Caught in a quandary

I decided that I had nothing to lose, I had what I needed here in the house and today, was as good a day, as any. Adam, of course, wasn’t so sure, he questioned, and double checked my knowledge of my drugs, then agreed it was a good idea. I thought that as I had enough drugs in the house, that it might be an idea, to run a test and for just 24 hours, to increase my slow release morphine. Last night and this morning, I have taken one extra 10 mg tablet. As I explained to Adam, I take 10 mg fast release boosters all the time, so a slow release tablet was going to affect me even less and, was perfectly safe. It’s kind of hard to know what, if anything that it might have done, as I had a bad nights sleep last night. Without a doubt, my pain levels are slightly lower, but I wouldn’t stand up and declare it’s a miracle, the pain is still too clearly there for my liking. The prolific numbness and pins and needles appear slightly less, so yes there is an improvement, what doesn’t fit was last night’s sleep.

Morphine is renowned for causing nightmares and vivid dreams. Between 9 pm and midnight last night, I had an odd vivid dream, I know that could be caused by anything, but when I was popping booster after booster a while ago, I had vivid dreams. When I forced myself, to cut them down, regardless of the pain levels, the dreams went away. Once more, I find myself unsure and without clear direction. I don’t have a big enough supply of spare tablets to keep testing for a few days, so I am left with that life long quandary, what to do for the best. Why does life have to be like this? Why can’t just for once, the choice be simple, straight forward and without problems? I have been living for months now, with my pain and sensations way above what any sane person would find acceptable, but I can’t find the answer to them. I am already on the two most common drugs prescribed for dealing with wild sensations, such as the ones I have. Gabapentin and Amitriptyline. Apparently, Amitriptyline is not effective above the dose I am already on, but it might be worth asking for the Gabapentin to be increased, as I’m not quite on the highest dosage.

It was in fact, one of the things that I discussed when I was at the pain clinic, but, wasn’t pursued at the time. I was in one of my stroppy confused states, and Adam wasn’t with me to assist. The Doctor managed to wind me up within minutes of my arrival, and as I got stressed, I became more and more confused, argumentative and desperate to escape. It started over my not having the memory to be able to tell him, when I last saw my Neurologist, then went rapidly downhill from there. Clearly, he had no understanding as to what MS does to the brain or the effect it has, on our ability to deal with situations we’re not comfortable in. Within two years of my diagnosis, they gathered the information to confirm that I have extensive brain damage. There was even then, clear signs that I had frontal lobe damage and it was causing emotional instability, especially when combined with anything to do with my memory, it is a bit like living with attention deficit disorder. Hence my inability to now deal with change or people I don’t know, the reason that Adam is now always my link to the outside world. In some ways, I wish that meeting had been filmed. It was a perfect example of my brain, spinning out of control and leaving me, far, far behind it. All that aside, an increase in my Gabapentin, might just be the answer I’m looking for and clearly worth discussing with my GP.

On New Years day, just as I did on Christmas Day, I spent the whole day drinking bucks fizz. It took me from when I got up, right through to the evening to drink an entire bottle of Cava, as Adam doesn’t touch alcohol at all these days. I know, before anyone says anything, that alcohol isn’t the answer to pain or anything else. Yet the combination of a booster pill, both morning and afternoon, with the steady, slowly drunk diluted wine, worked wonders for me. It was a bit like stepping back in time, as the closest I can put it, is to say that I felt as I did about six years ago. On New Years Day, after days of planning, I even managed to do some cooking. So OK, it doesn’t take a genius to cook scrambled egg, and I did drop one whole unopened egg on the floor, but I did it. I also cooked the steak, new potatoes, mushrooms, cauliflower, broccoli and white sauce, later in the day. All of which remained where it was meant to be. I haven’t even attempted to do such a thing for a really long time, and to make it, even more, surprising, I did it all from my wheelchair. Yes, I was left tired, but I enjoyed it. My self-medication got me through two days of activity, that would normally leave me in incredible pain, exhausted and unable to function, I was only half way there. I don’t know if there is some kind of answer hidden in all that, something that might help me in the future, but it did make a difference, one that anyone would have been able to see. There is no way that I could do it again today, as today, I am still paying for it.

Last night, I was back to my normal self, I went to the kitchen, to do nothing more than open a few salad pots. Once I had juggled them out of the fridge and picked them back up off the floor, I then  placed them on my lap, so I could wheel them to the counter. As my lap had a clear slope and was covered in velvet, why I thought they would stay there, I have no idea. Of course, they didn’t, I had to pick them up for a second time. Once safely positioned where no more accidents could take place, on a nice level surface, I started to open them all. First two, went fine, the third, landed up on the floor, this time without its container, it was still in my hand, the tomatoes, mozzarella and olive oil were all over the place, including over me. Nothing annoys me quite so much as wasted food, especially, when I had splashed out on what was supposed to be the last treat of the holiday season. I had to call Adam to rescue me this time, there was no way I could clean it all up, as I couldn’t even move my chair, without squashing mozzarella balls into the floor. My growing exhaustion was beginning to show, no matter how determined I was to keep going, my body was screaming stop, I had to leave Adam to complete what was supposed to be dinner before I ruined it all.

That is life with chronic illness, one day, you can appear almost normal, the next, you’re can appear totally useless. I know appearances have almost nothing to do with anything, but when you can pull something off, in front of those who matter to you, well you feel good.The things that suddenly become enjoyable and noteworthy when you are ill, are often the simplest of things. I know that most 11-year-olds could have done what I did on New Years Day, yet I am still left feeling proud, for doing what once I could have done without thought. Life takes on a whole new perspective, we become proud of doing almost nothing. Excited, about what most see as a chore and elated, despite getting those tiny things wrong, well it was only an egg. But then yesterday, a simple carton totally defeated me, not once, but over and over again. This world we live in is truly measured by things that make little, or no sense at all.


Please read my blog from 2 years ago today – 04/01/2014 – Getting to me and you

It appears I am having one of my do anything else I can find to do rather than what I should be doing. I woke early this morning, just before 6 am in pain and bursting for the loo, the second was easily…..



Fighting Change

Well here it is day one and already have an extra hour freed up as I usually wouldn’t even be at this point by now, 10:30 and starting my post is really early. Strange thing is though I am find it hard to push myself into not fiddling with things as I have this inbuilt part of me saying it’s OK no need to be in a hurry you have loads of time to spare. I suppose though once I have the new routine settled in my head that will vanish.

I had forgotten that this weekend and today are the September weekend, a local holiday which means my work has an accompanying sound in Adam snoring on the settee, that isn’t holding me up in anyway just putting me off as I keep thinking I have to wake him it’s Monday and he shouldn’t be here. His working week is one of the few things that keeps me on track with what day of the week it is, so he is adding to the feeling that things are just wrong today and not what I am used to. It amazes me just how much we are creatures of habit and how trying to change those habits is really hard. I suspect this is why most people when they have a holiday leave their homes and go somewhere else, stay at home and you continue as before, go somewhere new and you have no normal to base anything on so different is all that is possible. I used to always think I didn’t like holidays due just to the boredom factor, but I think also there is a big splash of MS being happiest when it know where it is and what it is doing at each minute of the day. Holidays mean being scarred a lot of the time, as it means not knowing when or where anything is or will happen.

I have noticed over the years that anyone who has any type of brain damage all seem to need routine and order. My Aunt worked with children with Downs Syndrome and I went to the school to help out on every Thursday afternoon, I had had Glandular Fever and wasn’t allowed to do any Sport for six months this meant I couldn’t take part in the weekly hockey, tennis and the rest of the things I hated, so arranged instead of just sitting their watching, to being allowed to help out in my Aunts school instead. I learned a lot in those afternoons and loved the time I was there as I had had like most, no contact with people like them, I don’t think there was one that I didn’t fall in love with and I remember their faces to this day. I also remember seeing in them a more extreme version of many things I see in myself now, add on my experience in the mental hospital I was in for a couple of months and what I have seen on TV and all of that knowledge tells me that it is a universal effect of brain damage. We can’t deal with anything that isn’t exactly the same as it always is. I don’t know what it is or why but there seems to be that universal fact, routine, normality, order are all required to maintain that feeling of safety. I suppose a Neurologist or a psychologist would be able to answer why we need it and why our minds freakout when it is changed, the more the brain is damaged the more it becomes important.

So what I am saying is I am once again in the two brain situation, part of me is fighting like made to keep normality, the past, the other half is pushing to make the change, it is also really odd being able to feel like an observer aware of all of it, all. Sometimes I think it would be easier on me if I couldn’t sit here and observe what is happening, just letting it happen and it is a strong temptation believe me. I have now managed to sit wondering for 40 mins which isn’t constructive activity no more time to fritter, this is and will be the start of the new even if I still want to drift back into yesterday.