Edward Allen

Dear All,

It is rare that I put two bulletins out in a week, I know, but then it is rare that I spend 2 months with an agonisingly painful illness. Some of the reason I write this blog is for my own sanity, to somehow stay sane in amidst all that is going on around me, so please excuse me but I just have to write more this week.

I have never been through an experience like this, I’ve been ill many times sometimes seriously, but with those illnesses there were moments when they weren’t there and you could feel alive and normal but with this one those moments almost never come; Reactive Arthritis is a horrible illness.

I feel desperately vulnerable, if it was just in my body then fine but this illness seems to be affecting my emotions too. The unceasing pain day after day, the awareness that when you wake in the morning the pain will hit as it always does when you get up. Every night I go to bed with an inflamed spine, and it hurts. It is a pain that is almost ethereal, it isn’t specifically in any place but leaves my whole body strained. Every time the pain hits hard, my pulse quickens and my body strains. It is not just painful but stressful too, my body almost never feels at peace.

The science behind all of this is complicated, it is a disease that few have ever heard of and people don’t really know what to say. I’m not diseased, but I have a disease, and hopefully it will fully go away.

When I get angry with this disease, I chose to ignore it and do all the things I used to do. I can still move most of my joints, so I pretend I’m completely fine. But each joint I use, by evening time is hurting, and not just the joints but the tendons too. I can’t fight, yet I can’t be defeated by it either.

All the time I’m wondering, is this my fault? Is this caused by emotions not right, hurts not dealt with, am I bringing this frightful thing upon myself. I know that I have to sort out emotional stuff, look again at that area and do painful pruning, I’ve ended some friendships recently and changed how I relate to some other people, it is something I can do.

I’m tired, so tired, yet the insomnia that I’m battling is making dealing with the tiredness so hard.

And I feel lonely too, I wish I had a darling wife to help me through this.

But I don’t. But I cling to the joy of my faith, the central joy of my life. Life is still so sweet, good things are happening, each day I get through is an achievement.

I do count each day as a victory, each night I go to bed I chalk it up. The good days, when the pain is less are lovely, but I barely celebrate them because bad times can come so quickly. On the good days I usually foolishly do too much.

The drugs are amazing that I’m on, but they put a strain on my body. My body tenses up, my pulse quickens, and for about an hour they get into my system. Then my pee turns bright yellow, as bright as a highlighter pen. I’m getting better, but it is a zig-zag recovery, the good days are better than ever but the bad days are worse than ever. I’m getting more and more good days, and that is a special joy to me, a sweet relief.

My faith is everything to me, I really do feel I can lose everything yet gain everything; that even though the pain is often awful and I can sometimes barely walk, my faith is greater than ever, my joy more complete.

And life is beautiful, so so beautiful. I love the good simple pleasures of life more than ever, the joy of walking down the street, the joy of seeing a blue sky, the simple things have become the necessities. Supportive friends have become more meanigful than I ever thought they could be. I rely on them. A good night of sleep feels more amazing that words explain, deep dreamfilled sleep is the purest relief from pain.

I’m positive but weary, joyful yet painfilled, prayerful yet clinging to the Father. And I’m utterly bored of this battle.

But when it is all over, I know I’ll appreciate all of you so much more.

Thanks,

love Ned