Last reply 1 year ago
A bit sick of bein SP sick sometimes

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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1 year ago

Hi there @mermaidia11, thanks for sharing the link. Fully agree, quality of life is paramount. The realisation of that is a positive that’s come out of diagnosis. Wild love affairs eh, you might have to post a little more about that sometime…… 😉

1 year ago

Totally agree with you. I always tell people that I have a full time job, Its called STAYING ALIVE😤😍

1 year ago

@mermaidia11, good piece of writing!!!! And so true! When I have fatigue, I can do nothing but flop, I’m sitting most of the time anyway. People often ask,’ what do you do all day?’ I never stop, is the answer. But everything takes soooo long: phone calls, messages, emails, loo trips which involve transferring from recliner to wh/ch on a trolley contraption, getting up in the morning etc, eating ( when your arms don’t work so well), ordering food etc, I could go,on : everything takes an age …… So that’s what i do all day. I’m not in pain like you,’so far, but I do get a spasming leg for which the MS nurse recommended Baclofen. One of the things to stimulate the brain is Echo Alexa: one can ask her questions and play games with her, or play music, radio, or listen to audio books…..
I can switch on/off lights, plugs from my iphone and see who’s at the door, unlock it and let them in. All from my iphone. By evening I’m really tired. Then I do it all again the next day and so,on. Keep at it gal……..xx

1 year ago

I’m with @vixen…wild love affairs, what are they? Just do what you can chick, friends and family will understand. X

1 year ago

@merfield – the things you use for phone to do are fascinating.

I am tagging @gpeps from Shift as he is leading a look into how people use tech to assist them on a day to day basis.

1 year ago

@merfield meant to ask you, how did you go on with mr council and your ‘illegal Ramos’ 😱😇😍

1 year ago

@dominics, I’d do more from my iphone if I could but need a 5 year old to set it up – glad you’re impressed. It’s ideal for those stuck in wh/chs xx
@grandma, thus far, not a peep from mr council, and I’ve now bought cones to reserve my parking space when my carer and I go out in the WAV. I’m prone to living on the edge😳💪🏻xx

1 year ago

Thanks for the link very true quality of life is essential my website for your interest and perusal.

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