Muddled

There are days when no matter what you do life just isn’t quite what it should be, things may seem fine on the surface, but look inside my brain and life is a mess. As I said in yesterday’s post I was up early, the truth of that was I had once again woken early in pain, hot and uncomfortable, I had lain there for about half an hour and Adam’s arrival in the bedroom was a huge relief as I could escape the bed that was causing some of the problems. When I don’t get a great nights sleep, well things just don’t really go that well for the rest of the day, I may appear calm and under control on the surface, but like a swimming dog, I am paddling like mad just below it.

At first it seemed to go OK, having that early start meant that I could get a lot done before I knew I had to get Adam up and ready to face the day, as we had the upholstery company we had selected coming to the house to sort out the contract and finalise materials and so on. Years ago it was the type of thing I would have done by myself without a seconds thought, but these days, well I need Adam with me as my brain just doesn’t sort out figures they way it once did, nor does it hold on to the details, luckily his does. I proved that several times in just the half hour that the whole thing took as I kept getting the figures mixed up and Adam’s reassurance and input meant a lot to me. I had completed my blog before he arrived, so all I had to do was return here to sort out everything on Twitter. Around half past 10 I suddenly out of no where remembered we still had in the freezer the other half of what I had bought for Christmas morning breakfast, so I suggested we had a brunch to use it up and Adam took it out of the freezer for me. I actually began to regret it, the second I suggested it as I really wasn’t feeling well, my entire body was aching and the pain in my diaphragm was ridiculous. I hadn’t felt right for a couple of hours and the muddle I had managed to get in when sorting out the settees, struck me as worse than the muddles I normally got in, everything was wrong and I could find no reason for it. I never dive into the booster pills without first trying for a while to either deal with the pain or wait and see if it will just go away with a little patience, but it didn’t. When Adam decided that he would like to cook breakfast, I was relieved and even though I knew that meant that food would probably be just warm instead of hot, he doesn’t seem to understand about keeping thing hot while you cook the next part, I still said yes eagerly. I knew when he left the room that meant that brunch would be ready in about 20 minutes and I wanted the pain gone, as I reached for my booster pill there was this sudden realisation that I hadn’t taken my tablets at 9am and it was now nearly 11 am, no wonder I was in pain and feeling like death warmed up.

My brain just doesn’t seem to be able to hold onto anything these days, if there is a single seconds change to anything in my day, I forget. I was out of routine with the time I had woken up and with my brain fixed on our impending visitor and getting Adam out of bed in time, my brain just ditched its daily reminder, again. Once I have gone past any point that something is meant to happen, well if it doesn’t it is just forgotten, if it is something like my tablets, well my body does get the message through eventually, but otherwise, well it will be the next reminder point before I even think about it. Tablets taken and food eaten and I felt better, but I still found myself standing in the kitchen with my dirty plate about to add it to the clean ones in the dishwasher, Adam spotted me at the same point as my brain was entering a spin of not knowing what to do with them. I could see the clean dishes, but dirty dishes go in the dishwasher and even when Adam said, “just put it on the side”, I still had this feeling of scared confusion until I put them down and turned away to look in a different direction, then normality returned in my head. Besides the tiredness from lack of sleep, fatigue was setting in alongside it, between the mix up with tablets and lack of sleep, I wasn’t surprised at all. I did take a booster an hour later as my body was just a mess. Three o’clock brought the pleasure of going to bed, I sat on the edge as always and got myself ready, clothes off, earplugs in, sleep mask on, lie down ensuring all my hair is out from under me and spread over the pillow, then relax. Sit up again as I forgot to set my timer for an hour and a half, lie down again and once again sort out my hair, something is wrong, lie there trying to work out what, then eventually notice, I hadn’t put my sleep mask back over my eyes, it’s sitting pulled up on my forehead where I left it after setting the alarm and the whole palaver had to be gone through again, because once again my mind had ditched one step because I had done it, I just couldn’t hold onto the fact I had also undone it. The whole day was filled with stupid silly little things that make life hard and things that no coping strategy could possibly change. The only part of the day that passed without mental dilemma was when eventually I was sat just staring at the TV and not actually trying to do anything else. Even my hour of game playing had turned into a personal confusion which when you are playing something that requires you to work out problems, well failure is to be expected.

Over the last year or so, I know without a doubt that I am having more and more days like this, days where no one other than me or Adam would see the slightest thing wrong, but we know. Yes I know he sees it, it’s another one of those unspoken things, a process of him just keeping an eye, guiding me gently back into a settled place and a major factor that means strict routine is essential. When I am on my own, I muddle along, sometimes getting myself into a panic or spending long periods of time scolding myself for what I see as stupidity. My brain just isn’t the brain I remember any longer, it still works well enough to allow me to manage, but it does the stupidest things without any reason or my permission. It doesn’t process the logical or illogical any longer as it quite often doesn’t know the difference, frustration is my constant companion and yes you do get used to even that. I often wonder what it will be like in the next year or even the one after, will it still let me do anything, routine or not that I would now see as normal, or will it create some odd new world where the illogical is possible and a friend.

My day didn’t end on the settee, no it ended as all days end, I was sat on the side of my bed, clothes off and rolling the little cylinders of compressed foam so that they become a tighter and smaller diameter, only then can I put them into my ear and make sure that they are twisted into my ear canal so that they from the best sound proof barrier. Like ever person alive, my brain started to go over the day and look forward to what today will hold and with my mind now no longer paying attention to what my hands were doing, I suddenly realised that I was in pain in my left ear, I was sat there trying to not turn the earplug inwards into my ear canal, but outwards through my actual ear and I was pushing the point of my fingernail into the skin. I guess what they say about a day that starts one way, ends that way too, is true, brainless.

 

Please read my blog from 2 years ago today – 31/01/13 – Working togetherĀ 

Not long after I joined Twitter I made contact with a group of people who have been unfortunate enough to have a brain tumor, just one of the many groups of people that I have found share many of the problems that I do. It changed my reason for being on Twitter……………

Is it something else?

I was driven to bed last night by a combination of tiredness and pain. Not the pain that wants me to scream, but that long drawn out aches that there is no relief from. As often happens I was quite comfy sat on the settee for the first hour, then just after 8pm, first my left foot start to hurt around the outer side around my ankle that spread over the front of my foot, then my intercostal muscles and diaphragm joined in and finally my left arm. I have always found that no matter how traumatic severe pain is, it is the constant aches that seem to wear me down especially in the evenings when my energy levels are low. To be totally honest, I would swap it any day for a short-lived strong spasm as once they let go that is it over other than the shadow that remains for a while, almost like a threat that it could return any second, but it is normally just a threat and it’s over with. As I always do I sat there to 9pm, determined that I wasn’t going to vanish to bed earlier than required as even though Adam isn’t at work just now, I still love that time we spend together just sat watching TV. It was my arm again that woke me this morning, but to my surprise
Adam wasn’t in bed, it turned out that he had just fallen asleep on the settee and actually woke not that long after I did. I heard him just after 6:30 am as he tried to sneak into the bedroom, even though I did have good earplugs in place. There is something about the sound that the bedroom door makes as it moves over the carpet that I am totally turned into, asleep or awake, this morning I was already awake and glad that he was coming to bed as it meant I could get up.

It can be hard to work out when something started in my life and if it is part of my PRMS or not, the doctors think that my first symptoms were back when I was 21, but that is a bit of a guess on all sides, but it feels like my left side has always been the side of my body that has been affected worse than my right. Every symptom I have had has always appeared first on my left side and it is always the side where pains and aches are more intense, if it were equal to my right side, well life would be a breeze, without a doubt I wouldn’t have become housebound when I did. It was the complete death of my left arm that lasted nearly a year, followed by the fact it has never regained its true strength, that forced me to stop going out. Without out it using my manual wheelchair was impossible and stopped me going out alone, then the rest gave in and made going out totally impossible. I honestly think if it hadn’t been for my arm, I would have been able to manage the outside world for another couple of years, my left side has a lot to answer for. I know without asking that every time I say my left arm is hurting that Adam starts to worry that I am having a heart attack, it is a fear that I totally understand as that is how he lost his father when he was just 10. I have to be honest in saying that if I were, well there is a huge chance that I would just be sitting there trying to ignore the pain and telling the world that it is just my PRMS. Between my arm and the pain I constantly get in my chest, well who knows, but if I were to go to the hospital everytime I felt it, well I would be living in A&E, it is yet another one of those things that I just honestly don’t think I would be able to tell the difference.

Clearly I have thought about this, as I wouldn’t have written that paragraph if I hadn’t, I guess it is just one of those things that once your health is shot, well you just don’t know what is what. On top of that, well doctors see the letters PRMS in my medical records and instantly that is the reason for everything else, even my COPD has an element of MS connected to it. I know without a doubt that it is one of the things that plays on Adams mind, I’m not stupid, but it is unfortunately, the way life is and no matter what I do, I can’t stop him worrying. I am sure that there are couples around the world who live just as we are, who have the same worries and the same problems and that there is no right or wrong, but I just wish that there was. I don’t know how it is that I can just accept things the way they are, that I don’t fear the worst at every twist or turn, but I am incredibly at ease with it all, as I know there is nothing that I can do change it. In the years to come, I know without one second’s thought that there will by other symptoms that will appear, symptoms that I am sure will mimic other conditions and we will have all the stress of that to bear as well, but what can we do about it? PRMS is a condition that affects the nervous system and it can do whatever it wants to any nerve in the entire body, that basically means that anything can happen.

None of us, well or ill, knows with any certainty what will happen in the next second, far less what will happen in the next year, but the ability to mimic, to make you think the unthinkable constantly and that is going to get to anyone, even me occasionally. So OK I am officially dieing, but that doesn’t mean today, nor does it mean they have got the timeline right, eight years to go, well it could actually be a lot longer.

 

Please read my blog from 2 years ago today – 30/01/13 – Sorting out the clinic

Evenings for me seem to have settled into a pattern that I don’t like but seem to be stuck with, but they are really strange. What I am finding so hard is that when Adam comes home from work until about 8pm I feel totally awake and happy to be sitting chatting and watching TV together, then something happens…..

The Future

Sometimes I write a sentence that when I read it back, I discover that it really has a feeling that more should be said and that leaving it there, is like closing a door on what has to be said. I had that feeling yesterday, not about one sentence but about the last half of a paragraph, but time had taken over and to write more at that point just wasn’t possible, so that is where I am today.

I mentioned that I wanted our suite fixed long term as I didn’t want to leave Adam with a home that needs so much done to it that living here just wouldn’t be what I wanted after I die. I’m sure that different people took that in different ways, that is they way life is, but for me the reason is so easy, I am one of life’s nest builders. It hasn’t mattered where I lived, from the first rented flat to this the first home I have owned, I have always nested in it, making it as much an extension of myself and a place I could be proud of, as one that felt like home, a place to come home to that welcomed and cocooned as soon as the door was open. Everywhere I have lived, I have decorated, tweaked and preened to the nth degree, no detail to small or to complex existed, everything had to as perfect as possible where regardless whether they are friend or partner, they would be happy to be and a little thing like dieing, isn’t going to get in my way. I know without a doubt that although Adam loves our home, he isn’t as bothered as I am about how things look, having a suite hiding under throws didn’t seem to phase him at all, when one of the springs broke, that got his attention but appearance, never. It’s only one example of how he sees things differently from me and I know his nature completely, once I am no longer here to push through actions that make this place home, they will slow to almost a full stop. I don’t think men see homes in the same way as women, they are content to just have something comfy to sit on, how it looks, or it’s ability to last, well those things just don’t matter.

Before someone thinks it, I just want to make clear that I don’t want our home to be a mausoleum, not for a second. He can change whatever he wants and he will, but things like that don’t normally happen straight away, so I see it as essential, that at least until he is ready to change things, they will provide him with a home. I actually started the process a long time ago, not that long after I was diagnosed with PRMS. At that time I looked around our home to see that what we had was this strange mix of things mainly from my life prior to meeting Adam, along with the cheapest things we could find, which would allow us to move from a totally furnished rented flat, into an empty shell that was going to be home. I suddenly saw that I had a limited time ahead of me when I would still be working and that meant a limited time to make it a home, one that I would be comfortable in once housebound and one that would take care of Adam when I was gone. Internet shopping was still in its infancy, but I knew without a doubt there were bargains to be had and set to buying the best I could afford at the best price. No MDF, all our furniture had to be wood, badly fitting windows had to be replaced with double glassing, dusty drafty wooden floor were covered with thick underlayed carpets, dinner services, cutlery, table cloths, bedding and curtains all bought and replaced the cheap and the nasty. It took several years, but it was done and when I did become housebound, well we had our cocoon. White goods never last as long as we hope and yes most have been replaced, the most recent being our fridge freezer, the only thing that failed and hadn’t been fixed was the settees covers, the cost scared the hell out of me.

I know without the slightest doubt that Adam will slowly change and even sell some of the things I bought, like my beloved crystal which he hates as it constantly needs cleaning, although right now he says he won’t, but that is fine, in fact it’s actually good as it will be his home. I just want to be sure that he isn’t going to be trying to live here in a mess and a muddle struggling to pay bills, whilst needing money to repair and replace the most basic of things, just to be able to live. If my doctors are right about how long I have left, well our mortgage will be almost paid, I paid into to it the bulk of my redundancy, bringing down the payments to a level that means even whilst on benefits, we are managing so far and should continue to do so, with a small amount left to go when I’m gone. I have planned ahead as well as I can, with as much care I could when living with unpredictable health and I am not finished yet. Bit by bit I am doing what I can to make not just our future together the best I can, but to also ensure that the first few years after I am gone, if he wants to, well all he has to do is work and live, then when ready he can change the lot if that’s what he wants.

When you find yourself facing your own demise unlike what most people expect, well at least for me anyway, it wasn’t myself that I found myself thinking about the most. Yes, I went through a spell of grieving for myself, but once I can out of that, I instantly thought about Adam and what I could do to make the whole thing as easy as I could for him, I’m not kidding myself in anyway about what the future holds for both or either of us, but somehow I feel responsible for both of us. Being so much older than Adam I always knew that I would go first, even before I was diagnosed as being ill, I already had a long-term plan of what I was going to do for him and my daughter, then everything changed. Not being able to work changes all your plans, finances end the insurances you had and the possibility of ever replacing them, so then all we can do is plan the ephemeral, the things that bring comfort and nothing brings more comfort than a home.

 

Please read my blog from 2 years ago today – 29/01/13 – Disability livingĀ 

I’m in a clicking mood today, which I guess is another way of saying the world is a little foggy, just custard up to my ankles and rising. I’m not sure when it started but I have noticed that I now take a strange happiness from foggy days, maybe just simply because…….

Taking the pain

Despite being up nearly an hour early, I am already so far behind on my day that I doubt I will really be able to catch up. I woke both needing to go to the loo and the pain in my left arm that I have woken with a few times recently, was back again. I quite simply can’t work out what I am doing to myself to cause it, I know it could be something to do with my PRMS as I have had continual problems with that arm now for years. Waking and finding that it feels heavy and sluggish has happened so many times I couldn’t possibly count them, this pain though is new and is in places that mean I am sure I am putting it in some odd position while sleeping, four hours on and it has nearly totally vanished again. Being up early had a pleasant twist though, with Adam now making it into bed at night I didn’t have to return to bed and just lie there waiting for the time to pass, I could just come through here and start my day. There has been so much going on in the last week that I realized that I haven’t been for a shower and Adam hadn’t reminded me to either, so for the first time in years, I had a shower in the morning. I know it wasn’t probably the best idea as my balance for some reason always seems to be worse when I am first up, but it was an oddly pleasant thing to be doing, despite the fact it was totally out of routine and it kept going through my mind that I was simply doing the wrong thing, only time will tell. It doesn’t happen often, but for once I actually enjoyed my shower. As I have been doing for a long time, I now always twist the showerhead so that the water isn’t been sent at me like vicious spikes, more a gentle cascade, today was one of those days where it was just perfect. When there is something that you have to do, but you know that it is going to cause pain, well you are put off from even trying. I sometimes even wonder if part of the reason that I totally forget to do it without being reminded over and over, is in fact part of the reason my brain finds it so easy to ditch as a possibility, a touch of self-preservation. Today it all went well and I found myself in the rare position of actually not wanting to leave the warmth of the water and I did stay a little longer than normal, despite the fact I knew Adam would be wanting in there at any minute as I had heard the alarm sounding not that long after I got in there. It was a sudden pang of guilt that shoved me out, as I remembered chasing him out of his shower a few days ago so I could go to the loo and here I was dilly-dallying.

For three years now we have lived with our living room suite being covered by throws, it used to be totally beautiful. We chose it as after months of searching, I had eventually found two settees that were the perfect size to fill the two spaces we had in the room, plus they were pale cream with loose covers so that I could wash them whenever needed. Added on to that, I knew I had found a total bargain as together they cost less than I had seen other similar suits costing. Everything was perfect for the first 4 years, then the material started to thin in any place that received heavy wear and each time I washed it, it got thinner and thinner, so I covered them up and although I thought they were a total mess, I had no other option at the time. A couple of months ago I received a payment that I didn’t expect from the credit card company, thanks to the “PPI” scandal I got back every penny I had wrongly paid them, plus a small amount of compensation. It isn’t quite enough to pay for the work, but close enough when I add on the money I have saved by using an e-cig instead of real ones all the time. It means we can at a last afford to get our settees looking like new and fit to last for many years to come. This morning we had our second quote, I always like to shop around before I say yes, so we were both up and speaking money and fabrics before 9am. Thursday will hopefully bring our third and final, but so far the one we saw this morning is winning. There were several things that made his company stand out too me and the materials we saw were much better quality. As soon as I said that I had MS, they said at no extra cost due to my illness they would include changing the cushions for orthopedic one, I might actually be able to get up off it without feeling as though I am fighting my way up a mountain. Thursdays appointment is going to have to come gold plated and wearing feathers, otherwise I honestly think they are on to a loser. It’s odd how something as little as the expectation of having a suite that I can be proud of makes to how I feel, if I could, I would be walking with a distinct spring in my step, the first for a long time. It is also more than that, it is one of the things that is on my list of things to sort out for the future when I am not here. I have a strong need to know that our home will take Adam onwards without the hassle or expense of doing the things he would just put up with. I don’t want him to be putting up with anything, I want things perfect for him and as the salesman said, do the work now and it should make the suite last at least another 15 years. The last ten days have turned our lives upside down, it somehow seems right for us to be sorting out other things together as well.

I seem to be popping more booster pills in the last few days, I sort of expected this, it is a fact that all forms of MS don’t react well to any form of stress. Clearly when life takes a turn and you have to almost wipe the slate clean and start again rebuilding relationships and all the things that surround them, well an increase in pain and fatigue is inevitable, which without a doubt is all part of our problems. Adam has spent so long trying to protect me from the world, to maintain a calm and stable home life, that he just buried everything out of fear of making my health worse. I can’t speak for him, but I know enough now to know that what I have seen in the last few years was a totally loving and caring front, covering a mind filled with a million things that couldn’t be said. I have said it many times before, but an illness like mine doesn’t just affect the person with the illness and I fear that right now there are carers out there doing exactly what Adam has been doing, all I can say to any reading right now is talk, please talk. From my side, the last thing I ever wanted was to put him under any pressure, I still can’t believe that I was blindly going on with life unaware of it all, but I guess that we all want to believe that life can go on as it always did, Adams desire to care for me in every way was working too well for me and not at all for him. Taking a few more tablets for a short while, well it’s worth it, I can manage a bit more pain if it takes away the pain from him.

 

Please read my blog from 2 years ago today – 28/01/13 – There is no fear.

I had a message yesterday from someone on Twitter yesterday in which they said they admired my ability to cover my fear, I didn’t answer it at the time as 140 chrs would have been impossible. I just hope the lover of honeyed parsnips is reading today. To some I know that it will sound odd……..

Another door opens

A major question appeared yesterday, one I thought was in the past now and that both of us had come to terms with in our own ways, my death sentence imposed by my health. Those who weren’t reading back in June 2013, well click this and it will take you back to the day I was diagnosed with COPD and the following days were I worked through the impact and my conclusions at the time. Oddly although we both knew that my PRMS was equally a slow death, it was one where we had no time line, no point given where things might end or ever a time line of how my future would pan out. My diagnosis with COPD couldn’t have been more different and for that reason our reactions were very different.

A diagnosis with something slow moving, like PRMS, is always going to be difficult, but you don’t look at it as a death sentence, it is more a life sentence. You are going to die sooner than you might have without it, but it doesn’t feel like you are dying, it just feels like you are being given a very unfair and unbelievable future that none of us want to face. I don’t know if it is our age difference or if it is because we are very different people, but I accepted it with much more ease than Adam did. I suspected then as I do now, that it had a lot to do with him losing his father when he was just 10, I was going to be the second person he loved, who was going to leave him far sooner than he could imagine or handle. But as the months and eventually years past and I was still here, not fit and healthy but here, I thought he had accepted that there was nothing we could do about it and we had to just enjoy the years we had together as much as we could. I stopped thinking about it, yes occasionally something would appear on the news or in some TV program that would trigger a moment of thought, even discussion and occasionally tears from both of us, but you can’t spend your entire life just waiting to die. Life goes on and we seemed to be together on the same page and working our way through our life together. Then came the COPD, it was very different for both of us, as it was a totally different situation, this time I was given 10 years to live if my now diagnosed Emphysema was to kill me, or sooner if my PRMS managed as it has been trying to ever since, to squeeze my lungs so tightly I couldn’t breath at all. Suddenly the whole ball game changed and everything had a totally different feel. We spent days talking and Adam seemed to accept what the doctors had said and what I had decided, that life would go on unchanged, other than making a few arrangements for when my time was clearly up. In fact, I actually believed that Adam had accepted it far better than he did my PRMS, well he was older and had already handled the original diagnosis, so once I saw normality returning, I didn’t give it a seconds thought, I was so wrong.

Last night I realized that I had got it wrong, our short week of talking after the diagnosis wasn’t enough and we both still have a lot to work our way through together. I was wrong in the way I handled it, I did what I thought was right, to work it out in my head and then write it all down, discuss it and close the book there, separate from everything else. I have always like most people departmentalised my life, each part of it separate from the next and not allowed to affect any more than they had to, any other aspect of life. It is undoubtedly a coping mechanism, but unlike many others, I always made space in my mind to think about things even if no one else knew I was, nothing was boxed that tightly that I couldn’t see into it, work on it and close the door again until the next time. Hence a lot of my posts, glimpses into each room that I have revisited and felt a need to reassess or adjust what was going on in there. What I didn’t realise was that I was heading forwards with all the things my health was doing to me, while Adam was still holding everything back at the points we last spoke about it and that he hadn’t been giving me his fully feeling about any of it, because he didn’t know how to without causing me more issues along with showing how it really was hurting him. As so often is the way in life, we started to talk about it all far to late in the day, I was too tired and at the point where my body was shutting me down and I just couldn’t stay up long enough to really talk about anything with any logic or feeling. It isn’t just one of those things people say, men are not as good as women at dealing with emotions or about talking about them, I found outlets along my side of life, through friends at first then through writing and I hadn’t been talking to the person who I really should have been, Adam. I thought that I was protecting him, something we women are bad at, we always think we have to protect those we love, when in fact we aren’t protecting them, we are pushing them out.

Being given a ticking clock to live with isn’t a case of trying to not hear the tick, or listening to it every second of every day. It is like that heirloom grandfather clock in the hall that you don’t hear when the world is awake and noisy, yet the second the house is quite and you want to sleep, that tick is so loud that you want to take an axe and destroy it, but you can’t. When you do hear the tick it can drive you into places that you normally wouldn’t go and when you are there you want nothing more than to reach out, but you fight it over and over as you don’t want to hurt the person you are looking to for comfort, you believe they are handling it all so well. When both of you play that game, well the results are bound to get messy. This talking game we started last week, is showing up flaws in both our methods and showing me more and more that neither of us can be strong for the other, when neither of us have quite fully dealt with our own feelings, feelings we should have shared. I honestly thought that the time would arrive driven by my health when we would talk again, that that was the normal way people deal with these things, no one had ever shown me a way of doing it differently or a need for anything else, it appears that other things has brought the time around sooner than I thought.

It’s hard for anyone dealing with the unknown, even harder when it is something people never talk about openly or they don’t have people who have been through the same to turn to. I have never seen it, or like anyone else been taught how to die or how to help someone else who loves you to go through all that this process brings with it. It is on one level the worst thing anyone can face and on the other the greatest adventure anyone ever goes on, as its the only one that no one can show you what lies ahead or how to behave along the way.

 

Please read my blog from 2 years ago today – 27/01/13 – A loss of trust

Yesterday evening I discovered that I have been telling myself lies and doing so with great ease and accuracy. This is a little long I know but bare with me as the sequence of events is important. Every second Saturday…….