Step by step

Posted on May 29, 2016 by livinginalimitedword

Taking time out from blogging is starting to open up my life again. There has been a list of things waiting to be done, that I just didn’t have the energy to do. The other day, I started work again on what now feels like a long ago dreamed up list of the things that I need to know to put my mind at rest, when it comes to the subject, of my future. The other week I had broached the subject with Adam, about getting in contact with Social Services in regard as to what help they can and can’t give us. I did write about it, but it took a second discussion and my finding both the email address and phone number, before Adam contact them, at the beginning of this last week. Several phone calls later, and we have managed to arrange for someone, to come here and talk to us. Someone will be coming out to see us, at the end of next week, which just proves what I suspected, nothing happens as quickly as we want. If we had waited until it was to us an emergency situation, we would have been struggling for weeks. The next on the list, well it was, of course, sorting out the issues with the grave that I thought I owned in Aberdeen. Somehow, when my son died, the documents for the actual plot, landed up in my ex-husband’s name. To my surprise and delight, when my daughter took the documents to him, he too was shocked and signed all the papers needed, for the name change to take place. The next step would be really simple for most, but not for me. I had to make a phone call. This time, I knew that it had to be something that I did, and not something I could hand over to Adam.

Despite all of the undeniable facts, that I am heading rapidly in a downwards direction, Adam is still finding doing anything that is connected to my death, extremely hard to deal with. I didn’t need to talk to him about that fact, so I knew that regardless how I hate the phone, I had to make this call. I have to admit, that it wasn’t just this dragging exhaustion, that was stopping me, but also the fact that I somehow had to talk to a stranger, and worse still, one I couldn’t see. Without a doubt, it had to be done on a good day, even then, I knew that I was going to have to work up to the point, when I could actually lift the receiver, and dial the number. I tried a couple of times last week but just couldn’t do it. I just knew they were days when things weren’t as good as they should be, so I waited. I know that might sound pathetic to many of you, but it really is something that is that difficult, for me to do. I eventually managed it on Wednesday afternoon. It lasted no more than five minutes, but I was so glad to hang up and take a breath equal to the one I took before I committed myself to action. They hadn’t mentioned it when I phoned to get the forms, a conversation that found me in tears within seconds of saying “Hello”, but still I wasn’t that surprised to discover there would be a charge of £34 to redo the documents. I actually made it right through the call without a single tear, just a lot of stuttering. I actually can’t remember when I last wrote a cheque, but fortunately, I had had the foresight to put my chequebook where I could and can still see it. Which proves I do have a brain occasionally.

Adam took all the paperwork with him when he went to work, so he could post it for me. That evening, when we were just sat watching TV, he turned around to me and said, “I was thinking when I was at the post office, how weird life is. Just 16 years ago, we were happily living in our first flat together, and there I was posting off documents that referred to your funeral. How has this happened? No one should be arranging their wife’s funeral while she is still very alive.” I thought for one horrible moment that he was unhappy about what I was doing, but it turned out that it wasn’t that close, it was more a case of no matter when it just wasn’t right. As I said to him, though, you just need to watch the TV adverts to see that these days, people are planning and paying for their own funeral all the time, it is becoming more the norm, just as it should be.

Quite rightly, both of us actually still find it a hard subject to talk about freely. We do when circumstance brings the subject up, but it’s not a regular topic of conversation. Like most things, though, the more we do, the easier it seems to get. but no one wants to think about the actual event and all the stuff that surrounds it, it still feels a little like talking about it, means that we want it to happen, which of course, we don’t. I know that when I sit here writing about it, it does read as though I am totally at ease with all of it. I am no more at ease with it, than you are about your own death, it’s just I am the type of person who wants to remove all the added stresses of my death, from Adam. I will never remove the pain he will feel, but if I can make the rest easier for him, then I will. Death is a fact, and it does have to be discussed and I clearly believe that things have to be organised and arranged in advance. If I hadn’t started looking into it a couple of months ago, we wouldn’t have had a single clue, that my son’s grave was in my ex’s name. If that hadn’t been discovered until after I died, it would have caused huge issues. Once I have the documents all correct and legal to use, the next step is to once again, contact the funeral directors, and get it all signed and sealed ready for the date it will be needed.

There is for me a strange comfort in getting all of this organised now. I’m not looking forward to the meeting with Social Services, but it has to be done. We both need to know what they can and can’t do for us, and even just getting the first contact in place, so when things get worse, they are there, no hassle, no assessments, just hopefully a phone call and life will go on. Once that one is done, the next and final one on my list is to contact the hospice here in Glasgow and talk to them about their possible role in my life. Thing are moving slowly, but they are now moving.

Please read my blog from 2 years ago today – 29/05/2014 – Out of Control

Another drug is now being prescribed for MS in the UK and once again I have received several really thoughtful tweets from people to let me know about it. I actually had for once beaten them to it as someone mentioned it months ago, of course, I checked it out straight away, only to be once more disappointed as it is for the treatment of relapse-remitting MS and of no use to me at all. Sometimes it nice……

We’re so together

Posted on February 16, 2016 by livinginalimitedword

I have just spent a wonderful thirty-six hours with my daughter. It was so good to just have her here again, as it has to be just over a year since we last saw each other. In fact, it was the best visit we have shared in years. Normally when she comes up to Scotland, she stays with her step-brothers and spend the bulk of her time with her friends in the town they all lived, in before her dad took her to New Zealand. Reading that back, it sounds terrible, it’s not meant to, I am in no way what so ever complaining. We don’t have anywhere for her and her husband to stay in our flat, it is just too small. I fully understand that she also wants to spend time with her brothers and to catch up with her school friends. This visit was all for us. I so appreciate the fact that she both took the time, not to mention the money, to actually stay in Glasgow. Instead of being here for about 4 or 5 hours, they arrived here at our home Sunday at 10 am and stayed until just before 8:30 pm, returning again this morning, leaving with just enough time, to reach their flight home this afternoon.

Sunday was a day of laughter, memories and catching up. The two of us always have so many things to say, so much to share. That mother-daughter bond has never changed, it’s so unlike the relationship that I have with my mother. The second we are in the same room, it’s like we have never been apart. I always feel sorry for both Adam and John. They hover around the edges of our conversation, being permitted to add the odd comment or word, then we remember they are there and draw them back in for a while, before once more, slipping away into our own world. As is always the way when I have more than just Adam to talk to, my brain doesn’t really know how to cope, almost every fifth word, was either stuttered, stammered or forgotten before it reached my lips. Yet, they listened and waited for me to get there, unless, I made it clear that I was totally lost and needed rescuing.

It was the day, for chit-chat, the day to tell tales, to embarrass each other and to be a family. It was sheer bliss, even when it was mixed with my attempts to cook meals. Brunch turned out just as I wanted, the deforested smoke salmon, leftover from Christmas surrounded for once, by perfectly scrambled eggs and croissant, oh, and burnt fingers. Which is the standard accompaniment to anything, that has to go anywhere near a stove. Dinner was simpler, and if I’m honest, nearly totally cooked by Adam, and he did it all really well. He managed, this time, to keep my fingers nowhere near the stove. No expensive takeaway, no interruptions with ordering, delivery and all the fuss that normally takes over when they are here. From here on in, on all visits that follow, home cooking, is definitely, the way to go, somehow, it completed the feeling of a true family bond. Good food, good wine, good conversation, what more did we need to bond us all as a family again. It was just as perfect as I hoped, and by the end, I was just as tired as I knew I would be. Sleep was much needed and for that reason, most welcome.

I knew that today would be different, that it was going to be a day of tears and heartfelt discussion. Adam was at work and John, well poor John sat on the small settee alone, playing with his phone. I always new smartphones had a purpose, he played his role of constant silent strength, perfectly. We all knew that I had to broach the subject, that we had to discuss the forms that she is taking to her father, to have Jeffery’s grave deeds, transferred over to me. We also knew, that, they would be the springboard for the much-required conversation about my remaining years and of course, my death.

Although she hadn’t said it, both Adam and I had worked out that her visit had been prompted by everything I had written, about my plans for the future over the last few weeks. We were right. It had dawned on her that time is becoming limited and that what time we can spend together is precious. I did my best to put her mind at rest, that I totally understood that she has a life, a very busy life, and I didn’t want her to miss a second of it. She is right now in the throws of changing jobs and her now role, will be mega busy and so good for her. She’ll be jetting all over the place, and will have so many things, that will keep her away from her husband, that when they can be together, that’s what they must be. We are so alike that not only did I know why she was here, I also knew, that she would totally understand my need to know what my options are and what my future will hold, and how I want it all organised now. Yes, we hugged and yes, we got through a large number of tissues, as we are like any other two humans who love each other deeply. Death is a painful subject, but it isn’t something any of us can hide from, or should hide from. I think we talked through all my decisions, what I need to find out about, and how I want everything written down, before any of it happens. It is so good to know she not only approved of what I am doing but, is also totally behind me and willing to help me in any way that she can. I didn’t have a single doubt it would be any different, but, I so needed to have her sat here, listening, holding me and understanding my words.

Adam’s timing to come home for lunch, couldn’t have been any better. It was just after 12 and I was struggling to change the subject. It wasn’t that I couldn’t have spoken about so much more, but, it felt like this was the right time, to move on. We both need space, a little time to absorb and to accept that our relationship is coming to an end. As I said, I know that I could hit a plateau, that there is a chance we could still be together 5 or 10 years from now, but, I’m not going to be here for long. I am very aware that things right now are moving, that now is the time to organise, as a flare could end this all tomorrow. If we had more time, if she didn’t live in London and me in Glasgow, things might be so different, but life is as it is. In a few days, we can talk again, as in a few days, the strength that we share, will return and our lives will go on. Right now, our emotions are still open and raw. Adam’s arrival brought us back to the now, and within minutes, we had rediscovered our laughter.

Yesterday, even once she was gone, I spent the rest of the day, still shedding the odd tear, and although I couldn’t see her, I kind of knew, she to was racked with emotions, slowly finding herself again, returning to the strong independent woman she’s always been.

Please read my blog from 2 years ago today – 16/02/2014 – Adding the years

All I could feel and hear was my pulse, it was thumping as though I had just run a mile, but I was lying in my bed trying to sleep. My head was on leaning slightly to my right and the entire right-hand side of my head was…..

How could she?

Posted on February 6, 2016 by livinginalimitedword

I opened an envelope yesterday that shattered something I have held onto for over 30 years, a promise I made to my son. I sat here with tears flowing down my face and an anger like none I have felt for years. Yet again, my Mother has screwed up my life, and I haven’t even seen her for 15 years. That woman has spent her entire life either judging me by rules no one would understand, or by doing things that make no sense. I had asked Adam to fetch from the chest by the TV, all my papers, which have all been stored in one large brown envelope. It contains everything about me, from my birth certificate, my scattered qualifications, right through to my divorce papers from my first marriage. Amongst them, I knew there was an envelope that contained the deeds to my son, Jefferys’ grave. I needed all the details so that I could finalise my plans for my own funeral. When Jeffery died, my Mother bought the plot for us, as we quite simply couldn’t afford to, when she did, she handed the papers to me and said that it was in my name, for our future use. I had no reason to ever look at it from then, until now. In fact, the only time I gave any thought to it was when I got divorced. My ex and I discussed it and as my Mother had paid for it, and I intended to be buried in Aberdeen with Jeffery, unlike my ex who had no other connection to the city, and with our joint belief that the grave was in my name, no we didn’t open the envelope and read them, well I logically took the deeds with me. When I opened the envelope yesterday, I couldn’t believe my eyes, what I saw there wasn’t my name, but my ex-husbands. There it was in black and white, the end to my promise, and my choice.

It took me several minutes to compose myself and to start thinking logically about it all. There had to be an answer, and I simply had to think it through rather than react. I phoned Aberdeen City Council, the people who issue the deeds. They confirmed what I thought, either he has to sign them over to me, or if he won’t, them to give me permission to have my ashes interned there and a small stone erected. Either way, he has to sign one of two forms, which are in the post to me now. I haven’t spoken to my ex since I tracked him and my daughter, who he had taken without my permission to Auckland in New Zealand to live. Clearly, we aren’t on the best of terms. By chance, they are now both back here in the UK, through very different routes. Despite what he did to Teressa over the years, she chose a few years ago to rebuild their relationship. I have done the only thing I can, I have asked her to talk to her Dad and hopefully get the papers signed over to me. On one level, I can see no reason why he shouldn’t, but on an another, I fear he will simply demand that I send the deeds to him. He knows very well how to be mentally cruel and although Teressa seems positive about the outcome, I can’t be so sure.

It is amazing how one small action, so many years ago could have such an impact. The more I stopped and really thought about it, the more I realised that my Mother, although divorced herself, put his name on it, not out of any misplaced trust, more out of traditional values. One that said, he was my husband for life. When she did it, she couldn’t see what the truth of our relationship was, or how it would end. It just annoys me that once again, she is managing to tear away at my life. Since I married Adam, she more or less cut me out of her life. We had some contact by phone for a few years, then when I became ill, it slowly tailed off. When she became ill, my brother never even told me, it was after months of hearing nothing, that I eventually made contact with him, to hear she was in the hospital, about to moved to a care home. Despite promising to keep me in the loop, it took until this Christmas, 2 years on, for me to even find out where she is. Clearly, I am not wanted as part of anything now, any more than I have been for the bulk of my life. I am fed up of being seen as her “duty”, rather than her daughter.

So now my plans are in the hands of Teressa, it will be up to her skills of persuasion for me to be able to carry out what I always believed was a foregone conclusion. It just shows you how one tiny action, taken many years before, can screw up your future. Oddly, I remember when I left my first husband, my Mother actually asked me if I had the deeds in my possession. Surely, that would have been the perfect opportunity to tell me what she had done. Just having something in your possession, isn’t enough in the eyes of the law, it’s down to true ownership, not possession, despite the nine tenth theory.

I could really have done without all of this. I was feeling bad enough before I opened that damned envelope. It is yet more proof that stress isn’t something that does anyone any good. On the good side, I also opened another envelope yesterday, well rather Adam did. I now have in my possession, my DNR papers, and these papers, do have my name on then and are signed and ratified by my doctor. Just as the old one that I had, it has a time limit of five years. The only thing that the law change has brought about, as far as I can see, is a standardised form, and the fact that it doesn’t need an outside witness, and that the form stays with me. I don’t know if it is normal, but Adam has agreed with me that it might be an idea when I am next at the hospital for an appointment with one of my consultants, that we ask about it being added to my hospital records. I know it’s a belt and braces approach, but I really have no desire for anyone to be bouncing up and down on my chest, or having high voltage electricity coursing through me, I’d rather go peacefully.

I think I had been awake today for less than ten minutes when I was again aware of being exhausted. This morning was the first time ever, that I actually struggled to pull myself round enough, to be able to switch off the alarm clock. I have been struggling all day long. Today, the worst pain is in my lungs. I don’t know what is going on, or why they are so painful, but I am aware of every breath. To be fair, it’s more of a constant ache, rather than what most would call true pain. My diaphragm, though, well that’s another story. I am more than aware of what all my muscles can do, when under the control of my PRMS, they really don’t have to show off. I guess this afternoon will find me back in bed, not that it does much good, but somehow, it’s hard to fight the theory that going to bed, makes you feel better. Where did that stupid idea come from in the first place, probably something else I owe to my Mother. It’s amazing how what we are taught as kids, stays with us.

Please read my blog from 2 years ago today – 06/02/2014 – A girls best friend

This week is disappearing at a speed I haven’t felt for quite a while and totally without any reason that I can think of. I always thought that time flew when you were busier than usual, but I’m not, just ticking……

It’s good to talk

Posted on February 2, 2016 by livinginalimitedword

I managed this morning to speak to my doctor, to get the new level of Gabapentin, made official and for him to write a prescription to make up the difference, until, my next two monthly prescriptions are due. I probably speak to him normally, about once every three months and due to my bad memory, I always forget to ask a question that I have wanted the answer to, for about three years now. How to arrange for my wish to have a DNR added to my notes? I did have one set up about 13 years ago, but I knew that all the rules in Scotland had changed and the one I had, no longer existed. I had tried to find out how to go about it online, but as always, what you want to know, isn’t there. I could find out how to go about it, in almost every other country you can think of, but not Scotland. Today I remembered and asked what I thought like the previous time, was the start of a convoluted process. I was totally shocked by his answer, it’s quite simply a form, that he can send to me, I fill it in, and it just stays with me. Quite rightly, he said that it is mainly used when an ambulance is called to the home, so the place it is needed, is here with me. Of course, he asked the obligatory questions, was I sure and I simply said yes. The form is on its way to me.

I remember when I first mentioned a DNR to Adam, many years ago now, he said he couldn’t agree to it. For those who haven’t been reading for years, Adam is 17 years younger than me, so at the time, his experience of life, was the stumbling block, just as it is for many. I don’t think he was any more than 24 at the time and really hadn’t even managed to get his head around what was wrong with me. The fact that I was saying that if my heart stopped that I didn’t want it started again, sounded like I was saying, I wanted to die. We had been married a handful of years and although I was clearly by then having problems, he couldn’t see my future at all. Just as he couldn’t understand why I was saying that I wanted to choose when I had had enough or that if my heart took the lead and stopped, that was it. None of it made any sense to him and I wasn’t going to change his mind, at that point. I think it took about another 5 years, for him to start to understand my feelings and views. Not because I was constantly talking about it, but because different things appeared on TV and occasionally, I took their lead and tried to have a conversation.

In some ways, it has been the longest conversation of my life, but as time passed, as he matured and as I became sicker in front of his eyes, he slowly, understood both. Life is full of difficult conversations, things none of us want to even consider, but that is one of the nasty things about illnesses like mine, it force us into having to speak. I actually believe, it is another one of those discussions everyone should have, if they share my thinking. We owe it to our partners to talk about it, as soon as we have truly thought through all the ins and outs. It doesn’t matter what age you or they are, it will be difficult, but the sooner you broach the subject, the longer they have to come to terms with our wishes and, to truly understand them. None of us wants to die, but the way I see it is, if my heart stops, it would be because my body doesn’t want to go on. Yes, I might live another 4 or 5 years if they brought me back, but, with my health only going one way, with a heart that clearly isn’t fit and healthy, on top of everything else, what would those years be like? There are few surgeons out there who would want to take me on, what with my PRMS and COPD, not to mention the rest of them. I see it as nature taking its course.

There are some things in life, that I have realised recently, that we have to do, just to give us peace of mind. As you already know, I have been looking into the arrangements and ways of paying for my funeral. This weekend, I discussed it all with Adam. For the first time, it wasn’t a battle of emotions, it was a straightforward discussion about something that is a fact none of us can avoid. This morning, I have emailed the funeral director of my choice, and informed them, that I am ready to go ahead and go through all the final points and to pay for it all, apart from what I would like to do, about Jeffery’s headstone.

I started last week looking at all the possibilities, the most obvious would be to remove the stone that is there and to replace it with a totally new stone. There was something about that, that I just didn’t like. I don’t know why, but I see it as his stone, something that his father and I put in place and bears his fathers and what at the time, was my surname. I don’t know why, but I feel that it should stay that way, that adding my name, which clearly now has a totally different surname, just isn’t right. That stone, is his, and his alone. Nothing takes away the fact that I am his mother, or that I will in time be there with him, but I feel that my marker should be different and sat beside his, not replacing it. The first issue with that is the size and how to go about it getting around the problem of space. I have found something that even if space wasn’t an obstacle, that I find rather appropriate, especially due to the way I have spent the last 9 years and the foreseeable future.

There is something now called a “Tag memorial”. For those who are savvy with the modern world of the internet and smartphones, will already know, that a “Tag” is something that you scan with your phone and in this case, will connect you to a website. The site can contain a simple profile or a lot more, I want it to be a potted history of me. You can put anything that you want on your page, photo’s and video’s, anything that will show the reader, who you were, which is far more than just a grave marker ever could. I mentioned it to Adam on Saturday, we didn’t talk about it in great detail, but when I said that he and Teressa could build my memorial page, once I was gone, he seemed quietly pleased. I feel it will be a great way of working through their grief and to let them, the two people who know me the best, to be part of the whole thing. Even more, than they would have, if I had gone for the traditional funeral, which as you know, I don’t want. The picture below shows what the finished stone would look like, except it would have to be in either black or grey granite, due to the rules of the cemetery where Jeffery lies. Personally, I would prefer it to be black, which I doubt will shock anyone who knows me. This morning, I have emailed them to find out all the cost attached.

I can’t tell you just how much getting all of this sorted out, is helping me. Yes, there are still many things that I need to look into, but even the parts that I have, just make me feel more secure in my future. I know that might sound a little odd, but if you think about it, we all feel better when we have our futures planned out when things feel secure and everything is in place to keep it that way. I can’t plan a career, the next holiday or house. I can’t plan as many do about a retirement or dream about those golden days, their not going to be there for me. Now that I have done all of this, even if I could look forward to strolling on a beach somewhere, I think I would still be happier knowing I was making things easier, for those I love, and that they will know, that it’s my wishes.

Please read my blog from 2 years ago today – 02/02/2014 – Living with Pain

Yesterday’s pain took over my day, just after I finished my post I took the logical step of taking a long overdue morphine boost, it turned out to be my first of three. Having not slept properly from 5 am on, I found the…..

Avoidance issues

Posted on January 13, 2016 by livinginalimitedword

I just spoke to my Doctor and it was a phone call that has left me rather angry. It appears that he miss read the letter from the pain clinic and their suggestions of how to change my pain meds. Right now I am taking 900mg of Gabapentin three times a day. When I phoned the doctor last week, it was to see if I could get this raised, as I was sure that there was still room to increase it. I had this vague memory that when I was at the pain clinic, that they said this was one of the options that I had. I was rather confused when the doctor said that I was already on a dose that is above the recommended and that I clearly couldn’t have any more than that. It appears that the clinic recommended that it was raised to 1200mg three times a day, that was 18 months ago. So as of lunchtime today, I will be taking the new dose for a period of two weeks to see if it is enough to bring my pain under control. If it doesn’t, apparently, they also suggested that we try changing it to Pregabalin if that fails. I’m angry because the way he told me this today, it sounds as though I should have had the raised dose of Gabapentin ages ago, after all, I went to the pain clinic because my pain was rising. My GP, at the time, wanted to raise my Morphine, by I chose to stick to using the booster pills, as they gave me greater personal control. It has worked fine until the last six months, when I have struggled, not wanting to mention it, because of my fear of having to take even more Morphine. Normally, he is a great doctor and I have no problem with his care of me, but this, well this has angered me. I really wish that when a consultant writes to a GP, that they also sent a copy of the letter, to the patient, that way, I would have known all this and not relied on his memory. It’s totally unfair to ask a GP to remember every detail, of every patient that they have.

Over the last few years, all the old-fashioned paper notes have been transferred to computer systems. Understandably, but unfortunately, the GP system is totally separate from the hospitals one. For a very long time now we have had the right to see our notes on request, which means that you have to go to them, to be able to look through our notes. Being housebound, means that despite having the right, I can’t carry that right out. With it all being computerised, I personally believe that we should all be issued with log-ins, and be able to look at our notes whenever we choose. For someone, like me, who has a complex array of conditions, it would mean that I could keep track of all notes added, all suggestions, and what has already been tried. Consultant only writes to GP’s, either if they have prescribed a new drug, or when they have signed you back into the care of you own GP. Of course, GP’s only ever write to Consultants, when they have a patient they want them to see. The result is, that much is missed by both sides. I wouldn’t have missed these suggestions and I could have spent my time, assessing what might work best for me, plus I would be armed with all the details, that I have long since forgotten. I have forgotten so much, that different doctors ask me about, like the names of the drugs I have already tried, when and what one doctor said about something and so on. I have the time to arm myself with the info, that might make my future treatment, just that bit better. Although I have great faith in my doctors, both my GP and those I see at the hospital, the gap between the two is becoming, more and more visible as time goes on. It’s a gap that I feel I could fill, as could many with multiple conditions.

Clearly, from what I have just written there, I have removed the Duloxetine from medicine list and returned to my normal dose of Amitriptyline. Last night, for the first time since I took that first horrid little capsule, I slept right through the night until at 7:30, when I had to get up to go to the loo. I know I could have gone back to bed, but I decided to stay up, as not only had I slept through the night, but I also actually felt more awake than I had for days. The last four nights supplied only half the night in a deep sleep, and the other half, in a fitful half world, as unpleasant as the days that followed. Today, I feel like me, and that is a really good feeling. To me, I have just wasted 4 days of my life, because of my doctors mistake, as when I spoke to him last week, my request was for an increase in my Gabapentin, not a new drug, that would shred me into pieces. Mistakes happen, but that doesn’t make them any more pleasant.

Those who read my post from two days ago will know, that I had one of those horrid light bulb moments. The words “palliative care” appeared and I was hit between the eyes, by the fact I knew that the day I went onto Morphine, all though they didn’t say it, that I was at the end of the road. It’s amazing how when promoted to think of our care in one way, rather than another, that we happily carry on kidding ourselves. I remember at the time, briefly thinking this is the end, but my doctor waffled on about how there were still options and possibilities, although they didn’t name them. Clearly, their waffle was intended to pull me away from thinking I had reached the point when palliative care, something which is normally linked with the end of life care, was needed, and it worked, partially. Yesterday, that wall crumbled and I spotted the unspoken truth. Oddly, rather than pulling me down, it has left me in a very calm and subdued state, almost as though it removed not just a wall, but one that had spikes on its top. I feel as though the confusion of questions that didn’t quite make sense, are starting to solidify and showing the roots I need to go down, to put them to rest.

I have also been given a few pointers by several different very kind people, I know it’s not like I can make a list, this is an organic process, one that I will, of course, share here. I have also realised, that whether Adam wants to talk about it or not, he will have too at some point, just as I am going to have to get involved with groups like social workers, who I have body swerved at every turn. I’m getting ahead of myself, they aren’t top of my list, but they are on it, yes, I’m still avoiding them, but just like death, there are something’s in life, we can’t avoid forever.

Please read my blog from 2 years ago today – 13/01/2014 – Spasms are not what you think

I woke this morning on a bed that didn’t have the upper mattress hanging 3 inches over the edge of the lower and an elevator that lifted both sided of the mattresses at the same time. Adam and I pulled the webbing…..