Anyone who has read my twitter updates in the last few days will know that I was ill for a couple of days last week. For anybody reading this who doesn’t know, I have been diagnosed with a few medical conditions over the past 5 or 6 years after suffering with them for several years before that; CDH (Chronic Daily Headaches), Chronic Migraine, Cluster Headaches (otherwise known as suicide headaches).. and the doctor also suspects I am currently anaemic, which doesn’t help!

Someone said to me today “oh, are you in today then? You take a day off every time you have a headache!”, in an attempt at being sarcastic about me being off last week. Needless to say this didn’t make me a happy bunny – if I took a day off every time I had a headache I would never go to work! It also set me thinking, and talking to my boss about my sick days this afternoon got me thinking too.

For most people, a headache is something that happens every now and again, when they are overtired, or stressed – take a few painkillers and it’ll go away. For me, my conditions are frustrating, tiring, and an endless, continual presence in my life. I came home from work today, I got hugged while I cried in frustration, and I turned to a few of my friends for help & support (thank you girls – you know who you are!). Both of these friends have experienced chronic pain, both of them have the curse of being able to understand – which is in one way a wonderful thing, but in another way a horrible thing because I would never wish chronic pain on anybody. But most people I interact with, they don’t know what it is I deal with every day. So I thought I would try to explain – if only to define it for myself.

When I asked one of my friends if she knew about a pain scale that I could use to help people understand – people who don’t deal with any kind of chronic pain, she pointed me in the direction of this scale (quoted below). To put what I feel on a daily basis into perspective, my normal day is either 4 or 5 on this scale. 4 is a fairly good day, 5 is an OK day. 6 or 7 happens fairly often, say once a week. For my CDH, 8 is a bad day (8 being a day I don’t make it into work) – these happen once or twice a month, and sometimes last for a few days. Rarely, I will have a very good day, a 2 or a 3. A 0 or 1 day is a blessing, and extremely rare. A cluster headache is a 10, no doubt about it, and goes on for several days on & off.

0
Pain free
1
Very minor annoyance – mild aches to some parts of the body. No pain medication needed.
2
Minor annoyance – dull aches to some parts of the body. No pain medication needed.
3
Annoying enough to be distracting. Over-the-Counter pain relievers (such as Naproxen Sodium, Acetamonophen, or topical treatments such as Absorbine or Arthritis Pain relieving rubs) take care of it.
4
Can be ignored if you are really involved in your work, but still distracting. Over-the-Counter pain relievers remove pain for 3-4 hours.
5
Can’t be ignored for more than 30 minutes. Over-the-Counter pain relievers help somewhat (bring pain level from 5 to a 3 or 4) with pain for 3-4 hours.
6
Can’t be ignored for any length of time, but you can still go to work and participate in social activities. Stronger painkillers (such as Ultram) relieve pain for 3-4 hours.
7
Makes it difficult to concentrate, interferes with sleep. You can still function with effort. Stronger painkillers (such as Ultram) are only partially effective. (Stronger pain killers bring pain from a 7 to 4-6.)
8
Physical activity severely limited. You can read and converse with effort. Stronger pain killers (such as Ultram) are not effective. (Narcotic pain killers do bring this pain down to a level 3 or lower.)
9
Non functional for all practical purposes. Cannot concentrate. Physical activity halted. Panic sets in.(Narcotic Pain killers bring the pain level from 9 to the 4-6 level.)
10
Totally non-functional. Unable to speak. Crying our or moaning uncontrollably – near delirium.

She also used the term ‘spoonie’ during our conversation . When I asked what this meant, she pointed me towards the website butyoudontlooksick.com – a site I loved instantly just for the domain name, and even more when I went and read the contents. One of the most frustrating things about being a chronic pain sufferer is that it doesn’t show. But it’s there, all the time. It makes me cranky, and after a day ignoring it and ‘getting on with it’ at work it makes me so very tired. I spend the weekend recovering from the work week and I start again on Monday. Boxes sit still packed from our move here 6 months ago and days off to do things around the house turn into an extra day to rest & regain energy. I go to the doctor every 3 or 4 months and I try different medication every few appointments in the hope that something will manage the pain better than my currently daily drugs of choice. I have to deal with the side effects that come with these drugs, the drowsiness and the other less savoury ones which are not suitable for this post!

I know perfectly well this is a very self indulgent blog post, but I have to also admit I know I am lucky. I’m lucky to be able to go to work, many people with chronic conditions are unable to. I’m lucky that I can appreciate the pain free days as the gems they are, and I am lucky to be as well as I am. I have a relatively normal life, even if I live in a messy house because I’m often too tired to do the housework. I have James, who is forever supportive and tries to be as understanding as possible. But at the end of the day, I still have the pain – and the frustration that comes with it. Sometimes I don’t know what’s worse, the pain itself, or the frustration of dealing with it.

And at the end of the day, I don’t have many spoons left.

Tags: health, work

This entry was posted on Tuesday, February 10th, 2009 at 10:10 pm and is filed under Journal. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.