Life like a stiff corpse or what it means if you can’t change some things.

I was answering to a topic for NaNoWriMo, where one girl wanted to know what it feels like to live with arthritis, when I caught up reading different comments left there. Most of them began the same way – I have been sick for 1-5 years and can tell you how life-changing this health problem can be and how much they now have to suffer. I lost the taste to respond, because I keep wishing to type “welcome to my little world”, but it seems unfair.

To begin with, how do you explain what it is like to live with this health problem? I can fall in the usual rant and say it depends on person and what problems they have exactly. That some have stiffness more and others experience serious excruciating pains.

Then I find myself pointing out that it depends only on one thing –  you learn to live with it. That’s only half the truth, I’m afraid. The real truth is, you live with it and go with the flow.

I’ve had it since birth. I must say I don’t understand those, who have arthritis diagnosed later in their life. The amount of complaining they do is fascinating – people feel sorry for themselves and others try making their life as comfortable as possible. I’m sorry – why? Perhaps it’s envy talking in me, but those, who’ve suffered it since birth even say they have the same thing, why are they stared down as if it was some competition and you just tried to get part of their 5-minute fame? The only indicator to hint I have this condition is often my limping every now and then. Otherwise most people don’t even know. That’s how you deal with it.

If you have it, you get pains. New folk loves to count the days they have had the pains per moth or week or how they spent 3 months at home, lazing on the couch with nothing more than a TV remote in their hands. I count the days I didn’t feel stiff joints or the pain in my limbs. Mostly I forget the last one before I get the new day. Stop counting them. It doesn’t help anything but your depression.

They count time they had to spend aside from work or school. I went at third grade and spent in the first and second grade only about 2 weeks together. The rest of the time I was in hospital, visited by mom every second day. Some had it worse, I was lucky – we lived in the same county. The following years weren’t much better. I think it wasn’t before I went to high school that I got out of that regime.

You get fat if you get arthritis. This claim I would LOVE to take under closer look! You do NOT get fat if you get arthritis. Also isn’t true that only fat people have it. I even hear it from my doctor. Before I got hormone treatment on arthritis, I weighed normal and still had it. Even more than I have now. My sister is underweight and she still has it. If you are afraid of this possibility, then change your workout regime – recommended by all doctors. If you look close, you realize that we do pretty much the same things, just slightly differently so we wouldn’t put that much pressure on our joints. It is helping factor we must take in consideration, but it is ludicrous to blame the entire body weight on it. I only got out of the regime, because I gained my weight and got to my biological weight.

Crying your heart out. Yes, we all do it. Unfortunately this is the part we all go through. I’ve missed most holidays that ask for walking long in dark or other activities. I didn’t get to run or dance, I had to fight for my career choices and often lost. Comes with the territory. There are so many things we can’t do because of arthritis. Anything that involves standing up 8 hours a day or running or heavy stress. Yet those, who can, still do them. I couldn’t  be a cook, because I can’t stand on my feet more than an hour before I get so strong pains I need to pause and sit. Didn’t stop me from digesting through cookbooks and testing out the methods they use.

Living with arthritis is often about compromises and adjusting your life to fit with the condition. There are things you can’t avoid, like going to work each morning, but other things you can adjust to your life according to your needs.

Can’t bend over, because your back is too stiff? I learned how to pick up things with my toes. At first brother laughed over it, but now bigger things he helps to pick up himself, because he has come to realize that I really can’t bend on some days. Most days I can’t squat. If my back allows, I bend over from the hip and still get things done. Learning how to bend your body like a swish knife is essential. And it is no excuse to live in dusty house and leave duties undone and family untended. You have seven days a week to do your homework – if you can’t lift vacuum cleaner on Monday, do it when you can. If you know you have stiff joints in rainy season, plan it so you can stay home or take part of things you can do.

Because of this, the only garden plants we have are all planted slightly higher than usual or so that I can sit and work with them like that. “Granny garden” like some hip teenager told me. Probably, but what can I do? At least I don’t have to adjust to “granny lifestyle” like they will, when they hit their 50s.

Can’t get up in the morning? I have serious problem getting up in the mornings. To me it is essential that the rooms are warm or else I know how corpses feel in their coffins. On worst months I must have someone pulling me up from the bed. I always choose my sleeping places so that I have some very heavy cupboard next to me so I can push myself up if necessary. That’s the worst part in the mornings. In better months it’s just stiff legs and slight hip pain. I always get up half an hour earlier than the rest of the family. I usually don’t get anything notable done, but I just spend this time to get myself going. Imagine yourself a clock smith trying to push Big Ben in action with very tiny lever. That’s how it pretty much feels like.

Can’t dance? Of course you can! Perhaps you won’t do trampoline in the nightclub, but you can still dance. Plus there is nothing wrong in an hour lesson per week to learn classic dances. I couldn’t do it for years, so instead I took up second best thing – singing. Gave me just as good lung training as any strong physical sports would. Plus you learn how to yell so everyone in the room hears you and then continue normally without sounding like a cracked CD.

Must take medicaments every day? Put a reminder on your phone. I’m bad taking bills, but this keeps me on track at least most of the days.

I often envied friends that could drink while I couldn’t. Little truth they didn’t know – most of meds reacted with alcohol and would have eaten through my liver much faster space than without it. I chose without it, because the pain in your stomach can be much harder to bear and I already had that experience.

Good sides? There has to be something good about it too, right? Well, you learn little details about medicating yourself that take others years to find out, like what does it really mean if they tell you have to take medications 3 times a day (that it is about dividing the bills in 24 hours, not the hours you’re awake). You know pretty well your own body, because you know far more about anatomy than you would care to know. Including the little ends of muscles you never knew could be painful without the rest of the muscle hurting. You can write medical novels without much research, with a lot insight from patient’s POV. You learn to live by the flow, you know schedules can change. You learn to appreciate things you never knew existed. Including the guy, who was stuck in the wheelchair and spent most of his day telling you stories of grandchildren he hadn’t seen in years.

It really is about choices. So what if your new diagnoses left you crying in your pillow and forces you change the way you saw your future? It angers me to see how new ones test their family’s support. Unless you are really crippled, pack the act and learn how to live with it. Some of us have lived with it every single day of our lives and you wouldn’t even know it. It isn’t death sentence, God could have given you something far worse and even those people still live to their fullest. It’s just new to you and no, it never gets easier. Perhaps just slightly more demanding. But you don’t have to live it out on others or feel that with this you have earned the right to turn them in your slaves.  You need help – you ask for it, but if you can do it yourself, do it!

I’ll now go and respond to that forum post. It’s nice that the ones, who have it for 5 years love to share their stories, I guess I should give the insight what it feels like if you never had a day without it.

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