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…..



So what’s the big deal

Last weeks problem of missed medications happened again, but this time it was an absolute classic. For months now Adam has had an alarm set so that I take my meds at 8pm, ready to go to bed at 9, everything has been working fine, except last weekend when Adam switched the alarm off without saying anything, he assumed that I had heard it just as he did and that I knew what it meant. I had heard it, but as he picked the phone up and hadn’t said anything, I didn’t make the connection and just sat there enjoying the TV, luckily he realised at 8:30 that I hadn’t been anywhere. Last night we both heard it and headed to the kitchen, opened the draw where all my in use medications stay and sorted out all my tablets and took them, then returned to watch TV until bed time. I was lying in bed feeling really odd, agitated and with huge areas of mega sized pins and needles, others simply on fire, over and over again I relaxed all my muscles, only to find seconds later they were all tensed up again, making the electrical nerve pain worse than I had felt it for months, then it clicked, I had taken the tablets, but I hadn’t taken my Amitriptyline which comes in liquid form. Last week I managed to go two days without taking my Dulcoease, simply because I hadn’t switched over the empty strip for a full one, I just throw the old one out and despite looking at my pile of pills and knowing something was missing, I just couldn’t work it out. I seem to be determined at the minute to screw my meds up in anyway I can and short of Adam giving them to me, hard as he is either at work or asleep when I take the none evening doses, there isn’t a way round this one. Pill trays stopped working long ago and don’t hold liquids, which I have two of, nor do they help when you don’t change over the empty strips of tablets. This is another of the tricks that no one warns you about that any condition that affects your brain will do, your mind will seek out and find any way possible of screwing up your life up that it can. If I sat down and tried to come up with a list of reasons why drugs might fail to be taken at the right time, in the right quantity or just not taken at all, I wouldn’t come up with half the things my lesions seem to have found and every time I get control, it just finds a new way of messing around with my mental connections to make that fail as well. You never see the funny side at the time, as at the time you have just gone through pain and discomfort that wasn’t necessary, but if I couldn’t laugh at my own idiotic mind, it really would drive me mad.

Amitriptyline, especially in the liquid form, is a medication that I have always found works quite quickly, easily within 15 minutes it had reached the majority of my body, but as always and I am sure this is a spot of madness, I have to wriggle my fingers and toes for it to reach their very tips. I actually don’t think it has anything to do with getting the drug to those far flung points, what I believe is happening is quite simply is that the nerves are to busy causing havoc to listen to anything else, once moved, they reconnect to the main frame and shut up. I have noticed more and more over the years that once some part starts feeling in one set way, be it direct pain, or a sensation like frozen, it seems to have a cell memory if you like, as in that will be what I feel the most in that set space. Every part of me seems to have it’s pet favourite, yes it will have other sensations as well, but they are always short lived and habit brings it back to it’s own speciality. The only thing that makes sense of it to me is that the damage done in that area promotes those sensations, so if it is the left side of the nerve that has suffered demyelination, one thing is causes, the right another, or even down to the thickness of the sheath left.

On the surface sensation symptoms seem to sound so trivial, well what is the big deal about pins and needles, we have all had them at some point in our lives haven’t we, well that was what I thought. I had been living with what I believe now probably where heightened levels, due to my earlier form of RRMS, but when it changed to PRMS all the sensations I had convinced myself were “normal”, hadn’t really prepared me for what lay ahead. To be far it is only in the last 5 years that they started moving off the scale, not only do they last for as long as they choose to, they slowly get more and more intense, no longer the gentle tingling sensation that makes you want to shake the affected limb or stand up, what ever feels like it will work at the time, they get sharper and sharper, slowly spreading over larger areas as well. Last night all my limbs were being stabbed and gouged at, with tingling around in the back ground. Areas can start to itch for no reason, but when you scratch at it, you find you have reached for the wrong place, where you are feeling it, isn’t where it is. Your skin can burn, freeze and spark, or simply go numb. It can feel as though it is sliding off your bones, or is suddenly so tight you believe it will split and these are just the sensations that appear on your skin, that I can think of just now, there is a whole new list for what happens under it. Life is spent scratching at nothing, being in pain yet, totally numb in the same place, there is no rhyme nor reason to what happens, no triggers and no real solutions. Creams and balms do nothing, washing or rubbing even less, it is a case of what works then, not the last time, or the next, now is the puzzle, later can wait.

Last night my skin was going mad, there were spasms and lightening bolts of pain firing in every direction they could find, yet it took me 20 minutes to work out why. It wasn’t the first time I have done something like this and I know with my brain flying solo, that it won’t be the last, but you would think that I would learn and recognise, well maybe I have, it’s just I forgot. Sometimes I wish they could turn the whole lot of, just disconnect all sensation and give me peace, but clearly that can’t be done as I don’t want to lie like a vegetable for the rest of my life, no nerves, no brain, no brain, no body, no life. 20 mls of medicine, that’s all it takes to shut it up, for now, 20mls once a day, any more doesn’t work any better and it’s never totally turned off, it can’t be, so there’s no answer, just to live with it and hope that it doesn’t get any worse, or that it learns to over ride the medication, as what then, they don’t have the answer any more than they do to so much else.

Sensations, tiny little things that once brought pleasure, experience, learning and even fun, all lost, all changed, all turned into something else, something you never thought they could be. Slowly over the years, just like the location of an itch has got lost in the wiring, so have all sensations, touch isn’t what it once was. Some days what should be a gentle brush of your skin, turns itself in to fire on the surface and ice through veins. There is no longer any pleasure or joy from a lover, as their love is no longer translated in to pleasure, pain is all that remains. The spray of a strong shower, no longer feels cleansing and refreshing, now they are cutting deep into your brain, each drop shooting through you like a lightening bolt. Water has to cover as a blanket from a tap, not cascade like the rain, as when it touches you, who knows what it will be then. Some days, just occasionally it all works, some days it feels like life is still there to be felt, to be enjoyed and cherished, but feelings don’t last, sensations can only be held at bay, not fixed, rewired or corrected. For now I still remember how things where, what a soft carpet felt under my bare foot, how it was soft and cradled, not hard or jaggy, I remember every touch, every surface and when things are good I get to feel then again, it isn’t what has replaced them that hurts, what hurts is I can’t choose through mind or drugs to be free to feel what should be there, I can’t even secure a 5 minute window as like pain, sensations change second by second.


Please read my blog from 2 years ago today – 24/11/12 – Endoscopy appointment

My appointment for my endoscopy has arrived, it is on Friday are 1pm. When the envelope arrived I knew as I had an endoscopy about 8 years ago that the big packs where the horrid mix that I have to drink the night before and I thought that the booklet that arrived would simply be to tell my what would happen and when to take the gunk, I nearly put it into…..

Burning nerves

There never seems to be a reason, something that you can pin a change to, but I know in the last days or maybe even weeks, that although my pain levels are steady the other symptoms, sensations have increased. I wrote the other day how my hands are burning and there are lightening sharp shards of pain dancing through them, I don’t know why I just wrote about my hands, maybe because well they are the part of me that moves the most these days. The fact is the level of tingling, pins and needles, plus the worst of all for me, burning has returned in my feet and at times in various parts of my body. I have been luck for a while now that they were very much transient symptoms, years ago they were the first symptoms that told me something had changed and pushed me to insisting I was going to have a diagnosis, a name to what was happening to me. So to find they have returned again and in such a constant form is not just annoying but also tinged with a little worry.

Finding your skin burning constantly, is really such a strange sensation if you have never had it before, unlike pins and needles, or even tingling that all of us have had at some time or other, I for one had never felt anything like it. There is only one word for it and that is burning, but for me it is nothing like the pain left once you have burned yourself, it’s closer to the burning you would get from really bad sunburn, or even the sensation that playing for too long in the snow leaves, but still not exactly the same. There is an intensity about it that is actually destressing as there is absolutely no way of relieving it, no creams or application of anything cold or even hot ever makes the slightest difference, it is just there. I actually remember clearly the day I decided I had had enough and the doctors were going to listen, I was sat on the bus heading to work, both my feet were held off the floor as just touching them to cold metal floor was too painful. I had my left arm cradled by my right trying to relieve the pain, my head was leaning on the window and I felt a tear on my cheek, I felt so pathetic. I sat there just wishing the pain would go and that I could just go home to my bed, how was I supposed to work feeling like that, but I had felt just like that for weeks, no break, no period so bad that I couldn’t function as I had had in the past, but strangely the unending feeling of inability to everything, was worse. I knew at that second that I had to try, just once more as living like that with no answers, was just too much. I have the answers but that is about all that has changed, my feet still don’t want to be on the floor.

For years now these sort of pains have been held in check, I have been taking amitriptyline for day they diagnosed my Fibro, a diagnosis that came before the MS, both cause this sort of thing so it’s hard to know which is which. There appears to be little that they can do about it, it is caused by the nerves miss firing and just doesn’t seem to respond to treatment like other pains, as trust me even pins and needles can become painful, the longer you have it, the bigger those pins and needles become. It isn’t even as simple as raising the dose of amitriptyline as I am already on 15mls at night and they say that increasing it seldom helps at all, being me I would still like to try, as everybody is different.

Yesterday was one of those that I just never managed to catch up with myself, the whole day was running late and stayed that way. I should have been sorting through the shopping at this point, but I never actually found the time to put the order in, I still haven’t, but I know I have to find time today. I know it sounds silly from someone who is at home all the time, to not have the time to do something so simple, but it happens all to often, the day just vanishes and I have no excuse for it at all. I do seem to be sitting doing nothing more frequently, I just seem to slip into a state of none activity, I’m sat staring at the computer screen, doing nothing, not reading or typing just staring in silence. I don’t even seem to have any thoughts going on to fill that time, just silence. Then suddenly I click back into action, but I have forgotten what I was doing and have to double check, reread or what ever, taking more time before I can move on. It’s almost like being asleep with my eyes open, if that makes any sense to anyone, because it doesn’t to me.

18/02/12 Ticking the boxes >

Together for ever

Well today is fun, I’ve mentioned a few times recently that my hands are causing me a few problems, well today they have entered and entire world all of their own. Every evening lately they have been either sore or numb or if they feel like it both at the same time, but I knew where it was coming from, all my typing during the day. Hold on whole I explain as it isn’t quite what you might think. My figures have been feeling in numb and slightly enlarged causing a restrictive movement, to look at them they are OK. In the way I described the other week with regards to my feet, it is like they to are now wrapped in marshmallow, my nerves are somehow extending outside the real restriction of their real size and shape. The result of this is really annoying, I am hitting all the wrong keys. I touch type but when you are not sure were your fingers are, in relationship to each other or the keyboard, well to say the least the result is interesting and exhausting. I am retyping word, after word, after world, in an attempt to get it close enough to allow spell check to fix the muddle. When my fingers are moving there is no real sensation out of the normal, what they do is pot luck but well they don’t hurt, when I rest them, in flies the pins and needles and the tingles.

Last night they were actually puffed up after their day of more than double the normal amount of work they are used to. The muscles where shot, just throbbing and feeling enormous, I spent most of the time sat watching TV just messaging them, but they felt almost set, if that makes sense, as thought the muscles had stiffened into a place that although they still worked, somehow had become like soft wood. It isn’t just my fingers but also the palm of both hands, they were the first area to developed the solid sensation and the areas that seemed to demand the messaging. When I went to bed where usually I spend the first 10 to 15 minutes, with my legs and feet giving me hell, last night my hands did to. Usually I just have to relax the muscles slowly until they reach the point where sleep is possible, it is a system I have used for years and still works quite well, I had to do exactly the same for my hands.

I have now for years been unable to make a fist with my left hand but just now I can do it with neither. If it ended at my hands then fare enough but this morning it stretches through the muscles right up to my shoulder, just as my hands nothing until I let them rest and instant setting and a tingling numbness appears. My dexterity away from the keyboard is just as interesting and well tested, today is the day for the shopping to arrived. Keeping the individual items safe until they reach their storage space has been a challenge but I am slowly getting there. I was lucky today as it was the really nice delivery man that I see frequently, that frequently that I think he now knows when things are easy or difficult on that day. Usually the shopping is just left on the floor in the hall, but he took it upon himself to set all the fridge and freezer shopping and all the fruit on my kitchen counter. He knows me that well that he even left me a space on the counter, so I could sort out each bag, now that is service!

This is the first time that my symptoms are symmetrical, I am so used to everything being my left side, only or worst that I am really find it odd that it is fairly shared, both index and thumb are the ones that have gone stiff and numb and both outside two fingers are sharp nerves and tingles. Both are slowly over the days getting worse at the same rate as well. I notice yesterday evening that when ever I was on my feet that I was letting my arms just hang and move with my body as though they didn’t work at all. Just dangling was the most comfortably way, as guarding both just wasn’t possible. All the fun of having a nervous system that have given up having any systematic reasoning.

The past is repeating – fact

In the last few months I have been keeping notes about my left side of my body, I am not sure why, other than an intelligent guess that I have more lesions on the side of my brain that controlled that side, I have always had more problems with it. It was the complete loss of the use of my left hand that first forced me into staying at home and working from here until I was made redundant last year. With out any use of my hand for several months I couldn’t use my wheelchair and I still can’t as I have little strength in it to this day. It took the best part of six months to get enough use of it to not require the brace I wore throughout that time. I tried hard not to wear the brace more than I had to but my hand was safer when in it than it was just dangling around from my elbow, below that point I had no sensation or reflexes, it was a constant danger to itself, I leaned quickly that the braced and held by my other hand avoided unnecessary bruises and bumps. There had been little change in it for a long time, but I notices at the same time as the pain increased in my left leg, more and more of my left arm was loosing sensation.

The palm now is almost gone completely it is a strange sensation to watch my touching it and not feel the touch. When I make a fist the palm feels as though it has died and stiffened, muscles and nerves seem to cause strange feelings around dead areas. It would be like you holding a disc of hard plastic about 2 inches round in your hand and them making a fist round it. When making a fist my finger tips no longer actually touch my palm in the normal position, I can’t get them there, if you place your finger in my hand I wouldn’t be able to tighten my fingers round it, you would feel almost no pressure, the grip has gone for all practical purpose. Add in the constant strange slow pins and needles feeling also tells the story that the nerves are trying to spark with little success, this also happened the first time round. On the good side, although my finger movements are slower they are still there, but getting the right key on the key board without checking where my hand is I totally hit and miss. From the best point that it recovered to a few years ago it is now quite rapidly regressing, bit by bit it is dieing again, I was cutting an onion the other day and my thumb collapsed, I couldn’t grip with it, I also lost all strength in the muscles in my left upper arm. There is no doubt now in my mind that it is once again dieing.

That on it’s own would be bad enough but I have also started to get some of the milder symptoms in my right hand as well. What I can and cannot do is changing again. I have mentioned little bits of this in my posts from time to time but I feel that it is no longer something to keep an eye on but to document as a fact, my left arm is vanishing and my right has quite a few sympathetic symptoms. As long as I have enough strength in my wrists then I don’t have a problem that needs to be braced, it is when the wrist goes there is no option but to brace, as a hand that hands limp on your wrist is completely useless, I am wondering though if I should by a right hand brace in case as happened with my left, I wake one morning to a dead hand.

As I learned from the first time round there is nothing at all the medics can do, I remember the look on my Dr’s face when he found not reflexes, he sort of raised an eyebrow and said ‘well, yes, it’s dead’. He looked totally lost when I asked if there was anything that could be done and all he could say was we just have to wait and see what happens. That was it, I went home knowing exactly what I knew when I went in there, this also tells me that there is no point in even telling them this time. One more step written up and a start point in many ways for a written tracking of what the future might hold. Position now, just as before, wait and see what happens.