October 13, 2012

“Letter to the Normals”

Posted in ME/CFS tagged , , , at 11:46 am by Reva

I found this letter I wrote to no one in particular when I first received my diagnosis, probably circa 2005.  From memory I adapted it from one a friend wrote (sorry I don’t remember who).  Reading through it now I had to stop myself from editing it.  I was probably a little angry at the time I wrote it but it was nice reading it and seeing how much I’ve learnt about myself and the condition. Disclaimer:  I know there are some errors in some of the theory within, some weren’t necessarily errors at the time (but slowly we’re learning more and things change) and others errors made due to my frustration and probably limitations in my own research at the time.  It does not necessarilly portray my feelings now.

To those without CFS,

Having CFS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about CFS and its effects, and of those that think they know many are actually misinformed. 

In the spirit of informing those who wish to understand:
These are the things that I would like you to understand about me before you judge me.   I hope that I do not come across as being negative, or down, or depressed.  I fully accept the situation I am in, and while I hope that it doesn’t last forever, I know there is a possibility that it will and I am learning ways to cope with the syndrome.  The way I see it, I’m one of the lucky ones.  So far I have continued to work full time.  I can get out of bed in the morning.  I can watch a movie, read a book, and even take a short walk most days.  Just because I can do these things doesn’t mean it’s easy – on weekdays I often find I’ve walked to work before I realise how sick I am.  By the time I’m there it is just easier to keep on going than to go through the rigmarole of getting home, getting doctors certificates and having to catch up on today’s work tomorrow.  I am lucky – this condition will not destroy me but make me stronger.  Please also realise that if I do come across as feeling sorry for myself, I in fact don’t.  Instead I feel proud of myself for coming so far in spite of this condition.

Chronic fatigue syndrome is more than just fatigue – it is a huge myriad of symptoms including insomnia, metabolic changes, neurological disturbances, hormonal changes, muscle pain, nausea, inability to concentrate, memory loss, heart palpitations, infections, numbness, weight gain or loss.

Chronic fatigue syndrome may not be life threatening or as serious as illnesses such as cancer, multiple sclerosis and aids, but sufferers can be as impaired as those who are undergoing chemotherapy for cancer – with some becoming permanently confined to their bed for years. Many sufferers lose their jobs, money, friends and livelihood – and on top of that have to suffer the indignity of being told they are “lazy”, “crazy”, “depressed”, “bludgers” or that their problems are “all in the mind” – despite the fact that research is consistently showing otherwise.

Currently, research suggests that chronic fatigue syndrome is caused by genetic mutations that impair the central nervous system’s ability to adapt to stressful situations. Other research suggests that chronic fatigue syndrome may be the result of brain injuries inflicted during the initial stages of glandular fever. It is believed that parts of the brain that control perception of fatigue and pain get damaged during the acute infection phase of glandular fever – so that it is literally like a “hit and run” accident on the brain.

However despite these fantastic breakthroughs in CFS research – the exact cause is still unknown, and at the present time there is no cure, and no unified treatment for sufferers.

The less people know about chronic fatigue syndrome – the more stigma surrounds the illness, and the more likely it is that sufferers will be mistreated by doctors and alternative practitioners…as well as misunderstood by friends and family.
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time, I’d still like to hear you talk about yours, too.  

Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!” I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour.
And just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today.
Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on, it applies to everything. That’s what chronic pain does to you.

With a lot of diseases you’re either paralysed, or you can move. With this one, it gets more confusing.
It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute.

Please understand that CFS is variable. Some sufferers may be able to walk to the park and back, while someone else might have trouble getting to the next room. These things may also vary from day to day for me personally.
Please don’t attack me when I’m ill by saying, “But you did it before!” or “Oh, come on, you just have to put your mind to it!” If you want me to do something, then ask if I can.
In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If I was able to be there I would be, believe me. And don’t stop including me because I didn’t join in last time – sometimes just being thought of is enough to make my day.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse.

Telling me that I need to exercise, or do some things to “get my mind off of it”, may frustrate me to tears, and is not correct. If I was capable of doing things, I would do them. I am working with my doctors and I am doing the things that I need to be doing.

Another statement that hurts is, “You just need to push yourself more, exercise harder…” In many cases, physical exertion can do far more damage than good and can result in recovery time numbering days or weeks or months from a single activity.

 
Also, CFS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is NOT created by depression.

Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it RIGHT now. It can’t be put off or forgotten just because I’m somewhere, or I’m right in the middle of doing something. CFS does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, 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 suggest one at one point or another. At first I tried them all, 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 CFS then we’d know about it. There is worldwide networking and support groups across the world for CFS… if something worked, we would KNOW.

If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and discuss it with my doctor.

In many ways I depend on you – people who are not sick – I need you to visit me when I am too sick to go out… Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too … you’re my link to the outside world… if you don’t come to visit me then I might not get to see you.

… and, as much as it’s possible, I need you to understand me. 

For those of you still with me at this stage, Thank You.  I appreciate you taking the time to read this and gaining a greater knowledge and understanding of CFS.  Please DON’T feel sorry for me.  DON’T treat me differently for what you now know.  But please accept, like I do, that this is something that won’t just go away, that it’s NOT a mental illness but a real condition that unfortunately very little is known about.

Thank you,

Nicole

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