I’m just waiting for the phone to ring as I have made my phone calls to both the doctor and the MS nurse. Of course, just because it has to be the way my life works, my MS nurse who I normally see once a year and never call, is on holiday today and won’t be back until tomorrow and my doctors call back, well that’s like working out the length of a piece of string without seeing it, sometime today. I really hate this waiting for calls, as soon as I put the phone down, well my body decided that it needed to go to the loo, my brain went into this stupid spin of should I go or should I wait. So OK that is stupid, but I never have the luck of getting the timings of things like this right, sods law always says that phones and doorbells ring when every you aren’t there and available to answer them. This time it didn’t, but that is exactly how my brain works these days, it creates panic points when there is no need to panic at all. It’s odd how when your health goes, your brain seems to want to make your situation harder, it is almost as though there aren’t enough things already going wrong in your life, that it has to start creating them. I don’t know why, but it runs over time with what if’s and what next’s, I guess it is all part of the fact you begin to feel useless and everything is harder than it has to be, so why would anything happen the way you want it to. Don’t get me wrong, I haven’t got the disastrous belief that everything is against me or anything like that, it is just that when so little of what you want is possible and more and more seems to be taken away all the time, well you can’t help feeling everything else is going to go as well, it just a matter of when.
Yesterday I decided that I was right, it’s was time that I asked Adam to help me with my meds, right now I don’t know exactly how we are going to do this, but we have put together a list of what all my meds are and when they are each taken. I can’t see right now what his thinking is or how it is going to make a difference to taking them in the morning as he is at work before I take them but it will make a difference to the evening ones, I shouldn’t miss any of them as he is always in the kitchen in the evening and can easily keep an eye on what I am taking. I never thought that the day would come that I couldn’t do something as simple as take the right meds, I foresaw a time that simply because of lack of mobility that it would be easier for him to fetch them for me, but never that I would be able to be staring at what I take every day and wouldn’t be able to see that I had something missing. Mind you, I never thought that I would be able to add in unrequired or unconnected words to a sentence without being able to see it even when reading it back, but it happens all the time. Well not so much in the past couple of months, I found a new free program called Grammarly it actually constantly checks everything to make sure it makes some sort of sense, I am sure it will miss the odd one, but unlike a simple spell checker it checks that things are grammatically correct as well. I may not always agree with it, but it does help a lot and works with loads of programs, even those you might not expect. If only it were so simple, just to get someone to write a program that corrects all the things I now get wrong.
It is sometimes hard I know for others to understand what is happening inside my head, logic says that all I need are simple reminders, alarms set up to tell me to do things, trays of tablets to take at the right time and so on, but none of that works any longer. It sometimes feels as though I have two brains, one that still works on the logical steps in life, that still believes in writing a to-do list and routines. The other is filled with these huge gaps and voids where everything just doesn’t happen and it whole purpose is to chuck these gaps and voids into the middle of normality. The results, well it’s these blind spots, where I can’t even see what is wrong, occasionally the gap isn’t positioned perfectly and then I have this vague recognition that something isn’t quite right, but I can’t pinpoint just what it is. One of two things then happens, either the misalignment is so bad that eventually reality manages to get through and the error is corrected or the gap settles correctly over its target and the error is either there forever or until something or someone outside of me corrects it. On top of that, well there is what has been a permanent issue for a very long time, where I receive the reminder to take my tablets for example, but I am distracted, that distraction, well it overwrites the reminder and again it is gone. The most frustrating thing of all is the fact that I can write down a detailed description of what is happening, but I can do nothing about it and that isn’t logical.
I am very aware that like everything else in the last couple of months is getting worse and just like all the other things, it is making my life tougher and tougher and is putting more and more onto Adam, who doesn’t need any more at the minute. For about a year, Adam has had an alarm set on his mobile phone for just before 8pm, this is so I take my meds at the right time, but should that alarm sound too soon as I want to watch the end of the program we are watching, or if he doesn’t remind me to go when it ends, I will forget. It only takes seconds, so if he turns the alarm off thinking I have heard it and I haven’t and he is then distracted by something on his phone or laptop, well I just don’t get my meds until he realises, or on the odd occasion, I do. All the prompts in the world, even the human ones are fallible, there aren’t any clear cut answers or simple steps that I or we can take and worst of all, this is probably on the surface one of the smallest issues I have, but very possibly in time the most important one. Pain, discomfort, fatigue or any but one of the other symptoms I could list, don’t affect anyone other than me, right now memory is the only one that affect anyone outside of my body as another human brain, is the only answer that stands a chance of working.
Forgetting things, losing your memory, not seeing things that right in front of you, they are all tiny things that other people brush aside and say “it doesn’t really matter”. That is rubbish, it matters and matters more than you would believe until it happens to you. We are our minds, when they fail, even if those failures are small, they affect everything else, miss a tablet, miss the opportunity to make yourself better for a while longer. Miss a tablet, miss the chance of a good nights sleep, without hours of lying there trying to work out what is wrong with you, why your pain is so high and why you can’t sleep. Miss a tablet, your bowels start to clog and you’re in pain and discomfort for days. Miss a tablet and you rip apart the lining of your stomach, creating new problems that could have been avoided. But it’s not just tablets, it’s showers, it’s food, it going to the loo, it’s all the things that we say people do without thought, trust me without thought we do nothing and I know that for a fact.
Read my blog from 2 years ago today – 8/03/13 – It’s so good > http://bit.ly/XxBsOS
I sometimes worry that what I write about here can appear to be a somewhat bleak picture of the realities of chronic illness, and to be fair on some levels it is impossible to not paint things in that light. None of us would put at the top of a list of things to achieve in life as being chronically ill and housebound, but it really isn’t all as bad as your or even my imagination………