The Pain Olympics

I've written about this before, so forgive me if you're bored of reading about it, but it's been on my mind. And hey, it's topical (35 days to go until the real olympics). Apologies if you're heartily sick of the olympics. Obviously, this isn't really about sport, so read on.

What I mean by the 'pain olympics' is the competitiveness that I've occasionally witnessed from other people with chronic illnesses or disabilities, as though there's a gold medal for the 'most disabled'. The conversation might go something like this:

Person 1: I am paraplegic (paralysed from the waist down). This is the worst thing that has ever happened to me.
Person 2: I am tetraplegic (paralysed from the shoulders down). You're hardly paralysed. Call that an injury? It's just a slap on the arse. Get yourself a band-aid and a cup of tea and you'll be fine.

With some paraphrasing, this is a conversation that I have heard many times in real life.

I have to admit that it's tempting to squash the complainers. The people who have a cold and whine for a week. A broken toe? A cut that needed *gasp* two stitches? There are times when I want to tell them to look around and try to gain some perspective; to tell them that they have no idea what 'serious' pain is like.

 But I don't.

Why?

Because where do you draw the line?

What counts as serious and 'worthy' of sympathy? There will always be someone in a worse position - more paralysed, in more pain, more limited by their disability, in hospital for longer, requiring more care or more surgical intervention. There will always be someone younger, more courageous, more inspirational; achieving more against the odds.

Complainers, we love you and want to be supportive, but think carefully about what you're saying, and who's on the receiving end of your whining. Telling someone with digestive tract paralysis who is totally unable to eat about the awful morning sickness that is putting you off your organic muesli may not earn you much sympathy.

Sick people, try not to be too judgemental. Imagine how much we could achieve if we supported each other instead of thinking up new and original cutting remarks to put people in their place if they dare to complain about something as minor as, say, childbirth.

For me, the progression of this illness is the worst thing (or one of the worst things) I've ever experienced. I know that there are people in a worse position than me, and I can't imagine how strong they must have to be to get through each day. I rely on these people to inspire me to find the inner strength that I need to seek out the joy in life when it seems impossibly hard. I am so grateful that they don't belittle my experience, though it's nothing in comparison to what some of them are living through on a daily basis.

There is no gold medal for having the most serious illness. The only achievements in life are those we earn, despite our circumstances, not because of them.

Grief

Denial
Anger
Bargaining
Depression
Acceptance

Elizabeth Kubler-Ross' five stages of grieving, from her book 'On Death and Dying'. Originally, these five stages were applied to those with terminal illness, or those grieving the loss of a loved one. I think that they can also be applied to those of us with chronic illnesses, whether life-limiting or not.

I am 30 years old, soon to be 31. I have been ill for longer than I can remember. Over the years, I have suffered losses as a result of my illness: my hearing; my ability to run, and then to walk; the career that I always thought was my destiny; friends; independence. I could go on, but I'm sure you get the idea.

These little losses can build up until life seems utterly hopeless. Grieving for these losses can cause losses too. I mourned my joie de vivre as much as the loss of my long-awaited career. Thankfully, my love for life returned, and I found other interests to occupy my time. This, I suppose, is acceptance.

If I were to reshape the stages of grief, I would make them into the shape of a spider web. Not only because there's a large spider on the other side of the room, but because I have so often bounced from one to the other in no apparent order. Having reached the glorious state of acceptance, I sometimes find myself ricocheting into anger, denial, depression, bargaining and back, all within the space of a few days. Sometimes even within the space of a few hours.

Acceptance for me has been about valuing the things that I can still do. When that has seemed next to nothing, I have tried to take up new hobbies. I re-learnt to knit when I was housebound for six months, and this has proved immensely satisfying. Not only does it occupy many lonely hours, but I have something beautiful to show at the end of it. Something that I have made, without walking, without lifting, despite pain. I am reaching a point where I can't knit for long without dislocating my fingers and wrists, but feel peaceful about this. I have been here before, and I will still be me, despite everything that my body throws at me.

Acceptance has also been about defining myself according to who I am, rather than what I do. I am no longer a medic, a scientist or an investment banker; no longer a GB waterskier, a swimmer or a wheelchair-skills tutor. On good days I can still be sociable, bake, read and knit. On bad days I sleep, vomit, nebulise and take medications. Despite all of this, I am still me. I am kind, enthusiastic, deeply interested in the world around me, hopeful, optimistic, grateful, generous, and sarcastic.This 'me' may live in a decrepit and failing body, but it is little different for that. I look after this body as best I can and hope that it will continue to support me for many years to come.

Despite the state of my body, I am glad to be alive.

Days Like This

Despite my best efforts to remain positive and grateful to be alive in this incredible and beautiful world, there are days when things get in the way of that.

Today, for example, I have a fever. It's only 38.5 C (101.3 F), but it's enough to make me feel very shivery, even with a thick knitted cardigan, hiking socks, a duvet, a hot drink and a hot water bottle. Yes, I look ridiculous, but I was feeling miserable, and needed to be warm!

My blood sugars are running low enough for me to feel symptomatic, but whatever is causing the fever seems to be upsetting my tummy, and my gastroparesis/intestinal dysmotility are both flaring up like you wouldn't believe. My dysautonomia symptoms are through the roof, and my pain levels are higher than they have been for a while. Whatever this thing is, it's really hit my poor body hard! I haven't managed to eat anything today, but I am keeping sips of sugary drinks down, and I have some glucose tablets here that I can suck or dissolve in water, if necessary.

I thought that I would be ok to work through my to-do list while lying on the sofa, but felt so miserable that all I could do was sleep. I didn't even manage to get online to buy some really cute gift tags for the Christmas presents that I started to wrap! On the plus side, I've started a new knitting project, and a managing a few rows at a time with lots of encouragement from my online friends at Ravelry!

Typing is making me feel dizzy and more nauseous, so I'll stop soon, but I'd like to wish my US readers a very happy Thanksgiving. The lovely Rachel from talesofrachel.com is generously moderating chat on the forum of the Chronic Babes website tomorrow for those who would like some company on Thanksgiving, or who just want a break from people who don't 'get it' and some positive words from people who do!

On days like these it's my friends and family who get me through, and who give me the strength to come through the darkest and most difficult moments, ready to face the next day with a smile.

Thank you.


This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J