Charting progress

We all know what it is like when you get a silly idea into your head, and you just can’t shift it. I had one of those about a year ago. and it landed up with my purchasing an oxygen level monitor. I had it in my head, that my levels were dangerously low, and even worse, that every night, I was receiving increasing levels of brain damage. It always felt as though the change from vertical to horizontal, was making my breathing so much more difficult. At the time, I was waiting for an appointment at the chest clinic and the appointment, wasn’t come around quickly enough. As it turned out, firstly, the monitor didn’t actually arrive until a couple of days before the appointment, and secondly, the consultant told me that readings of 91% didn’t mean I was about to die, it could fall right into the 70’s and I would still live. I wouldn’t be energetic, but I’d live. Once I had had my mind put at rest, by the doctor, not the monitor, I put it to one side, grabbing it occasionally, but in the main, I forgot about it.

It actually feels like a long time since I last just sat here doing nothing, but with my oxygen monitor on. I used to do it occasionally, more because my eye was caught by it sitting beside my keyboard, than any other reason. In some ways, I probably should have used it more often and built a clear chart, that would make finding the abnormal easier, but I didn’t. So when over the last few days, when my abdomen has been creating pressure levels off my normal scale, I thought that I knew my oxygen levels would be low, but I didn’t have that much-needed chart, to be sure. I was getting reading from their highest at spikes of 93% right down to 86%, and one dip falling at 84%. All figures that I have seen before, just as I have seen all my differing heart rates, but I don’t remember a single one, with any certainty. It has made me realise, that although I have this tool, plus a few others, I have totally missed the opportunity, to build a picture of just what my lungs and heart are doing, or not doing.

When last summer I had a bout of pneumonia, I know that Adam was worried sick. I am quite sure that he was more worried about me, than I was, as he even took a week off work, as he wouldn’t or couldn’t leave me alone. The other day, Adam was looking for something in the coffee table draw, as he was scrabbling around in it’s overloaded contents, I spotted the instruction leaflets for my oxygen monitor. I thought he had thrown it away, after reading it. Clearly, he was still holding onto it, just in case, he has to put it on my hand and read the results, and clearly, it’s something that still worries him. I did think once before of keeping a chart just out of interest, but now I am wondering if the time has come, that not just for my curiosity, but for Adams future sanity, that such a chart, might just be a really simple and effective answer. I know from experience, especially from that dose of pneumonia, that I can tell him a million times, I’m fine, if his eyes can’t see that, he won’t settle. This might just be a way of giving him, some peace, and if adding on ten seconds to my morning meds routine, would do that alone, well it’s has to be worth it.

I think we, the chronically ill, often forget about what our partners see and what is going on in their heads. As I said, saying “I’m fine”, when “fine” is the one thing we never are, doesn’t mean anything to them. I have sought frequently for a way of convincing Adam, that I’m not going to keel over dead, in those five minutes it takes for him to go to the loo. It is one of my almost daily frustrations, especially at lunchtime, when he phones because the weather is too bad, for him to walk down the hill, to the house. Quite often our entire two-minute phone call is spent with me telling him, that I’m fine and trying to find a nice way of saying, I don’t need him to come home. There have also been numerous occasions when stopping him calling the doctor, has been just as hard. I have never really thought about it in depth, but that chart, might just in the future, be my answer. It also, might be the way of showing me, the pigheaded, “I’m never ill”, obstinate, single-minded, me, that, I actually do need to see a doctor, and now.

There is one fact that I can’t ignore and that is, that my health is getting worse, I’ve tried, trust me, I’ve tried. But it’s that very attitude, that has got me this far, but it is now the attitude, that makes Adams life harder. He knows all too well, that my left leg could be hanging off, with no more than a thread keeping it connected, and I would be asking him to fetch me a plaster. It works for me, but not for him. I have seen the worry on his face when I’m not doing too well, but it’s just my way to brush it off, as it’s my health and my problem. I guess that I had missed one important change, it’s no longer just my health, like everything else in my life, it’s now Adams as well. What I mean by that is. that I am now able to do less and less for myself, I have openly told Adam that I need help and why. He now monitors so much that I do and has taken over the rest of it, but I haven’t opened up a way for him to monitor just how well I am, other than to look at me. This would give him that opening, a way to be sure and to put his mind at rest, that nothing more serious is going on, that I’m keeping from him. After all, he doesn’t have x-ray vision.


Please read my blog from 2 years ago today – 25/02/2014 – I just don’t do

I really have to push myself today as I need a shower. I needed it yesterday as well but I just couldn’t find the strength inside me to get off my backside and sit in a small cubical. So OK it isn’t as simple as that, the big problem is the overall effort it takes and that horrid sensation of pin sharp water digging…..






The talking has begun

Adam read my blog yesterday, “The first tiny steps“. I knew there would be a reaction, which I admit was part of my reason for writing it. Like a lot of people, he doesn’t like talking about death, especially, not mine. I hoped that by writing my thoughts, that he would then have something that was a defined plan, rather than just the general subject. It didn’t quite work out that way. It still took a huge amount of pushing and prodding to get him to say anything at all, and what he did, was, at first, running around the edges. I fully understand how he feels, it is hard, extremely hard to break ourselves away from the pain that death brings with it. I also understand that there is a huge difference between sitting calmly writing about something and talking about it. I had taken the easy option, as a way of broaching a difficult subject, which I had tried and tried in the past to do, I honestly couldn’t think of another way I could get him to talk. In the past when I have tried to talk to him, he has run away or, become so agitated by it, that I have backed off, as I can’t stand causing him pain.

When you yourself know you are dying, even if it is going to be several years away, you can’t ignore it, and this time, I wasn’t going to let him. I knew from the past, that he doesn’t like the idea of my ashes being so far away, if, they were all placed with Jeffery. I get that and I didn’t like it either, but I made a promise the day I buried him, that I would be with him one day. So I made the compromise, part with Jeffery and part close to Adam, to my surprise, he didn’t like the idea of me being split in different places either. We talked but, he couldn’t, or wouldn’t say what he wanted, all along when we came to a block, he said the same thing, “It’s not about what I want that matters, it’s about what you want.” I personally think that is wrong. We have done everything major in our life together through compromise and agreement, I don’t see why this should be anything different. What happens to my body once I am dead, is actually very much about what he is happy to live with too. Grieving has to have the right steps, it has to be worked through with an opportunity to say goodbye and to know where the person you love, is physically. Just as Jeffery was buried, because I couldn’t accept there would be nothing following a cremation, Adam has to be comfortable with what happens to me. I won’t be, the person who is grieving, he will.

At first, he wasn’t comfortable that I didn’t want, if, you like, the traditional funeral style goodbye. The removal of the ceremonial part isn’t as strange as he thinks. To me, the ceremonial part, is, when my ashes are scattered, as that is truly our final goodbye, not sitting staring a coffin through tears. When Jeffery was buried, we didn’t have a service in a church first, we all gathered at the cemetery around his grave and we held the service there. It was simple, and just as moving and supplied all the closure anyone could ask for. There was something about being outside, that felt right as well, as though there were no restrictions, no confinement to our feelings, they were as free as his soul was. I also think that the traditional cremation, being in two parts, separated by days, is cruel. I see the cremation act, as nothing more than a preparation step. It is far less arduous, to have just one gathering, one point when everyone can come together, to perform the final, single act to my life, or anyone’s life who is being cremated, the scattering of their ashes. He also tried to argue, that it was what people would expect and all those who know me could come to the crematorium. It’s an argument that doesn’t stand up, firstly all who know me or want to be there to support Adam can come to the ashes being spread, but not many will be there from my side anyway. He tried to say there would be, but as I said, who is there? Teressa and her husband John, my friend Jake and Adams family, that’s it. I have no friends left, they all vanished when I became ill, for some reason, that bothers him, more than it does me.

He didn’t like either that I intend to keep the whole thing as budget friendly as I can, he said it was something that I shouldn’t worry about, that it was up to him to find the money for the best send-off possible, I can’t agree. Funerals, can go into the thousands and for what? It doesn’t change the love that’s felt, and that, is, the only thing that’s truly needed. We only spoke for about twenty minutes, then he closed it down. I know that he is the sort of person, who has to think about things. Adam’s general reaction to things he doesn’t want to talk about were displayed perfectly yesterday. Throughout it, he was agitated and uncomfortable, he couldn’t stay in one spot and wondering around the room, getting closer and closer to the door all the time. Responses that I didn’t only expect, but had totally predicted in my mind before we even started. I could have written the perfect traditional process, right down to the overly pious minister, who had never met me, nor knew the first thing about me, spurting out the same service he repeats day after day, after day,  but he would have been just the same. It wasn’t my choices that upset him, just that we were talking about me dying. It shouldn’t be like this, we should all be able to have and adult conversation about death, even our own, without feeling that all of it is wrong. None of us what to die, but you and I could be gone tomorrow, and who knows what you want if it happened right now. There is so much choice out there, we don’t have to spend thousands on coffins, hearse and overgrown ostentatious displays of flowers. They don’t do anything. The closest friends, a single flower from each and few words that mean something, now that says something, that says, love.

I am not going to push it, not today anyway, but I told him that this week I am going to email a few places, to find out about costs and so on. Unfortunately, I can think of no one else, other than a funeral director who can help me in my quest. My one experience with them has left me feeling just that tiny bit hostile towards them, which I am sure I will get over once the process has begun. I want to know and I need to start sorting all this out, as I am sure, that I will find a new peace, in knowing it is at least sorted. Eventually, I want to put together a document, that lays it all out, step by step what Adam has to do and how to go about it when I’m not here to help him. I want him to feel that I am holding his hand throughout it, guiding and comforting as he works his way through the phone calls that have to be made, the emails to be sent and so on. Once I have this stage sorted, then, I can start looking into all that proceeds it. I know that some might think that I am dashing off to find out about what might be years away, but it might not. My PRMS is a progressive condition, there is no knowing when I might have another flare or what damage it might do. I need to do what I can, while I still can, not leave it as a gaping painful unknown.


Please read my blog from 2 years ago today – 18/01/2014 – Compensating is now failing

Once again I woke this morning not sure how to twist for the alarm clock or how, not for the first time, to find the strength to hold down the elevator button due to it’s strange position, but it is the only…….




More than a partnership

I spent most of yesterday afternoon, making my Psyllium pancakes. Adam hadn’t been happy about me making them when he was out, he wanted me to wait until he was here today to help if I needed him. It took some convincing, but I managed to get him to accept that I was perfectly capable of just stopping and lying down when I needed to. He finds it hard to let me do anything by myself, he for some reason is always concerned that something terrible will happen and he won’t be here to help me. Actually it’s not for “some reason”, it’s because he cares and loves me and doesn’t want anything bad to happen to me. I do understand that, but it’s hard sometimes just accepting that and just to let him help me more than he does, simply for his peace of mind. Living this life is often a balancing act, between what I believe is possible and what Adam believes is impossible. I guess every couple who is in our situation has the same issues, the same desires and the same problems. I often think that being on my side of the scales is the easier one. I may be the one in pain, unable to do most things and easily tired, but I know all that and it is me that feels all of that. He can’t, he has to guess and assume then just watch and worry. If that wasn’t bad enough the worry only grows when he isn’t actually here to do the watching.

He was right, but I knew that before I even started to make the pancakes. It’s a long slow job and I am not up to doing it all in one go. Once I had made the batter, I went to bed for an hour while the yeast did it job and turned the solid lump that Psyllium forms, into a light fluffy substance that is easy to spoon and stretch into pancake forms in the frying pan. After an hours cooking, I was only half way through the quantity I had made and I was once again shattered. One of the beauties of this stuff is that it will keep for several hours, just cover and take a break, it will be fine. By actually just taking my time and doing it bit by bit, I got the job done without collapsing, falling or any of the other things I knew was running around in his head. This morning, I am paying the price. My pain levels are high and I am tired. Despite doing everything I needed in the kitchen while sitting on my perching stool, my legs and ankles are killing me. I am not the slightest bit surprised by any of it and I am sure he knew this would happen as well. I am sure that many who read this who aren’t ill will find my determination to put myself through something that would cause so many issues, as more than odd.

On the surface, I can see that. In fact, if Adam and I were in the opposite position, I would have argued it to the last minute that he shouldn’t do it. Adam knows that doesn’t work with me, argue with me and all I do is get angry and more determined that I will do what I want. He knows it as well as most chronically ill people do, our independence is incredibly important, as important as breathing. If there is something, anything that I can do for myself, I want to do it. The price I pay for that is just something that I accept. I accept it as I know that whatever the task is, I will have the satisfaction that I have done something by myself. My independence is precious. So all I did was make some pancakes, not exactly a big deal, but I did it all by myself. OK, it was in stages and I am paying the price, but I was for a few glorious hours, doing something other than sitting on my backside in front of a computer.

It can be difficult when your partner becomes your carer. Right now we are still stepping up more and more what Adam does for me. Every few months his support is needed more and my independence becomes less. Not because I am getting lazy, but because this illness is stealing more and more of it, and more and more of me. I know that he is happy to do whatever is needed, but it’s painful for both of us as we are both witnessing my decline. Adam knows perfectly well that when I ask him to take on something new, it is because I have no other option. Which just makes it harder for both of us. I can’t step into his mind, but I can empathise and at times he has slipped and I have seen it. No matter how much he says he doesn’t mind, I know that on some levels, he really does. No one wants a million jobs dropped on them that will eat up their once spare time. I admit that I held onto many for longer than I should, just for that reason. But the point eventually comes when you have no choice left. It has been and still is a long painful process for both of us. Our roles have changed so dramatically from the ones we had when we married. I was the carer, the homemaker and the breadwinner. Now I am none of them and he is all of them and so much more. Everything changes when your brain will no longer cope with even the little things when you have to ask someone to be your proxy brain. That is one thing I can’t imagine, how it feels for him to be doing things like reading my mail and sorting out my meds because my brain can’t deal with it. I can fully empathise with him over all the physical stuff, but being someone’s physical replacement is one thing, being someone’s mental replacement is totally different.

Without a doubt, both of us are walking the same tightrope wire. It doesn’t matter if it is the physical help or the mental assistance, both have a huge psychological impact on both of us. Neither of us want to hurt the other, or even upset the other, but we both have very clear and often opposite views of what I am able to do. That is the tightrope, I have asked for and given him permission to take over so much of my life, but I still need my independence. It is a hard balance for both of us and I am very aware of it from both our sides. Once you are on that tightrope there is no way off, no way of turning it back into a nice wide road. Well, except if my brain checks out totally, but other than that, our future will always be a balancing act. We are always going to be protecting each other and doing and saying what we think is right, regardless what the other thinks. I know that if I find it odd having someone else having so much control over what I do. I also know that he must find it even odder to be so much in control of another person. We didn’t choose to be in this situation any more than I chose to be ill, but here we are, tiptoeing around and trying to do what is right. I fully admit that at times I let him have his way, even when I don’t actually agree with him, but sometimes we have to accept the help we don’t want, to get the help that we do. It avoids disagreements and loud unmistakable exasperation and it lets me demand my independence when I really want it.

All marriages are partnerships, ours though has become somewhat unbalanced. It’s hard to sit and take and take again when all you have ever been was happy to give. What I can give now is so little, yet somehow I still feel we are a partnership, that we still share and we still care for each other and we still feel like equals. It’s an odd one, though, as it’s not like any other partnership that I have ever come across before. None of us marries expecting to be in either of our positions. It is a thing that is out there in the dim and distant future, something that old age might bring your way, but not expected. For a marriage to last through chronic illness seems to be about a fifty-fifty chance. We have been together over 16 years and it’s now 14 since my diagnosis, we have had our ups and downs like all couples, but there is one thing that I believe is true. Our relationship has been made stronger by my illness. I once feared that it would be the end of us, that he would run in fright of what it all meant, but that was a long time ago and didn’t last long. I guess the truth is that there are no handbooks on how to make your marriage last through chronic illness any more than there is one for surviving that chronic illness itself or being a carer to the person who has it. We all write our own ones, as being individuals means we can’t write it for anyone else, all we can do is try and give hints.

We haven’t reached and are still a long way from the end of that tightrope. What I know of our future tells me that it will only get harder. I will on my bad days need him more and more to do even the basic things for me. On my good days, I know I will insist that I can do everything myself, despite the fact we both know I can’t. But that is life with a pigheaded ill person.There will be days when we will be exasperated with each other and days when we still totally adore each other, probably a few which are both. If there is a secret to making this life work I guess more than anything it is just holding onto the love you have for each other and to push through those bad times, as the good ones always come around. We both know that I will have to hand over more and more of my life into his control, that he will have to take on the few things that I still do. We equally know that I won’t let go of them without a fight and if independence comes down to just brushing my own hair, I will brush every single one of them alone and be happy.

I have found great happiness in both my marriage and even the situation I find myself in now and that has a great deal to do with my fussy, fussing and frustrating, but always adorable husband.

Please read my blog from 2 years ago – 09/08/2013 – Time to face it

I spent some of yesterday making decisions, not major ones really but ones that have actually made me feel that bit better in myself. I set to on the list of bookmarks that have been haunting……

Who’s job is it?

I guess I should have known that this was going to be an odd week when Adam announced last week that he was taking a week off. He swore he told me before and I equally swear that he didn’t. Nothing new there then, as he is probably right. Another one of those annoying things about slowly losing your memory, you can’t demand any longer that you are right. I used to be the sort of person who could repeat word for words conversations had years ago. I doubt now I could actually repeat one that I had yesterday. It’s another one of those frustrating things that you have to get used to, not always being right. At times, it becomes another of those very personal things like it is some kind of retribution for being a know it all, you become a total know nothing for sure. Last night I was helping Adam with some of his college work, I thought I was on the firm ground as it was basic Excel and I do mean basic. There I was, the once queen of the subject; the person who could build complex worksheet not only filled with embedded functions, swish graphics and programmed to do all the daily work of updating by a simple single click; staring at a spreadsheet unsure how to sort out simple percentages. Of course, I got it right eventually, but I felt so stupid for getting it wrong on my first look. It doesn’t matter that you have the perfect excuse of no longer owning a brain, you still feel as though you are a first class, idiot.

I am as always when Adam is at home, at a total loss as to what day of the week it is, or how to work out time, when it isn’t all done around his working hours. I have been totally thrown at every turn and lost as to even how to get things right with our TV viewing. TV programs are usually either half an hour or an hour in length, so it should be simple. Yet, I have managed to make a mess of that simple calculation three times in the past three days. I have forgotten to take my meds and even struggled with the idea that it is lunchtime. It hasn’t been helped by the alarm clock being set for 8:30 each morning rather than 7:30. Add in the events of Monday and I really don’t stand a chance of being in control of anything. I may have softened my routine in the past month, removed all those rigid timings, but even in its softened form, it and I can’t cope. I have been very tempted to reset the alarm to its normal time, in the hope of removing one element, but I have to admit that that extra hour in bed is really nice when I get it. All of them are such trivial things, the kind of problems most people and even I several years ago would have loved to swap places with those I faced hourly. These days, they are major disruptions to my life and hard to get my head around. Once again, change, even such tiny ones just aren’t something that I can manage without it exploding into a major disaster of some kind in my mind.

I think that it was on Sunday that I woke from my nap to find Adam sat here at my desk. To my horror, he was cleaning it. Most people would be grateful of such an act, he was being caring and helpful. I saw someone making a mess of my life. He was moving about all those tiny things that have to be placed exactly where I last saw them, just so that I know the world isn’t ending. I sat here, once I had removed him from my space, shifting things back to where I thought they had been. Moving them over and over, trying to find the exact scatter pattern of pens and cream bottles that lurk to the left of the screen. Shuffling papers, and pushing the keyboard from side to side, then adjusting the screen, that I knew had moved, be it only by millimetres, it wasn’t where I left it. The whole time I was wound up to exploding point. Not meaning to be ungrateful, but so distressed that you would think he had removed everything on my computer hard drive. I can’t control things like that. I wish I could, but I can’t any longer. It has been on a downwards slope for ages and although I know that Adam understands, it doesn’t stop me afterwards from feeling really guilty over my behaviour.

Losing control, whether it is minor or major, is really hard to accept. I need my life mapped out, I need to know what will happen next and where it will happen. Which is part of what I was trying to get across yesterday. I know some took my words as being totally about euthanasia, it wasn’t. In fact, the majority was about knowing the details of what and where my later months or years will be spent and how and who will care for me. I have like every other single person out there lived for years, knowing that any minute I might find myself in the hospital. For me, it holds an extra trauma. A problem that is so huge that I actually fear it more on the how will I manage than what could be the medical reasons for being there. Just as much as my surrounding, I find strangers hard to deal with. If they are here, here in my home, well I manage far better, but still find it really hard. A couple of years ago, I found myself having to be visited by the district nurses three times a week. Thier fleeting visits always left me unsettled and at times distressed. I know that without a doubt that that situation will happen again, as there is a list as long as my arm as to why their presence could be required.

My need to be able to plan and prepare for what I know is ahead is based in the fact that I know I will be a lot iller than I am now. Knowing what the possibilities are as far as even my care, might just make it all that bit easier. I want to know what aid is available, the actual people I know isn’t possible, but just knowing, having a ladder of people who can be contacted for this or that reason, would make me feel more secure. Knowing what the possibilities are of pain control and other medical interventions that are available to me at home and what point that care has to be moved to a hospital. Knowing what aid is available for my care at home. Despite Adam being here, what care can I still have from the NHS to make his life easier. Would there be respite care? Can I stay here right through to the end, or is there hospice care available should it be too difficult? Where would that be? What are the costs, as we can’t afford anything really? The list of questions that haunt me is huge. Their worst side is the distress it will all cause me and what my reaction to people and places by then. One question especially haunts me, if my bizarre reaction to change gets worse, what then, how much would it change all of it?

As I said yesterday, I don’t intend to die any time soon, but I want peace of mind about what will happen in the future. When you know how you react to the unexpected, being able to put things in place so that I have the time to come to terms with it, could change everything. Not just for me but also for Adam. I know he already stresses over the idea of my going into hospital, partly because of this. He has already told me that he worries how he will manage to get it through to the Nursing staff and Doctors that I don’t deal with change at all. That my routine has to be stuck to, as throw it into disarray and I will be highly distressed by it all. There doesn’t though seem to be anywhere to get these questions answered. Nowhere that I can contact to start making arrangements for what I know is an unknown future, but one that I desperately want to clip the thorns off, for both of us. The closest that I have managed to come up with is to write a detailed care plan, but even for that, we would need some medical input and some of my questions answered.

It seems so wrong that all of this should be so difficult. After all it isn’t just for me, it is for the benefit of the NHS as well. Without a way of getting all of this sorted out in advance, some way of putting my mind at rest and with preparation time to get this stupid brain at ease with it, I will be a horrific patient, not on purpose but because it’s something I simply can’t help. My doctor is a really nice guy, but he is busy, far too busy without me wanting what in reality might be hours of his time, not in one session, but still time I don’t think that would be spent doing what his job is. But who’s job is it?

Please read my blog from 2 years ago – Unpredictable

Yesterday was my day of atonement and boy was I paying for every bit of Sunday! While I was writing my post yesterday I actually thought that I might just have got away with having a day….

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…