An Open Letter ~ M.E. modified.
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my days in bed or housebound trying to rest and wish this illness away, and I might not seem like great company, but I’m still me stuck inside this unwell body.
I still worry about not being able to work, doing my bit, my family and friends, and all the life that I am missing out on. Most of the time I’d still like to hear you talk about yours too. I am interested in you and what’s going on in your life, even if you think I’m not. This illness makes me miserable sometimes and I can’t always be “on” for you…but I do try my best. I’m sad that sometimes I am becoming rather cynical and come across as grumpy or precious!
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, or like you are about to die when it’s a really bad one - but I’ve been sick for years on end with that type of feeling and it’s relapse/remitting, which means that on the rare occasions I feel stronger and that my life can start again, I obviously try - it’s human nature to want to have a life. Within time, a day, a month, a year or two, I am suddenly decked with a relapse again as a direct result of trying.
I can’t be miserable about my M.E. all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound brighter, it means I’m happier inside despite what my body is doing to me. That’s all. I may be dog tired, foggy brained, I may be in pain. I may be feeling sicker than ever. Please, don’t say, “Oh, you’re sounding better!” and start planning things. I am not sounding better, I am sounding happy. I live in hope of being better and you will be one of the first to know if I ever reach better and stay better! I can’t fool myself into feeling better. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my energy & cellular resources and I’ll need to recover - imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing as it’s multifaceted, highly unpredictable and does some very strange, debilitating things to me.
M.E. is not all about being tired. It is not about being “chronically fatigued”, it is far worse and now can be accepted as more debilitating than MS!. I get so sick of being put in that devaluing CFS basket! It is not the same illness at all even though the modern label used is to lump them together as in “ME/CFS”. If you really want to know about this illness ask me. I am probably more of an “expert” than the imaginary expertise of many GPs!
Please repeat the above paragraph substituting, “turning over in bed” “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything including romance for M.E. sufferers! That’s what a neurological illness does to you. It’s me who has to learn how to manage and accept what has happened to me. I am not being selfish, self-centered, lazy or a hypochondriac. You would never say that to a Polio or MS sufferer in this day and age (even though it happened to those people before they found the right medical tests and causes) so don’t be unkind and please think before you speak…I am trying to preserve my life and I have to do whatever it takes by instinct…I am listening to my body because I have no choice. I have learned the hard way. Over extending myself in any way is catastrophic! Please don’t be annoyed by my attempts to manage my M.E.
Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk a little way, maybe around the house or garden or even a shop, while the next day I’ll have trouble even sitting up, feeding myself or getting to the bathroom. Please don’t attack me when I’m ill by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally. I cannot plan ahead or accept your invite to the next week’s birthday party, or coffee out etc. I have to see how I am on the day and I have to try and save up strength to be spent of such things. This is so hard as my body demands nearly all of my energy just to keep alive. There is little left over for anything else. Please don’t punish me by withdrawing from me for having to let you down (again), or not fitting in with your busy schedules…
Please understand that I have to lock myself away sometimes. I am not choosing to be a recluse, this is the nature of M.E. and the only way I can get the peace and rest I need. The slightest intrusions of noise and talking can cost me days of being drained - throwing me into fevers, pain and semi-consciousness. Please phone me first (preferably a day or two before) if you are planning on a visit - don’t just turn up. I also ask you to understand that sometimes I can’t even talk on the phone - I am so drained and muddled I cannot take in what you’re saying or respond much at all. I’m not being rude - I really can’t handle talking! I may be needing to sleep right then and your visit/phone call will probably make me much worse. I value you and want to enjoy the times I see you, just please let me prepare for seeing you or talking to you as best I can. I understand that it seems to be me calling the shots all the time, I wish it didn’t have to appear this way - I am doing my very best to keep my friendships alive. My illness forces me to take these actions, it is not a choice.
Please understand that “getting out, having fun and a laugh and doing things” does not make me feel better, and can often make me seriously worse. Every bit of stimulation drains me. I have learned to control as best as I can what I can cope with each hour without severe payback and I’m so sorry, it’s not much. I am not lazy. I am not being difficult. M.E. may sometimes cause secondary depression (wouldn’t you get depressed if you were stuck like this for years on end?!) but it is not caused by depression. Telling me that I need to adjust my thinking, or get some fresh air and exercise is not appreciated and not correct - if I could do it, I would. I have a damaged brain - please remember this.
Please understand that if I say I have to sit down/lie down/take pain relief now/eat food, that I do have to do it right now - it can’t be put off or forgotten just because I’m doing something. M.E. does not forgive. The symptoms are highly distressing and affect me immediately. I am in constant damage control.
Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now, even if it’s spent watching a movie or surfing the Internet etc. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up and am having a holiday in my bedroom for a few years. It’s just how life is when you’re dealing with a chronic illness.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends over the years suggest one at one point or another. I have tried many of them, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with M.E. then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with M.E., if something truly worked we would KNOW about it a long time before you get to hear of it. 
If after reading that, you still want to suggest a cure, then do it, preferably in writing to help me remember what you’re on about, but don’t expect me to dash out and try it. If I haven’t had it suggested before, I’ll take what you said and research it myself or discuss it with my GP. I cannot risk compromising my fragile health for fear of further relapse or to please you. Despite popular “New Age” thinking - I did not choose to have this illness. It is not because I was bad in a past life, or have Mother or Father issues or whatever… I have issues like everyone else including you and I am not punishing myself for not “working” through them. This is not “karma”! I have a neurological illness. It could just as easily be you here in my shoes. Please do not insult or hurt me further with such suggestions! I am learning to be comfortable in my spiritual self.
Please understand that getting better from an illness like this can be very slow. People with M.E. have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out. This illness is known typically to go on for many years. There is nothing I can do that I’m not already doing. I do not choose to be this sick! I accept that I am and I’m doing my best to exist with it…
I depend on you - people who are not sick - for many things.
I am so grateful for what you do for me. I wish I didn’t have to depend on you and I never want to be a burden. I worry about that. But most importantly, I need you to remember I am an M.E. sufferer and try to understand me, even if you don’t “get” the implications this illness has on my life and interactions with you and everything around me. Thank-you for being my friend. This letter is intended to help…it comes from my heart.
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I thank you for this excellent article, whoever wrote it.
I am new here, so I am trying to find out, what is wrong with me. All tests proved to be negative and doctors are scratching their heads, what to do.
I must first find out the difference between ME/CFS/FM, is it one, two or the combination of all three, that makes me so tired? I had a mild stroke 14 months ago, it didn’t effect me much - just a mild numbness in my left foot. As the time went by, my legs started to be very heavy, tingling/ticklish sensation. I started to have headache and my overall equilibrium has been damaged. I can walk, with caution and I am extremely tired, even after a long sleep. My sleeping is good, I can sleep 8-10 hours a day.
Can anybody here, write to me, if his/her symptoms have any resemblance to mine?
Regards, Karl from Brisbane…
Hi Karl,
The only thing you can do is educate yourself first and then your GP if needed, if you are getting nowhere! See on this site under Medical Contacts for possible “CFS” friendly Physicians - there is one there in NSW who offers email & phone consults (non-medicare). CFS and classic M.E. are NOT the same thing, despite all the hype. The term ME/CFS/FM is very broad spectrum & misleading to people newly affected, unfortunately due to the psychiatric profession playing hardball and colouring the public/medical perception of the W.H.O.’s 1969 classification ICD10-G93.3 of benign Myalgic Encephalomyelitis. I suggest you take the time to read A Hummingbirds Guide to M.E. very carefully, you will find many answers there. Stroke-like episodes ARE found in M.E. sufferers. I have also had several TIA type attacks. It’s great that you are recovering from your Stroke so well; is your fatigue “feeling” tiredness or extreme weakness? These two can be confusing sensations! I read Strokes can cause these sensations and they could be symptomatic of a multitude of other nasties, including MS. M.E. certainly covers fatigue and fibro symptoms, whereas the other deliberately watered-down labels and newly invented criteria don’t include the serious neurological symptoms of classic, age old M.E. Anyone can feel chronically fatigued after say, having Glandular Fever (Ebstein Barr Virus) or having a flu or having continual insomnia/stress etc. so it is a very vague term to use and makes it sound like you are just very, very, tired. Intuition tells you it’s more than that usually! Insurance companies & Governments love the modern “ME/CFS/FM” invented term as they can then skip out on help/payments as it is mainly perceived to be of a psychiatric nature - thus misdiagnosed often as “depression”, rendering it mainly null and void… it’s a complicated global scandal. Check out The Nightingale Foundation, Dr. Byron Hyde seems to have a handle on what’s going on. What does your Neurologist and GP think? Have you had a SPECT scan or just MRI at time of the stroke?
You can contact me via email if you wish to respond to my medical enquiries privately at: zarynity@yahoo.com
Please note, I am not a Doctor, just an interested fellow sufferer and advocate.
Blessings, Zarii
Perfectly put!! Wish I were more able and less foggy to find the words to express my admiration for being able to articulate it all so precisely. It’s a relief to read how I feel when mostly I can’t realise it let alone communicate it. Thanks Zarynity!
Oh, hello Matron! Thanx 4 visiting humble site. Blessings to you & the Headmaster.