A secret, I can’t keep

Despite the fact that Adam is on holiday this week, I am going to be on my own today, he is going to visit his Mum. I know that it sounds terrible, but this to me, is one of the good things about being housebound. Don’t get me wrong, it’s not that I don’t want to see his mother, it’s the fact, that she lives in the middle of nowhere. To me, nothing is worse than being stuck on a bus for hours. I have never been a great traveller, I hate buses as much as I hate cars, you sit down and that’s it, your stuck. Condemned to sit there, over miles of boring countryside, that looks just like all the countryside you have ever seen before. Travel was never high on my list of things to do. For some reason, I have never fully understood, I actually used to enjoy being on a train or even a plane, the problem arose, when I reached my destination. All I wanted to do, was go home and that feeling didn’t change, even when I was somewhere I had chosen to go. I don’t know what started it, all I do know is, it was there within me, from childhood on. I would almost say, that I was born this way, as I can’t think of a single occasion or event that started it. No matter where, or how long I was due to stay there, be it hours or days, I just wanted to go home. I went off it even further, the day they said that you could no longer smoke on a bus, train, or plane. That for me was the final straw, I haven’t left Glasgow, for any reason, ever since.

I guess, we all have things like that, that are almost part of our DNA if you like. It doesn’t matter what we do, or what happens, we just can’t change them, nor can we find the real reason for them. Oddities, that have always held us apart from others, but feel totally natural to us. I know for a fact, that if I said “I hate going away on holiday”, others always looked at me as though I had fallen off a Christmas tree. It is one of the things that I have found totally wrong in this world, that we are made to feel like an alien, just for being ourselves. This example is a truly minor one, I could have chosen several that I personally have, but thanks, to Adam, this was the relevant one to today. That, though, doesn’t actually change the core element, it set me aside and made me feel odd, but only when others knew about it. In some ways, there is a clear parallel there with living with an invisible illness, it can be our secret, or we can tell others, but at what cost. It is for some, I know, a huge soul-searching time, do you tell everyone, anyone, or no one?

I didn’t have to think about it at all and that is the absolute truth, I didn’t question it, not even once. I had nothing to hide and nothing to be embarrassed about, I was quite simply ill and it wasn’t my fault. I didn’t just tell those who needed to know, I told those who I thought should know. When you are told that you have a totally unpredictable illness that is also progressive, it means that unless it is a fleeting relationship, people will notice something. You could argue, that it is no one else’s business other than yours, but surely it is less embarrassing, just to be honest. I went to work the day after I had my full diagnosis and didn’t just tell my direct boss, I told those I considered to be my friends and my staff. I also told all of them, that I didn’t want it to be a secret. I preferred that people knew that the reason I might be staggering down the call center or suddenly lying on the floor wasn’t that I was drunk, and if I did fall, that I would appreciate a hand back up again. As time went on, I also saw it as a great way of teaching those in the company about just what PRMS was and what it did. When a couple of years later I had to have the chemo treatment, Mitoxantrone, I sent a company-wide memo, asking people to stay away from me if they had a cold, due to my weakened immune system. Outside of that period, they all knew they could ask me anything at any time, I was quite happy to talk about it. There was one huge change within the entire company that I noted and documented, the sickness level fell. Firstly, it was me, that the call center staff had to speak to if they weren’t coming into work. It’s hard to call up someone who is clearly far iller, but still at work, and say your not going to be there that day. Secondly, that effect snowballed. Just having someone around who was not being beaten by illness, does make people think twice about just how ill or not, they really are.

Outside of work, I was just as free about talking about my health. Anyone, even total strangers, I had no problem saying what was wrong, if there was a need to. Once you are in a wheelchair, well that need diminishes as it is no longer invisible, but it is then, that I found more people asking. I suppose if you still look reasonably healthy, people do wonder why you are on wheels. There were many occasions, where I found people looking at me in a way that I could see the question in their eyes. I would always smile and tell them that it was OK they could ask, or if we were already talking, I would just bring it into our conversation so that they didn’t feel rude. To me, that is the way to deal with it. If we, the disabled, want understanding from the public, we have to be ready to give it. It is human nature to have questions, to have the need to know, we are inquisitive creatures, especially children. I have had several odd questions from them, one I remember clearly in a cafe when I had my nasal gastric tube. On that occasion, I even landed up taking my spare tube out of my bag. She wouldn’t believe how long it was, so I showed her how the two matched against each other and explained the missing piece was deep inside me. Her mother, well she had been doing what grown ups do, telling her daughter in a whisper, not to stare and not to ask loud questions. I just wish, her mother had felt that it was OK to question.

I can, though, fully understand why some people choose to say nothing, for as long as possible. Some will just feel that it is personal, that it is their business and no one else’s. I can see that, but what happens when they do suddenly slur their speech or can’t walk properly? How long will it be before they are forced into telling them anyway? Aren’t their colleges and friends going to feel bad, that they didn’t feel that they could share such a thing? Personal, to me, is fine when you are talking about things like finance, but any health condition that is bound to show itself at some point, can’t be personal forever. I do understand it, but I believe that it is littered with pitfalls and it’s only a matter of time before it’s out of their hands. I don’t know how it is in other countries, but if it is a case that they fear they might lose their job because of it, well that can’t happen in the UK. The law is quite clear, you can’t be sacked because of your health. The company has to make appropriate changes to your work and workstation so that you can carry on working in safety. That includes, regardless of cost, buying new desks and chairs, putting in ramps when required and a lot more than anyone thinks. It can cost the company thousands, but they have to do it, it’s the law and mine did.

What we tell people is up to us, but it is something, that needs thought. I was perfectly upfront with much of it, but yes, there were some things that I kept to a select few. Discussing the use of catheters, or the loss of libido, weren’t the sort of subjects I was going to bring up with the sales team, as they say, too much information, but the more general things, well I had and have nothing to hide. Some conditions clearly can be hidden if that is the person choice, but I would urge everyone to think carefully, there are pros and cons to either side of the argument. Our health can be isolating, to volenterally isolate ourselves futher, seems an odd thing to do. Even if my condition had held a social stigma to it, I like to think that my reaction would still have been the same. In fact, I think, that I might actually have been some what forceful about telling people what was wrong with me, as my duty to teach, would have been felt even stronger. To me, education is a wonderful thing, whether you are the student or the teacher.

Please read my blog from 2 years ago today – 22/10/2013 – It’s a day

Pain took hold of me yesterday afternoon and destroyed my plans for the rest of the day. I had been going to have my nap earlier than normal so I could then….

Finding our balance

It was clear yesterday that Adam had been playing catch up with my blog. I have for a long time worked on a safe theory of not telling Adam about things when they happen. If I do, he goes into a panic mode and spends the next hours jumping at every tiny flinch or twitch. If I don’t, then he reads about it least 24 hours later or at least a point far enough from the event for him to see that I am not about to roll over and die and that no real damage has been done. From nowhere last night, he started questioning me about the blank that appeared in my brain when talking to Jake last Tuesday. Out of all the things I had written about in the past week, this was the event he had pickup on and was clearly still playing on his mind, no matter how far past that point in time that we had travelled. I guess we all have things that worry us and to be honest, I had totally forgotten about it until he mentioned it. I had like all the other odd things in my life, just chalked it up as the first. That doesn’t mean I am expecting it to happen again, just like my leg going on Saturday, it started as a first long ago, now it’s a concern.

When you live with a list of serious conditions, the odds on your body doing something to you that a healthy person would find odd in just a single day, is high. I am so used to finding myself wondering either what was that, why did it do that, or trying to remember if I have felt that before. My body is a mass of odd. If it wasn’t I think I would be stunned, I actually can’t remember what it is like to live in a normal body, rather dull I would think. Joking aside, my body really is a mass of odd. I don’t think I could find an area that hasn’t produced a strange feeling, a peculiar sensation or an actual pain from an ache upwards. A muscle that hasn’t felt a spasm, a twitch or weakness beyond a kitten. Or a nerve that hasn’t learnt to fire off messages that are nothing but complete lies. Maybe, yes, I am complacent and dismissive about it, but who wouldn’t be. Then there are occasions where something is so marked, so outstanding, that I can’t help but not just chalk it up as something new, but I do find myself afterwards just a little concerned. I admit that is the case with last Tuesday. Adams mentioning it was expected, I knew that just like I was at the time, once read he would know it was beyond anything that normally happens and would worry. We had one of those odd conversations, which are probably universal with couples when one has a chronic condition. Adam clearly wanted me to know he had read it, his tone of voice and the way it began with a long “So”, said he wasn’t really happy I hadn’t told him that day. I spoke in a bright, but matter of fact way, putting in the side note of ‘don’t be silly, it was something and nothing, not worth talking about.’ But I also echoed his concern, just to show that I understood how he felt. Our words didn’t matter at all, it was all in our body language and all in your voices. Both of us making our point and both of us equally saying this is something to be noted and not ignored.

It can be hard sometimes being chronically ill, not because of what it does to us, but because we know that in many ways it is our partner that takes the brunt of it. I don’t deliberately hide things from him, writing this should be evidence enough. I would have to be totally nuts if I ever thought that he wouldn’t read it. I don’t tell him everything at the time, partly as I want him to see that I am fine as I said, but also because if we talked about it all the time, it would become oppressive and take over both our lives in a way that I couldn’t stand. Being ill all the time is draining. We have so little time together, that the last thing I want to do is sit there talking about nothing other than the very thing that keeps us apart. I can’t hide everything from him, any more than I would want to, that would be totally disrespectful, but I do want to hide enough that we can have some semblance of normality. The time we have together can never be what either of us would truly call normal for us. My health stole 90% of our normality, but what is left is precious and means the world to me.

Just as much as Adam keeps telling me, that it is his job to look after me, I equally have a role to play, to protect him from unrequired worry. I think ever single person with chronic illness wants to do that. We can’t stop our partners, carers or families from worrying, even if we never let them see a single thing that happened for a whole month, they would still worry through every single day of it. Humans are like that. We also go out of our way to protect those we love and I can’t help being human. I hate what my health has done to me, I hate even more what it has done to Adam. It’s my health, my body and my problem, it just doesn’t feel fair that it can reach out and tear him apart as well. The worse my health is getting and more it feels as though I am hurtling towards a cliff, the more I hate it. I hate the facts and I hate the possibilities even more. I might be a good actress these days, but no matter how much I act, I can’t act well enough to hide it from myself. When you have been with someone for 17 years, trust me if you can’t hide it from yourself, you probably can’t hide it from them.

My health is a scary thing. It’s scary to me and it’s scary to Adam. If I could find a way of changing that, I would give up anything I can think of. It’s not fair, it’s just so unfair that anyone other than I should feel anything about my health other than me. My prognosis isn’t good, our prognosis still seems bright and if we both hold onto that, well after everything is said and done, it is something worth holding on to.

Please read my post from two years ago – 26/07/2013 – A simple thing called happiness 

I have been told over and over throughout my life that I set myself up for people to turn on me, it always comes out of the blue and for what I see no reason at all. I have also been told just how I do it, but does that stop me from a belief in the blanket truth and…

It’s good to struggle

My body is still letting me down big style, just as it did yesterday even though I stuck totally to my own diet when I normally ate it, but the pain levels kept peaking and my tiredness was clear to me if not anyone else, although I don’t think my acting skills were that good. I had managed to have over an hours sleep before Teressa and John arrived, but as is often the case it wasn’t really enough. Ever since Thursday, my diaphragm hasn’t settled at all, even when I woke up this morning the first thing I noticed was it was tight and uncomfortable, normally I would wake at least for the first half hour or so, without it feeling as though it is trying to cut me in half. Despite all the work that was done on the settee and the fact I know it is a million times better than it was before they resprung it, added new seat cushions and is now as good as any new settee, it is the worst thing I could possibly sit on for long periods of time. It didn’t matter how I wedged myself into the corner, or tried to lean rather than sit hunched forward, the best place to breath with ease, as the day went on I became more and more uncomfortable. I am actually beginning to wonder if the disaster of Thursdays Pizza had actually a large portion of settee mixed in there, that I just didn’t see at the time. I am still in no doubt that I ate too much and that was the cause of my pain in my stomach that followed on for days, but I now have a small doubt that it was totally responsible for what happened to my diaphragm and rib cage. I know it is impossible when you have conditions like PRMS and Fibro, to ever put the blame for pain on anything that we do, but it does quite often play a role, the hard bit is working it all out.

I think from my experience and those of others, once we have that diagnosis, that medical reason for what we feel, we are inclined to sit back and say there is nothing we can do, we just have to live with it, sorry but that is so wrong. There will always be things that we can’t change, but with them all being so personal it is often hard to give anyone advice or help with their personal conditions. I think it is one of the reasons why I shied away from all those forums that are out there apparently set up to help each other, the problem I found with all of them was always the same, one dominant voice that shouted louder than everyone else and if they didn’t personally make the discovery, or it is something that didn’t like or hadn’t worked for them, it was instantly tainted for everyone. None of us are experts on anything other than ourselves, but I do strongly believe that we should share our knowledge as you never know, it might help someone else. For me, the only rule I have ever had is it can’t cost anything. It’s OK, I am not going to go over all that again, as I honestly think I have said everything before. For me it has always been small adjustments persisted with that have turned out to be the things that make the most difference to my health. Unsurprisingly, food, sleep and relaxation have been the biggest when it comes to how I feel, followed by those things that make life easier or safer, like a new bathroom with a walk-in shower and seat. Dependant on our physical abilities and problems, we all will find different gadgets that help us in our daily life, along with different aids. My personal experiences has shown me that it is all too often the simplest and cheapest that work the best, like a pair of old fashioned nutcrackers for opening soda bottles where the lid it too tight and too small for my hands to cope with. The best gadget there is, despite being one that I have complained about continually, is our own brains. We alone have the ability to work out for ourselves what helps, what doesn’t and what is physically comfortable or not.

I think the worst and most hated gift I was ever given after I was diagnosed was well meant and given with love, but found it’s way out of the house and in the outside bin within minutes of my unwrapping it. Adams gran had bought me for Christmas a trolley so that I could use it to move plates, cups and glasses from the kitchen to the living room with ease and safety. I still to this day just writing that, can feel the hate and loathing I had for that object, irrational to many I am sure, but it is the perfect example of why no one other than the person who is ill, should ever buy something “to help” someone who has a chronic illness, without talking through the whole thing with them first. To me, it was this symbol of how she now saw me, as crippled and unable to cope. It put me into the pigeon hole that said I was a person to be pitied and required, despite the fact of just being in my early 40’s at the time, to be treated as a disabled ancient person. I know that was all in my mind, but our minds are us and far more easily hurt than our bodies are, especially when we have already had the final control over our lives taken away by our health. No matter how helpful other think they are being, we need to learn for ourselves what we need, what works and what doesn’t, not have it imposed on our lives. I try hard not to just give into anything, any new thing that appears has to be assessed over a period of time, before I know if there is anything I can do to improve it or if I need to start looking for something outside of myself. Pain is a symptom, not a sign that we need help, but that we need to assess everything we are doing that might be the cause and to see if we can change it or totally remove it ourselves. No matter how bad our memories, we all have the ability to analyse what is happening to us, if it has anything to do with our known conditions or if there is something else going on and outside help is needed. It is one of the things about modern life that I hate, disabled or not, this feeling that throwing money at it, is going to find the answer. Having lived through the 70’s and 80’s when gadgets seemed to be king and were bought by their thousands, just to land up at the back of a cupboard totally unused, it taught me that the answer is normally to hand and gadgets are usually the answer to a question no one has ever asked.

There is one other danger about being ill that I think many miss and many fall into, if you have something to hand that makes life easy, as humans are lazy and will use it. That may not sound as though it is a bad thing, but if it means that we stop using the little ability we have and simply give in to grab rails or two handled mugs, we lose those abilities faster than we should and our downwards path is accelerated. I can’t do that much, but I refuse to give in and stop doing what little I can. As I said to Teressa the other day, I don’t claim the higher level of the care component of my disabled living allowance, I have little doubt that I would be awarded it, but I actually can still manage to wash myself, brush my hair and so on, if I didn’t have Adam here, I might not. Adam doesn’t do anything other than tell me to do these things, as I totally forget, regardless of any gadget, reminder or alarm, I need that human there to remind me over and over and push me into to doing things, but once past that point, I manage. If I lived alone, well I would need to pay someone to come here and make sure I am doing what has to be done for my well-being, including in some phases eating. I can walk carrying a glass, or a plate, I don’t need a trolley, but if I had one, I might just use it some days and I think those occasions might just increase, slowly eating away a one more skill, faster than I have to lose it. If we don’t use our bodies to their full, we will lose those abilities, it is better to struggle than to not be able to do it at all.

I am sure the time will come when I will need more and more items that right now would make me feel bad about myself, I work on being enabled not disabled. I don’t have anything sitting here waiting for the day that will happen, well what is the point, these days we can buy anything online we need and have it here within 48 hrs. When the day comes I can’t manage that glass, well then I not anyone else, will find the answer to exactly what my problem is. One tiny adaptation might keep that trolley or two handled mug away for another few months, but they still aren’t here giving me an excuse to just give in. I know it might be hard for those who love us to watch us struggle, but I believe that letting us struggle is far more loving than running out and buying something that will take not just the struggle, but our ability with them and in some cases, our dignity as well.

Read my blog from 2 years ago today – 6/04/13 – So where next > http://bit.ly/12tKwUU

Thank you for all your comments following yesterday’s post, both here and on twitter. I spent the rest of yesterday as a kind of blank zombie, even managing to walk like one most of the time as well. My afternoon nap really hasn’t been making much of an impact recently, although I will sleep deeply for two hours, I wake with no real feeling of change, which I guess is what…….

Surviving love

Life can be a real strain at times when you are living with a mind that seems to have a perverse joy in tripping you up all the time. I am in one of those phases where I am spending more and more time simply frustrated with myself because I just can’t follow through with a simple thread without getting wound up in it. It doesn’t matter if it is just in conversation or finding myself unable to complete a task, I keep finding myself unable to finish what I have started. Adam has always been the type of person who doesn’t like things being pointed out to him, which with the age gap and difference in life experiences often is very difficult for me not to do, when you are comfortable with the person you are talking to it is especially hard to be guarded all the time and not simply let your mind run your mouth. There have always been and I suspect always will be times when tact has gone out the window and I hear what I am saying at the same second he does. Having been a manager and with a reasonable understanding of different management styles and personalities, I often find myself trying to help him with situations at work where he has become wound up by the behaviour of his manager or someone he is working with and I do my best to explain what I believe their thinking and actions are really about, whilst trying to calm him down and not make any of my guidance sound patronising. Over the last few months, his stress levels with work have been through the roof, something that if you read back over the last month you will see clearly the knock-on effects. In the last couple of weeks, everything has been rapidly improving because we have spent long periods talking and going over both our lives together and his work situation. It is because he is now so much calmer and dealing with thing so much better that I actually feel able at last to write about this as I know if I had before that he would have read it then bottled it all up again out of fear of putting stress onto me.

When your mind isn’t quite what it was and you know that without any malice or even any reason behind it you can become wound up, not quite shouting but forceful in your speech without hearing, feeling or even comprehending that it is happening until much later, being a confidante, is hard, incredibly hard. It meant that for the first couple of week when we seemed to do nothing but talk, I had to put a lot of my energy into monitoring myself, whilst listening and responding with thought to what had actually been said, rather than just letting my answers flow. We needed to listen to each other, something I think we both had not really been doing for a while. When life centres around what my health is doing at that moment, both of us as people have at times, vanished and us as a couple, well we didn’t always exist. Like millions of couples out there we were coasting and for me that meant life was easy, but for Adam it was stressing him even more, as he rightfully felt that everything was on his shoulders. It wasn’t the way it was planned or even thought about, but it was what happened because I was so caught up inside my illness and he was doing what he thought he should. It is hard for me to write for Adam and I don’t intend to, this is really for all those husbands and wives who are ill and find themselves feeling an odd combination of guilt, reliance and love for the person who they adore, but can’t show it in the ways they used to.

There were a couple of occasions recently when simply because I had reached the point of exhaustion, that I knew my tone was scalding and judgmental, neither were the desired effect but they happened and I later had to apologise only to have Adam say that he knows it’s not me, as if it were, well he would have been gone long ago. It doesn’t matter how much they understand what we do and say thing that aren’t really in our control or that they know without a doubt that we aren’t that snappy, rude or demanding person who just sits there doing nothing, I realised in the last few weeks, that I had stopped saying sorry. Somewhere along the line, probably because Adam kept telling me I didn’t need to apologise, I stopped. It wasn’t until we both stepped back and took a long hard look at us, each other and ourselves that I noticed it, I had allowed my disabilities to take over, it rather than me, was living here with the person who did everything for it. Other than when he brought me something, I couldn’t remember the last time I thanked him for doing the housework for me, or the washing or any of the other things he now does that used to be my jobs. I know that just like the “sorries”, he told me to stop thanking him and just like the “sorries”, I did. I had also stopped even trying to not snap, or to be abrasive, what my brain did, I did and I carried on without doing anything about it. Between the three of us, me, my illness and him, we had pushed each other away and let my illness win and it happened without either of us even seeing it.

It is incredibly difficult to live all the time trying to control the uncontrollable, but in the last few weeks, I have been doing my best to do just that. I haven’t achieved my goal of being human with an illness, rather than just the illness all the time, but I have realized that I have to keep doing that for as long as I can, not being easy isn’t an excuse, it’s a cop out. Yes, I have to still stick to routines and I have to keep my world as stress free as I can, but that can be done and still remembering that my carer is also my husband and he has every human emotion and feeling that he always had, even if I no longer do. Temporal lobe damage is a fact, it means I will never be the person I was or able to do the things I once did, but I still have enough control to be able to show I care more than it might appear that I do. It is so easy once you are this ill, to just slip into routines that you don’t intend and to not notice the importance of the small things that lets other know just how grateful and appreciative of everything that they do for us. I have already lost control of many of my emotions, I react in ways that I wouldn’t have done years ago and I will never have that control back, but I do have the ability to say sorry even if I am not allowed to use the word itself and we all do.

When your mind feels as though it is no longer yours, making mistakes in simple social responses and reactions will happen and we can’t change that. When your body is always in pain and as useless as a burst balloon, it will let you down and embarrass you, it will mean that you can’t do much of anything of any use to anyone and we can’t change that either. But we can remember for as long as we can that the people around us, especially those who care about us are humans with human feelings and we have to remember to treat them as such, for as much of and for as long as we can. To those who are our carers, please don’t bottle things up, we are fragile but we don’t break with the slightest knock, talk to us if we annoy you, hurt you or put more on you than you can really handle alone. Love can be shown in a million ways, but when it is hidden behind illness, from either side of that barrier, it means we have to try that bit harder to still be people and to make sure our love is felt, as it is the one thing that really can and does make a difference to our lives.


Please read my blog from 2 years ago today – 27/02/13 – Which are worst 

The appointment for endoscope has arrived, it is on the 14th of next month. At least with this one there is now need to drink huge amounts of nasty cleaner, I just have to not eat for 4hrs, which I know I can do with ease. Unfortunately it is an afternoon appointment again……….

Setting up the future

I have just been forced out of routine thanks to the internet. There is a site I use in the morning that is one of the many sites that offer different ways of seeing and managing twitter, but it isn’t working at the moment, so here I am 40 minutes ahead of my norm and now guaranteed to be totally lost and confused for the rest of the day. It’s maddening when things that are totally out of your control just take your life and throw it up in the air, leaving you lost and confused, but I am sure that even those without any illness feel something similar, just not with the screaming in the back of their minds saying that the world has just ended and it will never be the same again. It also means that every few seconds I have to go to that tab and just try once more to refresh the page in the hope that this time might be the time that it normality returns. Rather than just leaving it alone until I have completed this, no that would be far too easy for a brain like mine, it has to ensure that I remain in a constant start of panic and unable to just move on and accept it as it is.

I had a tweet yesterday and a comment to on one of my posts, that both had something in common, both were from people who live alone and have little to no support when it comes to dealing with not just their illness, but life. I have at different points in my life been totally alone, yes there were people on the end of a phone if I needed to talk to someone, but there were two problems with that, firstly I couldn’t afford the cost of the call and I didn’t want to even admit that I wasn’t coping with life the way it was. I was lucky in one respect, I was still able to get out and about so I at least could see that life was going on, even though I wasn’t part of it. I don’t remember feeling lonely, but I do remember feeling totally alone, they are two very different things, especially when it comes to trying to deal with poor health. At the time I am thinking of, I was still in the reasonably early stages with my MS, it was still relapse remitting and although I do remember a flare at that time, it wasn’t debilitating to the point that I couldn’t manage to care for myself, but I do remember what it is like feeling like the world has forgotten you. It’s probably one of those things that goes back to childhood, but the one thing we all look for when feeling ill is to have someone there just to take care of us, fetch us a hot drink and tell us it will be OK, that doesn’t change with age.

When you find yourself dealing with a serious chronic condition that changes life forever, it doesn’t matter how many people you have around you, you can still feel totally alone. Most of us don’t actually know anyone who are living with the same condition as us, or are having to deal with the same issues when we are first diagnosed, the world can suddenly become a really strange place where we feel we are the only person alive who has to deal with anything like this. The only time we ever come across other is when we are waiting to see our consultants, but there is a strange thing about hospital waiting rooms, they are like libraries, everyone sits there in silence. At that early stage is we seek out other, we join chat rooms, attend meetings of the local support groups and for some that works, for others it is just not right for them, that was the group I fell into. The odd thing is, the worse our health gets, the less and less support there is out there for anyone, we once more find ourselves alone, with no one to turn to, who shares our predicament and we enter the zone of invisibility. It is a truly tough one to get around, as I know myself there is for some reason in all of us a need to be part of a group who share our lifestyles, but when our health is restricting our ability to be in contact, it actually means that others need to contact us, but no one knows we are there. All those groups and chat rooms are still out there, but when you are too exhausted, or the pain is too much to even type, you truly become alone in a way that I never thought was possible. So far I am lucky I have only touched the surface, but there have been both tweets and the comments over the last couple of years that have showen me just how easily and quickly it happens.

The conditions we have don’t really matter, the truth is one I latched onto before I started my blog or twitter, it is our symptoms and the issues they cause in our life that really matters and what we all need to know is that others have them too. It would be nice if someone had the cure for them, but I often think that if not the cure but a good placebo, is the knowledge that we are not alone, that someone somewhere understands and hasn’t fallen over dead within hours of it appearing or due to it. I don’t know if it is just the UK that has this strange thing going on where the majority of people who have chronic conditions don’t tell anyone about it. I know that in my working career that I never once heard anyone saying they had anything worse than asthma or arthritis, despite the fact that there must have been people who had a huge range of condition. I have said it several times and I will say again in the future I am sure, but if we just talked freely about our health, it would break down so many myths and falsehoods but just as importantly, those who will follow us, would already be aware of others and that feeling of being the only one on the planet would be broken down, at least in the early phases if not the later ones.

After my post yesterday I decided to see if I could find out how many people in the UK have certain conditions, I started with MS and the figure give was around 100,000, fibro 800,000, arthritis 8 million and COPD 3 million. I looked at only four conditions and the numbers alone started to prove my point, as those conditions alone represent over 5% of the UK population, worldwide 15% are disabled. The more conditions you check, the more it becomes clear that we are part of the kind of numbers that shouldn’t be ignore by anyone and whether it is in line with yesterday’s topic or today’s, if we all just made our voices heard, life could be very different and so much better, for everyone who is ill now or will be joining us in the future. Some issues are harder than others to resolve, in the UK right now there is a charity that is set up to help to break down the feeling of loneliness that the elderly go through once they are either housebound or simply no longer have the daily contact with others. It is a free phone number that they can call day or night just to have a chat, not because they are suicidal or in need of medical care, just to have a chat. It doesn’t matter if they see their families every day or every week if they feel lonely there is someone on the other end of the line happy to talk. One of the services it offers is a calling system, where their number is on a list to be called once or twice a week, one of the volunteers will call them just to see how things are and to talk about everything and anything. I can see how a similar system could be useful for all those people out there who feel alone with their failing health, setting up phone buddies, where people could be matched up to support each other through the difficult spells, were doctors aren’t what we need, just someone who understands because they too are dealing with the same thing.


Please read my blog from 2 years ago today – 25/10/12 – Being Totally Alone 

This is a day that is going to be dominated by my legs, they have been screaming at me since I first woke. It is almost impossible without lying down to actually remove all weight from them, it doesn’t matter how I sit the pressure builds in my thighs and joins itself to my shins and calf’s. I have joked over the years with Adam about wanting new or no legs in preference to the ones I have, this is…..