Just one more nibble

Posted on July 31, 2015 by livinginalimitedword

I decided yesterday to try an experiment, it’s actually something I have been thinking about for a while, but just hadn’t quite had the correct things in the house to try it. At the end of June, I was experimenting with different ways that I could find that were palatable to get my dose of Psyllium into me. With my intestine and bowel nerves more or less useless, the consultant straight away took me off all the meds my Dr had prescribed said Psyllium was the only thing that would work for me. He was right, but he didn’t say just how horrid this stuff is, or how hard it is to disguise it. I found a couple of recipes that worked, but weren’t great and required me to sacrifice one of my meals, just to have the space to eat them. Even the pancakes, which were undoubtedly the best, were incredibly filling and required a lot of other things to disguise the taste, which is somewhat like an odd kind of grass. So what I tried might sound totally back to front, but it really works. I stripped back the pancake mix, removing all the flour and adding two extra eggs, as I had noticed egg covers the taste slightly. Just eggs, milk, Psyllium, a spoonful of honey and yeast. Once risen I was delighted to find that what I had was an incredibly light and frothy mixture, that spooned with ease. Normally it would be heavy, risen, but still heavy and as time ticked on, it set. Not only did it drop off the spoon with ease, it needed little spreading out in the pan as it did most of it itself and cooked with ease.

The batter looks horrid, even in the frying pan at first it looks more like a mollusc than a pancake, especially as the air bubbles bursting making it look like they were breathing. I knew that the yeast would have no effect on the finished article, it’s there just so I can spoon them into the pan, and it’s elastic quality lets you spread them out without too much trouble. What I was left with we an incredibly thin, light cross between a pancake and an omelette. Just two has the total measurement of Psyllium needed and they taste good with just a few drops of lemon or I would guess anything else. I did actually eat half of one with nothing on it. At last I have a way that I can with ease eat this stuff that had been a trial since my doctors told me I had to have it. They are so light that I believe anyone would be able to add them into their day as a snack and not a meal replacement that all my other recipes turned out to be. I don’t know the exact reason, but I can only think that the flour and Psyllium formed some kind of reaction that just made everything heavy. The final test will be answered tomorrow, how do they react to being frozen, exactly where they are right now, solid and awaiting defrosting.

Everything does seem to get harder and harder the more of your body decided to shut down. I know that is just logical, but it is so hard to accept that even the simplest things like taking a couple of tablets can turn into a drawn-out and dramatic event as you once again choke on them. I quite honestly can’t think of a single normal everyday action from going to the loo to getting to sleep that is not somehow affected. I have just sat here for a few minutes thinking and I honestly can’t come up with a single thing in my life that is straight forward any longer, or not a million miles from what I would have considered “normal”. The longer you live like this, of course, it becomes your new normal and you do honestly forget how simple life once was. Looking back I know with total honesty, that if someone had painted out my future to me in detail, I would have asked to have been shot there and then. Yet here I am, living what I would have thought a total nightmare and perfectly contented and happy in this life.

I guess that any of us can look at a list of symptoms that any condition might contain and think that we could live with them. What we don’t see is everything else that comes with those symptoms and the impact on things that we never expected would be changed at all. Somehow without us even knowing at first that it is happening it nibbles its way into our lives. I remember about a year post diagnosis being sent to the hospital as I had mentioned to my GP that the problems I had with my bladder were getting worse. For years, I had accepted that my bladder often took ages to empty, leaked and gave me the little notice that it even had anything in it. I had just accepted it as part of life and got on with it. When I arrived the sister in charged asked me to go behind the screen and sit on the commode which had some system that measured not just quantity but flow and pressure. I was to let my bladder empty by itself, not to apply any muscle pressure, just let it do what it did naturally. She told me it was the worst results she had ever seen, I didn’t dare tell her that it was one of my good days. The result was that I was taught to use catheter three times a day to ensure that my bladder was empty as there were dangers in leaving it the way it was. I religiously did as I was told for the first three or four months. But the impact of doing so was to me a worse issue than not doing so at all.

To me the embarrassment of being in the loo for 10 -20 minutes, as that is how long it took to firstly prepare the catheter, insert, use and clean up afterwards. That was as long as I didn’t have a spasm, especially not one in my bladder, plus finding a way to dispose of the catheters discreetly was too much. It didn’t matter if it was at work, when I was out or even at home if Adam or anyone else was here, I felt embarrassed. Add in the fact that back then the catheters were too big to conceal in my normal handbag and the whole thing just grew in my mind into this monster. I stopped using them. I still don’t use them unless things are really bad, then I do, I am not stupid enough to not do so. For me, the solution was worse than the symptom. Bladder issues, they sound so innocuous, the least important and the one with the least impact of my list of symptoms. Something that anyone can deal with and live with. But think again. Always going out with a bag filled with catheters and all that went with them, carrying spare clothes, underwear and freshening sprays in case a leak went where I couldn’t so easily clean while out, like my wheelchair seat cover. Constantly worrying about smells that weren’t there, accidents in public that you can’t cover up. Having to wear what were then bulky pads just in case, plus carrying spares if needed and then not being able to wear your normal clothing. Bladder issues on the surface seem minor, they’re not. Now start imagining the more major ones, that list of symptoms is no picnic when you look into what it really means to the person living with them.

These days I struggle to get things into me and out of me, that is where being housebound is a plus. At least here in the privacy of my own home if I choke on my own saliva, I’m not completely embarrassed. If my bladder lets me down, well I can fix it, there is no one here to see and no one who is going to make me feel stupid. But that doesn’t make living with them any easier, it’s just there knock-on effects that are now diminished. I might not have imagined any of this could happen to me, or anyone else if I am honest or that I or anyone could still be happy despite it. Trust me, we can.

Please read my blog from 2 years ago – 31/07/2013 – A question or 100’s of them?

I can’t find a single muscle or limb that will give me peace although I am doing everything I can to find a position that suites them precisely, a situation that has now lasted for 4 days. Like almost everything, when I wake they are…..

Living it and loving it

Posted on July 30, 2015 by livinginalimitedword

I can’t be sure if I just went to sleep, or if I actually passed out last night. It’s a problem I have frequently when the vice around my chest tightens to the point that anything above a shallow breath is impossible. I was lying there in bed last night desperate for sleep, but as so often happens, the pain was in control. I know that it is impossible for it to be true, but sometimes it feels as though my diaphragm hasn’t let go from trying to cut me in two at all in the past thirty-six months. The truth is that there isn’t a day that I have been free of at least discomfort, pain, well that isn’t every day, but it’s not far off it. After the dramatic events of June, I have been trying my hardest to ignore it. I have managed not too badly to do so in the past, but I can only say, this time it isn’t working. Either it is worse, or my ability to pretend that it’s not there is getting weaker. Last night, I remember clearly lying there with a growing headache and fuzziness then suddenly nothing. When you are really tired, going to sleep suddenly isn’t that unusual, I do it all the time. What I don’t like is the sensations that preceded it. The problem with having a bad memory is that I can’t be sure if they are getting worse or not. It feels as though they happen more often, but I can’t be sure. It a real issue especially when I am in bed, as I can totally forget by the morning if they happened or not. The one good thing is that my appointment to see the consultant has arrived, it’s not until the start of September, but at least I have the letter now.

I watched a program yesterday that made me realise just how an unusual a situation I am really in. It was about a 39-year-old women who was expected to die within months from breast cancer. She had been shocked to find that nearly everyone asked her if she had a bucket list and had placed something on Facebook asking others who were dying if they actually had one as she hadn’t even thought about it. The program was about the people she met through that one request online. The whole show had moments that made me think and brought up realisations about my life. The first was simple, no one close to me other than my son Jeffery has ever died young. The only deaths in my family or of partners families, have always been those you would expect, grandparents. Even all of those grandparents, not one of them went slowly, they weren’t a decline if you like that you could watch. They all went from a state of as fit and healthy as any other elderly person and all died in very short periods of time, just a matter of days. I am the only person I have ever known, who has been told they are going to die young and has had time to think and live through their decline. I don’t have any example or rolemodle if you like, as how to do this slow dying thing. In most ways, though, I think that is a good thing. As it is one less thing to beat myself up about, I have no list of what is right or wrong.

The second was the fact I am housebound. All on the show were still very much out and about, some were still working, which is something I thought I would still be doing. Housebound is when I think about it a more unusual situation these days than it was a hundred years ago. The arrival of motorised wheelchairs has meant many who were once trapped at home, can now be part of the world. To be housebound these days, you have to be like me, with not enough energy for all that getting dressed and ready to go. Far less the energy to actually enjoy being out, it’s all too much. Plus living in a Victorian tenement flat, does add in the issue of Victorian builders, hundreds of stone steps with no other way down. My situation is one thing I did accept a long time ago and it wiped out any notion of this modern creation the bucket list. For me, that wasn’t a problem, as the one thing I did actually have in common with many on the show, is that I don’t actually have anything I haven’t done, that I have a burning desire to do. I know that some people won’t be able to believe that, but even back when I was first diagnosis and I was still fit and able, I couldn’t think of a single thing that I wanted to do before my health failed. All I wanted was to work and make my home the best I could. Something I intended to do anyway. I actually thought that I was the only person alive who didn’t have a single thing to put on a bucket list. It felt good finding that I am not some sort of freak, or incredibly old-fashioned, as even some in their 20’s felt the same way as I did and that was the third thing.

I have always thought in life that there is no wrong way or right way of doing anything, there is just the way it is. No matter how much I believe that it is inescapable that I compare myself to others, it’s human. All of us will silently chastise ourselves when we fail, especially if we have seen other achieve what we didn’t. That figure of the person who got it so right stands over us always. All of us will equally praise ourselves when we achieve what others failed to do, they too will always be in our minds looking up at us. When you have neither when you are the first to do what you have to, it’s natural to feel a little lost. Here I am the first person I have ever known who is housebound and the first who is dying in years not days. I am totally content with all of it, but I still don’t want to miss out on anything that life has to offer me, just because I didn’t know. I found it refreshing just how well all of those they showed who were just like me accepting of their lot and not screaming and shouting about the injustice of it all. Only one occasionally shed the odd tear, but that was the woman the show was about. I think it is impossible when someone is talking that honestly for the odd tear not to escape. The rest, though, they were upbeat, positive if you like, I don’t, I really dislike that word as it’s pointless if it isn’t genuine. They were genuine. I saw people like me, who could laugh, smile and see the beauty of life and that felt good. My personal experience and the reason I nearly didn’t actually watch the show was that all too often they are depressing or annoying.

There are so many TV shows out there filled with people who can’t come to terms with what is happening to them. Who see what is left of their life as something horrid, violent and being inflicted upon them in cruellest way possible. People who I believe have missed the whole point and have become victims. Try as I might, that is something that I can’t get my head around. I just don’t feel or ever have felt that my illness is in any way some sort of punishment for life. I’m not it’s prisoner. I’m not scared about what is happening to me or will happen to me. As long as the pain is under control, which it isn’t totally at the moment, but if it isn’t any worse than this, well I will remain happy. I still have a life to live and I for one intend to live it and love it.

Please read my blog from 2 years ago today – 30/07/13 – Going out, no thank you

Those who read yesterdays post probably noticed the spark that appeared just at the end and made an intelligent guess as to what I would be writing about today. I haven’t for a long time now actually thought that…..

So what if I’m nuts

Posted on July 29, 2015 by livinginalimitedword

If I didn’t know better, I would now be dialling 999 and praying that they arrived promptly. The right side of my face has just gone numb and feels as though it is hanging there, just as they show when describing a stroke. I know it’s not because it happens all the time. I used to run to the mirror and check, so convincing is the sensation that even if I was in bed, I would get up. Nerves can be very convincing when they decided to put on a show and trust me when I say, feeling as though half your face dead and falling off, is pretty horrific. It’s just one of an array of sensations that I have learned to live with, this one though is somehow the worst one. I suppose there is nothing in this world that is more our identity than our faces are, so this attack, as that is what it is, this attack, is a direct attack on me.

It can be very hard thing to accept that everything that is happening to you is actually being caused by you. Autoimmune conditions have to be the most difficult things to fully accept. Illness until you are diagnosed with an autoimmune condition is caused by some evil little bug or virus. Something that you can blame, give a face to and even a name. It’s not you, it’s this thing that is attacking you. Then suddenly this new word appears in your life, “Autoimmune”. Your body is attacking itself and it can’t be stopped. It doesn’t make any sense, how can your own body be putting itself through all this pain and be slowly destroying itself. You can’t give it a face, as it’s your face. You can’t give it a name, as it’s your name. Even logic says that you can’t hate it, as you are then hating yourself. “You have an autoimmune condition called Fibromyalgia”. That was the first time I heard either of those things applied to me. It’s one of those devastating second in life when the world stops and you sit there with everything echoing in your head. No matter how hard you try to listen to the doctor, all you really remember are those few words, the rest seems somewhat unimportant. The doctor could have diagnosed my MS at the same time, but she didn’t think that a CAT or MRI was needed. Fortunately, an ENT specialist that I saw a few months later thought it was important. It was another year later I found myself being told I had PRMS. It actually didn’t hit me as hard when the words were said, by that point I was ready for it, not the Progressive Relapsing bit, I was expecting the normal RR. It sounds stupid now, but it wasn’t until a few years later that I truly began to understand what my future held for me. It was also about that time that I fully accepted that my body could really be causing all of it.

I related all of that for a reason. Acceptance of your health isn’t a smooth straight forward thing. Being diagnosed is the easy bit, accepting and understanding can take years. I think we go into self-preservation mode. Somehow if we accept it, all of the horrid things that we have read will actually be real. It is something that isn’t just some horrid mistake and one that is going to be spotted during one of their annual catch up. Acceptance is slow, incredibly painful and totally essential. It happens in phases, the first phase is actually a false one, it’s not acceptance at all. I spent a few days at home feeling sorry for myself, just sitting there crying and crying until I couldn’t any more. I thought that I understood what was happening, that I was accepting, but I wasn’t, I was mourning. I was mourning a list of things, including the end of my fight to find out what was wrong. That phase of my life was over and gone, the fact that had gone from just one devastatingly crippling condition that was going to steal my body and my mind, to two and this one was going to take over my life. I thought the last tear was acceptance, but it wasn’t, it was coming to terms with it, realising I had to get on with life and putting the tears behind me. Over the next months, there were more tears, more grieving for what I had lost although none of us really know that, as we can’t know what life would have been, but we mourn it.

Acceptance is an incredibly slow process. It comes when your not looking for it. It grows through all the things that you discover haven’t been stolen from you overnight. It’s in all the new things you still learn and achieve despite this autoimmune monster. It isn’t a flash of lightning, it’s a gentle growing feeling and as it grows as you learn that life goes on, you adjust to your new title. I know the outside world thought I had accepted it long before I had, but that was because I was being me. Bravado was always part of my life. I always went into things full heartedly on the surface, but shaking and terrified inside. My appearance in this situation was no different. I was upfront, happy to tell anyone anything they wanted to know. I hid nothing from anyone and smiled as I spoke, even on days when I was dying inside. I can’t tell you the exact day that the two actually were the same thing. I don’t remember when I truthfully felt what I was saying, that the ‘I can do this with my eyes shut’, met head to head, with ‘I am happy, this is my life and I’m living it’. But they did.

I know many believe wrongly, that acceptance has to happen quickly and it’s the only way to get on with your life. There is no right or wrong time that acceptance will appear, but it does appear and it can’t be forced. Once you do accept, once you truly say this is what life has laid out for me and I am content to live with it, life changes. You can’t fight chronic illness. You can’t defeat it by being positive. Neither work as both are just showcases for the outside world, not healing on the inside. No one is given a diagnosis of something that is going to destroy them one day and next be smiling about it unless they have a screw loose. For me I know it was sometime around the point that I was given chemo to knock out my immune system so my body could heal, that I truly found my acceptance. That was about 4 years after my diagnosis. I found an odd positivity about what was happening to me, I might be dying slowly, but I wasn’t dying yet, I had too much still to do. If I had to do it full of radioactive chemicals and from a wheelchair, so what. It was like those chemicals were my wake up call. They don’t give you stuff like that unless you really need it and if they were going to give me a chance at living longer, I wasn’t going to let them down. My acceptance was complete.

I believe totally that we all find that point, somewhere along the path of illness is that wake-up marker and it doesn’t just happen once. They are there all the way through, there to remind us that life is still ours and we are still have living to do. It doesn’t matter how black and bleak your prognosis, once you have that acceptance, well nothing can hold you down for long. I am doing this to myself, not willingly, but because I was unlucky to have a screwed up autoimmune system. Not fair, but a fact. Even now when I know I am slipping once more, I can accept it. Right now, it’s not with an fully open heart, but with one open enough, because I have the knowledge that I will find it anew as I always have in the last few years. Once found, you never truly loose it, it just hides every now and then. Until it happens, you can’t see it, you can’t believe that it will ever happen to you. I felt the same, I thought people who were positive about their lives when they so clearly were a mess, well they were nuts. I am now and have been for several years, happy to be officially nuts.

Please read my blog from 2 years ago – 29/07/2013 – The start of a thought…..

Yesterday brought me on blessing that I had hoped would be worth the money I spent on it but like many things I had to wait and see when they were eventually arrived, confused? My new glasses arrived, the ones especially for sitting here typing! I had been a little….

A wake-up call

Posted on July 28, 2015 by livinginalimitedword

I found myself hanging off the back of the bedroom door. Something inside me was screaming, it was one of those moments where everything just suddenly felt too much and I needed to silently scream. I was just stood there with both hands grasped tightly to my dressing gown, with it taking as much of my weight as I dared to set free. All I wanted was to stay where I was my face buried in the soft velvet of my dressing gown, letting that tension escape. I suddenly realised that where I was, was just a little stupid. What if Adam wanted something from the bedroom, half hanging off the door wasn’t exactly a safe place to be, or one that I would be able to explain with ease, or without feeling rather stupid.

The day had started out without issue. I had written my blog, sent out all my tweets and spoken to Jake. Nothing unusual and nothing there to wind me up or steal my energy, a day like any other. I decided to spend my free time trying to find some new sites. Ones that actually had something to say to me, rather than the millions of sites which talk solely to those with Relapse Remitting MS. Read most sites and their truth is that we are all the same, going through a variation of the same thing. That is the first and biggest lie that they all tell. Have any of the three forms that start with the word Progressive, and you are on a totally different journey. To my total surprise, I found one. One with a twist which after my writing how I hate all that Adam has to go through because of my health, was actually fitting as it was written by a carer. It was so well written that I was blown away by it, as it painted perfectly the worst side of what a caregiver reality really is. I had been only able to imagine it before and what I read surprised me as my imagination hadn’t done that bad a job. Donna Steigleder husband is at a later stage of the disease than I am so it was also a picture of my future as well as Adams. Her post was so well written that I forgave her for missing out PRMS, there are so few off us that we are frequently forgotten, especially by the researchers, which explains why there are no treatments for us either.

In so many ways, I both needed and didn’t need to read her words. It hard for me to find the words as to how it feels to read your own future, well parts of it. Clearly there will be differences, but there will be a huge amount that we will share. I’m not stupid, I knew that much of what I read was ahead of us, including Adam feeling as desperate as Donna clearly does at times. Out of our two lives, it is still his that I fear for the most. I am sure that Donna didn’t hand that post to him to read when she felt like that. Or sat down and talked it all through with him, her clearly caring nature tells me that. I don’t want Adam to ever feel that he has to hide all that anger, remorse, pain, guilt, fear and most of all that feeling that somehow he might be failing both of us. Right now I am at the tail end of the scale of MS, somewhere in the later stages of stage 8. Stage 9 is still a way off, I don’t expect to be mainly bedbound anytime soon, but a bad flare could change that tomorrow. Having said that is spending 13 hours a day, partially bed bound? It’s a definition I find hard to work out, as to me you are either bed bound or not, how can you be mainly bedbound? To me, the stages are somewhat unbalanced, stage 8 is met once your life is substantially changed and you are using a wheelchair either full or part time. Seven stages to that point and only two to take you to death, to me, it doesn’t quite add up. I am at the point where yes Adam has to pick up and do the things I can no longer, but his actual caring for my needs is still very limited. As long as my health stays at this level, there is a normality to life that still remains. But I don’t think that either of us are quite prepared for just how much our lives will change as time goes on. It doesn’t matter how well you research your condition, how much you both read and talk, no one knows exactly how you will manage until the point that it actually happens.

I think reading Donna’s post yesterday was a little of a wake-up call. I have spent a lot of my time in the last few years kidding myself that life is going to stay just as it is for many years to come. I admitted a while ago that I had realised that my health had changed more than I thought, or maybe noticed is a better word. I suspect that we all sweep along through life believing nothing has changed. Life has its stage post wake-up points, otherwise know as birthdays. There are no wake-up points when it comes to our health. Yes when I started using my wheelchair, but that was 10 years ago, as I said, how can I still be stuck in stage 8? I know that the mitoxantrone treatment turned back the clock dramatically, but I was never able to step out of my chair. The milestones are spaced so far apart that it is easy to kid yourself that you are doing well. I have been kidding myself that I was fine, that I wasn’t going to fail anytime soon, I think I need to reassess that thought. I’m not saying that life will change tomorrow, but I have to start preparing myself for the fact that it will, something I haven’t been doing. Adam may have been, but if he has he has been doing it alone.

I read yesterday several posts by different people, but the one I have mentioned was the only one that hit me between the eyes and left me reeling. Sometimes things appear for a reason a that time, a reason that we don’t see but feel. Emotionally, it was a kick in the teeth, as I had to say by the end of it, that it was a flag post waving in front of me. A warning that time is passing, my body is failing and the future is getting closer. None of that can I change, but I have to for both of us start to prepare myself for it, just as I prepared for the stages that have brought us this far. If you are mentally prepared for what can’t be changed, when it happens, well you keep going, rather than being stopped dead in the water. I knew and had worked on the possibility of losing the use of one of my hands. When it actually happened, I got dressed and went to work, rather than sitting about feeling like the world had ended. I knew the day might come that I might be housebound, I had worked towards that possibility and changed the way I worked, so I could work from home. Every step worked because I was prepared. Now I have reached the point where I have to face the next stage. I have to work on getting my mind around not being able to do even what I do today. I have to prepare for both stage 9 and stage 10. I have to start seeing it as real, not some distant possibility.

Last night when I headed to bed and stopped at the door, was because inside I was hurting. I was fighting so hard with myself over the fact that reality has been knocking on my door loudly in the last few months and I was waking up to the fact that I can’t ignore it. Donna’s post was the final kick I needed. My body and my life had been dropping clues for months, but I was too stubborn to listen to any of them. Being pigheaded is a wonderful tool to have when you are living with a body that is destroying itself. It can really work for you. Sometimes though it works against you unless you are lucky enough to be woken up to that fact, well it is equally destructive. Thank you, Donna.

Please read my blog from 2 years ago – 28/07/2013 – What next? The web?

For the past 3 or four days I have been plagued once again by edema, I had been expecting to flare in throughout the really hot weather, but there was no sign of it, so what made is appear now, well

Finding our balance

Posted on July 27, 2015 by livinginalimitedword

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…