This isn’t me

Stupid. That’s just how I feel and it is probably one of feeling that binds all of us with a chronic illness together. It doesn’t matter what is wrong with us, there will be elements of it whether it’s through dropping things, not being able to remember or the tears that run all too easily, we land up at some point, feeling stupid. I for one can tick the boxes beside all of those examples, and I am sure if I sat for a while and thought, I could come up with several more. Last night, I once again found myself believing that we were on a different day. Adam had come home at lunchtime, he is off work until Tuesday but is going to his Mums on Sunday, as it’s Mother’s day.

Knowing all this, is one thing, being able to live in a day that isn’t normal, isn’t. I was confused and I set up our TV viewing while Adam was out of the room fetching my evening G&T. I don’t fully know if I like my evening Gin because it’s alcohol, or if it is the invisible effect it has when mixed with my drug, or simply out of ritual. All I know, is I hate being without it. Anyway, I have digressed. I was confused long before it arrived. Most evenings, we have programmes we watch because of the day of the week, not because it’s when it’s broadcast. Yes, we have joined the rest of the world. Not totally, there are still some the TV companies dictate, but we’re getting there. After an hour of viewing, we flicked the TV back the BBC One, while we went to fetch my drugs. It was then, that I felt stupid. There was Eastenders. Despite checking and double checking the listings, I had made a mess of it yet again. How can I read the details, off the screen in front of me, yet not see it? How can I do this again and again and again, but still get it wrong?

Adam repeatedly tells me it doesn’t matter, at first, he seemed to think that I was upset about missing the show, of course, I’m not. I’m not that stupid, I do know about the I-player. It has nothing to do with missing anything, but everything to do with the fact my brain is running away from me, faster and faster. With ever step that it takes, that feeling of being stupid is growing and handling that feeling, is also getting harder. I can’t any longer just brush it aside as I used to. If I could, I wouldn’t be writing this, this wouldn’t be the subject of today’s post.

It doesn’t matter how ill we are, what doctor’s say about us and what other see, just like I said in yesterday’s post, we still expect our bodies and minds to work. There is a huge difference between things that a physical aid can help us with and those things. we can’t now do, but we would expect a 7-year-old to be able to do. Wether you miss your mouth when trying to eat, or miss programme the TV, they are things that are so simple, that there is no other feeling we can be left with, other than feeling stupid. You might think that it’s just because it is clear and has been witnessed, but it isn’t any different when there is no one here to see it. I know some people will have thought that it’s just embarrassing, well it is, but it has far more to do with the feeling we are useless.

When your life has been chipped away at. When you have changed from a vibrant intelligent woman, into someone too stupid to be left alone with a remote control,how would you feel? When you have been the person who took DIY from plastering to decorative features with ease, but can’t even install a suction cup grab bar because you don’t have the strength, how would you feel? Falling over is physical, people fall over all that time, But when you can’t take a single step without being in danger, how would you feel? When you find yourself lying on the ground, unable to roll over, crawl or stand up, how would you feel? When letters and telephone calls scare the hell out of you, how would you feel? When you can’t make it through your own home in time to not wet yourself, how would you feel? And so it goes on, stupid is totally an unavoidable feeling.

So how do you deal with it? To be honest, I don’t really know. Yes, I can brush it aside and say it’s just one of those things. I can do all of the logical steps that as an adult, means it rationalised and makes sense of it. I can tell myself that yet again, my body is failing me and it’s not my fault, but deeper inside, I still feel stupid. Why? Because I quite honestly don’t know what else to feel. From childhood on, if we do something like any of the above, we are told we are being stupid. I can still hear both my Mother and my Father telling me to “Stop being so stupid”. When you go to school your teachers tell you just the same things, so “stupid” is engraved in us. It’s a place where we have been told is a bad place to be, no one wants to be singled out, no one wants to be “stupid”.

Being permanently ill, brings so many things with it that we can deal with on a rational level, but it also brings much that is the complete opposite. Where you put those feeling and how you handle them matters, but no one counsels you on exactly how to do that. Each of us has to work out for ourselves just how we do that. I for one, write, this is my first post purely about it, but you will find tiny pieces hidden in different ways, as until now, I wasn’t ready to stand up and say “I’m stupid” or even “I feel stupid”, quite so loudly. None of us want to be here and I know without a doubt, there are millions out there who know exactly what I am talking about. The frustration we feel, the disbelief that despite all we have done to avoid those triggers that leave us feeling this way, yet we’re here, again. The self-anger and disappointment just grow and if we don’t find a way of dealing with it, it will only get worse. Not only do I write, when appropriate, I’m now vocal about it. Last night I didn’t hang my head in shame, I let it out and I pointed it out as well and by doing so, it took the blame off me, and put it where it belonged, with my health.

There is much that shows me that my brain damage is growing. I don’t need any more tests, I know it’s failing me and it’s just getting worse. I can either just feel more and more “stupid”, or I can be honest about it to myself and to those around me. This isn’t me, and that’s something I have to remember every time that word tries to appear in my head. I’m not “stupid”.


Please read my blog from 2 years ago today – To work or not

Just raising the mattress last night by 4 inches meant I woke this morning without any pain in my back or lungs, the answer was there just waiting for my stupid brain to catch up with it. For somebody that used to be paid for having an analytical and creative brain, it really is a bad show, to say the least. Yesterday was my normal day for the shopping from Asda to arrive, the delivery guy was one who comes here a lot and we have talked about all kinds of things in the past few years. Just as…….





A Hospital issue

Last night, I climbed into bed, tired and more than ready to sleep. The TV schedule on a Saturday, are constantly shifting, so I was a little later than normal, that, though wasn’t the reason I was so tired. I have been finding the last few days draining. When my mind doesn’t want to shut up and only full on distraction seems to be of any aid at all, my strength fails quickly. Despite going to bed as always in the afternoon, I don’t think I actually slept. I just lay there, with stuff flying in every direction in my head. When I was once more back in the bedroom, ear plugs in place and the last scraps of light blocked out by my mask, I feared that the night was going to mirror my last visit there. When I had been getting ready for bed, almost as soon as I entered the bathroom and distraction vanished, I found myself thinking about the final paragraph of yesterday’s post. I kept wondering if I had written the final sentence correctly. Was it fine as it was, or should I have actually worded it slightly differently, so that it ended with a question mark? Once in bed, I was almost decided that I should change it, as it is a question, will I be able to just accept, or is that more a blind wish. There was a tear running down my cheek, this was the first time in my life, where I was seriously facing my own mortality.

It’s easy to say, we all have to die and to sit and think about when and how ours might happen. That isn’t facing your mortality, that is admitting it, facing it is a totally different thing. Just like that image that appeared, so did that tear, without permission or thought. One tear, not the flood that you might expect, just that one. Tears won’t change the fact, or make it less painful, but it’s not the type of pain that requires them to flow. It was odd, I wasn’t happy about what I saw, or the fact that it is approaching me, but there is an acceptance already there that I don’t actually remember either giving or working on. Tears would be appropriate if someone suddenly put a gun to your head, as that isn’t what any of us expect, our mortality would then be imminent, mine isn’t. It’s still out there in the future, what has changed, is that it is in sight, that’s the only, but a really big change, it now has a tangible reality. Just as I know that the time where I will need more care, someone to come in and assist me to do things that Adam can’t or I don’t want him to, is closing in on me, so is this. Yet, it still feels like yesterday, that I was working, going out every day and living like everyone else. Yesterday, I got angry because my day had run away with me, and there was suddenly not enough time left in the day, to do all I had planned. Adam said something along the lines of “who cares about the hours, it’s the years that worry me”. I corrected him by saying, “No, it’s the hours that matter, the years take care of themselves”. The truth in that statement felt and still feels starkly real, the years will take care of themselves, as I won’t be able to take care of them.

Today, though, is about getting both mentally and physically ready for tomorrow. No, that isn’t some kind of statement that links in with the above, this is something totally different. Once again, I’m on my way to the hospital, at least this time, I have the novelty of visiting a different department, I’m heading for Dermatology. A few weeks ago I wrote a post in which I explained that I had found a mole on my back that was doing something rather odd. I had emailed a photo to my doctor and he doesn’t think that it is anything to be worried about, but that due to the change, it should be checked anyway. So once more, I am heading for the hospital and today, I have to shower, wash my hair, tidy up any that needs removing and generally get ready for being out of my bed an hour early tomorrow, which is when the real fun begins.

To anyone else it wouldn’t be a problem, to someone like me, the whole thing is an unwanted nightmare. The last time I went, I was lucky, I don’t think the Ambulance crew thought so, but I was delighted when there was no stair-climber available. Trust me, being carried in a chair, by four people, up and down six flight of stairs, is a hundred times better than that monster of progress. If you don’t like fairground rides, you too would hate the stair-climber. It’s violent rise and fall action, that pushes your stomach into your mouth, is enough to upset most people, and part of the reason for my early rise. I am lucky enough to have a supply of anti-nausea pills, I have them as nausea is, unfortunately, another symptom of my PRMS, but the tablets do take a little while to work. With the Ambulance possibly here as early as 8 am, I need to be dressed, fed, drug program completed and even my hair and a little makeup added for vanity. Yes, I do have a little of it left. It is going to be a long and tiring day, and like all the rest it is going to take me a few days to get over it, and that is if it all goes to plan. Our unfortunate experience says that it is quite likely going to do anything but. We frequently find ourselves through the doctor side of the day with ease, it is getting transport home again that makes it such a drain. Hours of just waiting, sometimes right into the evening, isn’t uncommon.

I just remembered to plug in two E-cig batteries so they are also charged and ready to go, the first tick off my to-do list. The last two times I have been out, I totally forgot about them. I have had to charge two batteries, not because I think we are going to be out long enough to use one, but because I haven’t used them for ages, I didn’t want to take the chance that one might die. All the hospitals in Scotland, now have a policy that says that you can’t smoke a real cigarette, anywhere within their grounds, not that anyone really pays any attention. Adam is perfectly happy to wheel me outside to where all the other illegal smokers stand, but my nicotines levels dip quite quickly, a side effect of constant availability at home. Here, sat in my home, I don’t need to worry about charging and all that fuss. I use one that works off a USB, so it always works perfectly, but not much use anywhere else. If there is one place that a nicotine addict needs their drug, it is sat waiting and waiting in a hard hospital wheelchair, no, I’m not allowed to take my own. Rules, rules, and more rules. I’m waiting for the day to arrive, when you have to take a test, just to be allowed in their precious property. At least we have managed at last to get them to bring Adam with me in the Ambulance, they have at last accepted I need him with me.

On one level, I fully understand why patients go to see their doctors, rather than the doctor coming to see them, but on another, I don’t get it at all. To get me there and back again will take two, possibly four, if the stair-climber isn’t available again, with between two and four Ambulance crew, twice over at this end. The cost of that alone isn’t cheap. Clearly, if tests need to be done, then the patient must go to them. But a lot of the time, it is a chat without even an examination, which could be done over the phone, and if an examination is needed, then the doctor could actually go to them. The hospital is a ten-minute walk, or more likely, a two-minute drive from my flat. The doctor with a nurse for security, could in one car, be here and back in under 15 minutes. If a patient can get to the hospital, without transport having to be laid on, all is well, but surely it would cost less if they had a monthly list of those who are not able, to which the doctor could be the one making the visit. Especially, if the impact of going out, is detrimental to the patients health. I know that would take joined up thinking, but if it makes sense to me, how come it doesn’t make sense to them? Isn’t it time that the NHS used joined up thinking and started to use things like Skype, to cut down cost and improve patient satisfaction. Yes, you can smash tradition to bits and start again!

Clearly tomorrow I don’t have the slightest clue if I will or won’t have time to write a post. Don’t worry, I will be back on Tuesday if I don’t, just remember where I am and don’t worry about me, I am fine.

Please read my blog from 2 years ago today – 18/10/2013 – Shifting the focus

There are always day when strange thoughts and feeling seem to take over, ill or not, I know that the human mind has a huge capacity to to invent and create things that should never have been there. I have always been that individual…..

Reaching into the dark

About midday yesterday I started to cry, I cried at everything and my emotions are still a little raw. I’m not sure where it came from and why it started, but at every slightly touching moment or sad moment on TV tears ran down my face. I guess I just needed to. Sometimes I think that is all it is as there really is nothing behind it, I didn’t feel sad, I didn’t feel happy, I just needed to cry and I did again and again and I think it still needs to come out all over again. I think we all bottle things up and then the trigger happens, usually nothing to do with what we are thinking or feeling at the time and we cry. Adam picked up on the phone at lunchtime that something was wrong, but I didn’t explain or admit anything, as I was hoping it would have gone before he came home, then the damned TV did it again, a touching moment of a fathers acceptance of his sons deafness and I cried. The odd one escaped over the evening and flooded again when I went to bed and I was alone to let them run. I have often wondered if things like this happen because we are still at heart wild creatures who’s lives have been over simplified and made too easy. Is it just those feelings of fighting and surviving left with no where to go, so they explode out of us whether we want them too or not, be it tears or anger, and we are left wondering where that all came from and why now. Think about it, we are one of the first generations, who haven’t had to deal with hunger, war or diseases in the way others have. We have a world that is so simply laid out for us and there is little for us to fight for or die from. We all live lives that we were not created to, so where can all that instinct, that fight and that energy go. Sometimes I think my Mother was right when she used to dismiss me with the words “you think too much”, but how can anyone not think?

I woke this morning little changed from yesterday and I guess that I will head to not only once again sleep this afternoon but also early tonight, 9pm has become normal now as my disappearing time. Adam has learned to read me so well that he is usually on his feet before I am, heading off to the bedroom to collect his dressing gown before I have the words even out. It means I see so little of him, and that I don’t like, but I have no choice, I am not a night creature any longer and that is a fact I have to accept. My temperature control is still off by a mile I am cold then I’m hot and I never seem to be just right, may be Adam is right that this is all my hormones and I am going through the change, who knows. I wish you could just demand a battery of tests and get a complete read out of how your body is and what is happening at that exact moment. I suppose that day will come when some clever clog will develop an app and the last secrets of life will be undone.

Yesterday also brought me an afternoon where the pressure sensation I have been living with under my ribs finally turned in to pain, it wasn’t screamingly bad just pain. So now I have pain from just under my bust line to my waist, like a strange girdle around the from of my body, and when I went to bed last night and laid down, I felt it also in my back, but not until I was lying on it. Day by day it seems to be changing and causing me more and more discomfort as it does. Eat more than a small portion and there is sharp cramping in my stomach, almost as though it can’t empty as something is stopping it move, so it tries harder and harder to get rid. When I showered yesterday I once again stood on the scales and once again despite my over eating that I have lost more weight. It is going down every week and the only thing that I am left concluding is that I am not absorbing what I eat fully. I had that one clue months ago when a tablet passed through me whole and that is about the time my weight noticeable started to change. On the good side thought I don’t feel like a landed Walrus any longer, just a rather large Wale. It’s actually not even that bad, but when you have lived your life as a size 10 everything above just seems wrong. There is nothing about it that I can change for now, I just have to track what is happening and try work out what is behind it, well the medics are taking so long about it that I sort of feel that it is down to me to work it out. Oh how I love our NHS.

I am still in 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 the tears down step by step until there were just a tiny speck now and then. It was the strangest experience as nothing had been said or happened immediately before I went into the bedroom, Adam and I had talked earlier in the evening about Teressa being here and what we had talked about, but from there until bedtime I hadn’t felt that way at all. I can’t even think of anytime in the past either where anything like this had happened, it was as though I had been waiting until I was alone to let it out, but I have no memory of even thinking it until it happened. I lay there for a while, thinking and feeling still that pain with which my mind was screaming, as I write this I can feel it again and there are tears at the edges, as Adam is asleep on the settee I am holding them back as there is no purpose in letting them go and disturbing him.

I can only think that yesterday during the day I was still feeling the joy of the time Teressa and I had spent together, when talking with Adam I remembered how bad I had been at one thing, I had noticed how far my ability to talk and control a conversation had changed. It is Adam that I really talk with and he is all too aware of the way my mind blanks and the muddle I can get into when my thoughts get split and either totally or partially lost. Spending a day with Teressa who hasn’t seen me for a couple of years had shown me the change starkly and I knew she saw it too. The person that is there for others to see has really changed in that time, even in the last year I have had to admit to myself there is totally no way that I could now hold down a job, unless they were the most patient and irresponsible company on the planet, who wanted stats but didn’t care if they were right or wrong. So much of my now feels locked off, as though I know it is there but even I can’t bring it to the forefront and make it work. I know much more has changed too and that I am loosing more than I can reawaken and yes I am lost somewhere inside. Maybe that was what was screaming last night, or maybe it was me actually taking the next step of totally admitting, not just saying or writing the words, but accepting it in my heart that I am disappearing in many ways that are hard to explain.

I can put a quiet smile on my face and nod to myself saying it is all alright, I am still coping and I am still able to do much, but as true as that is, there is a huge bit missing. There is a huge step from knowing, saying, writing something to truly believing and accepting. I want to cry now and I have wanted to all morning as I am hurting, hurting not because of a spasm or any other physical pain my MS throws at me, I am hurting because I am just a little lost as to what happens now and how long will it take. My silent screams of last night are still echoing through me and when pushed away for a few minutes, wait, until there is a tiny gap to echo again. I have the deep desire to go back to my bed and just stay there for awhile, hiding from everyone including myself. It feels as though it would be somehow easier to manage but that isn’t managing that’s running away.

I know myself well enough still, to know this feeling will pass and I will move on, compensate and adjust, but for today I feel bad, bad about a loss I can do nothing about. Giving you the words that can open this feeling to all isn’t something I am finding easy, I know I am circling it and touch some edges but those edges are possibly too raw to explain. How can I describe something that doesn’t make much sense to me other than to say I am still me, just not the one that can keep up with you.