Tag Archives: Adjusting never gets easier

Stepping into a new future

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Today is going to be a mess and for once, it’s got nothing to do with me. Two weeks ago, as we do ever Wednesday evening we were sorting out our midweek treat of one of those fancy tear and share breads. Adam lit the oven, but within seconds, it turned itself off and refused point-blank to stay alight, our 15-year-old cooker was dead. We had hoped that we would be able to buy one and have it fitted last week, as Adam was off work, so it was just easier that way, but we didn’t know the system, so we didn’t order it until Tuesday, too late for our plans. As you will have guessed, today is the day that our new one arrives and like everything else, buying it was the easy bit. Because it is gas, it can’t be fitted by just anyone, so the system is as follows, the cooker will arrive anytime from now through to 2 pm, followed shortly after, by the gas fitter. He will disconnect the old one and fit the new one, once done, the delivery van will return, to remove the old one. It all sounds so easy, but life has told me a million times, what should be easy, often isn’t. No matter how much I want to believe it will happen the way they say it will, I just don’t believe it. Add onto that, the fact I normally sleep for part of the afternoon, and well, you can see why this is a day, I just want to end, even though it has just begun.

I had actually totally forgot that it was coming today, that in itself isn’t that surprising, nor is I suppose that I had actually planned my week totally differently. I had decided on Sunday just to enjoy my day and take it all slowly. Then yesterday, I was going to get ahead with scheduling my quotes and anything else I could out of Tuesdays routine, plus have my shower, as I was planning to make my Psyllium pancakes today. Then yesterday lunchtime when Adam phoned to say he wasn’t coming home for lunch, he reminded me that the cooker would be here today. At first, I was just plain angry with myself for once again forgetting something major was happening, then I remembered the pancakes and my heart totally sank. From start to finish, they are a 5-hour job, granted nearly 3 hours of that, is just waiting for the yeast to do it job, but it still time. In the past, I would have tied myself up in knots, panicking about how I was going to fit it all in around my routine, without it all falling apart. Once off the phone and in the kitchen, I sat and checked myself, just sitting, breathing slowly and taking the time to sort it all out in my head. Once more, I was calm and relaxed about it all, I had a new plan and I was at peace with it. Even a month ago, that wouldn’t have happened. This new me, the laid back, what will happen will happen me, is odd, but somehow nice.

Of all the things that I know has made the biggest change in how I am feeling about life, was the realisation that I couldn’t control things any longer and I had to find a new way of handling everything. Yesterday proved to me that it works, until then it was mainly theory, I hadn’t had anything happen that was major enough to be sure it would work. But there I was, everything up in the air, and I was calm about it. There were no tension tears, not banging things around in the false belief that speed would make it all happen quicker, I was doing everything the right way. I am not saying that it all passed without any issue. I did at one point find my breathing all over the place and I wasn’t able to sort it out. So there I was sat on my perching stool, cooking pancakes whilst using my nebulizer. Probably not the image that most would expect in a kitchen, but it worked for me. Taking the time to just stop, to think about it and put it all into a logical fashion, and accepting that my day was just going to unfold as it did, rather than how I thought it should, made a world of a difference. I hadn’t been sure it would work as I am fighting against many ingrained habits and also brain damage, I have tried using different theories to control it in the past, but always failed. Usually, my brain can’t cope with things not being just so, not exactly the way it expected. Until now, I have never been able to calm myself, all I could do was go with it, accept that I was going to be distressed and wound up, with no escape until it decided to let me go. It was both scary and exhausting, but there was nothing that had worked before, not even systems almost identical to what I used yesterday. I can only think that it worked because of my acceptance that I can’t control anything and that life, now has to be in the hands of others.

The whole afternoon passed not as I expected, yes busy, but I still had a nap and my shower and the pancakes were done as well. As for what I normally did online, well it just stopped, and I didn’t feel stressed by it. One of the things that I have been thinking about for a long time now, is setting up something that will aid my memory, but is still mainly run by Adam. I have looked at them in the past and done nothing about it, but I know there are out there several free multi-platform calendar/planning apps. What I want, is to set up everything from ordering my prescriptions, to the next day I have to have a shower, all my hospital appointment, you name it, anything I need to be told to do, or be ready for. With it being multi-platform, it will work on my PC, Adams phone and his laptop. That way both of us can see it, add to it, check that things have been done, or not, and it should keep us both in line. I am also going to try and find one, that sends alarms as well. When I had one just on my own PC, it was too easy to ignore, lie to and basically pay no attention to at all, it was a perfect exercise in futility. If we had had one, I wouldn’t have forgotten the cooker was coming today, and Adam would have known about my plans to make my pancakes. More than that, it wouldn’t have been in that day, when I was on the phone arranging the cooker, as I would have put it there as the day, they would run out. Adam is already my memory, the person who sorts out my meds, opens all my mail and keeps me right daily. What he has to do for me, is always rising and I think things are already getting to the point, where he too, is starting to forget about some of it. Running our own life is hard enough, running someone else’s as well, well let’s be honest, it’s a lot to ask.

To my surprise, I was in the middle of the second paragraph when the doorbell rang. It was the gas engineer to uncouple the cooker, I had been told that the cooker would be here first, but apparently not. He was still testing the gas for the whole house, when it rang again, it was the cooker. All of it was happening at once, and not the way I had expected. Once they had delivered it and left with the old one, I disappeared back through here, in desperate need of normality, to be away from all the mess, people and change. Everything was happening too fast on one hand, and perfectly on the other. We’re now an hour on and peace has settled back on my home, and I have a working and perfectly beautiful, new cooker. I have made it through turmoil without landing up as a jibbering wreck. Just all the toing and froing has been enough to leave me tired, but for once, I am pleased with myself at just how well I handled it all without Adam by my side. I’m not totally calm, I’m not totally settled and peace with the world, but I am content with that, that is a minor and irritating thing, but I can handle this and I will settle back into my day. Life is good, that’s all I have to remember, life is good and I am safe, not in control, but safe and that’s what really matters and has to be my goal from now on.

Please read my blog from 2 years ago today – 27/10/2013 – Family breakdown

When the day start with the shock of touching your feet to the floor and burning pains sears through the soles and fires up through your shins, well you have to wonder what the rest of the day will bring. I know all to well that burning in the soles of your feet is a clear sign that you have nerve damage, I have over…..

Even equations lie

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It’s amazing, how when you stop just adding two and two together, to make a nice neat four and actually start looking around for the possibility, that there is another two lurking somewhere, that you actually start finding more and more of them. Unfortunately, life is seldom ever just neat little packages. There always seems to be those other strands of thought, that really should be included in the equation. Yesterday’s post really helped me to remember some of those fine lines of self-knowledge that get forgotten over time. I have often wondered if there would be any purpose in my actually going back to the start of my own blog and just reading it all, from start to finish. Part of me says that it is surely pointless, as I have lived it and written it, I know what is there. But there is another part of me, that fully realises that we all change, even in a tiny window like three years. I wonder if I did read it all, would I be surprised or disappointed by the thoughts and conclusions that I drew as I was learning to live this way? I know for sure that there is two thing that I would find. Firstly, disappointment, and amusement, at my learning process of how to write. Secondly, loads of little numbers, all waiting within my thoughts that I missed at the time, just waiting to be swept into my personal equation of life. All too often, I find myself writing when I am wrapped in pain. As you might have noticed, I don’t plan out what I am going to write about. I sit down each morning, come up with an opening line and then empty my brain onto the page. If you do that when you are in pain, the result is often filled with truths, that at the time, you simply don’t pick up on yourself. I know that both of those are true, simply because I have had cause occasionally to read a day from my past.

Despite the fact that the last month has been filled with symptoms running wild in different parts of me, my overall pain level is lower. Apart from moments of intense pain, on the whole, it has been manageable. Even the number of booster tablets I have had to take, have been not just halved, but quartered. I think that alone has added to my soul searching and inability to make sense of what has been happening to me. I know, you would think that with a clearer mind, and a body not in blinding pain, would make life easier. But when extreme pain and Morphine is your daily normality, life without them, feels vast and odd, so odd that I can’t even find the words. Even right now, when I am sat here with a diaphragm that has been in almost constant spasm for the last 48 hrs, if not longer, my pain level isn’t anywhere near where it normally is. I don’t understand it, it is so alien, that I find myself constantly questioning it. I have even found myself prodding at it, trying to trigger normality, but lightly because I don’t really want it back. Just a handful of weeks ago, I was considering phoning the doctor, with a request to raise my control Morphine dose. I was taking so many boosters, that I could only conclude that my twice daily dose of 70mg just wasn’t high enough. Now, I am quite content with them just as they are. The only thing that has changed in the same period of time, is the introduction of my wheelchair, the thief of my legs, and my new lung meds. One, or a combination of them together, has made a huge improvement in my life, but I am completely screwed up by it.

I remember writing a post a long time ago, where I posed a question about suddenly being cured and how I would cope with such a possibility. Clearly, on the surface, it sounds like a wonderful thing and those who have never been iller than a cold, would expect that I would step outside straight away and go and get a job. That is a shallow conclusion. I know for me, without a doubt that being cured, would be just as traumatic as being diagnosed, and a lot of people agreed with me. With a little considered thought, I am sure you will understand why. In some ways, this change in my life is contained in that same thought patterns. Losing the use of my legs is huge, even though they filled my life with danger in every step and I lived my life stressed by it. The fact still remains, we have legs to walk, I have legs for what purpose, two or three steps in safe areas, to complete my transition from one place to another. That’s not legs, that’s an aid. I might have walked nowhere other than around my flat, but I walked. Now, I don’t and that is emotionally painful. As I concluded yesterday, that is a reason to grieve.

So here I am safe, on wheels that I am at one with. That carry me everywhere I want to go, without banging into anything and have given me a new lease of life and freedom. That has reduced my pain levels in my legs, reduced my fatigue levels and seems to be a boon in every regard. Yet, I am still grieving my loss. If you still don’t understand, think of it this way. It’s like buying two puppies and one dies. No matter how much you still love and enjoy the one that lives, you will grieve for the one that died. This is just the same, but I haven’t lost a puppy, I have lost half my body. In the midst of that pain, I have a two huge improvement in my life. First, my chair, but second are the new drugs for my lungs. I actually didn’t think of that one until today. They are keeping my lungs more open. It is only when my PRMS throws one of it’s mad fits and clamps my lungs tightly, that I now find air hard to find. When they are milder, I can feel a change, I can get more air without having to fight with them in the way I did. There also used to be spells when oxygen felt reduced, I can only guess they were caused by smaller deeper and more internal spasms, where pain isn’t registered the same. Although still there, I don’t seem to have so many unaccountable spells of feeling short of oxygen for no reason. One of the inhalers that I use is a steroid. I know there are loads of different steroids and they don’t all do the same, but I can’t help but wonder, if that is somehow helping not just my lungs, but my PRMS in general. Steroids are one of the drugs used when I have a bad flare, it’s just a thought.

Yesterday, I added two and two and it equalled four. Today, I have added and added to that equation, as I said, life doesn’t happen in neat packages, there is always more to it. I am sure, that I if I sat and thought about it for longer, I would add more and more, but they would truly be small and would have nothing like the impact of the others. My normality, has been challenged, ripped apart and left in pieces, no matter how much better life is, when it is so different that it doesn’t even feel like your life, you will be left wanting answers. Questions, have one odd habit, instead of giving you just a goal to head for, they are like rabbits, constantly breeding. You deal with one and another is bound to pop up. I think if I did read my entire blog from the start, that too would be the result, so many questions that I didn’t really answer at the time and disbelief, at some of the ones that I did.

Please read my blog from 2 years ago today – 15/10/2013 – Taking the dream

You can sit all day, wondering and dreaming about what will never be, but it never really gets you anywhere, as dreams come in different shapes and sizes. I even once believed Adam’s dream that a cure would be found….

Week five: It’s not over

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If there is one truth that can’t be escaped, it is the fact that there are as many right ways to live, as there are people on this planet. We all like to think that we have got it right, that we are the ones who can show other the way to be happy, but the truth is, none of us can. When it comes down to it, we are the only people who have both the right, and the understanding required, to know what is right for us. So why is it, that every day millions scour magazines, websites and TV channels, for that ultimate piece of wisdom, that one must have item, or that perfect person, who will make our lives better, if not forever, at least for today? If we were content in our lives, we wouldn’t keep searching in the hope that there is something out there, that we just have to find, and our lives will be perfect. It’s a fact that one group of people have made a living out of for the last century, the marketing men, they know our self-doubt and they play on it constantly. The more that they exploit that discontent, the more they make it grow, creating the perfect circle that keeps them in work. They, though, are the last people that we should listen to because if we are discontent with our lives, it is only us that can fix it and that takes a huge amount of trust.

When I was first diagnosed with PRMS, I went through all that normal things that I believe is all part of accepting what is happening to us. It is without a doubt, one of the hardest thing to go through. Our entire lives have just had the rug pulled out from under us, and rather than landing on the floor, we are like “Alice in Wonderland”, falling and falling and falling, with no idea when or where the bottom of that hole is. We grab at all those roots sticking out of the sides, at all the objects that we pass, the occasional one, appears to slow us for a while. All too often, they fail and we go on free falling and searching. Eventually, as time passes, we learn enough to slow our speed down to more of a float than a fall, but floating in space, isn’t an answer to the millions of questions no one has the answers to. I believe it is at that point that our future is really written, we either accept totally blindly, that there are no answers, that this is our life and we had better get on with it and live, or we fall apart. Blind trust isn’t something we as humans are trained to do, in fact, we are brought up to do the total opposite. We’re taught that everything has to have an answer, that all illness has a cure and that doctors are gods. That if we just demand enough, complain loudly enough, research and demand again, we will get better. They lied to us. But if you can accept that, and then take that leap of faith, to put your trust in nothing, and no one greater than yourself, well, you’re still not going to get better, but you can have a good life and you can stop both floating around and better still, falling.

It goes back to my opening lines, ” there are as many right ways to live, as there are people on this planet” and that isn’t changed by health. Actually, I think our chronic health, makes it even more true. Like it or not, society sees us as a subsection, not quite like them, but regardless of that, we should still fit into the plug hole created for us. You can hit yourself over the head with a mallet forever, once you have a chronic illness, you will never fit, ever, again. Society, quite wrongly, puts health quite far down on the list of important things required to be seen as a successful human. We judge ourselves by our looks, our brains, our personalities, our earning abilities, our social acceptance, social standing and our likeability, not all in that order, but all more important than health. Wrong, because without health, all of those fall apart. As we were falling all those things bit by bit were being blown away be the updraft, we may not have seen it at first, but eventually, we can’t help but have to. Keep falling and you fall into another endless pit, the one of depression, make that leap of faith and decide to trust yourself, to build your own life, your own standards, and your own understanding of self, and you stand a chance of living well, despite it all.

For me, one of the things I had to get through to my pig-headed self was that there was nothing, I can control nothing and there were no battles that I can win. I didn’t possess the power to change anything, it was all going to happen just the way it wanted, regardless of what I did. Friends left, work left, money left, health left, mobility left, looks faded, weight went on and the outside door, closed forever. I couldn’t change a single thing, or control even a single hair on my own head. The only thing I could do was live and that had to be my starting point. Not much to build from you might think, but it was the only thing I had, that hadn’t left, that I had true control over. We all have that ultimate power, to decide if we live or die, it’s the only thing, that once you have had what feels like everything stripped away from you, that is left and is ultimately the only thing we ever have true control over. It took me three years of being housebound, to realise that I had to stop looking outwards for the answers and I had to start looking inwards. If we are going to be happy, if we are going to have a life that means something to us first and other secondly, then inside is where we all have to look. It’s not always pleasant and it’s often almost impossible when your fighting with a body that does what it wants whenever it feels like it, but inside us, is where we find the true us, our true desires, needs, wants and goals.

Recently, I had forgotten all of that, I had let myself be beguiled by all those baubles of life that none of us really need, the things other think we want. I had let myself question what was happening to me and where the answers were to making it all go away. It couldn’t be made to go away 14 years ago when it was diagnosed, it isn’t going to be made to go away now. I can’t get back those who are gone, or the things that I lost. After 5 years of stability, I was falling again and life was out of control. I can see clearly now what through everything out of kilter, why I wanted so badly to make things change and it was all my own fault. I stupidly thought that accepting the loss of being able to walk was as simple as sitting down on my wheelchair. I didn’t think that I had to do anything else other than that, after all, I had done it before. Because I didn’t take the time to go through all those steps of loss, and just leapfrog over them all, what I did was open a huge gash and blood was flowing out in all directions. My attempts to patch it were feeble and ineffectual, I was in denial of the fact I was grieving. When you grieve, you don’t just grieve for what you have just lost, you also open all the grief you have ever felt, in the past.

Every step that our health takes, even when like this one, we know it is written there in our future just waiting for us, still hurts. I thought I had learnt that lesson, that I was passed all that stupid stiff upper lip rubbish. It has its place in front of other, but to ourselves, never. I need to look inside, to myself and to live my life, not the lives of others. I have to accept again and to rebuild around what has happened. Just being able to make my way around the house without bumping into things, is learnt skill, it’s not acceptance. Enjoying being able to do things for me again is a bauble, not acceptance. Finding pleasure in just sitting quietly enjoying a meal I made and a break from sitting here at my PC, is emotion, not acceptance. There is no comparison, nothing that can even bring them into the same sentence. My legs are never going to carry me more than a few steps ever again, fact. Easy to say, even easier to type, hard, really hard to accept. But I have to and I have to do it fully, without brushing any of it under the carpet and hope that it will somehow stay there.

Please read my blog from 2 years ago today – 14/10/2013 – The truth of what life requires

Another week of who knows what? I know that logic says that if you are housebound and ill that everyday should really be like all the rest, but it never really is. I thought when I was no longer working that I would find it impossible to…..

Facing the facts

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I realised after I had completed yesterday post that I hadn’t mentioned what the Doctor had to say, eventually, about my mole. I phoned on Wednesday afternoon and luckily didn’t get the somewhat moody receptionist who I have mentioned in the past. It was to her email account that I had sent the photo’s. I did actually call back on Monday afternoon to check she had received it, as I had heard nothing. The receptionist who answered the phone had to check but then confirmed that it had arrived. By luck on Wednesday when I called back, my Dr was free to talk to me. He was apologetic, as he had asked that an email was sent to me, to let me know that he thought there was nothing to worry about. Because of the fact that it had changed, he wanted the hospital Dermatologist to check it out and had requested an appointment for me. All of which he said had happened on Monday morning, so when I phoned on Monday afternoon, she could have passed that message on to me, or taken the hint that I was seeking an answer of some sort and sent out the email as she had been told to. I had half expected the doctors response and that I would once more be on my way to the hospital to see yet another consultant. So, it’s just a matter of waiting for an appointment to eventually arrive.

When Adam was home for lunch yesterday, he mentioned that he had requested to have next Tuesday off. I couldn’t for the life of me think why he wanted such an odd day off work. After all, taking the odd Monday or Friday, allows a long weekend, but a single Tuesday is just odd. As far as I could remember there wasn’t a reason why he would want to be at home that day, but with my memory, well there might just have been. He said that it was so he was here for the appointment with the MS nurse. He thought that I might like some support when he came to see me, which was really nice, but he was coming to see me next Monday, not Tuesday, well that was what I thought. It is, in fact, another good reason why Adam normally opens all my mail or at the least reads it. I had got the wrong date in my head, it’s the 22nd, not the 21st. He also thought that it might be a good idea for him to meet one of them so that there is a note on their records that he is now quite clearly my carer. Hopefully, that will make things easier going forwards as they will at least know who he is if he needs to contact them on my behalf. I know he is right, just as it’s right that he now attends all my hospital appointments with me, but somehow someone coming to the house felt different. It took me a few minutes to get it all straight in my head and I worked out why I felt the response that I did. The flat is my domain, I am so used to the idea that this is my world and that I can cope within it, that I hadn’t even thought about the fact that this was an outsider, someone who is as likely to confuse me as many medical people do.

Every time that the MS nurses arrive, they start their visit with a questionnaire that covers all the basic things. Am I still able to dress myself? Can I prepare my own meals? How am I coping with my medication? Can I still wash myself? The list goes on and on, but for the first time in years, my answers are going to be so different. I hadn’t put that much thought into the time scale over which the most recent changes in my health had happened. Thinking about it has made me realise just how stark those changes are and how quickly they have all really happened. Our last meeting was just a year ago and it is like chalk and cheese, I have at last reached the point that not including his love and emotional caring, as I said the other day, without Adam, I wouldn’t any longer be able to cope at all. I don’t think that I have ever actually written or said that before, but it’s totally true, in one year I have gone from independent to reliant and it’s a fact that can’t be ignored. I guess that I have been playing games with myself, tricking myself by skirting around the actual facts and it is all too easy to do. Saying to myself that I have lost my independence and saying that I can’t cope are two totally different things, and their psychological impact doesn’t compare at all either. That is the equal beauty of our language and a huge danger zone for those of us dealing with medical issues of any sort.

Fact, there is always a nice soft cuddly word that sounds similar to those nasty spiky ones that none of us wants to use. It is too easy to sit here and make it sound as though there is nothing really that wrong with us when the truth is the opposite. There is also a huge difference between deluding ourselves and misleading our medics, the second could actually be deadly. As long as we are hiding the truth from ourselves, how on earth are we going to get the treatment and care that we need and probably deserve. Two days ago I sat here analysing my loss of independence. I wrote a whole post about it as though what I was talking about was being unable to change a light bulb, I just didn’t want to face the truth. It has all come to ahead simply because of my wheelchair, but that is now clearly just another symptom, it wasn’t the answer I was hoping for. Somewhere in the back of my head, I had this picture of sitting down over those wheels and the world would suddenly become shiny and new again. It wasn’t, and I have to admit that even an electric chair isn’t going to have that effect either. It will make life so much easier, but it isn’t going to give me back either my independence or my health, or make it possible for me to cope with life by myself. No matter what aids or gadgets we acquire, I am never going to be able to cope with normal everyday life again, fact.

It has never been my wish that Adam should leave me, but my measure has been for so much of my life, thanks to my first husband, “Can I really manage on my own?” Being able to answer “Yes” to that question was so important to me, that it has remained with me right through the last 26 years. Until the last 6 months, I was still able to answer it with a “Yes”, well there were a couple of tiny issues, like emptying the bins, but I was sure I would find a way around them. But for the bulk of everyday life, it was “Yes”, now it’s a “No”. I have been fooling myself in the last few months, no, “lying” is actually the correct spiky word and the true one. I was lying to myself, as the truth was just too painful for me, but I don’t have a choice any longer. I have become that person who has to be cared for, as without it, very quickly I would die. How long would it be before I took the wrong drugs at the wrong time? How long before I developed an infection because I hadn’t been taking care of myself, by washing and showering without someone to make sure that I did? How many important appointments would I miss? How would I manage having to speak on the phone on my bad days? How could I cope with dealing with people, without floods of tears or confusion? How could I clean the house? Do the washing? Sort out the shopping I can’t even lift? How would I just deal with everyday life? The answer to all of those and many more is always now in the negative and my need to no longer be on legs that don’t carry me, has just made every single one of them harder. I can’t cope on my own, full stop.

So I have said it! I have admitted it! Does that mean I accept it? Not quite yet, but I am getting there. Well, I hadn’t admitted any of it until in the last few minutes, it will take longer than that. Pouring my mind out onto the screen may be my way of writing, but it has a downside. I can’t control my brain and it often exposes things here first, then gives me the task of dealing with it. Yep, I hate my brain!

Please read my blog from 2 years ago today – 18/09/2013 – Professional patient

I took my first boosting 10mg morphine tablet, the pain in my ribs was really bad and yet again finding peace to just sit and watch TV just wasn’t there, so I took one. I couldn’t believe not just how well they worked but also the fact they worked really, really quickly! I don’t believe that I have…..

Faced with reality

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I found myself in tears yesterday afternoon, not because of the nebulizer, but because of the chemist. We had for the last few months handed over the job of ordering, picking up the prescription and delivering to our house of my repeat meds, to our local chemist. It had been working fine until this week when on Sunday, Adam who dishes out all the meds for me, announced that I had no more 60mg MST, which is my main painkiller otherwise called Morphine. There was just enough for him to put out my dose for Monday morning, but that was it. Clearly there was something wrong, but with it being Sunday, there was nothing we could do then. The plan was for him to phone the chemist before the ambulance arrived to take me for my appointment, or while we were waiting at the hospital, just to be sure they were delivering on Monday afternoon. When he did, it turned out they hadn’t even ordered them. Something had gone wrong and the note to order on their system just wasn’t there. He quickly phoned the doctor surgery and ordered it, then phoned the chemist to say they were there to pick up. I knew we would still have a problem as the chemist only picks up prescriptions in the morning and my Dr system. meant it wouldn’t be ready until the afternoon. There was one saving grace, I had a small stock of 10mg MST and there was enough to cover two doses. As is often the case it was Adam who reacted immediately by tying himself up in stress, I just stepped through it, accepting what had happened and tried to calm him down. He was rushing back and forward checking to see if the ambulance was there and muttering down the phone at different people trying to get everything sorted so that I didn’t have to swallow 6 x 10 mg tablets, which he wouldn’t accept wasn’t a problem.

Yesterday morning the phone rang and I was surprised to see that it was my GP, he was calling as he had received the letter about the new meds the consultant had ordered and just wanted to be sure that they had supplied the nebulizer. My brain being what it is, didn’t think about they way the prescription was going to get to me, if I didn’t do anything, the doctor would post it to me and I wanted it quicker than that. So I called the surgery and arrange for them to hold it so the chemist could pick it up on Wednesday. This, of course, meant I had to phone the chemist. I double-checked with them that my meds would be with me today and at that point I got a rather snooty response. In fact, I got the impression that they thought I was being difficult, that was when the first tear appeared. There is nothing I can do about it, when my emotions are spiked, be it by anger or anything else, thanks to the munching monster, I cry. It’s one of the reasons that I don’t normally deal with anyone on the phone, I only did it this time for speed as Adam was at work. There is something very embarrassing about finding yourself blubbing to a complete stranger who doesn’t have the slightest clue about the damage your health has done to your brain. I remember saying “hold on none of this is my fault. You were supposed to have ordered my meds and you didn’t!” There was a sudden change in attitude and she said that she would look into it and call me back and tried very quickly to cut the call and hang up.

Once those tears found their exit, they were off. I sat here for about twenty minutes, telling them to stop, blotting them off my face and trying all over again to get control of myself. My anger had to settle before that could happen, plus I think there was a large dose of yesterday lurking in there as well. Two stroppy people in 24 hours were just too much for me, I guess that I had been wrong in holding them back yesterday. The stress of the last few days had caught up with me and tears seemed be my bodies answer to it. I know all too well that sometimes the best thing you can do is cry, but I also know that to keep crying achieves nothing. I have to say, though, I did feel better in some ways. Oddly, one of the things I noticed was I didn’t feel so tired, I couldn’t work that one out for the life of me. Don’t get me wrong I didn’t suddenly feel invigorated, just that little bit brighter.

I did later in the afternoon received a call from the chemist, although there wasn’t the direct apology that I would have liked, they were both courteous and friendly and assured me that the meds would be delivered later, with a balance to follow tomorrow. I am glad though that I double-checked what they had there, as I was sure that the new meds prescription wasn’t going to be there. Earlier I had explained that the doctor had just written it five minutes before I called, yet they still tried to tell me that they might have it. They will pick it up in the morning and deliver it tomorrow along with the balance of my other meds. Part of their call was also about one of the meds that they did have the prescriptions for, oddly I had two prescriptions for two different types of calcium. I, couldn’t work it out so they sent both to me with the rest so that I could look at them and pick the correct one. When I saw them I realised that there was only one month of each and my prescriptions are for two months at a time. I, couldn’t understand it at all and of course, yesterday was Tuesday, my doctors are closed in the afternoon, so there was nothing I could even do about it. By that point, my head was buzzing and the word drugs simply made me want to scream. All the pressure about getting these things ordered and delivered was exactly what I wanted rid of, this delivery has been a total nightmare and I was totally fed-up with the whole thing.

Adam and I had already decided that this system just wasn’t working for us at all. What we are going to do going forward is that Adam will arrange the prescription then tell them that it will be ready to be picked up the next day. Hopefully, that way will get rid of all of this. It is so easy for doctors to say take this, and this, and this, and to keep on adding and adding. Once you land up like me with a list that fills three carrier bags for so many different conditions, it just becomes an ever growing nightmare. Twice a day going forward I am going to be faced with sitting down to take a collection of tablets and liquids, followed by inhalers and then the nebulizer. It isn’t just swallowing a few pills any longer, it is a process, a part of my day and now Adams, where there is no focus other than my health and somehow that focus now feels negative. Yes, I know all of this stuff is to help me, to make me feel better and that should be positive. I see that, but that doesn’t make me feel it. It just makes me feel even more taken over by the whole process of caring for these things that live within me. The simplicity of just living, of being what I would call a normal person is being stolen from me. I know that getting the wheelchair out is my idea, it the only option open to me, I have to be able to get around the flat in safety. Finding myself suddenly attached to equipment, tied to inhalers and machines to keep me going is mentally chipping away at me and I haven’t even started living that way yet, but it hours away, not weeks.

I can’t even compare it to anything I have been through in the past, as I have never felt this way. I loved my wheelchair when I was using it to keep me in the outside world. I have swallowed my body weight multiple times in tablets and I even spent three years attached to a gastric nasal tube and it’s pump. All of them were a breeze as I still felt reasonably healthy. There was a clear positive to all of them, even before any of them started and they were still in the planning stage, I felt good about them. So much has changed in the last few years, things that you don’t really notice on a day by day view, it takes being able to see things in a longer perspective. Right now I am no longer physically strong. There is this general weakness that fills me all the time, but as I have already said, it goes deeper, right into those muscles that no longer have the strength to hold me. I feel as though I am fading and that added to the new drugs regime, well, it’s affect has just thrown me off balance in every way. I guess that I am just feeling the truth that my health has finally taken over everything and somehow, I have been ignoring that fact. Well, I am awake to it now.

Being housebound and not seeing others who have the habit of spotting those things that have changed, you actually live in a bubble. I have been here 8 years and in that time, yes there have been changes that I have written about. Problems that I have faced and got through, but other than that initial diagnosis of COPD 2 years ago, nothing feels as though it has changed that much. I know I am weaker, that I am not capable of doing everyday things like reading my mail, dealing with the outside world, or even getting me own medications right, but somehow I still felt like it was my life and my body. This working towards getting things ready so that I can use my wheelchair and this stupid nebulizer has woken me up to the reality. This isn’t the body I called mine, how can it be, it isn’t capable of anything on its own any longer. It can stand, walk, process food or even breath without intervention. That isn’t my body! I was always fiercely independent, look at me now. All I can do for myself is to sleep or sit here, that isn’t me. I have woken up to the changes that I had missed, not processed or simply ignored. 8 years of change is a huge amount to catch up with and a huge adjustment to make. I know I can do it and that I will, but I need a little space to do so, a little time and a little understanding. I’m human, not a machine and I occasionally have to actually act like a human. I guess that this is one of those occasions.

Please read my blog from 2 years ago today – 09/09/2013 – Searching for life

There is never a simple answer to anything once you are either past that certain age, or you are no longer fit for purpose. I remember clearly when I was in my early teens thinking this would never happen to me, I was never going to be…….