Rewriting life

I dissolved into a total mess. The tears were not running, but pouring and I had no way of stopping them. I think that it was just something that I needed to do, that point had been crossed and everything had become too much. I didn’t just cry for a few minutes, I cried right through the day whenever anyone spoke to me. The district nurse was the first to see just how screwed up and exhausted I really was. It goes to say that I chose not to have the enema, not just because I was whacked but I was also very aware that my body didn’t have a need for it. If this week is anything to go by, I think twice a week is more than enough, which is exactly, if you remember, what I thought before we even started. We all know our own bodies and I probably better than a lot.

Next, it was Adam. Yes, I know he is the last person who deserves my letting rip, but he phoned to say he wasn’t coming home at lunchtime and that triggered the tears. For once, I really needed his help. I quite simply didn’t have it in me, to prepare and ferry my lunch, meds and so on, back and forward. He set off for the house straight away. He hadn’t really had a reason for not coming down the road, just a case of him feeling lazy, so I didn’t feel too bad about saying “I need you”. As normal, he was only home for twenty minutes, but it was long enough for his legs to do the work, instead of my arms. Having a wheelchair doesn’t make things any less exhausting than having to use your legs. If and when I get the electric one, well that will be a different story, something he totally agrees with. He hadn’t been in the door for more than a handful of seconds when my tears and his reassurance flowed, both deeply needed. As time goes on, my need for his love and his arms around me, are growing.

From my previous post, it must have been clear to all that we desperately need to change the way things are done daily. The tears, well they were just the final sign that I’m not coping and that all the change that has happened in the last few weeks, is getting to me, I can’t help but feel the real issue is organisation. My energy levels are being stripped daily because I am being forced into trying to do far more than I can. Yes, all of the people suddenly involved in my life, are here to help, but their impact on me has to be changed. Tonight, we are going to start by clearing out my wardrobe, this will supply me with space for all the inconstancy pads, wipes and so on that keep arriving. That will remove one pressure on me. It might be silly, but I really get embarrassed by the fact that they can be seen, yes, it is only by myself and Adam, but that is bad enough. The nurses left another pack of towels on the living room coffee table earlier and I hadn’t had the energy to move them and hide them. With no space in the wardrobe, they are slowly piling up on top of a lot of junk and I can’t see what is what. This morning, they all fell out onto the floor, more work, more energy being used that I just didn’t have. So tonight, we are going to sort that one, it may sound small, but it’s all the small things that have mounted up.

While we are sorting the wardrobe, we also plan to talk about my meals and see if we can work out menus that I enjoy and Adam can prepare, which might be the difficult bit. Adam isn’t exactly a cordon bleu chef, his cooking skills are somewhat basic, but that’s the food he likes. His idea of a good meal is a fish finger sandwich with salad cream, I wouldn’t even feed that to a dog, but we all have our own likes and dislikes. We need to come up with a mixture of things, either that Adam can prepare and I just take out of the fridge and eat, or he can come home and throw in the oven or microwave, that takes minutes to cook. There is also the issue that has been caused by my latest tablet. The potassium bicarbonate tablets, have to be dissolved and taken with or after food. The very first ones showed me they have to be with, as I landed up with heartburn. The first problem is the glass of cold water. We have removed the back and forward to the sink and cupboard issue, by putting a bottle of water in the fridge and a glass that will now live on the counter, but that doesn’t get it into the living room where I eat. Transporting a glass and my food in my wheelchair is just as hard as it sounds. To get around it yesterday, I prepared a snack to follow my meal, but that’s still more work and more energy, not mention more calories that I don’t need. Nor am I sure that I really want to finish every meal I eat, with cod’s roe and cream cheese, despite the fact I totally love it. Such a tiny thing has turned into such a huge issue. There just has to be a better answer.

For me to live, to feel as well as I can, I must move as little as I can. It is that simple, but achieving it is incredibly hard. None of us know just how much we move around until we are faced with looking at our every action. I used to have it down to a fine art. I used to be able to bunch up every trip that I took, to include as many things as possible, without retracing my steps, unless totally unavoidable. Add an enema, add a new tablet, add answering the doorbell, add letting people in and out, then do it all more than once in any day and all that planning, all that precision leaves more swiftly than you can imagine. Just how do I get it all back, as I want to live again, not spend the hours I’m awake feeling half dead.


Please read my blog from 2 years ago today – 08/07/2014 – Letting go

I lost just over an hour of my morning today and all because of two things, the TV and Adam. It is normal that Adam switches the TV on while I come up here and get settled for the day, but this morning although it all seemed to come on, nothing appeared on the screen other than blank blue. We talked about the possibilities and Adam carried out a couple of checks, but nothing happened, we even….

Back to the beginning

I woke up tired, with no reason on earth other than what I do daily online, as to why I couldn’t go back to sleep. It was genuinely, the very first time where I almost did, what I have been tempted to do so often. I honestly, don’t remember ever feeling quite so drawn to disobey the clock and say “To hell with it, I need to sleep.” There has been through all my life, this drive to work, to do things as they should be. It doesn’t matter if it is paid work or just the daily work of life, I always have to do what is right. I know that it started from childhood, from my parents demanding that life ran to two things, the clock and work. Work covered everything from, of course, going to school, homework, working in my father’s business and household chores. It was something I was grateful for, as it gave me a structure to hold onto, throughout some of the darkest years of my life. When I fell into a depression that twice nearly took my life, structure or as I call it now, routine, kept me going. Housework had to be done, the children cared for, the garden kept perfectly, clothes to be made, bread to be baked and the list went on, there was work, and always, more work. When I found myself housebound and working from home, I developed a routine that in many ways, hasn’t changed since. Clearly, part, at least, was governed by the work I had to do for the office, the reports that had to be on time, the bonuses that had to be calculated and so on. More than that, though, I developed the structure of living totally from home. I may no longer be paid, and my hours have diminished greatly, but routine has been, and is still, at the heart of my life. There are hours by which things have to be done, the only one that put’s any sort of pressure on me these days, is writing this. It has to be done before noon, else wise, I know I’m letting others down, and that doesn’t sit well with me, in any way.

Not long ago, I know that I mentioned in one of my posts, that I am now so tired, that I knew I needed more sleep, but I had no idea where to find those hours I needed from. Well, I am beginning to piece things together, that will hopefully allow me to take more time in bed in the morning. My routine has worked so well for me, for so many years, that letting go of any part of it is always hard. I have, though, done so regularly. I have had to over and over again snip away pieces here and there. Reducing this, or that, bringing it down to a size, that I can cope with as my health has slipped, further and further down. For months now, I have been having days when the whole things, just feels too much. The pressure that I have been putting myself under, is once more too much, but no matter how many times I have looked at it, I could find nothing that would allow me more spare time. I have nothing left that I am comfortable cutting away. Then last month, I discovered something, that I hadn’t noticed happening at the time. Every time I have reduced my “work”, I have cut away items from my list of tweets. Over the three years, I have been on Twitter, I have reduced my load from sending out, at least, one tweet every ten minutes, 24/7, down to 4 per hour. No matter how much I cut and tweaked, I never seemed to have any more time. What I hadn’t realised was that the time I produced, was being eaten up by my blog. When I started blogging, I was satisfied to have written as little as 3000 charters, I am now not happy until, I have found at least 7000, usually nearer to 8000. I have often found myself sitting here almost banging my head against the computer screen, as I simply couldn’t find anything else to really write about. Inspiration would appear and my then 5000 charters would explode to 9000 plus. It is no wonder, that I never freed up any time. So this is my first change. There are no longer any rules about how long a post can or can’t be. From here on in, a post is the length, I am content for it to reach. Some might be just a couple of paragraphs, another, much, much longer. From here on in, my daily health will govern what I do, rather than some mad rule about characters.

Outside of what I do online, my biggest problem for years, when it comes to getting enough sleep, is Adam. He is so bad at getting up and has since we married relied on me, to see he was up for work. I know for a fact, that if I just woke to see him out of the house, then went back to bed, it simply wouldn’t work for me. Without a doubt, that is the logical point in the day to extend my sleep, as it’s the point where I don’t want to wake. The sleep I take in the afternoon, is often not true sleep, more a doze, and in fact, if I were to sleep an extra hour in the morning, I probably wouldn’t even need to try again later on. I am so used to dragging myself through the mornings, fight tiredness, which slows down everything that I do. On the odd day where I have been awake, everything flows with ease and I complete my tasks with time to spare. Just being able to sleep one hour longer, could change things for me totally. Last night, I broached the subject with him and we have decided, that we are going to give it a go. He will set his alarm on his phone, which with my earplugs in, I don’t hear. There are a lot of things that have changed in our lives, that I wasn’t allowing for when I was worrying about him, not waking for work, the biggest being just simply, maturity. I am still going to set my alarm, but for an hour later, to start with and see how it goes. Any longer than that, I put myself outside of what my pain medication covers, trust me, waking every day in pain, isn’t a good way to set yourself up for anything.

I can’t live without routine. Although I had already removed the time restrictions for all tasks, I hadn’t looked a the most logical change of all, the time spent writing. I honestly don’t think anything will be lost, as on my inspired days, the words flow freely and fast, really fast. If there are any rules about writing, that is probably the one above all others, that should govern it, internal inspiration. We all need routine, but it should be us running it, not it running us.


Please read my blog from 2 years ago today – 19/12/2013 – Just another day

I woke this morning almost unable to move, every part of me was not only stiff, it was also in searing pain, especially my back just above my waist. I kept trying to find the strength to lift just one side off the mattress…..





Every solution breeds a problem

For the first time since I sat in my wheelchair several weeks ago, I actually abandoned it yesterday. I had just been back and forward to the kitchen three times, the first planned, the second two, to fetch what I had forgotten. On the final time, I climbed out of my chair and was about to sit back down here. My eyes scanned the desk as I was lowering myself with the aid of my desk, when I realised, I hadn’t been to the fridge to pick up a drink. I gave up on the lowering and slammed down on my chair, my head hanging low and so angry, I wanted to scream. Once more, I was going to have to fight with my arms, which had complained through every turn of my wheels, on my last trip. Here I was, with no other option, but to return to the kitchen and to go through all of that again, but, I did have an option, I could walk. In some ways, I am really surprised that I haven’t taken that option before. I still have legs, yes their weak and they are unreliable, but they are still here. So I did it. I walked. Through every step, I could feel myself shaking from my toes, right up to my hands, but it was still faster and it didn’t hurt my arms. I had walked there and back with my hand dragging across the wall and grasping at anything, I thought, would hold my weight if my legs failed. I have to admit, that the relief when I was once more sat here, was huge. All I could hear going around and around in my head, were questions, “What would I have said to Adam if I had fallen?”, “How would I explain the fact I had left my chair and stupidly walked all that way?”, “What on earth had I been thinking?”

It isn’t something I am going to do again in a hurry. Somehow, I think I actually needed to do it. Not just to fetch the drink, but to remind me, why I am now once again on wheels. Changing your life, from ambulatory to assisted by a wheelchair, is a huge thing to do. The idea that you just sit down and totally forget, that your legs are even there, would be madness. I can, as far as the physical mechanism of walking goes, still actually walk. I can stand up, take a few steps in safe areas, but the whole idea that it is safe to do so over greater distances, would be the greatest form of insanity, I could lay claim to. Trust me, life in a wheelchair may be safer, but it is a million miles from easier, faster or even enjoyable. At first, it was all a challenge. Dealing with all the sharp turns and obstacles that seemed to actually jump out in front of me from nowhere. I learned, I grew more confident and slowly, I became used to it. At about that very point, my arms and hands stopped just being annoyed at me and took up a stance, of pure objection to the whole thing. Mornings have usually been not to bad, but as the day progresses, there is less and less cooperation. By the evening, it isn’t just when I am moving around, but when I am doing totally nothing, I am in pain from my neck, across my shoulders, and down into my fingertips. Worst of all, it is no longer just my thumbs that are dislocating, I now have three more fingers, that have discovered the same trick. None of them jump out totally, but enough, trust me to cause extreme pain and to have me grabbing and pushing them back to a normal location as fast as possible. If anyone has the cure or even something that would help, please tell me it. It so often feels now, that what seems to be the answer for one problem, turns out to be just another problem. Life has reached a point where nothing is a simple straight forward process and I honestly, can’t see it getting any simpler, anytime soon.

It isn’t just pain that my chair is causing. I have issues at night because I can’t manage to move quickly when I am half asleep, without crashing into things, usually causing myself more damage than anything in the house. I need speed, because I normally wake, out of the need to get to the loo. No, I don’t want a commode in the bedroom, not for a long time to come. My chair won’t fit into the far end of the bathroom. There simply isn’t enough space, although that wasn’t a problem two months ago, it is now. So, I am now considering grab bars and rails, to assist me. A step, I’ve resisted for so long, that it somehow feel ironic, that I’m thinking about them now, thanks to another aid. Again, thanks to my chair, having a shower seems like a much more complex and annoying process, than ever before. Clearly, standing in the middle of the bathroom, to get dry is just too dangerous. If my legs won’t hold me when walking, or even just standing for a short while, the danger when twisting, standing on one foot, or any of the other odd positions, we stand in when getting dry, is pure danger. Bringing my chair in with me, yes, it means I can sit down, but because that means it has to be brought in backwards, once in, I can’t get to the loo. It also makes getting dry, one, huge problem. The towel catches on everything, wheels, brakes, armrests, footrest, you name it, it will catch. No matter what system I use, I always seem to land up with damp spots, that I don’t find until I am trying to get dressed. I could ask Adam to help me, but that holds two problems. First, I don’t want Adam to be drying me and second, it’s another idea that I have fought against for years.

My wheelchair may well have removed the danger of my landing on the floor, but it has brought with it, a range, far bigger than just those I have listed, of problems that I now have to fix. If, I hadn’t stood up yesterday; walking out of total frustration; with the result that it had; quite honestly; at this point, I would be thinking of returning it to its cupboard. I need it, but it’s not making life easier, in any way I can think of. Actually, I have to take that back. I know that all I have to do is read back to the posts I wrote when I first set off on my newest form of life. It did have a huge positive impact, and I have to remember that. It isn’t so much the chair, it is life has so much clutter attached and moving in a rather large and new piece, isn’t going to be easy for anyone. If I am to tell the truth, none of us want our lives altered, by anyone or anything. Life, no matter how scary, is most enjoyable when we keep it simple. We don’t like change, and we definitely don’t like change that means, even more change, is required. I know myself, that it has more to do with attitude and desire, than reality. We see problems, that aren’t really problems at all, they’re just more change and that’s the real issue. If I can find grab rails that don’t scream hospital at me, well I could live with them. The rest is much harder, but solutions must be there somewhere, ones that aren’t just going to lead to even more problems once in place. The real problem is, is it doesn’t matter how far you try to plan into the future, when your fighting against an illness, that just doesn’t stand still. As I said, two months ago, rails weren’t required, they’re need though, is getting closer. Ouch! that has just put something into my head, something I hadn’t thought of, until this very second. Are all those problems, that I’m blaming on my chair, actually just new problems, ones that would have appeared, with or without it? Can I scream now, please, pretty please?

It’s a horrid thought that new problems will appear every two months, maybe, I’ve just reached that phase. Could my health really be moving that fast? Is that really why, I am feeling suffocated by problems? When I think about it, it kind of makes sense, but so did my first line of attack. I always knew that as time went on, that I was going to be doing more and more problem solving, just to make life livable. If I am going to remain independent, I know that life will have to change, systems revised and problems solved. Stupidly, I started putting them off. My brain is degenerating just as my body is. Much of what I am facing now, where problems that I always knew, would rear their heads, but I was doing the normal human act, of putting it off. Once, no problem phased me, in fact, I embraced them and loved them. There was nothing like a new challenge, just to keep you going. That, though, is now my main problem, being human, it has forced me into a world where mentally I am playing catch up, instead of being one step ahead, as I once always was.


Please read my blog from 2 years ago today – 18/11/2013 – Caught in nowhere to go

If I hadn’t spent so many years living with pain I think that at some point over the weekend I would have been at the local A&E department. My diaphragm is still giving me no peace, but it has made me realise just how…..

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….

A plus plus day

I have always been proud of the fact that I am Scottish and for some reason never happier than when in my own country, today I am overjoyed that I also live in Glasgow. The why is a simple one, the temperature. Glasgow has as it almost always does, side slipped the worst and/or best of the weather. With the rest of the country having warnings about high temperatures, we have just touched into the low 20’s, more than hot enough for those of us with MS. Glasgow seems to have it’s own weather, it doesn’t matter if it is summer or winter, the weather here is always different from even those just a few miles from us. I still find it hard to accept that I have lived here for over 25 years, as I was so reluctant to move to the Scottish west coast when my first husband informed me we were leaving Plymouth, the only place outside Scotland that I ever fell in love with. A handful of years later and I was single and moving voluntarily to Glasgow, a city I didn’t know at all. If anyone was to ask me how I would describe the weather in Glasgow, I would have to say it is bland. We don’t get the great snow they do just 20 miles away in the winter and the sunshine in the summer somehow is never as hot either, but I eventually did fall in love with my adopted city, even though most Glaswegian’s constantly accused me of being English, not my fault, just down to my Scottish east coast education. I doubt there is actually a better place in Scotland as far as the weather goes for someone with MS to live. None of us seems to do well when we are forced into the extremes, something that I personally haven’t put to the test since my diagnosis. Yes, we have gone through spells of weather that have knocked me flat but they never last too long.

Adam was off work yesterday as we were expecting a delivery of something that I was quite clearly not going to be able to help the driver deliver to us, a new mattress. When we bought this house money was tight and we bought a bed that we liked the look off but was cheap. I knew that meant that the mattress wasn’t going to be the best, but it really wasn’t bad. With the addition of a pressure mattress a few years ago and all the toppers that I added to make it more comfortable it continued to serve us well, but in the last couple of years I kept waking with a sore back and I knew why. After 14 years of use, the mattress had developed dips and it didn’t matter any longer how we flipped it or turned it, there was a permanent dip on every face. Those dips didn’t just leave me with a sore back in the morning, they also made it really hard to get out of bed, it had to go. I know that I have just spent one night on it, but if anyone out there is thinking their mattress is past it’s best, well don’t think about it a second longer, get a new one. The new mattress is a lot deeper than the old one, so for the first time I don’t have to drop down onto the bed, the bed is at the perfect level to just lean slightly and I am sitting on it. Lying on it was like lying on a cloud in comparison, firm but supportive where needed and getting up, no problem, half the battle I had with getting up was the pain in my back, a pain that I didn’t have this morning. The extra bonus is in the fact that I can no longer feel Adam using it as a trampoline, he can bounce all he likes, my side stays unaffected, it has to be our purchase of the year.

When I finished my blog yesterday I actually decided to talk to Adam about it as he was here and he said that he would make the calls for me and see what happened. We were both ready for them to say that they had to speak to me and I was ready to tell them that Adam had my permission to make the call for me. To both of our surprise, neither ask, they were quite happy to take instruction from him, even though it was my medications that the calls were about. I have to say that I was shocked that neither needed to know anything other than that he said he was my husband, to talk about my medications. He could have been anyone, but they accepted what he said on face value. Mind you, neither of them have what you might call a vetting system for anyone, unlike when you call the bank and they require passwords and so on, but it still felt lax in a way. The chemist was quite happy to accept that I couldn’t bear the taste of the new amitriptyline, something that I also thought might be a struggle as these days they buy the cheapest so that they can make money. I am really glad that both calls went exactly as I had hoped, it is one less thing that I need to worry about going forward as I can at least hand those administrative type of call to Adam.

When he came off the phone I thanked him for making them for me, as always he said there was nothing to thank me for, it’s part of his role to do what I can’t with ease, but I doubt that I will ever stop saying thank you. It is still something I find hard, asking Adam to do things for just isn’t getting any easier. I know that he will never say no, but willing or not, it feels like I am putting onto him more and more almost daily. Going from independent to reliant is a very hard road to walk along. We all think that we will never need anyone’s help with anything, that we will always be able to do everything for ourselves, especially silly things as small as making a phone call. I have been winding myself up about making those calls for days, pushing it further and further away from myself in some sort of mad game that might mean that they would just fix themselves. Adam has always made it clear that he will do anything that is going to make my life easier, but I honestly didn’t think that this was something he could do for me. I suppose I have to admit that I am at that point where I am better at making myself wound up and under pressure than I am at asking for the help that is right here. You would think that the care he showed for me when I was too ill to even walk anywhere by myself, that I would have learnt, but it appears I still haven’t. Those two calls though have shown me something, it is always worth a try. If I don’t feel able to do something, even something I believe I am the only one that can, it’s worth Adam at least trying as you never know what response you will get.

Read my blog from 2 years ago today – 1/07/13 – Erratic control….freaky

Adam is on holiday this week so even though he has started and not finished loads of little jobs over the past couple of days, he is now in his normal holiday position, snoring on the settee. I guess he will as always sleep through the daylight and work on until dark, for someone who complains constantly about not liking dark evening, he doesn’t exactly make the most of the long awaited summers and it’s constant……