Chronic Fatigue Syndrome
May 12, 2011 in Small Bites
Today is International CFS/ME/ Fibromyalgia Awareness day and a few weeks ago this post was doing the rounds of Facebook statuses:
YOU DON’T LOOK SICK?! No, I don’t. It is so hard to explain to someone when they have no clue. It’s a daily struggle feeling sick on the inside while you look fine on the outside. Please put this as your status for at least 1 hour if you or someone you know has an invisible illness! (Anxiety, Lupus, Fibromyalgia, Chronic Fatigue, PCOS, Endometriosis, Diabetes, Crohns, Arthritis, Epilepsy, MS, IC, and/or Depression)
So I decided it was probably time to do a blog about Chronic Fatigue Syndrome and shed some light on a hard to understand illness.
It was nice to see a little awareness about “invisible illnesses” as they are difficult to explain and even more difficult to experience. I was holding off on talking about Chronic Fatigue Syndrome on my blog because I get upset when I have to explain it and lay it out in black and white. It hits me how real it is and how well I can brush it off and keep positive; having it out there in the most honest way can be a scary and confronting thing. I’m good at making jokes about it; after all sometimes there isn’t a lot else you can do to get through.
Reading the above statement made me think about a time when I did have to explain CFS to someone who really had trouble grasping the situation and understanding it logically. I had luckily read a fantastic article by a woman with Lupus (which has similar energy depletion to CFS) who explained the way her energy worked using spoons as a measurement. Unfortunately spoons didn’t quite cut it for my logical friend so we agreed to say ‘energy pills’ instead. So, I’m going to try and explain how the lack of energy for CFS sufferers works. There are more symptoms than just being tired but this is the biggest and easiest one for people to relate to.
Ok, so say we all have these “energy pills”, every day you wake up with an almost limitless amount which allows you to exercise, go to school/uni/work for the day, catch up for lunch with mates, drive down to the shops to pick up groceries, vacuum the house and so on and so forth. Now I’m going to give you an illness that depletes your energy, so as of now you have Chronic Fatigue Syndrome. The bed ridden only have about 10 energy pills, the more functional somewhere between 30-50, the ‘lucky’ ones who have got mild CFS get 50-100. I’m going to give myself 40 pills to work off. Now you have a limited supply of “energy pills”, you wake up and you only have 40. The little things that didn’t cost you anything yesterday cost you a lot more today. Washing your hair? 5 pills, getting dressed- 3 pills, making breakfast 2 pills, forcing yourself to exercise for 15 minutes- 20 pills, you have only made it to 11.30 in the morning and you only have 10 pills left. Now you have to make choices! Wash your hair or grocery shopping? Play Wii dance with your sister or make your own dinner? Get on the exercise bike or go shopping and have a coffee with mum? You have to pick and choose what is important and worth using energy on. It certainly gives you a greater understanding and respect for the energy that you do have and the things you want to spend it on.
Occasionally I do something that pushes my energy into the negative, I’ve used more than I could possibly have; that is when you start the next few days down a lot of energy pills. It is a constant battle and balancing act. It has taken me many years to learn the balance and learn my limits. This is by no means an original idea but it’s a fantastic way to show how much someone with CFS or similar illnesses has to watch what they spend their energy on. I don’t want to make it seem all doom and gloom for you all, because in all honesty I wouldn’t trade my experience for anything. I have learnt so many life lessons that take other people years to even touch on, I’ve become a better person because of it and it has definitely shaped me and changed how I will live the rest of my life. But it is also real, and scary and horrible because there are no answers and there is no time limit and that makes the future a bit hazy and can be incredibly difficult. I do my utmost to stay positive about my life but I won’t lie- I have a lot of off days where I’m utterly miserable, but I always pick myself up and keep on keeping on because that’s all you can do.
I do my best and have a beautiful support network of friends and most importantly my wonderful family. CFS can be very isolating so it’s a special thing to have family and friends who do their absolute best to accommodate me and not make me feel like I’m a burden to them. And I think that is what having an awareness day is about- it’s not only the people who suffer from these illnesses but also the people who are around and care about you. I can’t thank my family enough for the things they do and the way they support me. The same goes for my friends. I went to an immunologist a few weeks ago and he asked me whether I had a good network of supportive friends, when I emphatically replied yes and that I couldn’t ask for better, more understanding people to have in my life he was surprised. Apparently I’m very lucky, as a lot of people lose friends or don’t have strong support from the ones they’ve got when they get diagnosed with a chronic illness. So I count my self very lucky for the family and friends in my life and want to say thank you because I know it’s not easy.
Headaches, sore muscles, nausea, concentration/memory difficulties and extreme fatigue are my symptoms, however CFS is not who I am. I have learnt and grown from my experiences and I can only hope that each day gets a little better until I’m up and running with the rest of you. But for now, I’m taking it day by day and staying as positive as I can. Today is better than yesterday so I’m happy for the moment!