The first tiny steps

Adam told me the other evening, as he held onto me while we were having a hug before I went to bed, that he could both see and feel the change in me. He said that I was once again standing, rather than slumping into him with my leg muscles shaking. I don’t know why, but having someone outside your own body, confirming just how you feel, really matters. I already felt so much better, and he was right about that, but just his words, gave me, that little extra boost. It isn’t just getting rid of the dreaded drug, Duloxetine, I honestly feel so different since I stepped up my Gabapentin as well. I didn’t want to vocalise the change too soon, I wanted to be sure, to know that what I was saying here, was spot on, and not just a wishful dream. Well, I can declare, without a doubt, that my PRMS pain is lowered, not to the level of six months ago, but it is definitely lower. Plus, I am not sitting here feeling the muscles throughout my legs going into spasm every couple of minutes, those constant painless contraction, hold and releases, are now just minor events, rather than a staggeringly annoying issues. Even some of the sensations that have been driving me up the wall have also lessened. I can actually feel my body, not just a mass of numbness, pins and needles, shooting pains and anything else my nerves could create. Several minutes, even up to 15 or 20 are now commonplace, when I am me, not wondering yet again, if, I will find my left foot anytime soon. Just having those gaps of normality, feels great.

The calmness I found the other day, seems to have stayed with me. It is hard to feel anything other than stressed when you aren’t yourself. You can relax, lie down or sit quietly as much as you want, but, there is always, this core of stress that eats away at you, feeding the circle of events that fills and takes over your life. I know that there will always be an element of stress, as when you live in a body, that takes pure joy, in frustrating you, again and again, you can’t escape it. But for the last few days, over all of it, there has been this wonderful calmness. As with so many things, I can find several reasons for it, so pinpointing the one, isn’t possible. To be honest, I don’t even want to analyse it too closely, as somethings, should just be enjoyed. One thing, I do know, is that the Gabapentin has made me more sleepy, but in a good way, not the clawing fatigue that I so often feel. I am more than content to lie down during the day if I need to, and I am happy enough to go with that, if, that’s what my body wants. I know, that it goes against my plan for this year, but I can put up with the demands to sleep, as long as everything else feels better, which it does.

It is just another of the things you have to get used to with chronic illness, almost everything is a compromise and has to be part of your life balance. So if the price I have to pay, for less pain and not spending every minute locked in a battle with my body, I can live with it. The only thing I am finding a little difficult is, it’s playing with my concentration. I am finding myself just stopping and drifting off into thoughts that are miles away from what I am doing. One of the array of subjects I have been musing on has been put there by a subject that appeared thanks to one of my recent posts, the whole palliative care issue. I haven’t been able to stop thinking about finding out about and sorting through what will happen in my final weeks and after I am gone. My mind for some reason has decided that it wants to start at the end and then work backwards to where I am now. I guess that’s because, I actually know what I want, well part of it anyway.

When my son Jeffery died, because my ex-husband was in the Navy and we were constantly moving around, we decided, thanks to what I now know was misinformation, to bury him in my hometown. What we had wanted, was for him to be cremated, then his ashes interred in my family plot. As it was just the ashes of a baby, the costs would be low, and unlike a body, we would have been given permission to do so. Jeffery died in Edinburgh and we were told by the Funeral Directors that this wasn’t possible. Because he was a baby, there wouldn’t be any ashes left, he would simply disappear. I couldn’t take that, the idea that there would be nothing, well it didn’t sit right with me. I even begged them, that if it were just one tiny speck, I wanted it, but they insisted there was nothing. We took the step of buying a cemetery plot, which was expensive, and left us in debt, but my baby wasn’t going to vanish. Last year, it came to light that there are of course ashes from a baby, there had been a collaboration between the crematoria and Funeral Directors, which meant that infants were cremated with adults, to save cost. Millions of parents had been stripped of their children, by people wanting to make money, and millions of their ashes, are now mixed in with total strangers. For me, I know own a plot, and I promised my son, that one day, I would be with him. I know it was a promise made in another life, but it’s a promise I don’t want to break, but it would mean I would be hundreds of miles from Adam.

I have only been to a crematorium once, and I hated everything about it. Personally, I never want to go through that again, dead or alive. So, I have a plan now of what I want. I don’t want a funeral, no one sitting in a crematorium, listening to music they don’t like. No one watching a coffin vanishing to tears, no people standing around in the cold, not knowing what to say, or even think. The cremation part can be done without a coffin, just a shroud, as there will be no one to see it. Once Adam has my ashes, I want them split, so that I can keep my promise, there is no need of ceremony at that point either. Half of them are to be placed with Jeffery and my name added to his stone, all of which, can be carried out, without anyone having to travel. With the rest, well this is when those who want to, can gather as saying goodbye, I know that it is all part of the grieving process and important to those still alive, so I wouldn’t remove it totally, just change the location and time. I will leave it in Adams’ hands, as to where they go, as I trust him and I hope that one day, he will join me. Where ever it is, those who choose to say goodbye can do so then. Each if they want, can scatter some of my ashes and say what they want, or just stand silent and say a simple goodbye. So that bit is sorted in my mind, I just need to start emailing those who know, and can tell me the logistics, and cost, of carrying it all out. I am not a traditional person, so I don’t want a traditional end.

Understandably, I don’t want a funeral director running things and grabbing money at every turn. I’ve lived through that once, I don’t want anyone else to. I have also made my mind up about something else, I don’t want Adam to tell my birth family until it is all over. I will write two letters, only to be posted once it is all done. One for my youngest brother, the only one to have spoken to me in the last 5 years, it was also the first time for an even longer period. He called to tell me my father was dead, and to get me on his side, should there be a legal battle later, which there wasn’t. I’ve not heard from him since.  The second is for my mother if she’s still alive. They turned their backs on me years ago and I feel I own them nothing more than this, and as neither came to our wedding, I don’t see why I should even ask them to this. Those who care about me, and I care about, are the only ones who matter. I will also, have to sort out my will, the details of which, I wrote about a couple of years ago. This may not be much, but it is a start and we all have to start somewhere.


Please read my blog from 2 years ago today – 16/01/2014 – What day? Are you sure?

Today I would like two new legs and a new pelvic please! My request for new parts to my body or even an entire new one has remained unfulfilled now for many, many years, but I really would like today’s one…..








Avoidance issues

I just spoke to my Doctor and it was a phone call that has left me rather angry. It appears that he miss read the letter from the pain clinic and their suggestions of how to change my pain meds. Right now I am taking 900mg of Gabapentin three times a day. When I phoned the doctor last week, it was to see if I could get this raised, as I was sure that there was still room to increase it. I had this vague memory that when I was at the pain clinic, that they said this was one of the options that I had. I was rather confused when the doctor said that I was already on a dose that is above the recommended and that I clearly couldn’t have any more than that. It appears that the clinic recommended that it was raised to 1200mg three times a day, that was 18 months ago. So as of lunchtime today, I will be taking the new dose for a period of two weeks to see if it is enough to bring my pain under control. If it doesn’t, apparently, they also suggested that we try changing it to Pregabalin if that fails. I’m angry because the way he told me this today, it sounds as though I should have had the raised dose of Gabapentin ages ago, after all, I went to the pain clinic because my pain was rising. My GP, at the time, wanted to raise my Morphine, by I chose to stick to using the booster pills, as they gave me greater personal control. It has worked fine until the last six months, when I have struggled, not wanting to mention it, because of my fear of having to take even more Morphine. Normally, he is a great doctor and I have no problem with his care of me, but this, well this has angered me. I really wish that when a consultant writes to a GP, that they also sent a copy of the letter, to the patient, that way, I would have known all this and not relied on his memory. It’s totally unfair to ask a GP to remember every detail, of every patient that they have.

Over the last few years, all the old-fashioned paper notes have been transferred to computer systems. Understandably, but unfortunately, the GP system is totally separate from the hospitals one. For a very long time now we have had the right to see our notes on request, which means that you have to go to them, to be able to look through our notes. Being housebound, means that despite having the right, I can’t carry that right out. With it all being computerised, I personally believe that we should all be issued with log-ins, and be able to look at our notes whenever we choose. For someone, like me, who has a complex array of conditions, it would mean that I could keep track of all notes added, all suggestions, and what has already been tried. Consultant only writes to GP’s, either if they have prescribed a new drug, or when they have signed you back into the care of you own GP. Of course, GP’s only ever write to Consultants, when they have a patient they want them to see. The result is, that much is missed by both sides. I wouldn’t have missed these suggestions and I could have spent my time, assessing what might work best for me, plus I would be armed with all the details, that I have long since forgotten. I have forgotten so much, that different doctors ask me about, like the names of the drugs I have already tried, when and what one doctor said about something and so on. I have the time to arm myself with the info, that might make my future treatment, just that bit better. Although I have great faith in my doctors, both my GP and those I see at the hospital, the gap between the two is becoming, more and more visible as time goes on. It’s a gap that I feel I could fill, as could many with multiple conditions.

Clearly, from what I have just written there, I have removed the Duloxetine from medicine list and returned to my normal dose of Amitriptyline. Last night, for the first time since I took that first horrid little capsule, I slept right through the night until at 7:30, when I had to get up to go to the loo. I know I could have gone back to bed, but I decided to stay up, as not only had I slept through the night, but I also actually felt more awake than I had for days. The last four nights supplied only half the night in a deep sleep, and the other half, in a fitful half world, as unpleasant as the days that followed. Today, I feel like me, and that is a really good feeling. To me, I have just wasted 4 days of my life, because of my doctors mistake, as when I spoke to him last week, my request was for an increase in my Gabapentin, not a new drug, that would shred me into pieces. Mistakes happen, but that doesn’t make them any more pleasant.

Those who read my post from two days ago will know, that I had one of those horrid light bulb moments. The words “palliative care” appeared and I was hit between the eyes, by the fact I knew that the day I went onto Morphine, all though they didn’t say it, that I was at the end of the road. It’s amazing how when promoted to think of our care in one way, rather than another, that we happily carry on kidding ourselves. I remember at the time, briefly thinking this is the end, but my doctor waffled on about how there were still options and possibilities, although they didn’t name them. Clearly, their waffle was intended to pull me away from thinking I had reached the point when palliative care, something which is normally linked with the end of life care, was needed, and it worked, partially. Yesterday, that wall crumbled and I spotted the unspoken truth. Oddly, rather than pulling me down, it has left me in a very calm and subdued state, almost as though it removed not just a wall, but one that had spikes on its top. I feel as though the confusion of questions that didn’t quite make sense, are starting to solidify and showing the roots I need to go down, to put them to rest.

I have also been given a few pointers by several different very kind people, I know it’s not like I can make a list, this is an organic process, one that I will, of course, share here. I have also realised, that whether Adam wants to talk about it or not, he will have too at some point, just as I am going to have to get involved with groups like social workers, who I have body swerved at every turn. I’m getting ahead of myself, they aren’t top of my list, but they are on it, yes, I’m still avoiding them, but just like death, there are something’s in life, we can’t avoid forever.


Please read my blog from 2 years ago today – 13/01/2014 – Spasms are not what you think

I woke this morning on a bed that didn’t have the upper mattress hanging 3 inches over the edge of the lower and an elevator that lifted both sided of the mattresses at the same time. Adam and I pulled the webbing…..

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…..