In my first blog post, I said I wanted to address topics that might help friends and family so you don’t have to go over it. So, I have made a top ten mistruths and hidden realities of being ill for so long. Obviously, you may not have the same experience as I, but I think most would be relatable. These aren’t in any particular order, so let’s get on with my list, shall we?
- If asked how I am, nine times out of ten I say option one or two ” I’m fine thank you” “I am doing alright thank you, how are you?” When every day is a battle and I feel like poop.
- I feel guilty all the time. There is guilt for the burden I am on so many, the events and milestones I miss, the adjustments people have to make all the time. Most of all the guilt of not explaining sometimes because I’m too tired, I think because I say I’m fine people don’t get to see the cost daily life has.
- Every day I’m in pain one way or another. It never goes and is my constant companion.
- I tend to gloss over the reality. M.E/CFS is more than just being tired, but that’s the easiest way to explain it most of the time. But also, I unconsciously try to function “normally” when I’m seeing family and friends. That leads people to think I am “recovering.” Simply put it’s disheartening and isolating.
- I feel alone and isolated. I have the amazing support of my family; they don’t really understand what it is like to feel exactly like me. Even fellow warriors have variable symptoms and situations. It truly can be so isolating because it is so idiosyncratic.
- Not all Doctors and health professionals understand. I am lucky that I haven’t had a non- believer doctor to deal with, but even the teams trained and specialized just don’t get it. They do their best but they don’t know why M.E/CFS happens or what it means so to try and help or “treat” us is a tall order.
- I hate that I seem flaky, life shy or work shy. I simply cannot plan many things in advanced or stick to events. I’m not like that as a person, I like to be organized and stick to my word. That is one of the hardest uncertainties.
- I struggle when people take their health for granted. It’s the most precious thing we possess yet it is often forgotten. It’s one of the most priceless items left in the world. You can’t buy health regardless of the amount of money you spend in some cases.
- The smallest tasks are sometimes the hardest; often I stick to wearing pj’s all day because to get dressed would be all my energy for that day. Sometimes the choice is to eat or brush my hair. It’s the little things after all.
- People’s reactions to me and my illness or wheelchair typically are pity or ignorance. To try and keep myself mainly sane I attempt to focus on the positive which means I’ve had to train myself to ignore the comments like “Is there anything you can do to get her out of the wheelchair? I do hate to see the young in chairs.” That’s one option which whilst being well-meaning can come across hurtful and ruin the one or two days I make it out the house. Option two can range in severity, from the talking to the wheelchair pusher to total blanking of me even if I order or pay for something in a shop.
My intention isn’t to be snarky about any of the negative 10. I just want other experiencing any of these ten feel less alone. Plus if you find it funny when you are wearing an invisibility cloak then that’s me too! Life goes on, I think it’s time I spoke about the shielding we all do to protect ourselves and others close to us. Leave a comment below on the mistruths or realities you have.