Time for a new life

I’ve done it a million times before, well, it feels like that anyway, so I can do it again. I never thought that my life would turn at this speed, but it has, so all I can do is piece it back together and force my control on to it. So where do you start? What do you do first? How do you work out what it’s even going to look like? Well, you don’t do any of those things, not one of them. I know that sounds a bit nuts, how can you put your life back together, if you don’t even start trying? To me, that is the mistake too many people make, they try, they choose a point and they say “From here on in, it’s going to be different.” The truth is, it just doesn’t work that way.

Every time my body has destroyed me, the only way out of it, is to let it sort itself. There is no miraculous formula that sorts life, life has to sort itself, but we can help, we can put in place the structure and then let it grow. It’s a bit like caring for a climbing plant, you have to put the framework in place and then coax it to grow and cover it. What you do have to do, is identify the elements that will form that framework. For me, organisation has to be at the base of all of it. In little pieces, I have mentioned what is needed in the past few posts, but it’s all sort of muddled up and scattered all over the place, which is why I am still in a mess. My thoughts have been so wild and so all over the place, that I have been left no better off from writing them. Usually, when I write, it helps me to make sense of how I feel and what is happening, but it hasn’t been working lately, because of the speed that all the changes have been flying at me and because the rest of my life was all over the place.

So, organisation, you could ask that is my asking to the “where do I start?” question, I’m not. It’s a question that doesn’t need asking or answering, as it has already started. The instance my mind said “Enough is enough”, it began. All I am doing now is agreeing, and making sense of all those fragments that have been flying around in my head and appearing in this blog. I started my organising when I cleaned out my draws and bought new clothes to fill them. Clothes that were long overdue, as I have been wearing the same two pair of pyjamas or the two nightgowns and two dressing gowns for the last 5 years. Suddenly, I now have 6 pairs of trousers (all stretchy and comfortable to sit in), 5 long tops (all that cover me down past my hips, to be sure the bulges of towels can’t be seen), 12 pairs of sensible knickers( I used to so love my G-strings), 5 bra tops (not bras, they have hooks, these just pull on and off), six pairs of socks (toe to knee tight to prevent DVT) and two long flowing jersey cardigans, to cover up and hide any mistakes. Not one has a button, zipper or a catch, just easy access and exit designs, so I can dress alone, slowly, but alone. I haven’t had such a selection to choose from for far too long. In an odd way, they have been both the start of change and part of the problem in one, as I added something that makes life harder, I now have “choice” to deal with as well. That done, I cleared the wardrobe and created a home for all incontinence products, now piled up high and stored out of sight, but still reachable for both myself and the nurses. Both my bedroom and I, still managing to look anything but, hospital and patient. I have done everything that I can to preserve the “me” that was formed years ago, but accepting that I am no longer physically the person I once was, I’m modified if you like, but no more.

With my bedroom and my body now looking as normal as I can achieve, but with the allowances that have been forced on me, that leaves me free to sort out how I’m going to live. To live, I must have energy, something I have fought to work with for years, but I am now failing to manage as I once did. Energy is at the base of everything, without it, I am no more than a zombie who exists and that I idea, I quite simply can’t accept. Getting the balance between what I am supposed to do, to control both my bladder and my bowels and the amount of loss of control I can accept is a huge problem. I don’t have the energy to be going back and forwards to the loo every hour, nor do I have it to spend going to and fro to the kitchen, constantly collecting cold drinks. Yesterday online I bought a mini fridge, it is now sat in the living room, just one steps from my computer. Every morning, it will be stocked with bottles filled with my drinks, plus some cold water and a glass to take my potassium tablets with. There is a small shelf at the top, where once I have had my breakfast and morning meds, I can prepare lunch and it can sit there waiting for me. On normal days, this should be enough to limit my need to run around, other than going to the loo.

It may be the first day of the fridge being sat here, but it is already making a difference. Firstly, because I no longer sit nursing the last inch of fluid, as I have no energy to fetch more. I can now drink freely, something that will hopefully help with my bowels. In the past, my fluid intake has been greater in the evening when Adam fetches my drinks, now it should be constant, tapering off at night, so my bladder isn’t so full before I go to bed. Three things cured by buying one gizmo. I refused today to have another supplied by the NHS, the district nurse offered me a commode, I’m not ready for that step yet. Admittedly, it would remove the other issue, but then would come the emptying and I can’t ask Adam to do that before there is no other option.

I have also sourced foods that I like and can be prepared either by me or by Adam on the two days that just now I need his help. On Mondays and Thursdays when the district nurses are here, I use up so much extra energy with the whole process of the enema and the extra trips back and forwards. I am hoping that in the process of the next couple of weeks, that I will become more organised and that I will get it all working smoothly. So here is my framework. I’m fed, clothed, watered and rested as much as possible. Today, I have brought all the pieces together, I have the roots of my new life in place, from here, hopefully, the rest will grow and life will become easier, not just for me, but for Adam as well.

 

Please read my blog from 2 years ago today – 15/07/2014 – Passing the night

I used to get a magical half hour when I first woke up, I always thought it was partly because I take time to wake up, that my nerves didn’t react the same after lying partially dormant for so many hours, but I would be able to get up, go to the loo, fetch my glass of coke and come through here without pain. Even when I sat down I couldn’t feel burning, or pins and needles, just a strange fuzz, as though I was……

Who survives?

I often think that after writing for four years, that I must have covered every single topic possible when it comes to living with chronic illness. Yet, every day, I sit down here and I start typing and every day, I find something to write about. I have never believed in the idea that you plan what you’re going to write. This theory that every story must be laid out with a clear beginning, middle and end, before you even start, just doesn’t add up to me. Nor that it has to flow bringing every single point within it, to a conclusion, as leaving some hanging, makes people think. Other than the last, if my posts do any of these things, it just happens, I never think beyond the next word, which always somehow, just appears. I’ve never been good at planning, for me. On a business level, I was great at it, I had to be, it was part of my job, but planning for myself, well, I never even tried. I know some people have their lives planned from today into the distant future, but just like writing, I’ve never seen the point in either. Yes, I’ve planned things like special meals or events, like our wedding, but when it comes to the average daily things, why bother. Life, like my writing, just happens.

I left school without a clue of what I wanted to do, other than to earn enough money to cover next month’s rent. I had already been living alone in the YWCA for over a year, and my father was to cut off all payments to me, on my 16th birthday. So at Christmas, I left school and started working on the 3rd of January, as a receptionist for one of the many oil companies in Aberdeen. The only plan I had was to save enough in 5 week’s, so that I could carry out my birthday present to me. To change my surname, so I had no connection to my family, and to put a deposit down on a flat, as I didn’t want to live in the YWCA, any longer. What would happen after my 16th birthday, who knew, or cared? Life did, as that was nearly 50 years ago and I’m still alive, married, owner of a nice flat and happy. I did it all without a plan, so why bother with them?

I never planned a career, yet, I always had a job and in the end, a good job, but I didn’t plan to get there, it too, just happened. I never thought that after my first marriage ended, that I would marry again, in fact, I was dead set against the whole idea, then I met Adam. I never thought, or wanted to own a home, yet once again, here I am, and I sure as hell, never planned to spend my final years, housebound and chronically ill, it, all, just, happened. Just as all this happened, I didn’t have a single clue, what I was going to write when I typed the first sentence. If I had been one of those people who had had a grand plan for my life, who had like so many other an in detailed plan laid out before them in their minds, becoming ill, would have destroyed every single bit of it. Could you imagine what that might have done to me? It would have destroyed me. Just as it destroyed so many people, people who fall into depression, because they have had all their dreams, and plans, snatched from them.

When I became ill, I didn’t have to learn how to go with the flow, I had been doing it all my life. I wasn’t thrown by not being able to do whatever I wanted either, as I did very little that I wanted for the first 28 years. I either did what I was told, or I did everything that simply had to be done. On top of that, I was already a homebody. I wasn’t one of those people who worked so they could pay, for that annual holiday, when they would jet off somewhere to lie on a beach. Yes, I looked forwards to holidays, because, they meant I could stay at home and spring clean my house, or do some DIY. I haven’t left the country since I was 12. The first holiday I went on since that time was when Adams family, asked me to join them in Arran for a week, I was 37 by that time. I had only one more holiday after that, again in Arran, just over a year later for our honeymoon. Good or bad health, my home is the place I have always been the happiest. In many ways, I know that that too, has made the lifestyle, that being chronically ill, has forced on me.

I was halfway through the second paragraph of this, when, I realised just where this was going. I guess my subconscious must have known, but I honestly, didn’t when I started to write, I never really do. Just occasionally, yes, there is a kernel of an idea, like when I wrote about the card, that my Mother sent me, but, I didn’t have the slightest idea what or how I was going to say what I did. Like always, I have meandered my way through this post, making individual points, and as I do so, I have drawn my own conclusions. I do actually believe, that if there is a type of person who will find chronic illness, not easy, but easier, it those who are similar to me. If you have planned your life to the last second, if you have grandiose expectations for yourself, then you are going to find this type of life, a total living hell.

There is also another thing that I have just thought of, that also possibly helps me to survive, I’m not a “what if” sort of person. I can also honestly say, that I haven’t once sat and thought about how my life might be now, if, I hadn’t become ill. Which is probably why I don’t have the feeling that I am missing anything. Where I am, what has happened to me, is just the way it is. All I can do is make the most of it, just as I have, where ever I’ve landed up over the years. There really is a lot to be said, for not making plans, and just living.

(No, I didn’t plan that last line either, it just appeared and rounded everything off nicely.)

 

Please read my blog from 2 years ago today – 22/02/2014 – Is stress the trigger?

Lately due to reading my old posts from two years ago, I have been wondering how it is that for two years I have written daily and not only daily, the posts have become longer rather than I would have expected……

 

 

 

 

We’re so together

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…..