An unexpected truth

We kid ourselves over and over that we will learn the lessons that our bodies are trying to teach us, but nothing in life is that simple. We tell ourselves over and over that we can’t do this or that, but we keep right on doing it. We sit and nod our heads, as our loved ones reassure us, that they can manage and we have to stop pushing ourselves. We do all these things and then, we go right on and do it all over again. I have lost count of the times, that I have worn myself down, into a mear shadow, how many times I have made myself so ill, that exhaustion is of no importance, have I learned anything from any of them, well maybe a little, but clearly not enough. All my life I have been stubborn, I have been determined to learn every lesson myself, clearly I haven’t changed, and I have a funny idea that I probably never will. I have noted over the years, though, that the scale of my stupidity has shifted. I no longer climb ladders, attempt to spring clean the house in a day, or even to clean a single thing ever. The odd breakage probably had something to do with that as well. It’s odd how sobering a broken ornament becomes, considering the threat of broken bones isn’t.

If my thoughts are on the grandiose, my body has at least learned just how to put the brakes on, when it comes to my impossible schemes. A convenient set of spasms, a wobble as I try to stand, those everyday reminders that I’m not quite the person I was. So the ladders remain in the cupboard, the bleach in another and my brain busily comes up with an alternative, something more manageable, something that doesn’t need me to stand all the time, that will allow that feeling of completion, but won’t kill me, along the way. As they’re still on my mind and still affecting my body, let’s take those pancakes, as an example. Making pancakes isn’t a grandiose scheme, it’s an everyday task, it’s the normal, the sort of things that we teach our children when they first ask to learn to cook. So why can’t I do it? Simple, because I can’t make that mind shift, that step needed for me to accept, that I’m now that child, the person who can do nothing and has to have everything done for me.

The longer that I am ill, the longer that I have been thinking about this. My conclusions though are the thing that more than surprised me, and I know they are right because, we all know what it feels like, when that right answer, appears in front of you. We don’t learn. I don’t believe, that I learned a single thing about my limitations, if I had, I wouldn’t even spend time thinking about doing the impossible. I would have stopped still trying to work out a way, of making all those things possible. I wouldn’t in my head, still be creating new gizmo’s that might make this or that easier, make it something that I can do. The truth is, no matter how good the gizmo, I still would be able to do anything. So I haven’t learned, because if I had, I would just be saying OK, that fine, I won’t. If I had learned anything, I wouldn’t be torturing myself almost daily trying to do what I failed to do the day before. That’s not learning, that’s stupidity.

I haven’t even accepted my limitations, as accepting again means sitting back and not thinking. If you accept, then your not stupid. Accepting is a thought out, reasoned analytical process. It’s actually beyond just learning, as learning means you don’t stick your finger in the same flame that burnt you before. Accepting means, you take that lesson onwards in life, and by association, know not to put your finger into or near anything that is hot. A reasoned analytical process. So to be able to accept, I must have already learned, and I’ve already proved that I haven’t. I know that I have accepted my illness, that I have accepted to some extent my limitations, as otherwise I would still be trying to go up and down those stupid stairs that keep me apart from the world. So there must be two levels to acceptance, the one that we learn and the one that is a blind reaction, or is it? If it were a blind reaction, then we would do it to everything, and that just isn’t the way humans are, so something else is at play, something else, is changing our behavior.

At best, if anything, I have grown accustomed to not being able to do things. Over time, I have grown used to not having the energy, to not having the strength to do those things that I want. It has been a long slow process. If I sat Adam down, and we discussed it, he would agree with every word I have written. He has spent years pulling his hair out, trying to stop me doing, what we both know, I’m just not able to. He eventually gave up, as he learned that he wasn’t able to stop me, any more than I was. The problem is, we can’t unlearn. Once you know you can do something, unknowing it, doesn’t exist. So we slowly become accustomed to failing. We become accustomed to not have the energy, to not being able, and use to, a more sedentary life. It takes time, but just as I am accustomed to being alone all day, I am accustomed now to not rushing around cleaning everything in sight. Once it really hurt not being able to do those simple things, I still wanted to, but I didn’t. Now it’s because I am used to doing this, and this is what I do. We adapt, that is what people do, we adapt to our limitations and modify our expectations. Just like being forced into changing your line of work, you adapt, and in time, you become accustomed to it, most even find themselves happy in their new role. Disability, is just the same, just more dramatic.

Letting go, handing over the responsibility of life, is hard at first. Again, Adam can vouch for that. At first, I made his life hell, followed him around, double checking everything, but as I became accustomed to it being his role, not mine, I let go. Humans are amazing, we can adapt to anything, we may not want to, but in time we all do it. With the right attitude, we can even enjoy it. What’s better than having someone who does everything for you? Clearly, doing it yourself, but when you can’t, it’s the greatest gift in life we have. We just have to remember to tell them so, every now and then. I have lost count of the number of things that I have agreed I am no longer able to do, as logic is a powerful force, but I have always adjusted to the new reality, not learned or accepted, but adjusted. The future holds some that right now, I don’t believe I will ever be able to adjust to, but then again, I never thought that I could have adjusted as far as I have, yet here I am. Unlike the process of learning or accepting things, you don’t actually know your adjusting until you look back. At the time, you think you fighting, showing this disease who’s boss, but we’re kidding ourselves. All we’re doing is fighting the process that will eventually always win, we always adjust. As for the future, whether I like what lies ahead or not, whether I believe that I can live the way that is predicted for me, I will adjust, but how far. Is this game unending, or is there a point where we can adjust no more. As yet, I can’t answer that, but who knows, as I said, humans are amazing.

 

Please read my blog from 2 years ago today – 29/01/2014 – How “it” changes

There are some strange things that I have become aware of as the years of illness have passed, one more than any that you simply forget how “it” used to feel. That “it”, well it is almost everything, from how……

A mind of two halves

Whatever is happening out there in the world, right here, winter has arrived and the lead into Christmas along with it. Sorry, if that disappoints you, but I am sure there are quite a few out there, that are right there with me and fully understanding my reasons. The best Saturday night TV viewing of the year has begun, “Strictly come dancing” followed by “Dr who”. It’s odd how two programs, that are the total opposite of my normal style of viewing, have so totally taken over my view at this time of year and the excitement that I find in the fact that they are both back. I am anything but a bubble gum TV viewer, give me a good documentary or failing that just the BBC news and I am happy, but I just can’t resist these two programs. I guess we all have those guilty secrets, those things that our mind tell us are ridiculous, but our hearts jump with glee at the mere prospect of. So that’s me happy until Christmas, even though the good “Dr” doesn’t run until then, I know the “Beeb” won’t let me down. They always find something as deeply bubble gum and good to take us through to the end of the year.

It’s odd how you change over time to fit your abilities and demands. 30 years ago, I didn’t really care what was on TV, I had too much to do to pay that much attention. Every evening once all my tasks had eventually been completed at around 8 pm, I eventually sat down. Well, I did have two kids and a typical home for the time. No gadgets, beyond a washing machine and a hoover, and I was a fussy housewife, so enough to keep me busy from 6 am to 8 pm. When I broke for the day, it was to knit and sew clothing for the family, or decoration for our home. TV was a background as the radio was during the day. 25 years ago, I was a DJ, didn’t care about my home as I was never there and as for TV, I never saw it. 15 years ago, once again a proud housewife and busy business woman, constantly working or cleaning, with no time to just sit down and watch anything. Now, I don’t clean my home Adam does, I don’t work, I don’t go out and I don’t have the dexterity to make anything. TV, the once somewhere in the background item, has become my companion. Regardless of anything else it is always on, and I always have something to watch or at least listen to from a continual supply of programs I have recorded or downloaded. Right now I am listening to a documentary about world war 2, as I write. Yes, I can do both, not as well as I once did, but I can. The silence without it would drive me mad.

Once silence was a joy, now it just reminds me that I am sat here alone. Silence sounds somehow like a prison. A reminder that I can’t make the noise that once filled my life. That I am locked inside its walls, with no escape. During the day, the TV teaches me, learning something all the time is one of the few things I can still do although I have no outlet or requirement for that knowledge, it somehow makes me feel more complete, more part of the world. No matter how well you might adjust to being housebound, the one thing you still need is to feel attached to the world. For me, that is what learning does. It can be history, or any other subject if it deepens my understanding of life, then it is keeping me connected to it. My last job was probably the job I actually loved the most. What I loved about it was that I never stopped learning, from the day I took on the role, I never stopped. I taught myself everything I could need and more about computers, from programming then onwards. I had to learn about business, laws, regulations and best practices, all needed updating constantly, I spent more time researching than anything else and I loved it. When it ended, I felt lost.

I didn’t even realise what I was doing when I decided that I was going to learn all I could about the two world wars, a subject that chose me rather than the other way around. It had just been there one day after a show I chose and I didn’t change the channel, oddly, it was interesting and that as they say ” the rest is now history”. I had unintentionally replacing that discovered need through work to learn, by learning about life. I can’t tell anyone how to replace what they miss from their working life, but I bet that learning something new, would help anyone and TV is a wonderful passive way to learn and doesn’t cost you a thing. Keeping our minds entertained and busy is essential. Sit on your settee day in day out doing nothing and watching endless bubble gum and movies and you are going to deteriorate before you even see it happening. Just like good posture and good relaxation helps out bodies, I truly believe that learning helps our minds to stay connected.

I woke last night once again needing to head for the loo. My mind may have worked out how to sleep every night for ridiculously long periods of time, but my body hasn’t. I pleased and surprised that I managed to get to the bathroom, stopping off for a cigarette and back to bed, without once seeing Adam. As always, wheels or not, I did the entire journey in total darkness and without banging into anything too heavily. More importantly, I didn’t wake Adam. I was lying in bed, starting to head back into sleep and feeling rather chuffed with myself, when I suddenly noticed that the entire right side of my face was freezing. I didn’t have to think about it, I knew it was the nerves playing up. There was no other reason why only one side of my face should be trying to tell me, that the outside temperature was several degrees below zero. There has been no improvement in my face sensations and movements at all. It is still my right side that is the worst and it does seem to still be spreading. More and more of it keeps sort of setting if you like. The movement required to speak or even smile at times, from my side, feels set still and unchanged. Adam has stopped asking if I have a cold, but I am becoming more and more aware of it, even without his reminders. What I don’t like personally, is that I can now feel it far more clearly, right up to my eye level and crossing the bridge of my nose. There are no time limits as to how long things keep getting worse, or when they will stop or even get better. All anyone can do is wait and see.

I really do seem just now to be falling apart again. The speech changes that the doctor noticed when I was at the hospital wasn’t due to the right side of my face, but the fact that I can’t end my sentences and get lost in my words. They too are happening more and more. In the last couple of months, I have been really aware of them, usually when things are tense or uptight. In the last couple of days, they are happening even when I am totally relaxed. A year ago, I would have held onto my last word and not let go until I found it’s missing friends. Now, I just stop. It is as though without permission, my brain has decided that there isn’t a point in fighting it any longer and that I have accepted that my brain just isn’t up to it, I haven’t. I am now totally unable to finish what I was saying, the blank is so deep that I don’t even have that feeling any longer that the word is on the tip of my tongue, as it isn’t. It has totally vanished for all time and there is no way of finding it. That was something that used to happen occasionally, now it is the norm. Worse still, it used to happen a couple of times a day under normal living stresses, now it happens every few sentences, even without stress. I knew exactly what my consultant was pointing out, what I didn’t know was that it is now as active as my muscle problems. Yesterday, was a mess, from my sentence to my last. Adam quite sweetly tried to say that it wasn’t that bad and was only showing signs of getting worse in the last couple of days, when I checked him, he shut up. Proof, he was just being nice.

Everything seems to be active just now, I don’t know why, but that is just the way it is. I guess, I am in another relapse, it’s just a matter of waiting until it comes to an end. That’s always the problem, they can last hours, days or weeks and when you live also with progression, it’s always hard to know which is which.

Please read my blog from 2 years ago today – 27/08/2013 – Connections of life

I don’t know why I didn’t think about it before but I now can see a clear reason why I choose to blog rather than just join into one of those groups, well actually I can think of million reasons not to join a group, but that’s another post. I started years ago with one of those slopes that once stood on never….

Positive learning

I’m tired today, nothing new there then. Joking aside I am really tired I have been since Saturday I seem to have these sleepy spell and have done for years. No matter how I try, I have never managed to work out what the trigger to them are, it isn’t as though I have been doing too much as I haven’t really done anything for several years now. I have been going to bed about an hour earlier than normal and I am sleeping longer in the afternoons as well, the full two hours I actually set my alarm for. I have to restrict it as I discovered long ago that I will just sleep until something wakes me, that way I am not tired enough to sleep properly at night, a cycle that if I keep it up means I am out of line with the rest of the world and my routine.

It isn’t the going to bed early or the sleeping longer in the afternoon that I find difficult, it is more the general feeling of heaviness and sluggishness that is so wearing and just really compounds the situation. We all know what it is like to just want to curl up and sleep, to feel out of sorts and not able to get things done, this at least is one condition that is easy to explain to all, having that tiredness all the time, well it is in itself tiring, making a self feeding circle. It has to date always lifted and I have returned to my normal state of tired. Strange to think I know that life can become a constant state or either tired or exhausted, but that pretty well describes just how it is, a constant with simple variations of intensity. If there was a way to end it or to recover from it I would love to know, but in a strange way it is also something that you get used to, not knowing when you go to sleep if there is actually any benefit of what you are about to do or not. To me the greatest thing about sleep is that it takes me away from the pain and all the other wonderful things that MS is doing to me. Sleep is a great escape but is it living is the really big question. Many would say no, but I now would say yes. Even if I slept to the extent that I only had 8hrs a day to call day, I would still see it as living, there is enough time there to get into some kind of trouble or other.

There are days that I wish, wish that I could wake with a spring in my step and desire to rush of and do something, but my first thought each day is that of pain, not what pain I will have to deal with as the day extends but of the pain that is there from the second I move for the first time, often though it is simpler than that as it is the pain I feel as soon as the alarm rings, even before I reach to turn it off. It is an unusual world but it is still a world, it is still a place to think, to watch, to love, to feel and to believe in, those to me are the qualities that make all this still worth well. I have always been an observer of life, someone who would quietly watch and learn from what others did and said, but wasn’t scared to say what I thought of any given situation, which often got me into trouble. The biggest thing I learned is there are two sides at the very least to any situation or course of events, it is the same with chronic illness. There is a list so long that I couldn’t actually complete of things that are wrong and difficult to deal with, things that make life difficult, but the flip side is the fact that I now have the time to spend on my desire to understand, to learn, to watch and to think through things. I have the time to enjoy the things that I never did before, I also have the time to remember and to analyze all that has happened in my life from both sides, when maybe I only saw my own before.

No matter the negatives as I have often said there are positives too, positives that maybe aren’t seen when we are busy denying the fact we have an illness that destroys. I still have much to learn from my MS, as strangely it has probably turned in to the greatest learning tool I have ever known.

Doing the Knowledge

There are always loads of things to think about in life and I have been told often that I “think too much”, a phrase I have never really been able to understand. To me if you don’t question everything then you don’t have a chance of understanding anything. I am inclined to believe that “knowledge is king”, it’s OK I’m not trying to put in as many quotes as I can into one paragraph, they are just apt to my post today. When I first had the idea put to me that I had MS I wanted to find out as much as I could about what I was facing, at that point I didn’t have a confirmed diagnosis, just an opinion of a doctor who didn’t specialise in neurology but ENT. What I did was what many do I started to read everything that I came across, I read and read and scarred myself to death and also laid down in my mind a lot of rubbish, of things that may never happen or have and aren’t as bad as the medical description made them out to be. At that point I thought I was arming myself for the future, that I had to know what was possible to happen to me as time passed, I wasn’t.

One of the things that I would love to change about the whole medical system in the UK is how and what they tell you when. I do believe strongly that they should tell you everything they know and not hold back anything at any time, but they miss terribly the opportunity to help us all learn and understand what is wrong with us. Some of you may think this isn’t a Doctor job and I am not suggesting that it is, what I am suggesting is that knowledge packs should exist for all chronic conditions, it is that pack that should be handed to you at the point of diagnosis. I and many I have spoken to have all come away with questions that once out of the hospital the only place we have for information is the internet and as we all know that isn’t the place for a novice to find reassurance.

The first thing that I would want to see in such a pack is firstly a FAQ, I will almost guarantee that every doctor could put together a list and those list will be not unexpectedly reasonably identical. I know in the last few months on twitter that I get asked again and again the same things and I try to answer but I am a patient not a Doctor, I can only ever answer with how it affects me. I do know that a lot of conditions are individual to the patient but there always are huge crossover or even universal symptoms that could be explained.

The second a glossary of terms used and what they mean. I have on a few occasions translated doctor speak incorrectly and it is their language that is confusing ,not what they are saying, plain English isn’t used by the NHS and it often feels as though they are talking in a foreign language on purpose so you don’t know what they are really doing.

The third would be a list of web addresses and literature, that have been checked for their presentation of information and passed as suitable to read. I have trawled through medical papers and research notes trying to find what I am looking for and not been able to understand most of them, wasting hours for a simple question.

The fourth a list of organisations and charities along with contact details that specialise in assistance for that particular condition, with a few details of how they can help. I am not big on these but I know a lot of people find them helpful.

The final one is actually the one I hear most tagged with “no one told me” is a list of what benefits and support that are available if you fit the criteria and how to claim them. There should also be info on what might be available in the future such as carers, respite and so on, all these things I know change from area to area, and the criteria change from time to time, but if you don’t know it even exists you can’t even try. I spent 2 years paying out over £300 a month for taxis, there was I eventually discovered a payment I could claim that paid the difference between what my travel expenses would have been use a bus to travel to work and what the taxi cost was, it worked out that I only had to pay about 1/3, the rest was picked up by the EU. I know I was surprised to the EU doing something useful.

I would have given my right arm to have had such an information pack. It was months after diagnosis that I was given a couple of one page leaflets that told me nothing that I hadn’t already found out, but it had taken a lot of work and upset to get it. I really believe that armed with this information it would make adjusting to your condition a lot easier. Not everyone I know wants to read anything other than a one page list of contacts, but the more you know and the more you learn about thing, the better you are armed for the future. When a new symptom that you didn’t even know could happen in your condition appears, it is frightening, if you already knew it might happen, then the fear is lessened and being calmer, you deal better with the situation you find yourself in. In a round about way as well the pack would save the NHS money as a lot of visits to the Doctors are not needed all that is needed is to know it is normal to your condition, or that it is something to get seen about asap.

Not everything can be covered for every person but surely it is better than people around the country stressed out trying to find the info they need when someone already knows, and they just haven’t told you.

Learing into the Future

Sometimes I am not as quick on picking up on something as I like to think I am. Strangely this has been on of my beliefs for many years but I realise that it is actually as important to surviving chronic illness, as my belief that you have to keep achieving, for those who don’t want to write or don’t have the space or funds to set up a hobby that requires more component than a PC or paper, at the very list this is something all can do and I did without meaning to. I have mentioned a few times in the past that I have learned a lot in the past few years, not just about surviving illness and how to adapt to a different type of life, but I have learned a lot about history as I have a love of documentaries. I believe strongly that keeping your mind active is important, but it is more than that, I hadn’t realised as it was something I do without thinking, I have been turning my mind to learning and unlike school I am learning what I am interested in. With so much on TV all day long and the sky box to record what is on while I sleep to watch during the day, makes it free and so easy to do.

The strange thing is that when I was at school learning felt like hard work, but when you are doing it because you want to, it is very different. I know a lot of people might think what is the point, well I can see that, it isn’t as though by learning I will be able to get a better paid job or even a job at all, but what it is, is a way of expanding an interest, now that I have the time and the chance to do it. I have found that by making myself watch the odd program that I didn’t think I would like, has also formed new interests that I would never have considered before, notably the second world war. All my life I had been avoiding anything involving it now I don’t think there is a program that I haven’t seen. Although my body has let me down somewhat and even my brain isn’t as sharp as it was once, I still have enough left to work on keeping it learning and keeping it active. That is why as I have mentioned before I worry when I find myself staring into space with nothing in my mind at all, I have never had a mind that stood still long enough to be staring in to space.

Learning is as much achieving as sitting here writing is and I think is just as important. Keeping my mind busy isn’t about avoiding thinking about what is happening to me, but it does stop me dwelling on what I can’t change. It does also give me interests to fill the gaps I would have spent years ago going out, working and doing housework. I believe 100% that if I had done what many think of as the normal journey of slipping into sitting on the settee watching day time bubble gum TV, I would be in a very different state, I believe that I would have been in the state that I fear most, a half human zombie. I am constantly asked how do I stay positive, well this is probably part of the answer, the combination of my natural attitude, achieving, learning and still growing as a person. I am still developing who I am, as long as I am move into new areas, still enjoying discovery of what I didn’t know before, what have I to be depressed about. Life after all is about learning and moving onward, not about looking backwards and wishing what is, isn’t.