Being Sick Sucks Rant

TiredI want to write about being sick, just to get it off my chest, out of my head. About 18 years and some ago, I became very ill. I was in bed with a Mono like flu for about 6 weeks, but it wasn’t Mono, they didn’t really know what it was, they were ‘baffled’. This kind of thing had happened to me before when I was in Grade 7 and in Grade 9. At these times, my white blood cells went a little crazy, overloaded my system, crowding out all the red blood cells, leukemia cells being present as well. This left me bedridden both times with extreme fatigue and flue symptoms, for about 6 months each time, followed by a slow 6 month additional recovery. Then it went away. At least till 1994. Then it came back, but this time in a different form.

Again I am extremely fatigued, have flue symptoms (fever, swollen glands, aching bones etc.), and other ‘weird’ symptoms  like feeling spaced out, disassociated, being off balance a lot, dropping things a lot and on and on. My sleep is very poor, very light and interrupted. They told me my beta waves were disturbing my alpha waves in my brain during sleep or some such thing, so I never feel I’ve actually slept, more like a perpetual doze. But, again, they don’t really know what’s wrong. They say, ‘Oh, it’s chronic fatigue syndrome, or ME, or Environmental Illness, or this or that but they don’t know really what it is, what causes it, or how to make it go away. I was in university at the time I got sick and ended up having to drop out of my Master’s program, a big blow.

I am very limited in what I can do. I used to be extremely active , hyper, one could say, basically working all day, partying all night, sports, recreation. I hiked, canoed, biked, danced, swam, skated, snow-shoed, skied etc. etc. I spent as much time having fun with my friends as I could, worked hard and played hard. Since I’ve been sick this has all ended, my life as I knew it has ended. I can’t dance (my favorite activity) because I’ll be bedridden for 1 week after, recovering for 1 month after. Ditto for swimming (3 weeks in bed – it’s the worst for some reason), biking etc. I used to see my friends and go out every night, now I can do that about once a week, twice if I’m feeling really good. I’m restricted to activities that don’t utterly drain me though, like watching a movie, going out to dinner, maybe a game of pool. A couple hours is all I can spend out without getting tired and ‘crashing’ after.Tired

‘Crashing’ is like being in a semi-coma, aware, but not really able to move, even turning over in bed becomes a monumental effort, and making it to the bathroom a LOTR quest. I HATE being limited. It drives me close to the point of insanity sometimes. I am a physical person who can no longer BE physical. I miss things so much, I miss being able to run, I miss playing basketball and soccer, I miss going for 4-5 hour hikes, I miss my karate, I miss my friends. A lot of people don’t understand. Some of my friends don’t quite get why I can’t do more stuff. Sometimes (more than I should) I say ‘Fuck it’ and I go out and do stuff that I know I will pay for later. Last summer I got in a canoe race that was so fun but landed me in bed for 2 weeks. One time I went for a hike that lasted all day. It landed me in bed for a month, took me about 4 months more to recover all the way. But what am I supposed to do, lay down and die, never do any of the things I love? I have lost my scholastic opportunities, my career opportunities, my social life. I feel entitled to the occasional fling, a late night out, a snowball fight. So, I suffer later for it, curse the fact I’m stuck living this half-life, get depressed, get angry, get overwhelmingly frustrated. I have wanted to kill myself because of this, though that was mostly between the second year I had it (when I realized it was just not ‘going to go away or get better’) until about 14 years ago.

Since then I’ve been getting counselling to help me cope and I’m trying to work real hard to control it, stabilize it, accept it. I’m not very good at that, it is taking me a long time, I keep fighting, keep pushing my body hoping to make it submit to what I WANT it to do, not what it’s going to do, but it doesn’t work, it just makes it worse. I also happen to be an innately energetic person with a lot of inner hyper anxiety that I can not stop from coming out, so I get overexcited easily, high feeling, laugh and jabber and jump up out of my seat, pace etc. and these natural habits of mine actually really tire me out, but they are so hard wired into me that it’s a constant battle to be calm, so that I don’t overtire myself with just being me. People see me act like that and think ‘well, she’s not sick, she seems energetic and stuff to me’, but they don’t see that this is only for the 20% of the time I’m up and about and feeling OK, and that when no-ones around I’m dragging my ass, and that I pay for it later when I can’t get out of my house for days. The other reason I’m often hyper energetic acting when I’m in public is because I’m just so darned excited to be OUT, with people, doing things, or I’m in a state of overstimulated exhaustion. I have an hyper-reactive nervous system and it often freaks out, then overloads, leaving me BURNT!

One of the worst things about this illness is, of course, not knowing how to get rid of it and also not really knowing what causes it. And trying to explain it to people. They say ‘oh, what’s wrong with you’ and I say, “oh, the doctor’s say I have CFS/ME/EI” and there like, “ya, whatever”, cause most people don’t know what it is, what it’s all about, it’s too complicated and tiring to explain and even when I try I often get, “oh, well, it’s all in your head”, or “that’s not real, I don’t ‘believe’ in that”, or “oh, you just need to buck up, get out more”. So mostly I just stopped bothering to try to explain it. Some people seem to think it’s a convenient excuse to do nothing, what they don’t understand is that nothing doesn’t mean that, ya, I can’t scrub the house down or work full time, but that I also can’t keep groceries in my house so often go without food, can’t easily get my housework done, so I am ALWAYS struggling to do the wash and clean the house, so I don’t go around in dirty clothes and live in a pig-sty, can’t be with my friends and do any of the things I love, can’t achieve any of my goals or live independently. It means I get to watch the rest of the world have fun while life passes me by, it means constant frustration, limits, and feeling like shit 80% of the time. So, that’s my little spiel on being sick, yes, I am wallowing in self pity….so what, I’m allowed to now and then. I will write on happy lovely things at a later date. PS Ferrets are happy lovely things.

Current mood: GRIM.

Current music: just the same old tune playing in my head.

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3 comments on “Being Sick Sucks Rant

  1. I wanted to hit the like button but how can I like this? You have written a fantastic account of what it is like when at our worst and I like that you have the courage to do that. I am trying to do the same it really does help to get it our of your head and into the open where friends & family can really see and feel what happens to us when we take the risk of doing the things that makes us happy and keep our mood up, when we know full well that we are going to suffer later. But in my head I believe that although we are going to pay later, do it anyway, I would much rather have had the fun and taken away the good memories than not do it at all.
    Keep your chin up girl, keep battling because it’s the little challenges that keep us going when we have the knowledge that we succeed in those and perhaps one day we can manage a little more.
    Faye

    • desdemond says:

      Hi, thanks so much for your comment. The like button is right under the post after the share buttons. I too prefer to have fun while i’m able, even though i suffer the consequences. I used do do this more , but recently I find if i pace myself a bit better the consequences are more tolerable I.E. down for 1 day instead of three. When I really overdo it and i end up in bed for 3 days or more, I become very depressed, and i just can’t handle it. It’s so hard to keep a fine balance.

      • Same here, I’m still learning my limitations. My head is off on lots of wild crazy ideas and my body is saying get real I’m not doing that!
        So I resort to take each day as it comes, what will be will be, and if I have to be laid up for a few days so be it. I have come to the conclusion that just when you think you’ve found a good balance the illness throws another curve ball.

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