Chronic Illness – What Am I Looking For?

Each month I join in with Sheryl from A Chronic voice with her writing prompts. This months prompts are:

1. LOOKING
2. PLAYING
3. JOINING
4. INVIGORATING
5. DITCHING

Looking

In just a few days I’ll be having large Magnetic Resonance Imaging machinery taking a look inside my head and neck. Oh, I hate the MRI machines. The first one I had when I was admitted to hospital four years ago. They didn’t know why suddenly I could no longer walk or move my arms so they sent me down. I had no idea what to expect, I was already terrified as I didn’t know what was happening to me. One day I was fairly okay, the next I was paralyzed and I had no idea why. They took me down to the MRI and put me on the bed. They fastened my head down in a casing and put me in the machine. My nose was just inches from the top and I panicked. In fact I panicked so bad they had to take me out.

The next day I was given a sedative before they tried again. I got through it, but I was in there for an hour and fifty minutes. It was my worst nightmare and I hoped that I’d never have to go through that again. A wuss I know, but I am claustrophobic and I don’t even like small toilet cubicles. To me, It was on par with being buried alive.

I’m dreading Wednesday, but I’m more prepared now. I already have my sedatives to hand. I will take one in the morning and another as I arrive at the hospital. Thankfully, my MRI is real early so I don’t have to spend the whole day worrying about it. I’ve been practicing breathing and mindfulness techniques to get me through. I can do this, even though I’m not looking forward to it.

Playing

Playing is associated with fun stuff, but at the moment, I don’t feel like life is much fun. Everything is playing with my emotions to the extreme. I feel like I can’t cope with the pain, the struggle of day to day life and dealing with my body and what it keeps throwing at me.

But, I do have kids and sometimes the best times are playing games with them. I can’t do the things I used to, but we can still get out a board game or a card game to play. It does help to take my mind off things looking forward to playing games with my little ones.

Many years ago I had a pc game on a CD which I bought from the cheap basket at PC World. It was called Mahjong Four Winds. I have long lost the CD and despite searching I’ve never found anything that played like it. I loved that game so much but nothing compared. Then my eldest son came to me with a game called Mahjong Souls. It’s not identical, some of the rules are different and the cards are not quite the same. But the graphics are very similar and the game play the same. It has lots of extra features where you can play against other, real people, and win prizes. You can also choose who you play as. I love it, and it’s a great way of passing time.

Joining

I don’t know if you can call this joining but I couldn’t think of anything else to put in this prompt. This week I am joining a therapist to talk about my feeling about my illness and life in general. I’ve been waiting a long time to do this, I’ve spent so much time thinking I can do this alone. But I can’t, and I know that now. So, I’ll be joining up with someone else to help me with the mental issues involved in dealing with daily pain and disability. I’m looking forward to coping with life better in the future.

Invigorating

This is another area I am having difficulty with. I find it hard to find anything in life invigorating at the moment. I know, I’m all doom and gloom. It’s not good for me though. I know that the brain and body are connected, the sadder I feel the more pain I feel. It’s the same for everyone.

Maybe I could look for something more invigorating. I can’t do much physically so I could focus on something more stimulating for my brain. Each year I try to learn something new. Last year I did a poetry course, I’m still looking for something I can learn this year.

Ditching

I’m going to be ditching some bad habits. Something that is never easy to do. I remember when I gave up smoking, some fifteen years ago, and I thought that was really hard, but now I know it was one of the best things I could have done. So what else can I ditch?

Unhealthy food comes to mind. I find that when I cut out certain foods I feel better. I really need to get more of a grip on this. I’m overweight, but it’s hard to lose weight when you are immobile, and I barely eat a full meal. I’ve started having trouble swallowing a lot of food lately, another new symptom perhaps? Maybe something the MRI will shed a light on.

So, ditching crap food is a good start, and also the habit I have of procrastinating. Now, I can’t do much, but I can make others, or try to make others do things. I’ve been so rubbish at this. So, the bathroom needs painting, I can’t do it myself, but I don’t ask for help to do it, or I don’t insist that it should be done. I’m going to ditch procrastination, but not for me, for my whole family. Even the kids are no longer going to be sitting around doing nothing all day. It’s no good for anyone. They probably won’t like it, and I’m going to find it hard, but I think we will all benefit in the end.

Final Words

Physically, things are getting harder for me. I’m falling or stumbling more often. I’m having to use my wheelchair more inside the house. I’m not sleeping well at night, which means I tend to pass out a lot during the daytime. I’ve had trouble adjusting to my new medications but since I stopped the IVIG I am taking so much more. I’ve also noticed a lot more symptoms that have crept up on me. Life isn’t so good right now, but I will keep fighting and hopefully I can turn things around and make life better for everyone. This year I should be getting my lift and wet room fitted in my home. It will be so much help, so that’s something I’m looking forward to.

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