Stifeld by perception

I now know that Teressa and John will be here on Tuesday and Thursday, I’m not clear yet at what time as she phoned yesterday afternoon when I was asleep and of course there was no set time. I suppose it is all rather vague right at that second as they are staying with friends and what they are doing when will also have to be part of the equation. So I am just forewarn you all that my posts may be a little broken or short on those days, as I don’t want to exhaust myself before they get here. I really wish that we had somewhere for the two of them to actually stay here, but when we bought the flat the price of property restricted us to just one bedroom, having a spare was too great a luxury. I was about to say if we had just known, but if we had known we would never have bought anything above the ground floor, hindsight is a gift that is cruelly not given to us at the time we truly need it.

Although Adam was supposed to be going out last night he changed his mind and never went. I had long gone to bed before he sent a text to his friends to say that he wasn’t going to be joining them. Through out our marriage I have found it amusing to watch him going through the stages of aging I went through long before him. He has reached that point where going to the pub or a club has little to no appeal, I remember clearly finding myself wishing that my friends would just be happy to meet in a cafe or restaurant, to sit and chat in a quiet environment where not only they could hear you but you could hear them. Even sitting at home with a bottle of wine and few nibbles became vastly more pleasurable and not just to the pocket. He had been talking for the last few days about heading out to see them, something he hasn’t really done for a while now, but this was the first time I found out that his planning was all around me. He at first had made plans to meet after 9pm when I would be asleep, he didn’t want to go out until then, as he would have been leaving me to sit on my own. Not once had we ever discussed it, but it had never actually occurred to me that he would be thinking that way. We had discussed before how much I enjoy just spending time with him, and he had already realised that my never seeing anyone else, had changed his importance in my daily life, far above that of a normal couple, but still I hadn’t thought it would mean he wouldn’t go out until I was asleep. Everyone once married of course plan their days and activities taking their partners into account, but this felt somewhat different to me, it felt as thought rightly or wrongly my position in his thought process had become a little miss lined. Out of love, he has taken on a responsibility for me that as adorable as it is, isn’t required yet. I know form the fact that he phones when he is at work, and asks questions in several different ways to ensure that I am really OK not just saying it. Should he have the opportunity to do overtime, he has to ask me 5 times at least if it is OK with me and will I be OK without him.

We both know that the time will come when I will need his help far more than I do right now. I am under no illusion that I will be able to do even the little I do now, but I am also fearlessly independent and will continue to do it probably past the point that I can manage, a trait of my personality that may be the reason he will ask and ask again. I totally adore him for the way he is managing to keep himself and me together through all of this, not just as a couple but also on the physiological level. I know it must be incredibly difficult at times, but I want his independence, as much as I want mine, for as long as possible for both our sakes,preserving our individuality and sanity. I would have to be the coldest most selfish person on this planet to be just sitting here soaking in his dedication to my life, but for him as much as for me, I don’t what him tied so tightly to me that neither of us then have any sight of the rest of the world. From the day we started to live together and it became clear to both of us that marriage was the most logical and loving step, I did what came naturally for me, to plan his feelings and movements into every little thing I did, from what we had for dinner, to making a home for both of us to love and be happy in. I was the nest builder, the constant one preening and polishing so everything was perfect, but I did nothing without putting him first. His way of thinking and acting was different but no less intense, both of us couldn’t have been happier than we were with our roles and identity. Now because of my health, he is the nest builder, the forager and carer, his place and my place have changed and we have grown into our new roles, sometimes with great resistance and others with the speed of necessity. I have seen him grow and change and adapt, as I have shrunk and altered and failed. For now there is still time for both of us to be independent, even if it is only for a few hours or for minor reasons. Life is full of change and full of growth and developments, although the next steps in both of ours are that bit clearer than we would like, there is still time to grow and enjoy, still time for freedom and love.

Adam may have forbidden me from feeling guilty, but that is a command that I can adhere to as long as he is still living and not just as a carer but as my husband, as part of the wider world and allowing himself to do what is natural, to grow, not to be stifeld by perceived responsibility.


Yesterday and so far this morning have been filled with pain in my legs, it is one of those shift about and twist days, but with little real relief. I sometimes wonder how I have managed to gain wait as although I would class myself clearly as immobile I rarely ever actually manage to sit still for long. I know that I frequently joke about switching them for new ones or just getting rid of them all together, but when you have so little time where they are just there as limbs should be, an assist to life, not a total pain and hindrance to even just sitting, then you do have to start asking what their true value really is. I know I need them, as well I like everyone else needs limbs to be able to cope with the world that I live in, yet as my health has slipped it does start you wondering along those lines, as in would my life be better if. I actually think that knowing my luck I would get rid of them, just to find I am in as much pain as now, phantom pain, pain where there is nothing there to cause it. So I am stuck living, loving, cursing and hating them all at the same time, actually dependent on the actual week, I guess I could say that about my entire body.

I have found myself over the last week often just sitting, staring and thinking. I get lost in the moment with huge ease and without even noticing myself to begin with. I know it has to do with the turmoil of the last couple of weeks, as I am finding myself constantly rethinking everything that was said and every emotion that they have caused. I guess it is going to take time to settle down totally to just what life is with the change in knowledge of my lifespan. It is really strange how although I have for a longtime now had the idea that I wasn’t going to reach retirement age, but having it confirmed by someone who should have an idea of the truth, well it does feel different. I’m not scared of it or really sad about it as I already had made many of the changes in thinking that go along with limited life. When speaking to Adam about this the other day, he jumped in saying that people with MS can live into their 80’s, but he wasn’t taking into account that my MS is progressive and as has been proved that means it does things like shut you lungs down while you still need them. I had calculated that I wouldn’t be here in 2025, just based on what I had read, all that has changed is that another condition is nibbling away at that longevity. With the new information on my MS progress has shown that I was reasonably close with my guesstimate.

COPD was inevitable, I just hadn’t equated it’s arrival at this point. Here is someone who smokes and can’t move about, even without the smoking there was a high chance of it turning up sooner or later, as there is for many other conditions, especially those connected to the heart. MS is not always the killer but it is always the catalyst as once it has removed any chance of you maintaining your fitness, well that is the start of a slow path downwards. 14yrs ago I was a really healthy energetic person compared to many my age, then I had a bad relapse and never got better, 14yrs of doing nothing but sitting or lying down, don’t tell me that doesn’t have any effect on you. Finding myself thinking through all the possibilities, drawing in my mind pictures of what the future will be for me and when those horrors arrive, well they are inclined to stop you in your tracks, staring at nothing and feeling very little. No matter how busy I have kept myself or what I am watching on TV, those thoughts pop up again and again. So I sit, often not really thinking about anything in particular, just general thoughts of what comes next and when, but when interrupted, I can’t actually say what I was thinking about. It’s strange to explain but I can’t put it any better than I have, as I honestly don’t or have better words to explain it.

Although I am sure many won’t believe this, as they are already clear in there own minds as to how I will be feeling emotionally right now, but I still don’t feel depressed by it all. Numb at times yes, depressed definitely not. If anything I have found yet another level of calmness and peace that I hadn’t found before, many of the fears that I had over how many years of unbearable pain I would eventually face, well they have been calmed completely. So in away, this news has been positive, no I’m not trying to put a good gloss on things, this is actually how I feel about things now and as long as I can hold on to the upside, I have nothing to fear, in fact think about it, I have less to fear. I guess there will be more spells of silence, more time drifting in to deep thought about nothing and more time working out where next and what next. I have just been given a tool few of us get, I know what I have left.

Playing Doctors and Patient

I have been mulling over something in the last few days that so far I have no exact answer to, but I still feel the truth is clearly here somewhere. As you know I spent years fighting the system to be diagnosed with MS, all the time convinced the doctors were getting it wrong and I have just been through it again with my COPD, althought this one only took 18 months not 13yrs, both these things and a few more minor ones in the past, have built two pools of thought. The first is simple in it is short and to the point, that I have somehow found the largest number of doctors in the UK that don’t listen to their patients and can’t see what is in front of them. The second, almost as simple as to it’s label but I think with more beneath it, that I notice and pay attention to all the small changes that have happened to me over the years, with the result I know I’m ill before medical tests are able to detect it, as in I am hyper sensitive.

Like most things best to start with the first of them. I know I have had sever totally incompetent doctors in my life time. The first and biggest, no pun intended, was being told I had a perfectly healthy small baby presenting in the breach position, I gave birth a week later in a totally normal head down position to an 11lb 2oz, 26 inch long baby with Spina Bifida. Years and years followed with things being misdiagnosed constantly being sent home feeling stupid or believing I was making it up in my head, but still knowing deep inside I was ill. Could there really be such a large number of doctors out there, who although well qualified, couldn’t see what I knew was there in front of them? If this pool is the true one, then I fear for the entire population of this plant we live on, the belief that this could be the true picture, is a really scary one. I can only go by what has happened to me, but it isn’t just me, I have lost count how many have gone down the same path, fighting all the way to just get the hierarchy of the often superior than thou groupings, to listen to the facts they are being told.

The second, am I hypersensitive, I do actually think there is something in this, not because I was born this way, but because I have trained my body to be such. When Jeffrey was born and died, I became convinced that I had known not what was wrong with him but that I had known something was wrong, I had voiced it as well to my then husband and to my Mother but they just made calming noises and ignored me. I decided that when I was next pregnant I was going to voice ever little concern I had, and I wonder now if that was when doctors first labeled me as hypochondriac and the label stuck. It is a fact that it wasn’t until the NHS lost my notes on my move from England back to Scotland that I started to get taken a little more seriously and I was at least referred for test. There were still no results, but just that bit more interest at least. I suppose that I have gone back and forward to my doctors over the years more often than many, but I always went with good reason, not on a whim or a slight twinge, but with real problems with real feelings, at the time most came to nothing, but added later to the full picture of the illnesses I am actually diagnoses with, but that took more symptoms and more body listening before the medics listened. My COPD is the latest in that group, yes they half listened but it took a further wait and more symptoms for them to get the picture and react correctly. Had I been reacting to it sooner than most people would? Was the problem in diagnosis simply because I was a few months to soon in reporting it and therefor wasn’t able to give them full picture? To be fair the symptoms I started the ball rolling on where mixed and some would have been masked by my medication and immobility, someone who was out and about in the world would have noticed the breathing problems far more than some one stuck in a chair.

It is hard to pull all the small strands apart and to paint a clear picture of who and what happened and was it me as a patient or was it them as doctors, may be it was both of us. I long ago stopped trusting doctors to get it right all the time, but personally I would like them to get it right just a little more than they do. I know that since I got my diagnosis of MS I have listened to everything that my body does, working hard on what belongs to my MS and what doesn’t, what is just there to be lived with and what needs looking at further. I know I am on the unique side of the population who do this, but if I was a doctor treating some one who already has a major illness, I would listen closer, as they are the ones most likely to be there because something is really wrong, not just with a cough or a cold. We should be able to have faith in our medical system but I also think that doctors need to have more faith in their patients. I know that in the past I have been unlucky enough to have come up against doctors who don’t care, who just make quick checks and don’t follow through, why? I’m not sure, maybe they think they know best, or maybe they haven’t been trained to listen, not just too prod and poke. I have also come up against a few special ones who listen to every single word and look at you with compassion, not just as another body in their room. Either way, I know my body better than anyone and when something is wrong enough for me to make the effort and be willing to put myself through days of hell just to go and see them in hospital, well that alone should be enough to say this is not a time waster, this is a person asking for help.

Strangely writing this hasn’t done what I hoped, I thought if I spelled it out I might be able to say which is the truth, it hasn’t helped at all. I guess then that there is truth in both sides and that we as the patient need to do more to show the doctors who we are, as well as what is wrong with us. Doctor, well they to have to see the person, not just a set of symptoms, as together they might just actually get the truth behind what drove them to be asking for help.

And all over a Peach

I have just enjoyed a lovely summertime breakfast which included Peaches and Nectarines, well one of each, just two days ago I was cursing ASDA for there sending me so many, I had ordered both but they sent even more as subs. There now being not just a bowl full but a sizable mountain, means I can eat as many as, when ever I feel like it, even after my porridge I still had some room to cram in the most delicious of heavenly fruits. As a child fruit was always a huge luxury, it was I suppose still seen in my parents eyes as something amazing as during the war years they saw little of it, even though my mother grew up on a farm. Strangely I continued that feeling right through into my early 30’s when suddenly I realized that it wasn’t made of manna and didn’t cost a life’s wages to buy. I guess that what we learn in our early years, effects us more than we think it does and we echo it for more years than we believe possible. I guess that is why that outside of a Doctors consulting room I rarely mentioned how ill I felt most of the time, I was brought up not to talk about such things. Almost as though illness was so personal that it was a dirty thing to talk about and like sex, didn’t actually happen, despite the fact there were 4 children in out family that clearly came from some where.

I still find it really hard to talk, even to Adam and to tell him what is going on and how I feel each day, that I think is why I rely so heavily in the belief that he reads this daily, I can pour it out here but to say the words is somehow very wrong and not what I should be doing. If you add into that the inability to remember how I feel from hour to hour well you can see how little I actually say when he asks “How are you?”, I answer for those few seconds that the question is in the air, not covering the entire time from the last time it was asked. Even now as the parent of a wonderful daughter, I wish it was possible for children to grow up unscathed by what their families have taught them. I failed in that one totally as although we joke that we are the same person in two bodies, the facts behind it prove constantly to be all to true, I just hope I didn’t do too much damage and the good that we see and joke about out ways it. I can only hope that she continues to see that as a positive thing, unlike my aging view of my family has become more and more negative. It has taken me many years to understand where my fear and inability of talking about health had come from, but it should have been so easy to see. Before I was born my Fathers Mother, had been ill for years, she actually never saw me even though I was 2 when she died as she didn’t live with Grandpa. He had divorced her and put her up in a cottage with a nurse to care for her, the family where forbidden to go and see her, it was as thought she was already dead. Worse still my Aunt who I know well as for many years her sister cared for her, as she suffered badly with depression. When her daughter left the shared family home to go to university, her sister made her go too, only months later for here to be found dead in her small flat, she had been dead for 3 months before she was found. When ever I have asked about either of them I was met with a wall of silence, all I could ever get from anyone were the basic facts, clearly I see now, they were embarrassed, but it built higher the feeling the ill health was forbidden.

Over time the attitudes to illness have changed through out society, but when so many of us grew up in families with secrets, the results were inevitable that there are several scared generations out there living with the British stiff upper lip, fearing they to will be bundled off somewhere to die alone. I believe there is still a huge wall to be pulled down, even in the newest of our generations, they see like we did the whispered bigoted statement made about those who can’t help they way they are, the nudges and the stares as a disabled person is spotted in a crowed, or the tutting and cursing when a wheelchair is in their way. Illness will not become just part of life until all those things are broken down and replaces with what should be there, compassion. I feel as though I have just given a lecture and all because I ate a peach, something we take for granted and something like a million other things is now just part of our everyday lives, it’s just a shame that the same can’t be said for the rest of it.

The other evening while watching TV I had a itch on the top of my feet and while looking down at it to check there was nothing there to cause it, I noticed something odd about the toe nail of my big toe. There was what looked like a raised line past the outer edge of the Lunula, it looked at first as though the toenail was missing behind the line which runs horizontally across my nail from side to side. I can actually get my finger nail caught on the ridge and by doing so I could feel that there is actually nail there, it is as thought the nail in front is thicker and the thickness of the nail has suddenly changed. Finding this of course made me look closer and I can see there are also so couple of finer ridges further along the nail but nothing like as clear. At first I thought it was just on my left foot but as you all know by now the left side does everything the right dose, just with less flourish and intensity, it is there on the right side too. The thick drop is at the moment only visible on my big toes, but I can feel horizontal ridging on my smaller toe nails as well. I already know that vertical ridges are problems with vitamins and so on, but I can’t say I have ever seen or heard of any one with this horizontal ridging ever before. I guess like everything else, my body has to find something different and a little unusual to do, never quite happy with the simple life. I guess if I remember I will ask my doctor when I next talk to him just what it is and what is the cause.

I have now been on the medication prescribed by my consultant for a couple of days, I don’t actually feel any different yet, but I guess I am looking for something too soon and I also know that the idea is to long term management not cure. I have to say thought that I don’t like the inhaler, it is nothing like any other inhaler I have had before. It is what they call a dry power inhaler, the clue is in the words, dry powered, but when you click to load it and then breath in, not all of the powder actually goes as far as your lungs. It doesn’t matter how hard I have tried to make the breath in sharp and concentrated it is somewhat like breathing in a powdered aspirin, there is a residue left in my mouth and it has the medicine taste, one that needs washing away quickly. I am sure they have worked on changing and making them more palatable, but I can’t help wondering why it isn’t in gas form as that surely gets deeper into your lungs. No scientist but as a user the gas would be far more palatable.

Finding the joy in living

They say that life only doles out to you, what you can deal with and to an extent I actually think there is something in that. But I think there are two things that make much more difference to your survival ability, the first and I now think most important is simple acceptance, not giving up, acceptance is a very different thing. I have from where I’m not sure always had an attitude of well this or that has happened, I can’t undo it so move on. I actually think I can to some extent pull it back to age 12 and the next three years. I had more things happen to me in those 3 to 4 years, most people wouldn’t have happen them by the time they are 30. As a child you are powerless and learned that well, but I also learned that to continue, you have to let it go, dismiss it’s impact and accept it as just another lesson in how you really don’t have control of anything, so just get it over and done with. As I grew up I tempered those ideas and mellowed in my conclusions as there was much I could alter, but the basic lessons in acceptance continued. Almost everything in life can go one of many ways, but you yourself will seldom be able to choose which that outcome will take you. From the smallest act to the largest, most of the time we are little more than observers, it is only our point of viewing that is changed, in the middle or on the edge what happens, happens. Just as when my son died or when I found myself chronically ill, once the shock had passed I accepted, adding it into the flow of my life, working with it and making my future plans, but with it always in mind.

As I said there are two things, but the second is a little harder to explain. I have already in my life faced the point when death looked like the most likely outcome. To my surprise I just swept it in to my acceptance umbrella and I felt little to no fear, or anything else when I was given the news. Clearly I didn’t die, but from that point on I have lost all fear of dieing that I had ever had. This was a far harder lesson to learn or to explain to someone who hasn’t been there, but I remember feeling totally at easy, totally calm and completely content all within minutes of the words being spoken, as there was nothing in my power I could do about it. I clearly remember right through the five days of waiting and testing, whilst taking up a hospital bed, I felt very little for the first two but what followed somewhat surprised me. I found myself feeling content and safe, without anything or anyone in the world to fear, what would happen would happen, all I could do is sit there and wait for the outcome, neither filled me with joy and neither filled me with fear either. Take all those things together and every day becomes a gift and although it is filled with pain and discomfort, it is still a gift. I can do nothing about all the pain, all the illnesses that plague me, I have filed them as accepted, part of the mass that forms me as a person.

There is a final part, one that I can’t list as a reason as without the first two, I doubt it would have happened for me at all, it is also one that I wish out of all of them I could teach. It is the simplest of all and yet the hardest of all as well, a pure love of life. I actually believe the first two are needed in this modern world for anyone to love the basic fact that they live. When I say I love life, it has nothing to do with belonging, jobs, aspirations or anything else that in the 21st century is seen as living. I love life, the very act of breathing, seeing, hearing, tasting and experiencing. In a strange way I even love my illnesses as they like many other things have taught me so much, shown me things I would never have had any contact with. They have and are probably my greatest teachers I have ever come across, so how could I not have a love of them too. Pain may make me wince, cry or shudder, but they also tell me I am alive, they add to my personal map of what my body is capable of and how it does things, they teach me more daily. Loving life is as simple of loving the fact you have woke to another day, that you are still learning and seeing and growing as a person. A true love of life excludes nothing, accepts everything and fears nothing.

I woke this morning like many other mornings, in pain unable to lift myself from my bed and needing my elevator, everything about my body told me that if I just stayed where I was, I might not hurt so much. I also woke with a need to start my day and to enjoy it, regardless. I also needed to write this for some reason, one that I really haven’t found a reason for at all. I suppose like so much I do on line, I am passing on what I know in the hope that it will help others, all I can do is write it, post it and hope that just one person feels stronger because of what I have said.