Joining the dots

Every cell in my body is no longer just tell me, they are changing, they are now screaming it, so loudly, that my head is ringing with it. It’s about six months ago that I first felt that I was in danger of being on my feet and that my wheelchair, was once more, needed in my life. At about the same time as I found that not only; were my legs muscles becoming a fan of just collapsing; every sensation my PRMS had found to play with, had also become heightened; so to where my tremors, they were increasing; my spasms were more frequent and favouring the more intense, and my mental symptoms were, well they too were more intense; everything was moving, and moving rapidly. Six months is an incredibly short time, it’s not like when we were children, when months lasted forever, now, especially now, they have become incredibly short.

When that day came that I let the words actually come out of my mouth, “I need my wheelchair”, I had this huge lump in my throat. It was all well and good, thinking it, thinking it is safe, it’s silent and no one other than you knows that thought is even there. Saying it, is like writing your own death warrant, there is no going back. Admitting it to the world is a very different thing from the world telling you. If a doctor or the MS nurse had said, “Well Pamela, I really think you are going to have to use that wheelchair”, well I would have had someone to blame, an outside observer who had diagnosed a weakness, but I just had me. I think it was the first time where I have been the only one, behind changing my life, prescribing what was needed to deal with the course of my health. I was also doing something else, using a great big piece of equipment as a foil, not to hide me, but to hide what I didn’t want to see, or even think about. It partially worked. It was a distraction. I had to buy this or that, make sure that I had the optimum space to manoeuvre in, without rearranging the entire house. Things to do, things to think about, anything but stop and admit. I could bypass everything other than my brain, it has a nasty habit of showing the world my shortcomings. Stutters, slurs and blanks, appear throughout almost every sentence I dare to try and speak. Adam, well he’s used to it, but my visit to the hospital two months ago put a spotlight on it. The consultant spotted it the second I entered the room and tried to speak.

No one but us, knows about those maddening sensations, unless, we tell them. Well, no one can see a tingle, or a lightening shock hugging our skin, not even us. Unless we jump, squeal or flinch, they are our secret. Which probably makes them one of the hardest things for those who don’t have MS to understand. Yes, we can explain, that they feel like this of that, but the average person, they only feel something similar for the briefest of seconds. They have no concept, no understanding, or any way of even imagining, what it’s like to feel them for hours, days, months or even years. Pins and needles, so what there nothing. Maybe, until you have them running across your face for a whole day. Nothing, until someone, turns those pins into knives, and those needles into spears. So numbness, well it must be a joy to someone who lives in pain, isn’t it? You might think that, but MS has a trick unique to nerve illnesses, we can feel both, in the exact same spot, at the exact same time. Internal feelings have nothing to do with the real world. If you apply moments though the danger of numbness is real. Burnt hands from an oven, fingers from a cigarette, cuts that you don’t know are there, that fester before you spot they exist. Food and drink that falls from your mouth as you don’t really know if your lips are closed or not, as you can’t even feel them, or the food. Sensations matter, be it missing ones or created ones, if they aren’t exactly or even close to what they should be, they disrupt everything, create danger and generally, make life hard.

Last week, I described a bad spasm, bad, not because of what it did on the pain scale, but because it made my health all to visible, in a not too pretty way. Not all spasms are visually dramatic, many, like those who take sheer pleasure in stopping me from breathing, constrict, just below that pain level. To find a point, in any day, where either my diaphragm or my intercostal muscles, haven’t held that position, in the last couple of years, is hard. In that same period, I can’t say that for any other part of me. 2 years ago, I went days without feeling a spasm anywhere else. That was the point when my PRMS found my intestine, but still, the rest of me, I went days. When they came, well in comparison to my torso, I really didn’t care. They were there, they were annoying, but they didn’t last, and they didn’t hurt, beyond a normal cramp, or stitch. They were mundane and forgettable. Technically, a tremor is nothing more than a fast twitch spasm, yet when it comes to dramatic effect, back then, my tremors won hands down. The spinal twitch was the best, it swung my enter body, from my toes to my head, in sharp jolts, from side to side and still does. My hands before my chemo treatment, did a complete and expert impression of late-stage Parkinsons. Post chemo, they settled to odd spells, that never lasted long and I could hold my hand out in front of me, not steady, but not flapping all over the place either.

So why the requiem, because all of this, just like the need for my wheelchair has changed too, and in just as big and as solid away as moving my chair back into my life has. My first paragraph, well it laid out the glimmer of the facts. My legs were the dangerous factor, the one part that was partially fixable by adding my chair. A wheelchair doesn’t make your legs stronger, it doesn’t stop the muscles from collapsing, and you don’t have to be standing to feel it. You might not think you are using you leg muscles when you are sitting, but you are. Sit there and totally relax your lower body and you can feel the difference. When it happen unconsciously, it affects your entire posture and body. Suddenly, you have what are in all respects two long lumps of flesh with pins in them. They are closed off, separated from reality and feel just as dead, as they would be if you tried to use them to stand. When you are in a wheelchair, believe it or not, unless you are a paraplegic you use your legs in every push. Dead legs, make every push twice as hard as they are with your legs to assist. Now add into this, the fact, that that feeling of weakness, and even deadness, is now appearing in your arms. I now, especially at the end of a day, find myself sat in a chair that I couldn’t move without, but with little of the strength or movement required, to actually achieve propulsion. My foil now feels more like a folly.

Spasms are now stronger, but that isn’t what bothers me, it is their weaker cousins that are making life tough. Doing simple things like lifting my feet so they can sit on the rests on my chair, is now literally, a hit and miss process. My muscles jump, kicking away and far too often, into the foot rest. The precision required to place in where needed is almost gone, just as it is when I’m walking. My left leg is far worse than my right, and if I had to take more than a couple of steps, would without a doubt, trip me up. Just standing can be enough, to send it off in some kind of fit, twitching and flicking itself all over the place. At it’s worst, I don’t need to even stand, it just twitches unstoppable, and those twitches in my hands, are returning. If the worsening of existing and the return of the once fixed wasn’t enough, now I also have the vanishing voice. I haven’t mentioned it for a couple of weeks, but it hasn’t gone, it just comes and goes at will. I had to mention when I was at the hospital, as it chose Monday as a good day to vanish. At least my PRMS chose that day to show itself and its latest trick.

I felt all of this growing, just as clearly as I felt my legs leaving. My concentration on making life in a wheelchair work, for me, allowed me to, not so much ignore, but more, to put aside as secondary issues, everything else. I couldn’t ignore the change in my breathing, as yes, that too appeared at the same time. Clearly, something six months ago kicked my progression into high drive. I don’t know what, I just know that my body is falling into the abyss, faster than it has done since 2 years after my diagnosis. Then, Mitoxantrone was the answer, but that was a one-off, I was told then, that I could never have it again. It does so much damage to your heart, that they don’t dare do it again. So this time, I am on my own. I know Adam has seen all of this, just as I have, he would have to be blind to not have. Like the sweetie he is, he chose to respect my lack of discussion and the blind eye, I was clearly turning on it even in here. So now, I have publically joined all the dots, brought together the fuller picture, now I just have to work on living with the results.

Please read my blog from 2 years ago today – 13/11/2013 – Sharing the same space

My day was in a bit of a muddle yesterday, it seemed OK on all the main points and I even completed the shopping that is due to arrive this morning. I don’t know how or where it went wrong but I was……..

Just waiting

I slept for two and half hours yesterday afternoon. Normally I will sleep about an hour less than that and it was clearly the alarm that woke me. I had gone to bed without finishing everything I had to do. I just didn’t have either the energy left or the ability to take the pain any longer. By the time I gave up, I don’t think that there was a single thing from my hips to my mouth that didn’t hurt. Even my arms were screaming at me by that point and I had had all that I could bear. I knew that I was going to sleep without any issues. I was totally exhausted and I hadn’t even made it through the first half of the day. Pain has to be one of the most draining things there is and when you can’t find relief, well the only good fact there is, is that sleep will eventually take over.

I had been pinning some hope on the fact that the pain lowest in my stomach meant there was a chance that I might just actually go to the loo and break some of the pressure. There was no luck there either. Yes, I did go, in fact, I went twice, but it didn’t produce any relief what so ever. I had in the morning been putting down the fact I felt so ill, to the pressure, pain and tiredness. By the late afternoon, I had begun to really wonder. Out of the blue, my temperature was spiking, sudden spells of feeling like I was totally frozen, but sweating at the same time. Yet again my skin was feeling like it was on fire but in the way it does on a cold winters day. After two days of not feeling well and suddenly I was showing something beyond just my normal nutty body. There is one thing that not even my body can manage and that it so truly fake a high temperature. Admittedly, it can fake aspects of it, but to get that bitter coldness whilst sweating is something I’ve only ever had when something else is at work. Whatever is wrong with me, it is centred on the one part of me that spends its entire time producing pain and most days absolutely nothing else.

I have thought many times that I have found the worst part of life with PRMS, but this attack on my internal processes, of processing food and breathing, really is the list, leader. No matter how bad, anyone can live with spasms, I’ve been doing on and off for most of my life. When my MS changed and I was eventually diagnosed with PRMS, I thought then I knew what living with pain was. That assessment has gone up and up every year. Just over two years ago, this new phase began. I don’t think that since then I have had a single day without either or both diaphragm and stomach pain. Like everyone, I thought I knew how much pain a stomach can produce, I was wrong. It too has gone up and up but far faster than any other pain that I live with. Even the pain I was in from January through to June didn’t manage the highs of the last 24 hours. So OK, I am 90% sure that something is aggravating it, but that doesn’t change anything, it just means I have another way of feeling rotten. Through out the evening it just kept getting worse. Sitting was something I couldn’t manage to do in one position for even one full minute and the pain had made it all the way to my feet. Just placing them on the floor was wrong and there was no way that my legs muscles would stretch so I could put them up on the stool. All the sort of things I had expected when I was diagnosed, pain everywhere in muscles you knowingly use. I never once thought years ago about the possibility of my PRMS being involved in anything internal. I know now that was naive, but if no one gives you the heads up, you just don’t imagine these things. Yes, I knew that it meant spasm, nerve pain, nerve death and all the other joys, but I never put those first three together to make something that could stop you processing food and breathing. Funnily enough they are rather vital and unavoidable things we have to do. How do you deal with a disease that is clearly out to kill you? Yet no one can see it unless you are screaming. Medication can’t do more than slightly calm it and no one has the slightest idea of how to cure it.

Everything around my body today is still reacting to whatever the trigger was. Yesterday afternoon I had to stop my work here at the PC, not just because of the pain in my stomach, but due to my left arm. It had got to the point that just moving one finger was beyond it. There was a tension within it that I know all too well. It is almost as though it has its own energy supply and although the rest of me was still running, my left arm was drained. My hand is still filled with mad sensations, from slow speed tingling to cramps, all centred on the middle finger out to my thumb. If I let it rest for too long, it starts to go what I can only call painfully numb. Nerves are like that, it isn’t until you have an illness of them that you discover their ability to produce two totally opposite sensations at the same time. Personally, I would prefer it if someone could just switch off all their ability to produce any sensation of any sort what so ever. I know that would produce other problems. Ones I probably couldn’t even imagine, but it would be nice, even for a short while.

Today isn’t going to be a good day. Somehow knowing that isn’t quite as daunting as it was yesterday. There isn’t a single symptom of yesterday that isn’t with me today, but I have a far more accepting mental attitude to it. I have heard so much rubbish over the years about fighting illness and it is totally rubbish. It might seem to work when you are talking about a minor illness. But you can’t spend every single day of your life at war with yourself. I don’t have cancer or a virus, something you can do those nice neat systems found in self-help books on. There isn’t an enemy to visualise, other than the one I see in the mirror. You can’t fight your own autoimmune system, you have to learn to work with it and ultimately let it do whatever it will. I was lucky as I learned that one early. Spend your day fighting and pushing yourself to do all that you think you should, achieves nothing. You might have a lovely clean house, but you will have a body in bits and more pain than you know what to do with, and that will last for days, not hours. I pushed myself yesterday beyond the point I should have. I should have been in bed long before 1 pm and I shouldn’t have set the alarm. I did and I paid for it all yesterday evening with pain that even my Morphine boosters didn’t touch. It’s no fun lying in bed wondering how much more you can take without calling an ambulance. Probably in reality a question that I am a long way from being able to answer. As no matter how many times I have thought it couldn’t get worse and I can’t take any more, both have actually happened.

Today I am accepting, I am ready for whatever it wants to throw at me and hoping that the truth is it throws very little. Life stopped being fair a long time ago and I am not the sort of person who is going to complain too loudly, as that is another thing that gets you know where. Like every other day, I will ready my smile for when it is needed and I will move forwards slowly dodging when possible all the bullets I know that are waiting for me and treating all the ones that hit home.

Please read my blog from 2 years ago – 19/08/2013 – Bad day, bad feelings

I seem to have inherited a sieve overnight in place of what I already jokingly called a brain, even writing is taking longer as if I don’t type quickly I lose not just the end, I completely lose all direction. So this could be an interesting post for me today if not for you, mind you it could turn out more interesting, as who knows what will come next, or how much piecing together……

A search for dignity

Over the weekend my arms haven’t been too bad, a lot of tingles and some mild spasms but I managed not to drop anything or to loose control over them. I was reminded on Saturday night of a sensation I have never written about nor has anyone asked me about it, but I am as sure about this as I am that MS causes spasms, that I am not alone. If I am not doing anything for example watching TV or lying in bed, I frequently loose the true location of my limbs. To explain this one is easy for once, I know I have lain down and both my arms are a couple of inches from my body, within a couple of minutes it feels as though they have moved and are now are a couple of inches off the bed surface and my hand is on my body. The nerves are sending me misinformation as to it’s location and it is amazingly realistic, the longer I remain motionless the more limbs join in on the game. No matter how much I correct and confirm to myself that I haven’t moved them, the more I feel they are nowhere near where I left them, it is really odd. So far it has only ever happened when I am motionless, but I can’t help wondering if anyone out there has ever found they aren’t getting true spacial information about their bodies when they are totally awake and in the midst of daily life. I know that I miss gauge the distance of things I’m not actually looking at properly, knocking things over or banging into them with my hands, but the idea of it being worse than that is clearly possible and clearly not something that works when trying to live a normal life. I have just realised that telling someone that your hands and feet aren’t where you left them, is actually quite funny and makes me sound amazingly stupid as well, how can you loose your limbs which are attached to you. I suppose that is one of the thing about living with a mixed up nervous system, it has learned to give out misinformation whenever it wants to and there is nothing you can do about it.

My biggest problem over the weekend has actually been my bowels again, I can’t remember when I last actually went to the loo, but I do know it was before I last went to the hospital, so I took some laxatives on Friday with a very small result on Saturday and a further tiny quantity on Sunday. Over both days I have been having the spasms from hell in my gut, often stopping my and making it hard to move until it lets go. Last night I tried to go to the loo again as there was a mild need to, but I at first couldn’t go, so I did what I have been told not to and strained. If I hadn’t had a endoscopy and a battery of other tests done a few weeks ago, I would now be worrying as what I passed was like spaghetti and to the right hand side of my bowel it felt as though there is a tennis ball sat in there stopping me from going. More laxatives last night and nothing is happening at all, with some straining it is the same as last night. So I am gong to take a larger dose tonight and if nothing has changed by tomorrow morning I will have to call the doctor as endoscope or not this is not normal for me in any way what so ever. This whole issue is really getting to me now, all those test and no explanation of what is happening other than it’s my MS, well hello, there is no way this is caused by MS.

There are so many problems with being housebound that aren’t in your mind when it first becomes clear that you can’t be out there in the outside world independently. Once you are locked into your home unable to do much you then find yourself sat all the time, your weight rises due to your lack of mobility and then the bowel and bladder issues join in. Anyone regardless of the underlying illness will probably at some time have all these issues. Internal health isn’t just about what you eat and drink, the less exercise you take the slower your guts will work, add on to that the drugs that they fill us with and the problems are clear. Whether or not you become housebound by age or health, these issues occur and are common to all of us, so you would think that someone out there would be working on ways of managing it, without having nurses to apply suppositories or supplying incontinence pads which ever are required. I can’t help but think there has to be a better way of managing it all, right now I don’t know what that is, but there must be something. You wouldn’t believe how something that should be simple like going to the loo can impact on your life, but it usually is the small things that just won’t behave that eat away at your day and your life and most of all your dignity.

The results are in.

Yesterday turned in to a really strange one, one that I had totally not expected when my day began. Just after I had posted my blog the doorbell rang, I was expecting it as it was my fortnightly delivery from ASDA, something that is always the same, fast, simple and provided by helpful and thoughtful drivers, well until yesterday. The delivery person had been here before and he as always been the least chatty and the only one I have totally failed to get a smile from. All the drivers know that I like them to empty the boxes into my hallway, from there I put away the frozen and fridge item, and Adam moves and puts away the heavy items when he gets home. The first boxes arrived at the door and I let him in, to my surprise he dumped the boxes right in the door entrance, then turned to head downstairs, so I asked him to empty it, to which I got a mumbled answer that he would do it once he had all the boxes upstairs. I immediately said that with the boxes there all our heat was being sucked into the outer hall, he shrugged his shoulders and went to get the rest. I have to say that stunned me a little and I said nothing over the next 10 minutes as he piled up all his green plastic crates. Eventually he started to unpack and his first move was to put a bottle of coke right in front to the hall heater, our only heater and extremely hot as it heat the whole house. I pointed out that it would explode so he picked it up and dropped it heavily clear of the heater. I was stood the by the kitchen door as he slowly boxed me into my corner, I wasn’t really thinking about it by that point as my shopping was flung around my hallway. He handed my his little black box to sign for delivery then started to grab his crates, I then spotted I couldn’t get past all the shopping and I started to ask him to move some but he was on his way out and he wasn’t coming back. I managed to move slightly a couple of things so I could step over the rest and get back to the living room.

Adam called as he always does at 1pm and I asked him to come down to the house and move it all as I couldn’t get to the kitchen or the bathroom. He was here in minutes as the Hospital is just up the road and before moving everything he took a photo as I intended to email ASDA’s about it as I find it hard to think that they would see this as service of any level. While he was here he told me that he had spoken to my consultants secretary, he sees her almost daily as part of his work, she told him that she at last had the results which had been the hold up. Of course couldn’t tell him anything, but she offered to speak to me if I called her that afternoon. As he hadn’t expected to be coming down to the house, he had left her number at his desk so he called me once he returned after his lunch hour. I often find that Adam’s ideas of what all these tests and visits to the hospital are at odds with the reason I believe that I am attending these appointments. If you read back in here the whole thing started because basically my digestive system has given up. I am digesting food but not all of everything, and unless my bowels are full and I eat more, nothing moves through me, I guts seem to be working on a overflow system rather than the normal daily finished and get rid off action of a healthy bowel. My GP, the continence Nurses and the district nurse had all failed to get things under control, so I was sent to see the Gastro team to see if they could help. The test they did were more about ruling out, rather than looking for, if everything was clear then the real point of being there would begin, the real point being to get control again in anyway that is possible. Adam on the other hand didn’t seem to see any point in going back if there is no cancer or growth or anything else they can operate on. From the start I have said that the problem is my MS and nothing else, so we are approaching the whole thing from different angles.

Once I had the phone number I called secretary, she had just written me a letter and she read it to me, it was exactly what I had expected. All my results were clear and there are no sign of any other condition, in their opinion all of problems are down to my MS and they will be sending me out an appointment to return to the hospital to discuss what if anything they can do. The wording did come across to me as them once again saying they couldn’t really help. Adam and I discussed it again when he came home from work and yet again we were still at odds with the purpose. Adam seems to feel that it should now be all handed over to the Pain Clinic, I see that to a point but it isn’t just pain, there is so much more to it than just that. I am hoping that they will know of some drugs that might control my bowel actions, including the diarrhea and incontinence, drugs specially designed for that purpose, also with it being their specialist area, they may well know of a drug that is more effective on controlling spasms in the intestine and therefore the pain. In fact I feel the next appointment is actually what the first appointment should have been, I have always said it is my MS, the Nurses all believed it is my MS and now the hospital does as well, with us all in agreement, maybe now, nearly 10 months, on the things I at first asked help with can really be discussed. I suppose I also have to ask them what to watch out for with my newly discovered Gallstones, well as we know pain is a difficult thing, if they manage to reduce my pain levels with stronger of different drugs, how am I supposed to know if they are causing huge problems, if I can’t feel them as others would. I know from the last visit that they aren’t going to operate as I expected, I am not a great candidate for going under the knife. So now I wait, not for the letter to arrive as I know what it says, but for the next appointment to be sent out to me, I would prefer that I see them before the Pain Clinic on the 8th, which is unlikely, but we will see.

Last night was another night that I went to my bed and cried. It was mainly the tensions of the day, but I now had the words that I suppose even I had that tiny hope wouldn’t be the answer, that once again this is something else I just have to live with, from here on in I can look forward to more pain, more discomfort and another thing that is on my list of “Sorry we can do nothing”, it’s a list that never seems to get shorter, just longer and longer.

Finding a gift.

So lets see how is the body today, well tired, no surprise there neither in the fact that both legs are hurting. Sounds like no change then, well yes and no, it is now 8 days since my Endoscopy and I have at last been to the loo for the first time, I was a little shocked as it was seconds from waking I had to rush to the loo. If this had been the next morning I would have understood, but it’s 8 days and I passed almost pure water, as I had when I was drinking that pre Endoscopy gunk. A somewhat surprising result but that is how it was, something that I suppose I have to remember to pass on as a fact to the Docs when I go to see them next, no appointment yet but I doubt I will hear until mid Jan anyway. I really don’t understand my body as something like that has no sense behind it, surely you would have thought that my bowel would have got rid of that last Saturday not a week on, I suppose that I will just have to wait and see what happens next.

I am starting to find that all the waiting for appointments and the not knowing what is going on is starting to get to me. I just wish they would get on with it and give me peace. I have always been against staying in hospital for anything that I don’t have to, but I can now see the advantages of being an in patient, all these investigations would be done in a few days and by the time you left you would have an answer. A bit like it was when I got my diagnosis for my MS, that was a three day stay, then a weeks wait and all the answers where there and we were able to get on with everything else as well. This has been a wait and wait more process and not one single step closer than we where at the start. I can’t but help wondering how many people actually land up being an emergency admission, just because they have become worse during all the waiting. I know that some would say that I have the time to wait as well what else do I do, but that actually makes it worse. When you are working and there the normal activities of life, waiting for a letter to arrive is a lot easier to handle.

I was thinking the other day about Christmas and the fact that we really don’t have the money to buy gifts for any member of the family at all and I had a great idea. I find receiving a gift, especially when I can not actually give, a hard thing to handle and I also know that when I ask for no gifts to be given to me, no one listens. They may not listen when I say don’t give me, but they always ask what I want, so this year I will again say I want nothing, but if they really want to give me something, then what I would like is for them to, in my name, work for at least an hour during one of the three days of Christmas, at one of the homeless shelters. It will be interesting to see what they do. I actually think that as a present it would be a wonderful gift, although I am not and never have been homeless, I see my position as caught inside a home I can’t leave, as the almost the opposite of my situation, they have no home and no way into one. At this time of year and with so many more out there homeless than there has ever been before, that any help that can be given is worth more than any physical gift this year.

I do know myself that not having the money to buy gifts and not the decsteritry to sit for the hours I use to decorating and garnishing their gifts, is a hard thing for me to accept. Christmas was to me the time of year that I could give to those I love things they wouldn’t have bought themselves, but would love. The decoration was the final show of my love as I took the time to show it in each sprinkle of glitter, string of beads, and twisted bow. MS has taken all of that away so now I want to give in another way, I want to give to those who need the attention and I can only give it in my name as I can’t get there myself.