It goes on…..

The door bell rang yesterday afternoon, it wasn’t that long after I had spoken to Adam as he wasn’t coming home for lunch yesterday, but he always likes to check I am alright. I knew from the way it was rung that it was the postman, so I stood up and headed out into the hall to let him into the block. We have an old fashioned intercom system that looks like a phone on the wall and as I reached up to lift the receiver, I felt my hand stop about half an inch from its surface and the muscles throughout me tighten. I had to mentally kick myself into actually doing what I was there for, to lift that phone and say hello, yet I hesitated, it was just for a second, not any longer but in that second I knew what was happening and I wasn’t going to let it, Monday had clearly had a bigger impact on me than I thought it had when I was writing yesterday. Then I was still angry, still wanting to make everyone aware that the world still has morons in it who don’t think at all about the effects of their own ignorance when they aim at those who can’t do anything about it at the time, other than be angry. I was angry for a thousand reasons, but most of all that I had been put in that position due to all the things that are wrong in this world from my own health to the fact that there are people willing to be so vicious toward another human being, all that anger changed in that second at the intercom.

I haven’t felt that way for a long time, in fact, the last time was not long after Adam and I had become engaged and moved into what was our first home together, then it was someone I knew that was scaring the hell out of, an ex-boyfriend who had started stalking me. I remember feeling that same moment of fear every time I saw what might be his car on the same road as I was on, or possibly himself when I was out and about. It was the identical moment of hesitation before pushing the bravado button and acting totally normally so if it was him, well hopefully he would see that I wasn’t bothered. I wasn’t expecting it to be the Asda driver back at my front door, but it was that action that had let him into my home, I had let him in here by answering the intercom. Even when I returned to the living room, I was still totally unsettled and it took me a while to get on with things, but I couldn’t help feeling it over and over again. About an hour after that the phone rang and this time it was Asda’s, I went over with them what happened and how I had been left feeling yesterday, I also gave the web link so they could read everything I wrote yesterday, even though it was an abbreviated version of everything that happened, I wanted them to read it as I wanted them to put themselves in my shoes. The manager of the delivery drivers was off yesterday, but the person I spoke to was totally apologetic for his behaviour and will speak to his manager today and they will investigate it further before calling me back.

I didn’t tell Adam when he first came home about what had happened in the hallway, he had already told me that he had plans to do his weights in the kitchen last night and I knew that if I told him, he would want to sit and talk about it and that wasn’t fair, I wasn’t going to let it spoil his day as well. I had spent the rest of the afternoon just feeling that wave every few minutes it just appeared out of the blue, I didn’t even manage to sleep, despite wanting to if just to block it all out. The one thing that brightened my day was all the lovely tweets and comments that I received, it really did help just to know that total strangers were as disgusted by the whole thing as I was. I did tell Adam about the phone call though, he like me are quite happy at the minute to wait and see just what they have to say, although she had said she was going to talk to his manager today, I know that a lot of the drivers only work part time, so they may not be able to talk to him today, but we will see. It was about half an hour before I was due to go to bed when Adam came through to the living room having put all his weights away, as he ate his sandwich which he had brought with him, I told him about the freezing instance, he clicked immediately that it was the fact I had let the guy in by answering the intercom without my having to tell him and just as I expected he wanted to talk it through. I was the one who cut it short, as I didn’t see the value of going over it, it had happened, it was a sign that it had all had a bigger impact on me than either of us thought and it was over. As we were saying good night, he announced that he thought it was a good idea if he was here when the shopping arrived in future, which was a statement I had been waiting for, but as I said to him, this is one driver out of hundreds who have been here, one bad person, doesn’t mean they all will be. As soon as I shut the bedroom door, I was once again in floods of tears, it was the second night in a row that this man has left me crying myself to sleep and the second night in a row where my sleep has been disturbed and not the normal escape that I have daily.

Bravado may have gotten me through the verbal battle of Monday, but bravado only works when there is someone there to see it. It isn’t until we are alone and the anger has gone that we start to really feel the true effects of anything. I never thought that a single person that I didn’t even know could make me feel this way, but I do now. I thought myself stronger than that, I thought that no one who could make me feel that way without laying a finger on me and that is the other horrid thing, those feeling drag out of you memories of the times in the past where you weren’t quite so lucky. That’s why sleep hasn’t been it’s normal joy, between the pain and the memory of faces and places that I thought were once packed away, then forgiven and released, appeared and taunted me again. The two crates in the doorway had given me the freedom to defend myself verbally as just as when I was a DJ, my DJ booth was my kingdom and I could do anything within it in safety, stepping out of it and I was a different person, vulnerable and ready to run, those crates gave me that confidence back and my freedom. If they hadn’t been there, I doubt I would have said half of what I did in my defence and I know without a doubt that the tears would have arrived much much sooner than they did.

This morning, I am numb in every way other than to the pain in my body, I have been living on booster pills since he left and I doubt I will be living without them at any point today. Delaid reactions are often the worst as they appear from nowhere, if the postman hadn’t called yesterday, I doubt I would have felt it until he next did as it was that simple hand action that released it all. At least now I am aware of it and I know that I can answer the intercom without anything horrid to follow, but what I would really like and I think would be a wonderful punishment for him, to be made to sit and read not just this post, but every single post I have written in at least the past month, maybe, just maybe he might learn not only what he has done, but he might also learn that people aren’t always as fit as they appear and that one day in health has nothing to do with the next.

Read my blog from 2 years ago today – 15/04/13 – Steps of grief and renewal >

A new week so here’s hoping that it is also a new start with changes in it’s wings, well as long as they are in the right direction, lol. It was a kind of strange weekend, almost like it wasn’t one if that makes any sense. Adam was here as always, but the entire two days just seemed to pass without any impact on me. I got up, I wrote, I slept, I watched TV, I ended my day in bed, then I did the same again. Life can be like that occasionally…………

Please stop

I had my shower yesterday, after Adam reminding me in the morning, I don’t think I had had one for a week, but I can’t be sure. It was one of those odd showers, where the water was just the right temperature and I had managed to set the shower head to the exact point where water falls on me without it triggering painful electric shocks firing all over me. I was actually enjoying the whole thing for a change and really didn’t want to get out of it, but I had to, I couldn’t just sit there all day, but it made me wish that I could get out of here and go swimming. I haven been for a swim since I moved to Glasgow, it isn’t so easy to find a pool that you can get to without spending a fortune on taxis. That shower though, it made me start dreaming of lying in warm water, letting it take all of my weight, with my ears below the water and my eyes shut, there is nothing like floating there motionless with the world totally blocked out life. Right now, just as it has been for a few days, there isn’t a bit of me that doesn’t have either pain or isn’t aching, every muscle and sinew telling me that they exist and I can’t shut them up or even turn the volume down. As the warm water flowed over me yesterday, it soothed them, but only when the water was there, it was a bit by bit therapy that I wanted it all over. I have often thought that PRMS is a bit like having a faulty volume dial, as it is as though your body has to tell you constantly about every single bit of you all the time. Sometimes it is just a background chatter, about this bit or that, on others it is a full blown orchestra and choir producing a wall of sound that knocks you over and leaves you lying there begging for them all to shut up. Right now I am not quite at that point but I am not that far off.

I woke this morning when the alarm sounded and for once felt not too bad, the joy of a complete nights sleep proved yet again, but that wasn’t what happened at all. As always I sat on the side of the bed to get dressed and as I pushed myself onto my feet, I could feel liquid dripping from my bowel, I instantly tightened my buttocks and picked up the rest of my clothes and headed to the bathroom. I have had spells of incontinence for several years, it is all part of my personal monster club, but usually there is a precursor, a small warning that things are going wrong, but I could think of nothing, until I reached the toilet, when I discovered that I had been up during the night and a sudden feeling of relief filled me, as clearly Adam hadn’t been to the loo over night. Suddenly I had this memory of my insides falling out in one swift action, I also remembered flushing the toilet and leaving the bathroom not feeling my best, but still no memory of getting up, or going back to sleep, I had had a warning just one that for some reason I had forgotten. Incontinence regardless if it is bladder or bowels, is something that fills most people with horror, no one wants to be suddenly in an embarrassing situation, regardless of how understanding your partner is, this is one thing I think we all want to deal with ourselves. As soon as I was sure that I had everything sorted and that there would be no embarrassing signs or even smells, I rushed back to the bedroom to check that there was nothing that I needed to deal with in there, before I started my day, luckily there was nothing.

There are so many things that MS does to all sufferers regardless of form, that seem to be designed to embarrass us, even spasms if they are bad, can leave you feeling really exposed as if there is someone who is there that don’t know you, some can look really odd. When you are still working full time, it goes without saying that your body is going to let you down occasionally and as things get worse, well the range it has to choose from just keeps growing. I did back then have problems with my bladder, which was bad enough, but I honestly don’t think that I would have coped if my bowels had joined in at that time. For women, issues with our bladders are easy enough to cover up, yes you need a bag full of items for cleaning up, changing into and so on, but there are a good range of discreet towels available, how men deal with there difference in anatomy clearly making accidents more visible, I really don’t know. For me it was manageable, especially after I was in my wheelchair, as nearly always my bladder let me down on standing up, not something I really did much off. PRMS has the joys of not only making you incontinent, but just as so many other symptoms, it is never happy just at one end of the scale. I also have catheters for the days it just won’t empty properly, a pattern that has clearly moved onto my bowels.

I spent nearly all of yesterday half asleep or totally asleep, I don’t know what the trigger was but I have been exhausted for a few days now. It might be as simple as the fact that I have had a couple of nights where I had to get up to go to the loo, but I quite honestly felt really screwed up, not just tired, but as though the plug had been removed from all my energy cells. The whole day I felt as though I was moving through mud that was right up above my head, I haven’t felt right since I had those spasms in my intestine, they were total killers, pain like that always drains me, but this time it was worse than it had ever been before. I was sat on the settee, with spasms switching between my arms and legs, but worst in my arms, all I wanted was to crawl away and hide under a rock and die, I had quite simply had enough of all the pain and energy levels in the pits. Somehow I stayed up to my normal bedtime, but I was so grateful to get there, to just lie down again and let my body do what it wanted while I slept and wasn’t aware of it. Yes, I am back at that point of just wanting to go into hibernation, yet all I kept hearing running round and round in my head is “this isn’t me”, of course that opens the question of who or what is it then. I know that I can’t control my emotions when it comes to tears just flooding, but there normally is something tiny behind them starting, just not an appropriate moment, but I feel tearful and raw, yes possibly down to being so tired, but it just doesn’t feel that way.

There is nothing I would like right now other than to locate that volume control and put it back down to zero, even if it is just for a few minutes, silence sounds wonderful. I know it will end when it is ready to, but I am getting impatient. I have even reached out to my booster pills, in the hope that they can make life just that bit better and it worked to a point, just not the point I was looking for, it isn’t getting rid to that voice shouting “this isn’t me”.


Please read my blog from 2 years ago today – 22/11/12 – A Muddle of Syllables

Last night I asked Adam a question, one that I got a one word answer to but I was a little surprised when he didn’t ask why I was asking. I simply asked if he had noticed that I …..

Facing the truth

I had to laugh to myself last night when Adam suddenly asked me where I had put the stuff I had bought to fix the toilet roll holder which is handing off the wall in the bathroom. Not since the day I told him I had bought it, about three weeks ago, had he even mentioned it, so there was no doubt in my mind that that meant he had read my post. I had hidden it in one of the draws in the living room so that he couldn’t do his usual, hide it under the kitchen table in the hope that out of sight meant forgotten. He said he wanted it to be on the kitchen counter so it would remind him that the jog needed doing, but it wasn’t done last night as once discussed what needed to be done, he seemed to go off the idea, instead he started working on changing over the electric can opener, that was supposed to have been done a couple of months ago. At least it is one job done of the list, but I couldn’t not tell him when he sat down the rest of the evening about a tweet I had received following my post about the jobs not being done, it said: “Pamela, if a man says a job will be don it will be, he doesn’t need reminding every 6 months”, of course I got it wrong three times, which kind of spoilt its humour. I am just hoping that this is the start of not just the short list of jobs that are waiting to be done, but also the longer one, some of which have been put off for years, but as long as the jobs which stop heat loss from the house before the worst of winter hits, I will be happy.

The spasms in my diaphragm woke me this morning, I went from sound asleep to not quite sitting up in bed, more curled upwards in bed, as always my first reaction was to look at the clock then to try and work out what woke me if it was the alarm. I had barely turned my head toward the clock when the reason made itself known, there was no doubt at all as to what had woken me, as I lay back it cramped in harder, almost as though it wanted to remind me that horizontal isn’t good. I didn’t listen, it is one thing that I have learned to ignore over the years, warnings that try to stop me from sleeping, there was only half an hour to go so I was prepared to just lie there and wait. The alarm sounding proved that I had actually drifted back to sleep for a while at least and to my surprise the pain had gone. I had great trouble getting myself dressed today, for some reason I had left my pyjama trousers in a muddle, not there normal position on the floor that requires no more effort than to simply put my feet into the holes left by them the night before and then to pull them up. No I had left a muddle and one that when you are no truly awake isn’t the kind of mind test you really need, I tried to fix it and made it worse, landing up with one leg inside the other and no brain to workout which. Getting agitated is never a good way to start the day, but I honestly couldn’t sort it out, everything I did just somehow made things worse, at one point I was sat there almost in tears as I couldn’t believe that a pair of trousers were getting the better of me, so I stopped and sat there for a minute, just thinking, well trying to. Eventually I worked it out and feeling as stupid as possible, but at least dressed I headed to the loo, somewhere I was desperate to get too, probably part of the reason I got so wound up.

I have noticed it often in the past year or so that I am slowly getting more and more wound up by things, as I said the other day frustration is something I deal that well with, but when like this morning it moves rapidly past that point where I can logically pull back relax and try again, well the result is tears. My emotional controls have been shot for a long time, but as I mentioned recently, they seem to be getting closer and closer to the surface. To want to cry just because your trousers are in a knot is pure madness. It is beginning to feel like the slightest thing is becoming a reason to just gush water from my eyes, I lost count the number of times that I felt them starting while we were out on Thursday, luckily I had the strength to pull them back and to move on, but I was terribly aware of them, especially when we were chatting to the doctor whilst waiting for the ambulance. I got into a couple of mental knots, when I couldn’t make my point as my brain would only come up with one really bad example, the frustration of that added to the pressure I felt as I had a tame doctor willing to listen, plus the pressure of just being out, was a disaster waiting to happen. Luckily Adam was there to protect me and he did so several times that day, but it has made me face a fact that I have been hiding form, even though I now see that Adam was very aware of.

When the ambulance had arrived to take us to the hospital and we were doing our usual of trying to talk them into letting Adam come in the Ambulance with me, rather than having to call a taxi and having to catch up with us, I found my self saying that I needed him with me not because of my physically state as they thought, but I need him with me because I can’t cope mentally without him. I remember saying it whiles looking at Adam and felt the tears starting to form as I realised just what I had admitted. Looking back Adam has know it for ages, he always takes time off when someone is going to be here, or if I am going anywhere, he doesn’t like leaving me to deal with people, because he knows that I so often can’t. It is a hard thing to admit that you can’t deal with something as simple as an Ambulance trip from your house to the hospital, simply because you get agitated and panicky, because your not at home. I knew perfectly well that that was the truth, probably as long as Adam has but I just hadn’t admitted it and until you do, well it’s not real is it. Just like my total inability to take a shower or my night time medicines without him being my personal nagger, he is also my personal defence unit, my additional brain and my physical prop when needed. A couple of days ago someone on twitter thanked me for adding agoraphobia onto the list of hash tags I put under my links to my blog, I did it a few weeks ago when the possibility of having to go to the hospital first appeared in my mind. I didn’t put it there because I think I am agoraphobic, but because I suddenly understood it, maybe not fully, but well enough to realise it is as much a limiting illness and any other chronic condition. I can go out there by myself, but I know without a doubt that I would be so lost, so confused and so wound up that I wouldn’t survive long without Adam beside me to reassure me he is there as my voice and my brain when ever they choose to disown me.

Admitting the truth about anything that personal is always going to difficult, none of us want to admit that we are a shadow of the person we once where, which is madness. No one would take a second thought about having a plaster cast, or using any aid once there is no other way, be it walking stick or wheelchair, so when it is our brains, what is so hard about just saying I can’t do this alone, I need others to help me. The stigma is huge and that is something that needs breaking and not just in two, but into a million little pieces that can never be reassembled.

Read my blog from 2 years ago today – 14/11/12 – Who am I now?

Last night I found myself going over and over the same question in my mind, probably a question we all ask ourselves at times and probably one we should ask more often, “Who am I”. Having declared so strongly just a few days ago that “I am still in here”, it suppose it was the logical question to follow it. I don’t think……

A new future….

I have always believed in the saying that “The first step of any journey is always the hardest”, it’s taken me years to realise just how wrong that statement is, the first step may be hard, but you can be sure there will be many as hard and some even harder along the way. It doesn’t matter how many times I tell myself and others, that I am at ease with what is happening to me, the facts remain the same, it isn’t that easy or that black and white.

I admit that yes those first few days after I had been told what was wrong with me and what I thought I was facing, were hell itself. I still remember sitting for hours just staring into nothingness and feeling more than just numb, but that is so long ago now that it’s happening now feels as far away from my reality as it did then from my dreams. What I didn’t know then and I am only really coming to terms with is that every time you notice a change it all starts over again. That doesn’t mean you spend your life in a start of grief, far from it, as although there is a constant downwards slope, those moments when you notice the slope and they are the moments when life stops for a few hours and you have to readjust. I know that losing my “voice” isn’t something new, all you have to do is read back through my old posts and it appears not once, but several times, but it’s mentioned because there has been a change that isn’t hidden, but is out there in the open, one that Adam knows about just as well as I do. It easy to hide, even from yourself the daily slips, the odd pain or the extra exhaustion, but it isn’t so easy to hide from your own brain making mistakes that a primary school child would never make. I remember writing a few months ago about noticing that I could no long do basic maths if I had more than two single digit numbers to work with, something I still have to do daily as I can’t help not doing stats on everything I do online. Yes, I do still have pages of spreadsheets, full of numbers and names all working together to not just keep me working through my daily routine, but so I don’t make too many horrid mistakes on twitter. I am reminded every day that I can’t do the things I once didn’t even think about, it may have been a long time since I could totally rely on my brain as much as a calculator, but two numbers, well that was to me a huge issue and sign of things to come. I suppose it was only a matter of time before I could no longer even work out time any longer, if I had been totally honest I was aware it too was going, for a long time now I hadn’t been able to trust myself when it came to counting how many hours were between going to bed and getting up, I counted it out on my fingers, but that was maths, the basic of you have two hours to watch TV, how many shows will fit, a nightly question, to go wrong seems bigger.

It is really hard when you come face to face, in a situation where you can’t cover it up as just a mistake, like, it’s now happened three time in a week with a witness, you have no choice but to deal with it. They are those moments when inside you go cold and your brain goes into a numb explosion, time stops and you are face to face with the monster you knew was there, but you had paid no attention to. On the surface, you recover in seconds, but inside time is still stationary and your dying, your spinning around trying to find the pieces that are missing so you can fix it all, but there is nothing there, just a huge void that has been crossed and there is no way back. Life goes on, you perform just as you have always done, yet still inside you are looking downwards into that void and it feels like it’s pulling your very life force down into it and there is no breaking system, but on you go, you get ready for bed, or make your dinner, whatever is right for that time in the day, but your not there doing it, at least not for now. It can take several days to accept, to reorder your expectations of yourself and your abilities, days that every silent moment is spent fixing, gluing and patching, but most of all grieving for yet another part of you that has gone.

It isn’t just that first step, it’s every single step that is anywhere that isn’t the norm. At times they are separated by months, at other just weeks or even days, you don’t notice them all happening at first, but bit by bit they make themselves known, they happen more, or in a bigger grander fashion, while others snap and their there, or there totally gone. We all have our own expectations of ourselves, we know what is us and what’s not, so when someone tries to tell you your being silly or that it doesn’t matter, it just makes you angry, it does matter, it’s you, it’s you that is breaking and vanishing not them. I don’t care for people who say stupid things like you sound fine to me, well do they even know me, where they there with me when I was at my brightest, my biggest and boldest, did they even know of my existence then, so how do they have the right to say how I seem or how I sound, when it comes to me, they know nothing.

I don’t know how others deal with a body and life that has diminished, what I know is I grieve and I move on. I would go as far as to say that it’s a must, you must grieve, you must get angry and do all the questioning and pain required for each of the caverns that lie behind you, then hold your head high again and start walking through this new life, as that is what it is, it a new life with changed boundaries, changed expectations and a changed reality. It doesn’t matter how small the void or how huge it is, whatever it is, it has an impact so changes have to be made, adjustments that compensate and remove the dangers, but you have to be ready to for them to not work and to have backup plans and alternatives lined up to go. I have learned in the last year that there are things that it doesn’t matter how hard I try, how many plans and back up there are, that there are things that have to be handed over to others to deal with. When it comes to my memory, there is nothing that I can do, to make me do things, taking my pills and showering are just the start of the list, I know that. I have tried everything possible to remind me to do things, but something stops it working, for reasons I can’t find the answer to just having a reminder set up that no one but me sees, just doesn’t work. I either totally ignore it, or I forget I ever saw it. I faced facts and handed Adam the job of forcing me to do what I need to, the future clearly holds a list of things that will also have to become his role to ensure they are done. The solution for functional actions are there, but no one can think for me, speak for me or even write for me, each function I am loosing from adding up numbers, to forgetting the next word and stuttering, I am sure would tell the Nuro’s a story of what is happening to my brain as the lesions do their destructive job and probably what will go next. Knowing make no difference, I knew my brain would stop functioning as it once did, I knew speak and memory were in danger but it doesn’t make any of it easier, every step hurts and every step is a new beginning, in a newly shaped world.


Please read my blog from 2 years ago today – 03/11/12 – I’m still here

Within second of my lying down in my bed last night tears started to flood down my cheeks, not trickle, truly flood and in my head I could hear myself screaming “I am still in here”, over and over again. Almost every muscle in my body tensed and it took me a few minutes to get control of myself again, and bring ……….