I read this today and it really resonated.
As have all your posts recently. (I’ve been busy being sick and tired of all of it, to muster the energy to comment, which is prob a good thing, all things considered)
I’ll quote the pertinent points, for those who can’t be bothered going to the link; or are at the beginning of their journey, and hopefully won’t ever get to the place some of us veterans are at!
“Recently when I had to, yet again, bail on plans, I had a friend say they’d come over and just chill with me on the couch instead… to which I said I couldn’t. I think they were perplexed and even a little offended that I said no to the offer. While there are times that might work out, the truth of the matter, is that when I cancel on something or say I can’t come out, I’m not just sitting at home laying on the couch watching TV like a grade schooler who stayed home sick for the day.
There may be moments that are like that, but when I bail on plans or otherwise say I can’t come out, it’s not exactly that much of a picnic. Generally, wherever I am (bed or the couch), I’m likely struggling to get comfortable, moving from spot to spot. Alternating twisting and turning, sitting and standing, trying to somehow to get relief as pain and spasms shoot through my body. If that’s not the case, I’m likely fatigued, which is not the same as tired. It literally becomes hard to move, hard to speak, hard to make it to the bathroom or even change the channel. I may not have those issues the entire time, or I might, it’s unpredictable. Point is, I’m not exactly good company to others. I also feel pretty awkward with others seeing me like that.
. My week is made up of plenty of moments where I can’t really be all that productive. When I am productive, whether it’s trying to write a piece like this, or loading and unloading a dishwasher, or laundry, or any other task that might seem trivial to most people, it ends up taking a toll on me. Pretty much every small task I accomplish throughout my days requires that I rest and lay down for a bit afterwards. It’s not only frustrating, but it takes up time too. By the end of each day and especially the end of each week, I’m often left wondering “Where did all the time go? What did I get done?” It turns out that much of my time is spent recovering from whatever productive moments we have had
The reality for many with chronic illness is that being sick is a full time job. While we may not realize it, a lot of what we do or the way we do things during our day is based around our illness. That isn’t a sad thing, it’s doesn’t mean we’ve given up. It means that we’re actively fighting against our disease by making changes and adapting to the hand we’ve been given. It’s pretty hard for people to understand just how much of our time our illness takes from us. I’m the sick one and even I have difficulty understanding it. The fact of the matter is, being sick takes up time, while that time may seem unproductive to most people, I prefer to think of it as actively battling my illness. That battle doesn’t mean that I’m free and having a good time though, I’m still busy, just busy being sick.”
Suffice to say, I urge all not in our position yet, to enjoy life as best you can; take one day at a time; realise that the nhs don’t have all the answers/time/funding; and the social and benefits system is also weighted against you FYI…(oh
and take ldn to reset and support immune system in first instance, along with very healthy eating, exercise humour and Er ….wild love affairs!?!)
Life is short and Quality of life is paramount, along with a bit of understanding.
. I’m used to people telling me I look well. But “get rest” and “get well soon” does become tedious…
Just sayin..,.and hoping this or link will generate some understanding for those of us brave souls who need it most, and
seem to be understood the least…
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