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).