Friday, 2 August 2013

Negative Spoons part 2

Yesterday's post gave the history and background of my illness and explained what the issues and symptoms were. Today I want to look at what all that really means in day to day life and what sort of impact it has. I will be referencing spoon theory, an analogy used to describe living with chronic illness. If you are not familiar with spoon theory I suggest you go and read the original piece by Christine Miserandino.

I left off saying how I have been left with a group of nagging symptoms that don't really have definite name but that leave me unable to work and in, to put it mildly, a lot of discomfort. I also mentioned that I leave myself open to judgement from all quarters and that this can be an incredible drain. So let's talk about some of the judgement. People generally judge because they are dealing with a set of incomplete information, because they lack all the necessary data to understand the situation before them completely. More than that, they choose to form inaccurate conclusions from their incomplete data rather than acknowledging that they do not have all the information. A non-judgemental person looks at a situation, understands that they do not have all the facts  and think 'Well it looks like X but there could be other things I don't know about so I will not give my opinion on X.' . A judgemental person thinks 'It looks like X and I will not consider that there may be other facts so I will consider X only.'.

OK that was a little bit vague so let's look at it in real terms. I am unable to work; my illness makes me feel a lot of pain and extreme fatigue so work is not a viable option right now. I did however, go to a LARP event at the weekend and had a tremendous amount of fun. Judgemental person sees this and assumes that because I am able to go to the LARP event, I must be able to work and that my excuse for not working is a sham. But they don't have all the facts.

How does a chronic illness really work? Well for starters as the moniker suggests, it is chronic. Though the severity may fluctuate, the condition is always present. This is extremely tiring which given that one of my symptoms is chronic fatigue is a bit of a blow. I wake up every day feeling like I have just completed the hardest week of work in my adult life. My body aches, my muscles cramp and the joins burn. I am so tired I struggle to comprehend things. Sitting up is a physical and mental wall to climb.
What does judgemental person see? They see somebody who is tired and achey, but sure everybody gets tired and achey sometimes.
What is the bigger picture that they aren't seeing? This happens every day regardless of what my activity was the previous day. This is also an average feeling for me, some days it is milder but many days it is vastly worse.

This is where we can introduce spoon theory. I start off each day spending more spoons than your average person. It shouldn't take spoons to get out of bed, but for me it takes a couple.

What about pain? I'm sure many of you have come across pain scales like this:

The traditional is at the top and my preferred Hyperbole and Half scale is underneath.
They are used by doctors and triage nurses to assess the amount of pain an individual is in. Theoretically you are only supposed to compares the numbers to your own personal experience and not to others, but I digress.
This is where I and others with chronic pain issues hit a problem. Actually two problems. First thing is that when you are in pain every day your perception of what 'hurts worst' is like changes. When you have experienced something that rates as a 6 every day for the last week, by the end of the week it is difficult to understand if it is still a 6 or maybe it's a 4? They pain and severity have not diminished but we have become rather jaded and used to it at this point, perhaps even telling ourselves that we were over reacting when we first called it a six.
The other issue is that the pain scale doesn't understand long term and cumulative pain. A pain that rates as a four isn't so bad is it? Most of us have experience it at one point or another. But can you imagine the physical and mental stress of dealing with a 4 for a protracted period of time. It uses spoons and it can be quite upsetting. Furthermore, I might have number 4 pain in my hip, but I also have  a number 4 pain all the way down my leg, a 5 in my neck and right hand a 3 in my left hand, back and upper arms. They are all low numbers but there are a lot of them and they aren't going away soon.
Have you ever had a small burn from a hot pan or the oven. It brings tears to your eyes, blisters and is quite distracting maybe it's number 5 pain. But, it's only an inch across on your hand so you can carry on with other things. Let's spread that across your body. Can you imagine a dozen number 5 burns all over your body. How well can you manage it now? Managing pain takes a physical effort, it is draining and hard work. Pain eats spoons.

This is another piece of information the judgemental person is lacking: you can not experience somebody elses pain and you do not know the effect that pain has on somebody.

Now for the big point: pain and fatigue (and the other diverse symptoms) can accumulate. They feed of of each other and they grown. They don't just stack, they multiply.
I went to a LARP event at the weekend. That much anybody can see for themselves, it is the hidden facts that are important, though. I  not currently work. This means that my daily spoons go on things like showering and getting dressed (4 spoons), washing the dishes (2 spoons), going to the local shop to buy milk (4 spoons) etc. I might have a spoon or two left at the end of the day or I might break even. In preparation for a LARP event, I shut down. I do less around the house, I go out less, I socialise less. I conserve every precious spoon I can. When I go to an event I manage it carefully. Sadly this means I can't help with things like set up and take down because then I would have no spoons to enjoy the event, I do less with my character than I would like because I don't have the spoons to go after every opportunity. I take naps, I stop drinking early and go to bed at a sensible hour. I manage my spoons as carefully as I can. But I still go into a spoon deficit. That aching, always present fatigue that has been squeezing at me the whole weekend doesn't go away, it waits. Every pain and muscle spasm and deep deep ache that I have ignored or warded off with cold drinks and stretching is lurking over my shoulder. As soon as the event ends, they demand I pay attention to them. It is post event that I feel it. Everybody has a post event crash, that feeling of weariness and feeling a bit rough; it makes sense, we've spent a weekend abusing our bodies in the most ridiculous way, of course we're going to feel it.
The problem is, that over the course of the week following an event I feel progressively worse. There is a spoon debt to be paid, and the only place those spoons, the energy and coping ability I need, are going to come from is my allowance for each day.
At the time of writing this I have been out of bed for an hour and 15 minutes. I am shaking, I need to lie down again and I am wondering how far away my top up painkillers are. My hand has swollen and become inflamed and my arms are burning. That's it. just over an hour is all I can manage post event before I have used up most of my spoons for the day. I am running on negative spoons.

The judgemental people don't see that. They see me go to an event and assume that means I am fit for work. If you can find me a job that allows me to work two days at a time once every two months and pays a living wage, then yes, I am fit for work. I would love to work, I am sick of being to sick to work. What many people fail to realise is that, when they see me up and about and socialising I am doing so after a long period of not working, a long period of rest. I am able to do some social activities only because I spend most of my life resting and taking a variety of pain medication. They don't see when I end up crying in pain and frustration.They don't see the panic I feel when somebody says 'it's just a short walk'. They don't see how i have to choose every activity I do with the utmost care, from washing my hair to going to a LARP event.

Perhaps going to LARP events when I can't work isn't the best use of my spoons. Maybe it is irresponsible. But If I am going to spend a week in pain, struggling to get out of bed, I want the negative spoons to be associated with something enjoyable.

1 comment:

- byrd said...

I deal with some of the guilt because I don't look sick (SO, if you don't have huge bruses or maggoty-crawling open sores, you aren't sick?) I've had to just shut off what other people do or think about me and my energy levels. That's a lot easier said than done.

Glad you have this blog.