate in these things causes patients with ME/CFS an enormous amount of grief. What you see is a person with ME/CFS having a good day. What you will not see is the price they will pay later for that “good day”.  People with ME/CFS can become sicker if they do too much. This costs them jobs, friends, and support.

You just said that the only drug for ME/CFS was also for AIDS and Cancer, how can that be possible?  

 ME/CFS is not chronic fatigue. Chronic Fatigue is feeling tired, as a symptom. ME/CFS is a serious neuroimmune disease without a known cause. ME/CFS patients have been compared to Cancer and AIDS patients in their last two months of life.

Can I catch ME/CFS? 

You will not catch ME/CFS from someone by talking to them. However, it has been transmitted by blood transfusion, and there have been outbreaks of it in communities in the past. At this point in time, there have been 5 genes associated with ME/CFS, and most people who have it caught it after having any virus such as chicken pox, mononucleosis, the flu, strep throat et cetera. ME/CFS patients are asked not to donate their organs or blood because of potential undiscovered agents in their blood.

But what if I have a friend with the disease, what can I do for them?  

Ask them how they are. Ask them how they are coping. Ask how you can support them. Many patients are living isolated lives. It is painful for them to see so many people do what they cannot do. Many patients cannot use the phone or listen to music because noise and light drains them of energy. They cannot make appointments because they do not know if they will be awake, or strong enough to go. So understand when they cannot see you

Do people die from ME/CFS?  

Yes, the most famous case is Sophia Mirza who died at age 32.  She was sectioned in the UK because she would not get better, and her subsequent “psychiatric treatment” led to her death. When her body was autopsied, nothing was found, but in an independent medical examination inflammation was found in spinal root ganglia. It was reported around the world that she died of M.E. However, her death certificate read “CFS” because the pathologists who agreed what the disease was argued about the name and CFS was the “modern term”.  People with ME/CFS have a lower life expectancy than the normal population and are more likely to die from cancer, heart disease, organ failure and suicide (due to lack of support).

Advice For Friends, Family and Carers Of An Individual Suffering From M.E/Chronic Fatigue Syndrome

If you are a parent, carer, friend or relative of an M.E sufferer, it can be very tough, especially if you do not know a lot about the disease. This guide i have put together will help you understand the basics, from typical symptoms to advice on how to help the individual as much as possible.

What is CFS/ME?

CFS/ME is a long-term illness with a broad range of symptoms. The prominent symptom for most people is feeling extremely tired (fatigue)and generally unwell (malaise) after minimal effort, which can make it hard to do everyday tasks and activities.

People with CFS/ME can also have headaches, sleep problems, muscle pain and problems concentrating. The pattern of a person’s symptoms, and their severity, can vary from day to day, or even in the same day. Some people have relatively mild symptoms, while others have a serious illness that severely affects their everyday livesand their families. The illness may last a long time.
 

People with ‘mild’ CFS/ME are generally able to carry on everyday activities, such as their work or education, or housework, but with difficulty. To achieve this, they may have given up hobbies and social activities and need to rest in their spare time.

People with ‘moderate’ CFS/ME can’t move around easily and have problems continuing normal levels of daily activities. They have usually had to give up their work or education, may need to sleep in the afternoon and rest frequently between activities, and have problems sleeping at night.

People with ‘severe’ CFS/ME are only able to do very basic daily tasks such as cleaning their teeth, or may need help even with these. They may be housebound or even bedbound most or all of the time and need a wheelchair to get around. They have problems with learning, memory and concentrating, and are usually very sensitive to noise and light. It may take them a long time to recover from an activity involving extra effort, such as leaving the house or talking for too long.

Symptoms of CFS/ME

 The symptoms of CFS/ME are similar to the symptoms of some other illnesses, and to find out what is wrong (make a diagnosis), your doctor will need to do some tests. There is no specific test that can identify CFS/ME, so the diagnosis has to be based on ruling out other conditions that could be causing your symptoms.
Your doctor should consider CFS/ME if you have disabling tiredness (fatigue) that is new or started suddenly, lasts a long time or keeps coming back and cannot be explained by other causes. CFS/ME should be considered if the fatigue means you can’t do the things you used to, if it gets worse after activity or gentle exercise such as a short walk, and if you also have some of the following symptoms:
• sleep problems
• pain in the muscles or joints
• headaches
• sore throat or sore glands that aren’t swollen
• problems thinking, remembering, concentrating or planning
• flu-like symptoms
• feeling dizzy or sick or having palpitations (irregular or fast heartbeats),
• exercising or concentrating on something makes your symptoms worse.


How Can I Help Someone With M.E?

Emotions are harder to control with ME/CFS. People may cry more easily or alternatively they can find laughing exhausting causing brain fog. Heightened emotions may be a sign that a person has exceeded their activity limit.

Household tasks and roles may need to be redistributed. Financial adjustments can be overwhelming. Only a few people with ME/CFS are able to continue working full-time. A parent of a young person with ME/CFS will need to change work arrangements to be at home. 

Having less energy means reducing time with others and for most will mean a reduction of 50% or more. Face-to-face contact may need to change to email or telephone. Social outings will need to reduce. Large gatherings may be exhausting. Sensitivity to light, noise and chemicals will lead to further restrictions. 

Any stress such as dental work, infections, financial pressures or relationship issues can cause a heightened response.

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!!

Common Facts About Chronic Fatigue Syndrome/M.E

Here i have researched some common facts about M.E that you may or may not already know.. Either way, the more we understand about our condition the better chance we have of beating it!

ME is sometimes called Chronic Fatigue Syndrome (CFS) Chronic Fatigue and Immune Dysfunction syndrome (CFIDS) or post viral fatigue syndrome (PVFS)

M.E is recognised as a neurological illness by the World Health Organisation and has been categorised as such since 1969.

  

M.E/CFS also affects children  - an estimated 25,000 young people are suffering from the illness

In the UK, M.E/CFS affects 250,000 people - or 1 in 250

Injury, illness and stress (Physical and emotional) can make symptoms worse 

Chronic Fatigue Syndrome dates back to the 1700's 

No test can accurately diagnose the condition - it is, instead, diagnosed by process of elimination by a medical professional

M.E can last for months to many years

M.E patients are permanently deferred from donating blood or organs 

 

My Diagnosis Of Myalgic Encephalomyelitis

Having recently been diagnosed with M.E/Chronic Fatigue Syndrome i have been surfing the internet for information. I have of course found plenty of medical websites explaining the typical symptoms, forums to support people like me and medical research blah.. 

It is known that every sufferer has different set of symptoms, so I would like to put across my experience of this condition and how it affects my day to day living, I hope you find it helpful and chances are my symptoms are similar to mine!!

My name is Emma and i have been living with M.E for what i believe to be a few years now. I had a bit of a traumatic childhood, and prolonged stress up until i was around 21. 

I had left school with 13 GCSE's and initially trained for two years as a hairdresser. I then found a better paying job in the financial services industry, and having initially worked in general banking i then moved on to mortgage underwriting and insurance sales.

 However i had noticed that i had started to feel very tired all of the time, i could sleep for a good ten to twelve hours and wake up feeling knackered. It is something which i became used to and guessed that it was normal to feel that way, after all i had quite an intense childhood and teens.

However by the time i was 22 i was living very sensibly, i had my own flat and car and a full time job. I did not go out clubbing often and rarely drunk either. I was leading a fairly healthy lifestyle yet constantly felt drained, with regular headaches which at first i put down to working on a computer all day. I also noticed that i would pick up the smallest virus going along with pretty serious viruses. In the space of two years i had developed a severe chest infection and picked up Swine flu, both which left me bedridden and exhausted for weeks.

Over the years i had been to my GP complaining of feeling exhausted constantly along with other various symptoms such as dizziness, only be told i was probably stressed or not getting enough exercise or a healthy diet etc etc.. However i knew something was wrong.. In the end we know our own bodies, right? Several blood tests led to nothing and after a while i accepted the way i was feeling as 'normal', although it wasn't easy when friends couldn't understand why i was too tired to come to social events, or hang out after work for a couple of hours. In fact i put it down to hitting adulthood, and thought that this is how you start to feel in your early twenties!!


However i wasn't to think like this for very long, because this year in March 2011, i come down with a very sore throat, and after a few days i visited my GP, who advised that i had a viral strain tonsillitis. He signed me off work for a week to get better, however after two weeks my throat was still sore and i was still feeling extremely fluey. So back to the doctor i went.. and this time was advised it could be glandular fever - i had a blood test for this which was negative, and was told that it may take a while to recover from the virus so to be patient.


Two months later i'd had enough of 'being patient', i'd never felt so ill in my life - daily headaches which painkillers would not relieve, extreme exhaustion at the point where any free time from work i spent at home sat on the sofa unable to move, strange heart palpitations and muscle aches and stiffness with no logical explanation.


So two weeks ago, i finally found a GP who took the time in listening and seemed genuinly concerned as to how i had been feeling. He sat and took a detailed medical history and a physical examination, asking me very specific questions about my symptoms. He then told me that he very strongly suspects that i am have been suffering from M.E/Chronic Fatigue Syndrome. Now i had heard of this before, i think i read it in a magazine a few years back about a lady being severley disabled - so of course this scared me.


However my GP explained, that although some people are severly affected, most are mild to moderately affected. He advised that the condition can be brought on by possibly, traumatic events or a virus(es), both of which i can say i have had a few of over the years!! I was told that although there is no cure, a healthy diet and rest can relieve the symptoms, as well as symptomatic relief such as painkillers. It was a bit of a shock at first, a little scary to have a 'name' to my condition - but overall very relieving to know that i haven't been 'going mad' and to know what it is!


So here i am, two weeks on - i have learnt a lot in these two weeks from regular research and support forums. I have learnt that stress can really accelerate the condition - a long stressful day at work leaves me with a pounding headache and i end up sat at home like a zombie, unable to do anything.


I've learnt that memory loss is not uncommon, and now those little things i have been forgetting or recent memories 'wiped' from my mind have not been me 'going mad', but a significant symptom of the condition. I have also learnt that if i push myself then i pay for it the next day, even a long days shopping can leave me feeling as though i have been awake for 48 hours, spacey and disorientated.


And i have learnt that M.E/Chronic Fatigue Syndrome is not widely recognised enough. Although i have told few people about the condition, i am constantly having to explain what it is, and people do find it very hard to understand how you can be so tired all of the time, even after a lot if sleep.


That will always be hard, sometimes it feels as though no one understands what you are going through. To be honest before i had the condition i would have found it hard to understand, but now i am one of those people. You are not alone, many others are experiencing the same thing every day.  I am now taking each day at a time, full time working is becoming almost impossible so i am looking into part time work and to supplement my income at home self employed. Sometimes life throws things at us that we do not understand, but the way i look at it is that i am one of the lucky ones and it could have been a whole lot worse!!


So for now, i am looking forward to finding out more and learning about my condition, others experiences and most importantly helping to raise awareness to help others understand how debilitating it can be without being judgemental.


This is just my little experience, there are so many others out there who feel the same, and i would personally love to hear from others, so if you are an M.E/CFS sufferer, always remember -

You are not alone!