I’m going to try and use this month’s prompts from Sheryl at A Chronic Voice, to express myself. I often gloss over a lot of the effects of my illness, in particular after I was accused of moaning too much. I’ll explain more as we go along.

Repeating

I use an app on my phone which prompts me to say how I feel throughout the day. It’s called Daylio and you can set it to reflect the things that affect your life. I find myself repeating things over and over and my most common moods and feelings are ‘overwhelmed’, ‘stressed’ and ‘pain.’ It pops up, and I click to let it know how I’m feeling, a constant reminder to let me know just how awful it all is. The idea was to keep a record so I could be more honest when I visit the consultant, it’s easy to gloss over the awful.

However, always the optimist, I tried to inject some positivity to my days. I added a daily prompt to think of something I’m grateful for. There is always something, whether it’s just a nice cup of coffee made by my daughter, or a gift in the post that I wasn’t expecting. It has made a difference to my monthly chart by this little repeating high each day. It’s not huge things on this mountain I’m climbing, but the little spurts of joy I have to grip onto.

Wondering

I’m always wondering whether all the drugs I take are helping me or not. The easy way to find out is to miss a couple, but this just proves that I can’t do without them.

I also wonder if people actually understand at all what I’m going through. My family seem to think that I am getting better, when I don’t actually feel that at all. Maybe they are in more denial than I am? I find that connecting and speaking to others who are chronically ill makes me feel less alone in my suffering. It’s hard to talk about suffering, no-one really wants to hear how difficult life is all the time. No-one really wants to know because they don’t know how to react and there is only so much sympathy they can give. It’s not sympathy I want though, in fact it makes me squirm a little. What I would really like is empathy and understanding.

In reality, though, no-one understands the suffering of another person, it’s all relative. If you’d have said to me four years ago, how would you feel if you were in pain every day and unable to walk, I’d have had no idea. It’s no wonder that no-one else understands.

Turning

I have pondered over this one quite a bit. I could say how I’m turning into a statue, but I really hate that term. Stiff person syndrome is often called Tin Man syndrome because it’s sufferers turn stiff, but this seems to be a different experience for those with the condition. I have a particular form of the condition, progressive encephalomyelitis with rigidity and myoclonus. I’ll explain each term in turn;

• Progressive: it will get worse
• enchephalomyelitis – swelling on the brain and/or spinal cord
• rigidity – becoming stiff or ‘rigid’
• Myoclonus – jerking, spasms, involuntary muscle contractions

I’m not turning into a statue, but each part of me can become stiff, either for a little while or permanently. Medication can help, but there are certain muscles that have been stiff since my first attack 3 1/2 years ago and they haven’t improved. The IVIG has helped with the myoclonus, I rarely jerk now, which makes it a little more comfortable being around others.

Getting

The hardest part is getting people to understand. When the condition is so rare not even the doctors understand what is happening to me, how am I supposed to explain it to others. I’m told constantly by family and friends that I look like I’m getting better, when I know I am getting worse. I can only assume that I am getting better at dealing with it all.

Well, actually, I know I am getting better with dealing with it all. I used to panic when the pain in my chest got so bad I could barely breath. Now I just relax and deal with it, I know it passes eventually. I would panic when my body would go into completely stiff spasms and render me paralysed, now I just get on with it. It hurts, but it doesn’t last forever. I used to freak out at the fact that I was constantly in pain and it just wouldn’t stop. Now I just accept it and carry on. And sometimes I carry on a bit too much and end up getting myself into such a state that all I can do is nothing at all. When life throws this kinds of crap at you, all you can do is get on with it.

Desiring

What am I desiring? Well, it could be a cure, a medicine that works and makes me feel good again. I could desire some real understanding from someone else, not sympathy, but empathy and the right kind of care.

Or maybe I could desire the ability to walk again and get on with my life like before, to run around with my kids, to drive my car, to go out alone, to go back in time and stop this condition from taking everything away from me.

What if I could keep it simple and desire a lovely holiday with my family, the ability to sit on the beach and enjoy some fun with my children. It’s the simple things that keep me going.

Or an evening at home when everyone is in a good mood and chatting and the television gets drowned out. And there is laughter and joy and for a while the pain really doesn’t matter at all.

Linking up to Sheryl from A Chronic Voice, for June’s Link Up Party

You can read my May Prompts Here