Ignoring my disability

I started peeing for Britain yesterday evening, I had noticed over the last few days that I haven’t really been going to the loo that much, but I have been so wound up about the other end, that I didn’t put that much thought into it. Adam had taken an early shower and just after he stepped into it, I knew that I needed to go and I just had to wait. No matter how desperate I am, I just can’t go to the loo with him in there, I know a lot of couples don’t think anything of it, but to me, well there are something in life that are still private. When he came out of the bathroom, I started to stand and just like the night before, I was struck with the same pain in my lower right-hand side and straightening up was a slow and gradual process. When I got to the loo, I once again found myself with what I can only describe as having more than one bladder. I know full well that I have issues, ones that mean I should be using self-catheters at least 4 times a day, but I usually don’t. To be honest, I manage without getting all the bladder infections they keep warning me about and as long as I do, well I don’t see why I really need them, surely it is better to not keep putting plastic tubes inside of me unless there is no other choice left. I think in the last three years I have two infections, maybe three, but not enough to have to put myself through using a catheter every time I go to the loo.

I know that all the catheters are sterile and that when used correctly aren’t meant to cause any problems, but I also knew from my own experience that I had more infections in the year I did use them as directed than I have since I stopped them. Usually, if I am having problems emptying my bladder for a few days, I will use one, but I haven’t been getting the signals I normally do to have suspected there was anything wrong. My bladder didn’t feel full and even though I was passing far less than normal, well I put that down to the fact that the medication I am taking is meant to pull fluid into my bowel, so it seemed logical, in a round about way. Since Adam came out of his shower to now, I have been to the loo 5 times, including in the middle of the night and every single time it has been like I have three or four bladders, each one emptying in turn with a short break in between and each containing as much fluid as one alone should, even when over full. This isn’t the first time that I have experienced this, it happened a few months ago and lasted for a few days, then it just went back to normal. I have for over 10 years now had to take diuretics, as I collect fluid all over my body, it keeps swelling like some kind of mad balloon, especially my ankles and feet. Oddly I haven’t had any problems with that at all for several months and I had actually stopped taking the medication altogether, I don’t know what made me even think about it, but those changes happened at about the same time as my bowels started to go into total shutdown. I can’t quite work out what the connection is, other than the physical location within my body, but it feels too much of a coincidence to ignore it.

I think I just met the slowest delivery man on earth, the doorbell rang at five past 10 and as expected it was our shopping from Asda’s. It is now 10:55 and I have just locked up the front door again, well sort of, for some odd reason I can get the key to turn at all in the lower lock, another good reason for having two. While he was going up and down the stairs bringing up the boxes, I managed to put away all the fridge and freezer stuff, plus some other bits and pieces I would normally leave for Adam. I suppose I could have just sat on my perching stool or even sat in the living room, but there is one huge issue with that, I am human. It doesn’t matter how many years I have been disabled, I have never managed to deal with a situation like that, how does anyone just sit somewhere where they can’t fully see what is going on and knowingly keep these guys who are on a tight schedule, normally, waiting whilst I wonder back and forward in response to their knocking. For those who are thinking, well why not just leave the door open, easy, heat costs a lot and every last drop of ours would now be outside. Every noise I heard, I was off into the hallway, looking out through the door glass to see if he was there with the next box of goodies, so I could let him in with it. I couldn’t possibly tell you how far I walked in that hour, all I know is that my limbs now have that distinct heavy, half dead feeling.

I find it so hard to let my problems impact on others, I suppose that is totally down to my upbringing, manners once drilled into your head, are almost impossible to work against. Even with Adam I find it hard to just ask him to do the things that I can’t, he is more than happy to do anything for me, but inside me there is always this battle raging one that screams, don’t be so lazy. Becoming disabled isn’t something that happens over night, well it might physically, but that doesn’t mean that it does in ourselves. I may have learned what I can and can’t do physically and mentally, but along with the old knowledge that actually isn’t true any long, that I would be quicker to do it myself are all the life protocols that can’t just be changed or forgotten. It doesn’t matter if you are talking about fetching a glass of coke, or redecorating a room, the whole mental battle and argument that comes with them, is quite honestly mind blowing. It doesn’t take any of us years to learn that if something hurts or is now totally impossible, well don’t do it, but making it lie calmly in acceptance in our heads, is a whole other story. I don’t know why the delivery man was so slow, but I wasn’t going to let the reason he was being held up even longer, to be me.

I just lost another 40 minutes, I am guessing today is just not going to go anywhere near they way I had planned, one of those days when it would probably be best for me to throw the whole daily plan out the window and just do what I can, as I can. I really do love my friend Jake, but on the days that he isn’t working, he loves to just chat on the phone, which to be honest I do enjoy, it was just bad timing today, as I said, one of those days.


Please read my blog from 2 years ago today – 17/02/13 – A need to run

I’m in a rather sort of dreamy not with it mood today, every time I stop doing something I drift off in a sort of daydream, not bothered by my lack of activity or my ability to pull myself back to what I am doing. Days like this usually mean I will land up so behind with my daily list……

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