To tweet, or not to tweet

When I started writing my blog I resolved to keep it as realistic to my life as possible, which meant the good the bad, and the stuff in between. It also means, not over-exaggerating things, and thinking before I tweet, or post! I am sure most of us are aware by now of the tendency a lot of people have to over-share, in part I think due to the false sense of intimacy that one can often have. We tend to forget about things like targeted advertising, which is when Facebook sells our info to advertisers, so that their ads get to the right people. Also because we are writing things down, perhaps it feels just like writing a letter or an email, but more people than just the friend(s) it was intended for read your updates, tweets, and posts. With all of that to think about, and perhaps a lot I’ve left out, how do we document what really goes on in life, especially with things like disability or chronic illness without being so negative you drag people down with you, or so polished that people think everything is ‘fine’ all the time?

 

‘One of those days’

Today was one of those days where I think, “how did I ever do all ‘this’ on my own for three years?? ‘This is getting up, a shower, getting dressing changing my stoma bag breakfast, taking my medication, getting ready to go out. Sounds simple enough? Try adding in it being ‘one of them mornings’ like everyone can have sometimes, plus the idiosyncrasies of an ill/disabled body, and all the aspects of having care, and there’s one toxic mix.

The morning started fairly well, as I got myself out of bed, with only a bit of crawling from bed as gingerly as possible. So far so good? Wrong! The (stoma) bag had ripped overnight, even though most of it had drained into the connecting night bag, meaning the ‘day bag was almost empty. Have explained all this to ‘specialist nurse’ who says it’s ‘just’ a manufacturing fault and I should use the other batch of bags. Sorry but I need every last one! This is also the only system I can use because it’s the only one with a night bag suitable for use with my type of stoma, when it’s likely to have to cope with undigested food and all the rest without getting blocked. So to do anything about the bag is a losing battle, unless I win the lottery… in which case I will commission the best in the country to deign me a bag for my type of stoma which is thin, durable, flexible, and kind to skin, as well as sticking to it, and has an accompanying night bag system than can come with my peculiarities. 

None of this being an option, we had to deal with what was in front of us, so we changed all the parts of the stoma bag before I showered. Unfortunately, the bag refused to stick, so we had to start over. This combined with other issues, meant my carer call was longer than 2 hours, just for a ‘morning call’ when I am only allocated an hour and a half! Obviously, I was utterly exhausted after all this and relieved to have a break before I went horse-riding. I started writing this, and got myself ready to go out. This means plenty of planning ahead.. a healthy lunch, that I can successful digest, plus my medication dispenser fondly known as the “UFO, my plastic beaker, and all the rest of the ‘stuff I can’t go anywhere without.

Today, transport went surprisingly smoothly — result! This time I used a social enterprise company. The only firm that will drive me the two miles while I’m in my electric wheelchair. Any other refuse, or I have to use a ‘normal’ taxi with my little manual chair, which makes me completely dependent on others. Having got to the social enterprise where I learn with no incident, it was time for my ‘team’ to swing into action. The woodwork shop have made me beautiful steps, complete with handrails to help me get to the ex police horse without being lifted like before (health and safety ‘MARE as I’m sure you’ll appreciate/! Now my friend helps me climb the steps and supports my trunk enough to stop me falling, while someone else drags my leg, now rendered immobile, over the back of the saddle, while someone else keeps the horses head still… mission accomplished!! Loved it today… was almost tropical weather, beautiful views, and great company. Me and the ‘team’ got me back into my chair without incident as well, which is an absolute JOY given how painful it was before. Don’t get me wrong, it is flippin’ painful now, but at least there are less steps in the process and less risk involved — HURRAH!

I ate my healthy lunch, and socialized without incident, making it home with home with help from the social enterprise again. So far so good… now to get on with this blog, writing for something else and catching up with things. I was totally wrong! I spent most of the afternoon waiting for the district nurses to arrive to help me with the bag. No one knows what to do about any of this as I am all out of options. As I sat here now, the bag the nurse(s) put on hasn’t stuck so my stomach is covered in my lunch or dinner. I am refusing to look. My skin around the stoma is already red-raw and throbbing so it’s unlikely to get better from this wither. Feels like a wasted afternoon and evening. I have between 30 mins and an hour to get more productive things done, starting now! Wish me luck… I think I might need it!