For far too long I have seen on social media graphics and text regarding people relating to the fatigue a person with chronic illness goes through on a daily basis.
I have a number of chronic illnesses and have had for over 30 years and fatigue really is the worst thing to deal with. It’s not feeling like you have only had 6 hours sleep instead of your usual 7, it’s just too hard to describe unless you have actually ever been there. I look back and I really can’t remember the last time I woke refreshed and I’m talking looking back 30 years.
However, I learnt to pace myself and pick and choose the activities I do, I don’t partake in a lot of things I would like to do as I know it would wipe me out for days and when I do more than my body can take, I can spend days in bed. I’m lucky in that I have worked for myself for nearly 6 years now but when I was a Civil Servant fatigue paid a huge part in me losing my job on health grounds which at the time was heart-breaking. I did like my job, but I didn’t like the people and the reason I didn’t like them is because they had no understanding of what I went through every day. They always knew what I had to do to make myself ‘better’ when in fact they were clueless and never once asked about why I was fatigued or not feelig well.
Having people who understand and help you with things that you find too tiring, for me that can be something as silly as loading the dishwasher, going to the supermarket or even on occasions going out for a coffee (please insert TEA), lunch or a night out. We don’t want to be hermits and it’s so easy to keep saying no when you are invited out and slowly your circle of friends can diminish. I’m lucky, very lucky that I have a small group of amazing friends who do understand and instead of going out for lunch they come to mine with an indoor picnic or will pick up a few groceries when they are out shopping. Things like this really do make all the difference and mean if I’ve saved some energy from not shopping etc that day I can manage a couple of hours out without needing to recover in bed for the next 4 days.
All people with chronic illnesses want is to be treated the same, we don’t want to be treated differently but what we do want is a little understanding that we can’t always be the energy filled person we used to be and can’t always be on the go 24/7. But that doesn’t mean we don’t want to enjoy life any more, we still do we just do it at a more relaxed pace and pick and choose what we spend our limited energy on.
As I said to one of my consultants last week when she said I had such a lot of health issues going on for someone ‘so young’, I did take a deep breath when she said that. My reply was I know, I’ve come to accept that and all I want is the help to be able to go to work and have a puirpose in my life and then be able to come home and do a few things during the week for fun as even though I have these health issues I still deserve to be supported to work and still have fun times too. I doubt there will be a miricle cure in my lifestime but that doesn’t mean society should write me off. More understanding is needed as is more support to enable people to work if they want to but sadly society doesn’t understand many of the issues people with chronic illnesses face and there certainly isn’t the support available.
The first step you can take to help is to understand tiredness is a huge issue for alot of people with chronic illnesses and it’s far more than missing an hours sleep one night. IIt is hard to imagine how someone can be exhausted and yet not sleep, feeling fatigued can also affect every aspect of your life; your concentration, your moods, cognative behaviour, how you react to pain. It’s a never ending fair ground ride which very few can get off. In the past, and sadly still, sleep depravation has been used as a form of tourture; it really is!
If there is anything you can do, no matter how small for someone who suffers from fatigue please do, often just a non judgemental friendly face at the door and sitting down with you making the drinks can be so welcoming and help turn a bad day a little brighter.
All I ask is that you pause and remember there is tired then there is fatigue and believe me both are two very different things.