The continuum

Adam is on holiday this week, I know that because right now, there is snoring coming from our settee. Well, either he is on holiday, or horribly late for work. Fortunately, I do remember him telling me that he would be here this week. He used to tell me the days he had booked as soon as they were approved, maybe he still does, I can’t be sure as I don’t ever seem to remember these things any longer. I do remember him reminding me a couple of time on Friday and again yesterday. He has learned to do that, as otherwise when I wake on his first day off, I go into a panic and try to shove him out the door. Dates and when things are supposed to be happening were probably one of the first things that went when my memory started to fail me. That was years ago now. I don’t think I have remembered a single birthday, anniversary or anything else for the past 25 years. I used to be so good at it, I was one of those people who didn’t only remember important dates, I equally remembered stupid ones, like the day I met so and so, or when I last went to the hospital and who I saw there. Names where the second thing to go, most people thought it was the first, but I know it wasn’t.

At first, I blamed baby brain, but when baby was attending their first day at school, that excuse wears thin. No one but I seemed to be concerned about it, I think it was the first time I ever felt totally patronised by a doctor, although it was far from the last. I have never understood why it is that people are inclined to just laugh when you say you forget things or tell you “everyone does” or “I forget things all the time”. What they all ignore is one simple thing, we wouldn’t be concerned about it, if it were normal to us. Just as when I went to the doctor to say that I was tired all the time and I didn’t have any energy, to be told it was “it’s normal for a new mother”, wasn’t helpful. Especially as it wasn’t my first baby. Platitudes should be banned when it comes to the subject of our health. Doctors especially should know that people don’t complain about how their bodies or minds are working, unless, it is not normal to them. If that were normal, well they would be queuing around every corner, to complain they don’t have two sets of arms, as they need them to control their kids, which is just as stupid.

Right now, I have a new and growing problem. It’s one that Adam isn’t either taking seriously or is trying to ignore. When I mention it to him, he brushes it aside, which is just about as helpful as my doctors were 30 years ago. I know I have mentioned this a couple of times in here over the past year, but it is now happening more and more. I have developed a problem when it come to dealing with time. What I mean by that is, I can’t look at a clock and work out how much time there is to go, until something is due to happen. I first became aware of it because of the TV. I kept screwing up the amount of time there was to fill, until the next program we wanted to watch was due to start. For example, it might be 7 pm, I can see the program is listed for 7:30 pm and I will believe that we have an hour to fill, rather than the half hour anyone else would know instantly, was correct. My mistakes with the TV are clear for Adam to see, but it is a mistake that I am now making all the time. What the clock says, and how my mind deals with it, is now frequently wrong. I now frequently get lost as to where I am in the day, and how much time I have before something is due to happen. That something can be anything, from lunchtime to Adam coming home. Which trust me, in my life, they are major events.

In the last few weeks, I have also been having more and more trouble working out what day it is. Not when I am looking at a calendar, but in my head. Yes, I know people muddle their day frequently, but I am talking about several times in one day. Literally, I can have a selection of two or three different days, in the space of one. If I am really confused, it can happen in the space of an hour. Each time I feel lost, I check the calendar, which should be enough for anyone, check once, correct it in your head and get on with it, but not me. I know that Adam knows about this, maybe not quite how bad it is, but he knows because even I am aware that he has corrected me several times. Like anyone we have things that happen in our lives because it is such and such a day in the week. Well, I’ve been screwing things up, not because I have forgotten about the event, but because in my head, at that point, I believe it’s a different day.

There is one other thing, it’s as equally part of this issue with time, but I have put down as lack of concentration, but now I am wondering. Take something as simple as writing this blog. Throughout it, I have found myself repeatedly lost in space. It doesn’t just happen when I am sat here, it happens whenever it wants. I simply stop. I’m not really thinking about anything, I just zone out of what I should be doing. Again, I know Adam has noticed it. How? Well, that’s easy, as he asks me repeatedly “Are you alright?”. Then I snap out of it and answer “yes”. Time vanishes, which when I think about it, isn’t really that surprising.

It’s easy to say that as I am housebound and I don’t have a job, so what does it matter. Well, it may not matter to anyone else, but it matters to me. It matters because although it is a minor thing on the surface, things that to many just aren’t important, I am concerned as to what is behind it. What else is being munched in my brain? Time and days are the visible part, an effect that I can see and document, but what else is in the same section of my mind, what else is going to start going next? So why am I not talking to my doctor right now, rather than writing about it? Well, that’s simple. My doctor will simply send me back once again to see my Neuro. He will send me to have more psychological tests, which I will wait six months for, then have to go back again six months later again, so they have a clear picture that lines up with previous tests. Then what? Nothing, just as always, all I will be doing is giving them data, not changing anything for me in any way. No one will be able to tell me what is going to happen, even if they can give a good guess as to what is going on and what will happen, they never commit to anything, because PRMS is unpredictable. There is no point in talking to the doctor as all that happens is I am put through loads of stress, to be nowhere further on than I am at this second.

 

Please read my blog from 2 years ago today – 14/03/2014 – Lucky to be housebound now

It took me a long time to come round to the idea that I should join all others and set up a LAN so that I could watch programs on the catchup services, a long time that I now wish I hadn’t wasted and had simply done it. It’s is strange how something so small can actually totally change your daily life and how quickly it has along with a PC or internet connection of some sort, is now part of me personal recommended things you require to stay sane in a housebound world. I have never envied those who were housebound as little as 20 years ago, their trials would have been a million…..

 

 

 

 

 

Talking

There was a comment on Friday’s blog, that highlighted part of a subject that I have often thought about. I say part, as it is actually also part of a much bigger picture of our lives. It doesn’t take a genius to spot that there are a lot of isolated and lonely people who have a chronic illness. Our health often locks us in our homes, stop us working and slowly all of it destroys the majority of friendships we ever had. I have in the past written a couple of blogs as to why I believe our friends stop calling and slowly vanish totally from our lives. Of course, I just searched for them, and couldn’t find them, but I know they are there, somewhere. Anyway, I am almost certain, that I only very briefly touched on the one in yesterday’s comment, “We don’t have anything to say”. As odd as it may seem, as I can sit here and write forever, I actually rarely have anything to say, to anyone these days. The more isolated you become, the less there is to talk about, outside of what’s on TV, or your past and both those subjects are extremely limited, especially with people who know you well.

“We don’t have anything to say”, is actually a very simplified way of bottling the truth. If I think back to my life 20 years ago, I know without a doubt that when I was out socially, what I talked about was mainly work, shared acquaintances, anything I had done of interest outside of that and our shared history. I had two groups of friends, those I knew through my current job, and those who I met through my past one, but it didn’t matter, our conversations usually still centered around those few subject. Well, unless something amazing had happened in the news. If for some odd reason, one of them decided to pick up the phone and call me right now, after I had updated them on my health as it is now, I would have nothing to say. Why? Well, it’s simple.

a) I no longer work.
b) I go nowhere and do nothing.
c) I have no updates to share with on other friends, as I have none.
d) I have no gossip to share.
e) I have no reliable memories

Would they call me again? Probably not, especially if you add in that the phone confuses me, and that would have caused me to stuttered my way through what little I had to say, I doubt I would have said nothing to inspire them to call again. Even after 9 years of not having spoken to them, I would still have nothing to say. Is it really that surprising, they don’t keep calling?

In the past, when I have written about losing our old friends, unlike most people, I have never held to the theory that they couldn’t stand watching us going down hill. I still don’t, but our lack of ability to interact in the way they expect, without a doubt, plays a big role in our isolation. Over time, we just become that person who pops into their conversation occasionally, and a few may wonder how we are now. We have become like so many other people we once knew, just infrequent memories. Life moved on and we, well we were left behind.

I for one can say in total honesty, that conversation even with the only friend who I am still in contact with, is hard. He, though, is a total angle as I know without a doubt, that before he calls me each week, he makes a list of things to talk about, before dialing my number. We have been friends now for over 25 years, and he is the closest thing I have to family, outside of Adams. Jake found himself in the position about 8 years ago, of having to be the sole carer for his father. Over the couple of years, he spent looking after him, he learned how to approach a conversation with someone without a dynamic life. It took me a while to spot it, but once I did, I found myself being able to tick off the points where his preparation came into use. When I go silent or start to freeze up badly, he always jumps in taking the conversation back into his control. He often has newspaper articles there by his side, so that he can read sections, or tell me the gist of the story. He tells me everything about his life, who he works with, what they do and say. He saves up silly stories to share with me. Tells me what he’s been cooking and allows me to respond, even when that means waiting for it to eventually come out of my mouth. He never gets upset if I can’t remember things we once shared, nor offended if I tell him I have to go, I can’t cope any longer. He’s a rare gem and there are few of them around. I’ve learned from him, but it’s too late. If I had done the same years ago, then maybe, just maybe, I might have kept one or two of my other friends. It doesn’t take that much work in preparing to talk. To have a few notes, prompts for stories to talk about, just being ready to be a friend, or, just tell them the truth, tell them just what it’s like to be you and how to help make a conversation work, for both of you.

For the average person, holding a virtually one-sided conversation is hard work. Adam too has learned that that is just the way it often has to be. He knows when I go silent, or appear to not be following what he is saying, that I am, I’m just not up to responding as most people would. I don’t need anyone to tell me that talking with me, is hard work, too much hard work for most people. Long before I was housebound, I had already lost most of my friends. They too found it hard work, even when they still saw me around, the fact I had nothing to say, meant they either avoided me, or spoke for a few minutes, then found an excuse to go. If there is one truth about today’s world, it is that people expect their entertainment and recreational life to be easy and to be fun. That is something that as our health progresses, we are without a doubt the total opposite of. We, are hard work, not just to talk to, but to just be around. Is it really such a surprise, that our friends are either few and far between, or just not there any longer, at all.

 

Please read my blog from 2 years ago today – 12/03/2014 – Don’t look

Often I am set off on my daily post by a comment that appeared on twitter in response to one of my tweets, but I had to totally love one, out of complete understanding that I read this morning. I had posted a picture on Facebook and put out a tweet something along the lines of “how nice it is to have the entire bed to yourself”, the response came from another who suffers with chronic pain, “especially when parts of your body choose to sleep in different directions”. I immediately saw myself lying in bed, yes on my back but with both my left arm and leg stretched across…….

 

 

 

 

I’m so lucky

I have been coming across a lot of blogs on this site lately from women facing a future of not being able to have children. They have made me think back on my own life, the years that it took, to have a healthy little girl and the joy, she brought into my life. I can’t imagine my life without her or her brother, who followed her less than a year later. Despite a series of miscarriages and the death of her elder brother, it never once entered my head, that I wouldn’t one day, have children. Like so many things in my life, I simply went with the flow and it all somehow just worked out. I feel for those women greatly, but my experience isn’t exactly the reassurance that you can write as a comment. Go with the flow, things have a habit of working themselves out, most women would find that at all helpful, but it was and is the only advice that I can truly leave anyone like them.

For the majority of my life, that is what I have done. I have busied myself with the minutia and let all the major things, just happen. Good or bad, they have collected themselves around me, and I have in many ways, just stood and let them happen, or at least, that is how it feels. I know I have said similar things in the past, all you have to do is read back, and you will find them. Just like having my family, they simply arrived and I embraced them, I became ill and in an odd way, I have embraced it too. I think if we are all totally honest, it is the truth of most people’s lives. I quite honestly don’t believe there is a single person alive, who wrote out a plan for their future, and by the time they were 50, could look back in honesty and say, any of it, happened as they planned. Life just happens. Yes, science is learning how to interrupt the flow, to change, or fix the bits of us that are broken. To give children to the ones who can’t have them, to change bodies, so they look and fit with what is in our minds. But still most, can’t afford their work, so we just land up going with the flow. Like it or not, it is the unfortunate truth of many lives, without money, we have little choice as to what our lives will be. At least, that is what the modern world likes us to believe.

I don’t know where it came from, what event if there is one, that made me this way, it may just be the way I was born if you like, my personality, but I have always just accepted life as it is. From wealthy to penniless, from years of physical and mental abuse to the sheer joy, of finding the love of Adam. I have seen every side of life, and not once did I do anything, but accept. I never planned anything, yet, here I am, in my own home, with the man I love and I’m happy, despite or possibly because of everything, life brought my way

There seem to be so many unhappy people out there. People making their own lives a living hell, because they want, what they don’t have. I am not talking about true want, the want for those basic things we should all have, a roof over our head, food in our bellies and someone to love and be loved by. No the people I’m talking about are the ones who have all of that and much more, yet still they want. They’re not happy to have the clothes that they wear, they always want the new, the better, the more stylish. They’re not pleased with the fact they have a home, they want that bigger, more flashy and more expensive one, but why? Because they want to be happy. Can’t they see, the only thing making them unhappy, is themselves.

I’m sat here, slowly dying, in a house I love, but I can never leave. I barely have the energy to write today, or more than a few minutes in each hour, when I’ve been free of pain or discomfort, but I’m happy. I have lost count of the people who can’t understand just how that is possible. They don’t see how, I can be content spending hours and hours every day, on my own, with no one to talk to. They can’t get their heads around the fact that there is only one person in my life, and he is all I need. That I don’t have a driving desire to be outside, to get out into the fresh air and do what they do, whatever that is. They don’t understand any of it, yet I think I understand why they can’t. It’s because they can’t accept their own lives, and their not content to live it, as it is. All of which in my eyes, makes me a truly blessed and lucky person.

I’m tired today. It’s one of those good tired. The one that embraces you, rather than drags at you, until you’re forced to give in. There is a contentment in being able to accept life just as it is, and if we are content, what more can any of us really ask for.

Please read my blog from 2 years ago today – 11/03/2014 – I have to

I feel brighter today, more connected and at last starting to head back into being myself. I realised this morning that I hadn’t actually make it clear that the feeling of being disconnected had nothing to do with what they call MS brain fog, there is no comparison between the two, I would live quite happily with fog for ever, if there it were a simple choice.

Just as I have found in the past when I start to reconnect to life, I am almost unable to stick to one thing, it is almost as though I am compelled to do a hundred things at once and I have no way to stop…….

Staying human

I’ve just completed my first 24 hours on my new tablets. Right now, I have totally mixed feelings about them. Thier called Mebeverine, I wish I knew where they get all these odd names for drugs, not the unpronounceable ones, they are down to the chemical make up, but the other names, that seem to vary from country to country. They make it very hard often to discuss how they work, especially, in this internet world where we can be talking to anyone from anywhere. Anyway, I have already managed to miss one dose, but I took it as soon as I remembered but it does mean, it couldn’t do its full work. The problem is, they aren’t taken at the same time, or anywhere near all the rest of the drugs that I take. Mebeverine has to be taken 20 minutes before meals three times a day. Even for someone with a brain, I am sure many forget them frequently. For someone like me, well, they are a ticking timebomb. Breakfast and lunch I managed fine, dinner time, it was an hour after I ate, before I even thought about them. This morning, well breakfast was 20 minutes late, which I have a feeling might just be what will happen a lot going forwards.

In many ways, I’m not sure if this first day is a truly fair test, as I following my 24 hour fast after my night of being sick, of course, means that my whole intestinal flow hasn’t settled properly yet. Three days had past without going to the loo until today, as my body doesn’t like it when things don’t happen just as they should. Nor is it helped by the fact that I haven’t really been feeling totally myself over that period. I’m not sure how to describe it, other than just odd. There’s been a lot of chest pain, breathing issues, and a huge and almost constant desire to lie down, as I feel somewhat light headed. New meds on top, well as I say, not the best test. On the good side, the pain felt less during the evening, but I woke once again with pain in my back and down my upper legs, that didn’t leave me, until three hours later, when I went to the loo. Ever since then, the pain in my upper abdomen has been bad. So do they work, well I’m really not sure, but they clearly don’t work the way that I wanted them to.

Life seems to be frenetic just now. Between my health being more active, the problems with getting to actually see a doctor and then just for fun, life threw something else on top of all of it. Yesterday morning, before Adam went to work, he told me that the washing machine had broken overnight. So yesterday afternoon, I had to go online and buy another one. I know that isn’t difficult these days, but it’s always one of those extra hassles, that life seems to find. In the past twelve months, we have already had to buy a new fridge freezer, new mattress, and a new cooker, now it’s the washing machine, what next.

I always thought that one of the joys of buying online was that you can totally avoid those annoying shop staff who try to sell you a ton of stuff on top, that you don’t need or want. Well, I was wrong. The phone rang this morning and there she was, all chirpy and smiling down the line. Her breezy good morning, her whole way of going over where we lived and then went into telling me the details of the machine I had bought, but nothing about it being on its way. I feel really guilty now for what I did next. I had already naturally stuttered and muddled my words a couple of times, and I saw a window, a way out of having to go through all that I didn’t want. I stopped her dead, and stuttered and stammered through the following. “I’m sorry, I’m not taking all this in, I have an illness that affects my brain, email me, please?” My acting skills are clearly honed, as I was patting myself on the back all the way through it. I have lived for so long hearing it, that putting it on, was easy, too easy and so wrong of me. She went straight to the end of the call and confirmed that our machine would be here in two days, exactly as I already knew.

I have only used my health in that way a handful of times. Every time I have done so, I have always felt guilty. It’s a guilt that I can’t help, as it feels so wrong of me, so wrong to make out that my health is worse than it really is, in that instant. Putting it on is just so wrong when you have spent your entire life, trying to cover it up. It’s wrong, because if I gave into the temptation at that second, might it just become too easy, to do such a thing. It’s wrong because, yes, that is where I am at my worst and might be, all the time in the future, but not now, not in this second. It’s wrong because I know without a doubt that there are people out there who don’t need to put it on, to push all the bad buttons, that’s their life and they so wish that it wasn’t. Yet, I did it. I just couldn’t be bothered listening to someone who I knew, was going to try and sell me insurance that I don’t want. I didn’t want to be on that phone because the phone freaks me out, I did it because I wanted to be anywhere, but on the phone. But that doesn’t make it right, so I feel guilty about it.

Chronic illness makes us feel guilty over so many things, from the occasions when we invited to attend, but genuinely couldn’t. To the ones we were invited to but used our health as an excuse not to go. It makes us feel guilty because we can’t go out with our partners, that their lives are tied to ours and what that means for them. We’re guilty about not being able to work, to contribute to both home and society. For sitting still, day in day out, watching out bodies turn into flab and being unable to do anything about it. Guilty for doing nothing, while we watch our partners do all the things we once did. It doesn’t matter what others say, how many times you’re told you’re being silly, that you can’t help how things are, you still feel it. Every time they fetch and carry for us, wait on us, aid us and care for us, there is always that guilt, as it shouldn’t be this way.

Guilt comes in so many different sizes, and from so many different places, but whatever the size of the pain that it causes, it always hurts. Unlike other pains, there is no magic pills to take, no relaxation or meditation, this is one pain that’s there, and even when you think it is gone, something always reminds us, and there it is again. It’s that pain that reminds us we’re still human, that we’re people who have hearts and care, that we have a conscience. It doesn’t matter how ill we become, all of those things remain true, all of them never just vanish. Our health may eat away at our bodies and brains, there are a million things that we have long forgotten, but somehow, we never forget how to be human. For us, it just makes life harder, but for those around us, it’s probably a good thing. Guilt is our monitor, our governor that keeps us being us, and removes the temptation to be, or do, anything else.

 

Please read my blog from 2 years ago today – 11/03/2014 – Hope dashed

I was listening to the news this morning as I always do when an article about MS and a new drug that has just been licensed in Scotland. I should have known before I even looked on Google that there would be some reason why this drug like so many others, would be of no use to me at all. It has happened time and time again, drugs appear and all too many of them are purely for relapse-remitting MS, so when I started to read and saw that it actually was for my type progressive relapsing my heart lifted and I set off to read the medical descriptions…..

 

 

Someone will die

When Adam called me yesterday at lunch time, there was something in the tone of his voice, that told me there was something wrong. The other day when he was at home there had been one of those automated phone calls to remind us that I have a hospital appointment next week. It turned out that Adam hadn’t booked the transport, despite my telling him when he took the responsibility over from me, that he had to book it as soon as he was aware of the appointment being made. As always, I couldn’t remember why it was important, and he was determined to do things his way. Yesterday, he called to book not just the ambulance for next week chest clinic appointment, but also the one for two weeks later at the breast screening clinic. He was stunned to find out, that there was no transport available, for either date. In fact, there is no transport available until the beginning of April. When I had gone over the system, explaining that you have to book early, my brain did it’s usual, it totally blocked out the reason why, all I could say, was that was the way it had to be done. It was about twenty minutes after he called, that I remembered, this happened once before, several years ago. It is one of my brains favourite tricks, I know all the rules, all they things that have to be done a certain way, but why? Well, don’t ask me, I don’t have the first idea, just the knowledge. At that time, just like this, we have been forced into rearranging the appointment, because, without the ambulance and their stairclimber, we can’t get there.

My chest consultant asked when I thought I should go back to see them. I said six months, but he wanted to see me in just four. There was an issue with the first booking, again with the transport, if you aren’t there first thing, you don’t get home for hours, often late into the evening, as it wasn’t a morning appointment, we had to change it. It was moved by two weeks, which on its own, is not that bad really. Now after speaking to the booking clerks, Adam has managed to book it and the transport, for the 4th of April. We were lucky, getting an appointment that close, it was only because there had been a cancellation. He is sorting out the other appointment this morning, but I just had a phone call from the ambulance service, cancelling the 4th of April transport and telling me, there is no space until after the 7th. Unbelievably, the “Hospital transport service”, as they like to call themselves, are now running the NHS, for those of us who are disabled. Adam is now going to have to go back to square one, and rebook everything. No matter what dates he manages to arrange, it’s beginning to look as though it will be six months between my appointments, not four.

This of course also throws up other issues, ones that must cost the NHS a fortune each year. How many appointments are cancelled each year, due to this problem, meaning doctors time being wasted and waiting lists just getting longer and longer? They spend money every day paying for staff to sit and make appointments and to manage individual consultants lists. No matter how proficient they are, if the transport service forces appointments to be cancelled, there will be gaps, points when wages are paid for doctors and nurses to be ready to treat patients, that is not being used. Every time an appointment is shuffled, it just makes those list artificially appear longer. Targets will be missed and all due to transport, not the medical service.

I find the whole thing unbelievable. If anyone wanted proof, that they system isn’t working, well here it is. What happens, if you consultant wants you to return in a week, or two weeks? What if it was essential for that appointment to be then, due to treatment plans? Would they just leave you at home to die, as without a doubt, this sort of service if it’s allowed to continue, will result in just that. It could also result in patients who could easily be treated as an outpatient, having to take up a hospital bed, something that is in short supply these days. Bed blocking, is constantly blamed on the care service not being up to the job. I bet if it were possible to investigate, there are people who are in this exact position right now, sitting in a bed, twiddling their thumbs. I said the other day, that the housebound and severely disabled receive a second class service, well, I’m changing that, we get a third or fourth class service if that.

I asked Adam to take over the arranging of hospital appointments and the transport, not only because, I find the phone hard to deal with, but I also found the system frustrating, even when it worked in their version of perfect. Just hearing all of this second hand is already stressing me, so I feel sorry for Adam. I feel even sorrier for other carers as Adam works for the NHS, in the very hospital where I go for the bulk of my appointments. He knows the system, not only the system but all the people who work in it, so it has to be easier for him than it is for those other carers out there. All he has to do is walk down the corridor to the very clinic and have a chat with the receptionist. He can, in fact, check the computer himself, so he knows exactly how the lists look and he can stand there looking at it, while he talks to the transport service. Everyone else, can only book an appointment, cross their fingers and try and book the transport. How long is it going to take, for the NHS to realise that their system is not suitable for purpose?

I was on the verge of publishing this when the phone rang. It was Adam, he just wanted to let me know that it is all sorted, well for the chest clinic anyway. We have both appointment and transport now booked for the 25th of April. As for the breast screening clinic, well the girl on the desk couldn’t give him a date over the phone, and will be posting it out to us.

 

Please read my blog from 2 years ago today – 10/03/2014 – Lost and in pain

I’m not here today. I don’t know where I am but I just know that I don’t feel connected to myself, somehow lost. I know in the last few months this has happened several times, but I will never get used to it, I guess it is as close to one of my ultimate fears as I ever want to get, my mind so taken over by drugs that I can’t find myself. I don’t blame the drugs for this because if it were them, well I…….