Wednesday, 24 July 2013

Things I learnt at clinic: Diaries- Also known as how many spoons so I have?

Example diary
I hope you enjoyed reading about the spoon theory. My mum made me laugh by saying "why spoons? Couldn't she have used sugar packets?" Oh Mum I love you although I am probably in trouble now for writing that. Sorry I do not have the answer to that one, I'm sure in her moment of inspiration Christine Miserandino did not really give that much thought into what she used to help get her point across, she just wanted to get her point across. Yes, 'sugars' would be a nicer nickname for us sufferers of chronic illnesses. But could you imagine the complications of enquiring into how you take your tea or coffee? "How many sugars do you have?" "Well I haven't showered today and I drove instead of walking here, so I'd say I have about 8 left." Could get complicated.

Anyway, as Christine Miserandino says it's important to know just how many 'spoons' (I almost wrote sugars then) that you have at your disposal. But how do you do this? How do we open that cutlery drawer in our brains and see just how many spoons we have to get us through the day. Whist I was in clinic they were very keen on us using diaries or charts  but they they weren't just any kind of the diary. Just look for yourselves at the above image. You may think it looks quite complicated but once you understand its intricacies it makes more sense.

Basically it is a chart that horizontally lists the days of the week and vertically the times of day  in 2 hour time slots, excluding overnight- because you should be sleeping. To avoid confusion for you it's my scrawl across the very to, noting the hours that I had slept, as that's important to make note of too. The aim of the diary is to fill in each space with what you have been doing for those two hours. For example Monday 8am-10am breakfast. And so on as the day goes on. They have chosen a time slot of every two hours a it serves as a constant reminder of what you have been doing and how you felt before brain fog sets in or it's the end of the day and you are desperately trying to remember all that you have done that day. Because noting everything down really does give you a better picture of where you are using your 'spoons' without generalising or surmising on the day that you have had. By completing the chart every 2 hours it gives a much more honest picture that will help you more in the long run.

From the image you will also notice that there is writing in both blue and red. This is intentional- there was no pen crisis. This is because what we needed to do was to write in blue ink if were experiencing a bareable level of symptoms, that you have felt okay or hopefully good for those two hours. Or to use red ink if those two hours were awful and dominated by bad symptoms. By doing this every day too it was a way of looking for patterns. Do you mostly have red mornings and more blue afternoons or vice versa? Or a blue day then a red day? It can also help you appreciate that for 2 hours or so that day it perhaps wasn't too bad. Not get to the end of the day and say that it was all completely terrible, because that is how you have been feeling for most of the day.Yes, 2 hours can be a long time and you can very easily go from feeling okay to screaming in pain in that time. If not many times during that time but you can use the colour ink that relates most of those two hours. Let's face it if you had to record things more than every two hours that may get too annoying. Every two hours can be annoying enough.

You will also see that in each space there are smaller boxes with the letter M, E, P and numbers in them. The letters stand for 'mental', 'emotional' and 'physical' and relate to the amount of effort each activity has taken. 1 being the lowest number of effort and 10 being the highest. So let's say that you had been reading then generally you mental effort number will be higher and depending on what you are reading then your emotional effort number could be higher. For example a thriller novel or a weepie. Obviously depending on your symptoms and mood your numbers will fluctuate. So for example if you are reading a thriller whilst being in a lot of pain then your overall numbers are going to be high. If you are in a lot of pain and have been doing something physical then your physical number will be really high, but it will also take it's toll emotionally and mentally too. Of course the key is to when you're feeling in pain to lower your physical activity but that probably comes naturally anyway. But also to not over exert yourself emotionally and mentally too. Of course generally M.E sufferers will generally expell more effort than non sufferers as it is.

But overall these numbers serve to find out what your overall numbers are for each day. So at the end of the day (if you're not too tired) to add up the numbers from the mental, emotional and physical columns and then add them all together for your overall total for the day. This number alongside the colour ink helps you to see how much effort that you can use up without going into a flare, suffer from post exertional malaise or can make you feel not too bad. For example if you feel terrible at the end of the day or experience post exertional malaise, which you would know from the use of red ink and of course because you feel absolutely shocking (don't need a pen to tell you that) then you have probably used up too much effort and can therefore see where you can cut down on your numbers or use up less spoons as it were. So the aim is to find that balance of numbers that allow you to have a completely blue week, where you don't feel too bad. Of course ME is changeable and at times you will have to lower your numbers to coincide with your symptoms. Right now my numbers would be much lower than from the example diary above, as I do very little due to the change in my condition,  certainly physically.

So that is one way of keeping track of how much energy you are using. How many spoons you roughly have at your disposal every day. Likewise you can do it as more of a list. Whatever is best for you? It's certainly good for people in the early stages of ME, when you are so confused and wondering how you can no longer do what you used to. Although it certainly can seem like a lot to have to fill it in every two hours. Lately I have become rubbish at charting my day (other than blogging, that is) but I guess after a while it becomes instinctive. You know how much your mind and body can take. As much as it frustrates the heck out of you.

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