Why I stopped saying what I have is CFS

Hey loves,

I thought I'd do a little post about why I'm suddenly referring to having ME a lot rather than calling it CFS. A small percentage of people say the two are different things, with ME being a more serious condition than CFS, but I'm not going down that track as I don't have the energy to argue - lololol.

I mention my health in passing here or there, talking about how I'm having trouble sleeping or having energy problems, but I stopped doing dedicated health posts in that period where I lost myself and became concerned with being more of a 'popular' blogger (whatever the hell that is!). I didn't think chronic illness was at all sexy and worried about turning people off. Well if it does they're not worth having around anyway. It's not sexy but it is my life so of course I'll talk about it.

The reason I now refer to myself as having ME is because 'chronic fatigue syndrome' goes nowhere near describing the hell of the illness. It is a useless description for a complex, debilitating complaint. It's not tiredness, it's an overwhelming fatigue which can make you pass out on your feet (which has happened to me a couple of times). It can make you walk and talk with the coordination of a drunk. It barely gets better with rest, and you can be totally fine one minute and be crying through exhaustion a minute later. It's like flicking a switch.

Side story - James and I met in April 2003 and I got symptoms throughout 2007, but by September they were marked enough for me know something was really wrong. By January 2008 I was on the verge of a nervous breakdown and had to leave work, and by April 2008 my symptoms were completely life altering and the pain was physically disabling. My 34th birthday dawned with me unable to lift my feet off the ground to walk, and I dragged my legs about one at a time like a lame dog, inch after tearful inch. James didn't understand. I had so many falls, so many accidents, yet he pushed me so hard all the time to do more and I felt like we were talking different languages. I'd be smothered in bruises from falls and had even put my back out from a ready bad fall and he just wasn't getting it. He couldn't see the truth in front of him, or he didn't want to. He's the kind of person who doesn't listen to what you're telling him - he has to see it happen for himself, and usually several times. (Damn science brained git!)

We had a very difficult transition. When he finally got it we'd had a 9 hour coach trip home from Wales, during which I'd been really ill because of travel sickness. It was only 3 days since the coach trip outbound so I was completely wiped out. When we got to London we got the tube from Golders Green to central London as James couldn't be bothered to wait for the coach to get to central London for some reason unbeknownst to me - man logic. ;) We were going up a flight of stairs with our heavy backpacks on when I fell UP the stairs in the tube station. I ended up bruised really badly on both legs, and I just stood and bawled my eyes out in the middle of the concourse once I managed to walk up the rest of the stairs. I remember pleading with him: "NOW do you see?!" I guess he didn't want to admit the woman he loved was changing before his eyes. Loss isn't just felt by the person with the illness. That was in December 2008, so it had been a long process for him to get it, and those were really lonely days. We can laugh about it now, but it really hurt at the time and I guess it still does, or I wouldn't mention it now.

I didn't get my diagnosis till 2011, so the support of James was really important. There was one person who kept me alive through all those dark days, my friend Lisa. She also has Fibro and ME, and she knew from the start that I did too. If not for her I'm sure I wouldn't be alive to tell you this story. The best thing you can do for a person who's chronically ill - even if they're not diagnosed - is tell them you believe them. You can keep that person alive with your support. The early days of a life-changing illness are terrifying - your life gets turned on its head. A person might lose their job, they might lose their mobility. They might even lose their partner, and they sure as hell might lose their sanity, too.

So, going back to the main part of the post - sometimes the fatigue is delayed and I think I've escaped the aftereffects of a 'big day' (one where I leave the house) but the next day it knocks me for six. A really active day like going to London for a blogger event can set me back weeks. So when you say 'chronic fatigue' and people say 'Oh, everyone gets tired!' I roll my eyes hard and want to tell them that yes, if they've been so tired they passed out and woke up with the imprint of a radiator slammed into their forehead or came round with their head in the bloody road then yes, they know my kinda tired. ;) Otherwise shuddafuggup.

But the fatigue is just a small part. It's constant infections - sties or conjunctivitis, chest infections, throat infections, UTIs. It can be early menopause, sleep disturbances (hello!), muscle pains, cold and flu symptoms, dizziness and nausea, memory loss, headaches, confusion, heavy sweating, palpitations, swollen painful glands, IBS, depression, sensitivity to light, noise, movement and smells, trouble keeping an even temperature and so on.

It affects every aspect of my life along with the Fibromyalgia, so no, CFS doesn't cover it at all. And in the 8 and a bit years I've had Fibro and ME, it's gotten worse year on year to the point where I wonder if I'll end up totally bed-bound or in a wheelchair like some ME patients are. But then I could get hit by a bus and drop down dead tomorrow so it's best not to plan too far ahead anyway. Hahaha. Black humour helps me cope. :) Everybody struggles with something, be it mental or physical health or life challenges, so this isn't the woe-is-me Olympics. Some days are better than others, hell some weeks or months are better than others. There are flare ups and other times are better so I just take it day by day. There are SO many people out there struggling with things that other people have no clue about, so this post is dedicated to everyone out there with invisible illnesses who are trying to live their life and are kinda surviving instead.

Thanks for reading.
Leah xoxo

No comments