One thing I have always endeavoured to do throughout my life is to see things from another point of view. I don't always succeed, but I try. In keeping with my naturally optimistic nature, I also try to see the good side of things. Even things that are normally perceived as 'bad' things. I like to turn things on their head. I'm just contrary like that.
This has led me to wonder "What are the good things that my disease has given me?" The bad things are obvious. Pain, suffering, loss of income, friends, a social life, blah blah blah. This however, is a trickier question.
Interestingly (at least, to me), there are quite a few positives.
1. Getting to see more of my husband.
Not like that people, minds out of the gutters!!. I mean spend more time with him. Prior to my illness I saw my husband only on weekends, really. He starts work at stupidly early o'clock in the morning (otherwise known as 5a.m.). This was the equivalent of the middle of the night to me, as I worked evening shift (1 - 9p.m.) at a pathology lab. He finished work just as I was starting work, so he was usually in bed by the time I came home. People would ask me how he was and I honestly didn't know.
When I stopped working I was a little nervous that spending so much time in each others pockets might be a bad thing. We might drive each other nuts. We joked that the only reason we had been together so long was because we never saw each other. A little bit of me wondered if that was true. However that worry was for nothing because it has actually been really great! We have been able know each other better, and I have found that I really enjoy it when we spend time together.
2. Teaching me to count my blessings
Something that I have learned through being sick is that no matter how bad things get, it could be worse. 25% of people with M.E. are affected so severely that the are completely bed bound. Some can be fed only by tube and cannot tolerate any light, sound, smells, or even touch. People have died because they were not able to take care of themselves.
Alot of M.E. patients have no friends or family who understand them. These people are often accused of not trying hard enough, or malingering. They are blamed for their illness and no help is offered. Many lose everything and everyone. Or don't have a good doctor, or even any care at all.
I feel extremely lucky that I have such an understanding husband, he has been wonderful. Most of my family and close friends understand my situation. Things might be hard, but I am in much better shape than some.
3. New found appreciation of Health.
Most of us take our health for granted, which is understandable. Why worry about something if you don't have to, right? I was never concerned about my health, not even after it started to deteriorate. I didn't really care much what I ate or drank (not that I was too unhealthy). I used any cleaning products and beauty products I liked, never even vaguely considering what kind of chemicals they contained.. I wasn't one of those people with sensitive skin, or allergies. I didn't even have hay fever.
Oh boy, has that changed!! A few years ago, before I stopped working, I gave away most of my perfumes to co-workers. I just can't tolerate them anymore, they make me feel too sick. The relatively mild ones that I kept can only be worn on a good day. Even then, it is pushing my luck. I do most of my cleaning (when I'm well enough to clean) with bicarb soda and vinegar. I can only use the mildest, everything-free face products. No fancy anti-aging stuff for me!!
So now I have to watch the products that I use, what I eat and what I drink. But the one that really annoys me the most is that I was to watch what I do, the energy I use, even how long I stay upright ( I have dreadful POTS - Postural orthostatic tachycardia syndrome, a common problem for people with M.E.). This kind of restriction on the way you live your life is enormously frustrating.
The up side is that when you have one of those beautiful, wonderful good days, it is absolute heaven. You can actually do some cleaning, cook some interesting food, maybe even go out of the house!! Believe me, I don't take my health for grated anymore, I cherish every scrap.
4. Seeing the better side of human nature.
Now anybody with M.E. will have horror stories about doctors, friends and family treating them appallingly due to their illness. It's true, we do get to see some of the worst of human nature, but their is also a flip-side to this.
Despite what some people will say, there are good doctors out there. Ones that understand the illness and understand the devastating impact it can have on you. When you meet one of these people light shines from above, and angels sing. Well, maybe they don't, but it feels like they should. Most doctors who are in the business of treating people with M.E. are genuinely good people. We know this because if they weren't, they wouldn't take on such a thankless a task. Treating these patients is very difficult, there is no real treatment for this disease yet. You can only really treat the symptoms. Doctors want to make their patients better, and with this disease that is not always possible. It must be very frustrating for them.
5. Seeing the better side of human nature.
It is a similar case with those of your friends and family who actually get it. When someone shows you that they have done their research, and are trying to understand and help, it is truly wonderful. Yay!! They don't think I am a lunatic, or a malingerer, or drama queen, or antisocial. When these people actually understand that there are some things that you just can't do, it's great!!. They don't blame you for it, or try to talk you into things that you shouldn't do (like drink alcohol, or overexert yourself). Truly caring people are a wonder to meet.
Having said this, I do know that understand this disease is a very hard ask. The media has downplayed this it for decades. Names like 'Chronic fatigue syndrome' or, even worse 'Yuppie Flu' really sound innocuous. Like you just need a little nap, or something. I myself used to think about this disease in that way (something I feel very guilty about, and yes, karma is a bitch!!). There is something about the name Chronic fatigue syndrome which makes us think we know what it is, when we don't actually know anything about it.
6. Seeing the better side of human nature
Joining online support groups and researching online has introduced me to, and made me aware of, some truly wonderful people. There are people who extremely sick, but have a huge impact on the M.E. community. People like Jodi from the Hummingbird's website (http://www.hfme.org/). She is completely bed bound but has amassed a huge amount of information! Or Cort Johnson of the Phoenix Rising website (http://www.aboutmecfs.org/index.aspx), who has one of the best and most balanced sites for up to date research information.
There are reporters, who noticed that governments weren't doing enough to help, and tried to spread the word. Educating people is very important when it comes to M.E., so they have played a very important part. We need healthy advocates to ask the hard questions and people like Mindy Kitei (http://www.cfscentral.com/) and Hillary Johnson (http://oslersweb.com/index.htm) have been doing this for years.
And there are the wonderful people from support groups who have shared their knowledge and comfort those who need it. People like my friend Aylwin, who sadly is no longer with us. So generous of her precious energy and beautiful spirit, to help those in need of advice and understanding. http://www.hfme.org/aylwincatchpolememorial.htm
Countless others could join those I have listed here. I have been extremely lucky in my life to have known some truly wonderful people. Many of those have been after I became so sick that working was impossible. I am housebound most of the time, but these wonderful people have helped ease my loneliness. It has been a privilege to know them.
take care, ness
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