The Spoon Theory and me.

I first got to hear about the spoon theory 5 years ago, in fact I did a little blog about it here.  The video shows a lady who suffers from Lupus (another autoimmune condition very similar to rheumatoid arthritis).  I do not suffer from the nausea and temperature problems that she discusses but do most of the other things.  If you have time to watch the video then it will really help put the following paragraphs into context.

After a recent very serious and prolonged flare up of my rheumatoid arthritis I have decided to see how many spoons I generally have on a 'normal' day, so here goes......

1. Wake up in my own time, go to the loo, get dressed = 1 spoon
2. Go down stairs = 1 spoon
3. make breakfast and cup of tea = 1 spoon
4. brush teeth and hair, wash face = 1 spoon
5. catch up on paperwork/emails = 1 spoon
6. make and eat lunch = 1 spoon
7. go for a swim, shower and get dressed = 3 spoons
8. make tea for the family = 2 spoons
9. go upstairs and get into bed = 1 spoon 

So there you go my basic day also has about 12 spoons in it.  At the moment the only way I can do other activities is by swapping it with another, for example, when my husband is home, he will make my breakfast, lunch and often tea - that gives me a whole 4 spoons to use on other activities.  Here are some of the other things that I like to do:

1. Drive to church, stay sitting in an upright chair and drive home= 3 spoons.
2. Sit and crochet for a couple of hours (only possible when hands are not to sore) = 1 spoon.
3. Water my garden = 1 spoon
4. Walk my dog = 2 spoons
5. drive to a friends for a coffee = 2 spoons
6. go shopping for an hour = 3 spoons
7. drive to the beach for a few hours with a sea swim = 4 spoons.
8. have a friend round for coffee = 1 spoon
9. do some sewing with my machine = 2 spoons

So to do any of these at the moment, I have to not do some of things in that first list of 9 activities.  And I'm afraid it doesn't end there, life is messy and so there are other things that come in and demand spoons from me........

1. An unexpected emotional telephone conversation = 2 spoons.
2. Tackling the ironing mountain = 3 spoons.
3.  An extra car journey to take something to school for one of the children if they have forgotten something = 1 spoon.
4. Parents evenings at school = 3 spoons.
5. doctor/hospital appointments for me or the children = 2 spoons
6. A trip to the shops for something for tea = 1 spoon
7. Taking/ fetching the children from after school activities = 1 spoon for each journey.
8. Bumping into a friend whist out and standing chatting for 10 minutes = 1 spoon.
9. Getting petrol for the car = 1 spoon

Now the thing about that third list is that any of these always have to take priority over the second list, and problems really occur when I have got to do all the things in the first list and then some of things in the third list.  This will inevitably mean that I end up borrowing spoons from other days which means it is highly likely that I will end up extra fatigued, which makes me vulnerable to become ill or have another flare up.

On top of having to think about all these lists all the time, in order to be able to get done the things that need to get done in a day (and sometimes the things I WANT to do in a day), I also have to acknowledge that there is a spoon thief out there.  My thief comes in the guise of fatigue,illness and flare ups.  Like a thief, I never really know when they are going to strike.  Sometimes as I mentioned before I leave a window open by doing too much, which allows the thief easy access to my spoons.  So what do I do when the thief strikes?

If my husband is at work it means not doing some of the things in list one, so I might not get dressed or go downstairs, this is okay as long as one of my children is happy to bring me a cup of tea and maybe a bit of breakfast.  Phone calls and emails have to wait.  The children may have to make their own tea if dad is at work.  The one activity that I will try all out to do is my swimming as the benefit to my joints of moving them in water is proven to be positive.  However I have to be content not to even swim if I'm bad and just move in the water, have a quick shower and not dry my hair.

On the whole I seem to get through my days okay.  I am however human and I do sometimes feel sorry for myself.  This happened to me yesterday when I went to church and heard all about the holiday club that had been on for children - just 3 years ago this was part of my job.  Now even just getting to the service was an effort.  I know that I shouldn't look back and compare then to now, but sometimes you just can't help it, it just suddenly slaps you in the face.  I nearly didn't go to church because I knew it might make me sad, but then I feel bad and selfish for not supporting the great work that is going on.

In a world where everyone seems to be defined by who they are and what they do for a living it can be very difficult to continually have to make an excuse for not fitting into that definition.  Not that I think the definition is correct, but going against the grain is difficult at the best of times!!!

So there you go, you now know a little more about what goes on in my head.  It's a good job God blessed me with a reasonably organised nature otherwise I don't know how I would manage!

Take care for now,    Jane x.