There are many times over the years that I will battle the darkest enemy of all. Harder than the pain and disability combined is the feeling of uselessness; Complete and utter uselessness.
Laying here people might assume that this is not a bad life. Some misguided souls might even think sitting or laying around the house is their idea of heaven. It isn’t. Not for me anyway. I hate it.
When you reach a point in your health where all you can manage is to bath yourself, eat and maybe go online, it is truly soul destroying. Especially when most people in the world can do far more than this.
I fight the feelings of uselessness harder than I fight the waves of pain. Much harder. It will bring me to tears faster and longer than any physical pain I have ever known… Emotional pain can be so much harder to bare.
I guess that is why so many people drink, take drugs, smoke, gamble, exercise, shop and do other activities to control their inner demons and distract themselves. I think addictions can come from a place of sheer frustration and emotional pain. No one wants to feel this much emotional pain constantly.
Years ago, whenever I felt worried, anxious or stressed my mother would always say go do something. Keep busy! I am sure it was valuable advice. A bit harder to do now, given my current circumstances. But her words ring loud and strong even now.
In the year leading up to her final cancer battle she struggled to do much at all herself, although at the time I didn’t see this as I hurried around in my roles and career, I am sure she began to struggle with that advice herself.
I see so many things different now.
Doing something is definitely a gift. Physical abilities are a blessing that so many take for granted and are quick to dismiss or judge. Being able to do nothing is some of the hardest things in the world to do.
Years ago the list of things I could do and my abilities far outweighed the things I couldn’t do. Now the opposite is true. It’s cruel.
I find it particularly painful when people and even doctors keep suggesting to make sure you remain as physical as possible. Does it never occur to them that we are?!?! They seem to not have the slightest idea of what they are talking about. I guess they don’t. As far as medicine and Autoimmune diseases are concerned we may as well be living in the dark ages with witch doctors and leeches.
It is hard to watch my husband do something without instinctively wanting to be involved and help. It’s automatic. Even after all these years.
I willingly inflict further pain and suffering on myself just so I can do something. Anything. No matter how small. Like writing this post.
Living apart from the rest of the world and isolated like this makes it slightly easier to live with disabilities as I don’t have to see so many others doing things effortlessly and I don’t feel so odd within my own limitations. I don’t feel as useless.
Although everyday tasks still serve to remind me how much things have changed. I try to block it out. I try to not feel it. Not dwell on the uselessness.
Can it get worse? Yes. Will it get worse? I don’t know.
So I am doing my best to further develop better coping skills for these feelings. These terrible heavy feelings. These desperately hopeless and painful feelings of uselessness.
I keep trying.