Fighting illness isn't always about battles

I like days like today.
I woke up feeling terrible and have felt very ill all day. (I know I'm definitely ill when I switch on my favourite video game, pick up the controller, groan and switch it all back off again!)
BUT... I have had a good day.
TAKE THAT illness! *pulls rude childish faces and blows raspberries*

I got to spend some all too rare time with my youngest sister who leads a hectic lifestyle in London as a freelance classical musician (french horn). She had stayed the night and I HAD intended to take her out for lunch.

I was most put out as I had been doing really well recently (relatively speaking) and was sure I would be well enough to do so. But after learning that pizza is apparently very expensive in London for some reason, I ordered some and we had a picnic in the garden followed by strawberries. She then went off to catch her train.

By then I felt far too ill to do anything at all, so slept and watched my fish tanks all afternoon. By evening I felt well enough to speak coherently with my friend who had come to visit. We had a good old chat before watching a couple of episodes from "Game of Thrones". We have both read the books so know the plot, but are really enjoying the series anyway. It is very well done.

I hope I will feel better tomorrow, but if I don't I have plenty of little short things I can think of to do even while feeling dreadful.

So there you have it. Today might have been considered a loss and a failure. I didn't manage to take my sister to the pub. I was incapacitated for the majority of the day. And let's face it, I felt like death warmed up!
But in fact I enjoyed my time with my sister anyway, had a wonderful lunch, some precious time outside the four walls of my flat and an enjoyable evening with my friend. I call that a win.

Had I tried to "battle on" and go to the pub one of two things would have happened:

1) I would have collapsed or had to come home early and caused a scene and great distress to my sister.

2) I would have "made it" but not enjoyed a minute of it and caused worry to both myself and my sister as we would both have been wondering if I was about to collapse.

Instead I was able to spend a relatively pleasant time with sister despite the fact that I wasn't feeling at all well. Neither of us was worried or concerned. We enjoyed our meal. We enjoyed our surroundings. 

Had I tried to "battle on" during the rest of the day and do things, I would not have been able to enjoy the evening with my friend and, from past experience, I know I would likely be very ill tomorrow. As it is there is every chance that I will recover. If not, well, at least I have given myself the best possible chance to do so.

I didn't manage to get much done today but, well... there IS a reason I'm on long term sick leave from work! Right now it means that if I have to put things off to tomorrow, or the next day, or the day after that, it usually isn't the end of the world.

I strongly believe that beating the illness isn't always about battling on and doing things despite it. I think it is about enjoying life even when feeling very ill and even when your plans have gone awry.

An exhausted lunch

People can see how my disability and illness affects me in the obvious ways. My electric wheelchair for instance is a dead giveaway. Needing to use wrist splints to pick up my spoon to eat is another.

What can be less obvious are things like debilitating fatigue. This affects me in strange ways. One thing I find tends to happen is that I become incredibly uncoordinated, clumsy and absent minded. As I am usually on my own when I am tired, this is one aspect most people don't see.

Here is an ironic look at a real life example. One single incident is not terribly "disabling" in itself but apply it to everything you attempt to do that day and you can see that it mounts up to a bigger problem.

An exhausted lunch

I think I'm tired. Just tried to "make" lunch, which was soup in a mug, which my carer had left ready for me.

Step 1: Take cling film off mug.
Step 2: Take cling film off hand
Step 3: Take cling film off other hand
Step 4: Pick cling film off floor
Step 5: Get up off floor
Step 6: Put cling film in bin
Step 7: Detach cling film from bin lid
Step 8: Repeat Steps 2 and 3
Step 9: Repeat Step 6
Step 10: Have a rest
Step 11: Put mug in microwave
Step 12: Drop mug
Step 13: Rescue mug
Step 14 Wipe up escaped soup and check enough soup is left for lunch
Step 15: Repeat Step 11
Step 16: Pick up saucer to put on mug to avoid splashes
Step 17: Drop saucer
Step 18: Rescue saucer
Step 19: Repeat Step 16 and put saucer on mug
Step 20: Start microwave
Step 21: Realise I have somehow set microwave to defrost
Step 22: Rescue soup
Step 23: Repeat Step 20
Step 24: CAREFULLY retrieve mug and go to lounge
Step 25: Discover I am now too tired to eat

Attack of the Spoon Pixies

The term "spoonie" is a familiar one to many people working in disability and chronic illness circles. Put simply it describes anyone who experiences debilitating fatigue and has had to learn to continually plan and pace their daily activities. The name comes from the essay "The Spoon Theory", and is an excellent way of explaining fatigue to relatives or friends who just "don't get it"!

In essence energy is represented by a number of spoons. While people who are not ill have unlimited amounts of spoons, for some unknown reason "spoonies" only have a set amount each day. Every activity, be it getting dressed, eating, or going out uses up a certain amount of them. The harder the activity, the more spoons are used up. Once there are no spoons left, you're stuck for the rest of the day! Hence why a "spoonie" has to be so careful and plan their days in advance.

Some spoonies are even more unlucky and their number of spoons varies considerably. Some days they have a lot of spoons and can do a reasonably amount. Other days they have hardly any spoons at all.

Why is this?

We have given this much thought and finally have the answer everyone has been waiting for.

SPOON PIXIES!

Spoon Pixies belong to the same species of creatures as the Tooth Fairy and are a cousin to the Common Garden Gnome.

Like the Tooth Fairy they visit at night when you are asleep.

While the Tooth Fairy takes away a tooth and leaves some money behind, the Spoon Pixie is a much nastier piece of work. It steals spoons but leaves no trace of its visit.

This is why it has (until today) left both patients and doctors completely baffled.


While we cannot prevent visits from the Spoon Pixie a number of suggestions have been made.

1. The first of course is to make sure spoons are carefully locked away before going to bed. 
2. Secondly, it may be possible to stop the Spoon Pixie. Leaving sticky tape beside the bed may prevent it from reaching its goal. 
3. Finally, a much more daring course of action being researched is to actively bribe the Spoon Pixie. In this way it may even be possible for the Spoon Pixie to return some stolen spoons! Leaving coins and shiny objects under the pillow or by the bedside *may* entice the Spoon Pixie into a "spoon exchange". Research in this area is also ongoing. 

We are open to more suggestions.

Spoonie: good or bad?

I have recently come across some people vehemently opposed to the term spoonie. For those unfamiliar with the term it is used by a large number of disabled people, who, for one reason or another have to "manage" their days very carefully. This may be due to a lack of energy, excess pain, having to change position frequently or other reasons I have not thought of.

The term spoonie was coined due to an essay called "The Spoon Theory" found on a website "But you don't look sick".

Essentially a "spoonie" is given a very limited number of spoons each day and every activity (and this includes simple things like washing, getting dressed, eating, or even sitting up for a "prolonged" period) costs a number of spoons. Due to the low number of spoons, unlike other people every single activity has to be very carefully considered and weighed up and prioritising is essential.

So while some define being a spoonie as someone who has low energy, etc, I define a spoonie as someone who continually manages and priorities their tasks and energy due to pain/fatigue etc. So it is a coping method just as much as a "symptom".

I regard being a spoonie as a fact of life, no different to being a wheelchair user. It is a useful term which explains to people why I may have to rest, or leave early or not do lots of things several days in a row.  More than that, I regard it as a technique. If a spoonie does NOT manage their energy correctly they soon become unstuck. In my own case, before I had adapted and accepted that I simply did not have the ability I used to have, I pushed myself to do things I couldn't really do. I would then become extremely ill.

I am now very adept at knowing exactly when to push myself and when not to. I also know that it is possible to push for a special event and to pay for it later. It is ok. Not particularly pleasant, certainly not doable the whole time, but well worth it. I regard all of this as the "spoonie method". It is what it means to BE a spoonie.

So I was rather surprised when I was told that I was "self pitying" and "maudlin" for calling myself a spoonie. Apparently spoonies are concentrating on their problems and feeling sorry for themselves.

Now I must admit that I am not a huge fan of the original spoonie essay. I do find the tone a little too self pitying.
If I had been explaining the idea to my best friend I would have let her use up all her spoons and then laughed in her face and told her she now had to go to bed at 11am. At which point we would have had a giggle and then tried again until she got it right.

If ever someone tries to pity me I explain that it is a coping mechanism, no different to using my wheelchair. Sure, it is clunky, it doesn't go upstairs, and it isn't ideal. But it usually gets me from A to B. I'd be a heck of a lot worse off without it.
Likewise being a "spoonie" ie managing my "spoons" is awkward and it is annoying having to think about it all the time. But it allows me to do the things I need or want to (most of the time) without making myself ill.

I don't expect your pity for being a spoonie any more than I expect your pity for using a wheelchair. If I describe myself as a "spoonie" or a "wheelchair user" I am simply stating a fact.
Me telling you I am a wheelchair user will help explain why we need accessible venues if we go somewhere.
Me telling you I am a spoonie will help explain why we can't do lots of things all at once together, or not one day after another and we may need to adapt to this by various means (eg shorter times out, rest periods, etc).

Now explain to me why the term is offensive and why I am self pitying?