Looking forward

We have made so much progress in the last few days. On Monday the house looked as though a bomb had hit it. We had old stuff waiting to go and new stuff piling up waiting to replace it. The furniture that I ordered has arrived bit by bit, and bit by bit, Adam and I have either constructed it or positioned it just perfectly. It was the dining area that was the worst, it is small with one table and chairs in it, with two, it was impassable. One of the things that was in that pile, was the old NHS bed elevator. I can’t even remember how long I have had, but all the time it was on our bed, it had caused this ridge down the middle. I don’t know if you have ever slept in such a bed, but the result is that you move slowly to the outside edge then spend the rest of the night hanging onto it. Until now, we had had no other option, but Mums money has meant that I could source and buy a new one, one that wouldn’t cause that dreaded ridge. The problem was caused by the fact that the old one was made of steel tubing, reminiscent to the backrest on an old hospital bed.  The new one is made out of box tubing and it, is, totally, flat. Even the way that it extends means it still remains flat, regardless what size of bed it is on. I even watched a video on YouTube to be sure it was right before clicking the buy button. Now it only has to arrive for me to be totally sure, but whatever it is like, it can’t be worse than the one that just left through my front door.

All my life I have over and over again said just how much I hate shopping. When I first said it, there was no other option than to trawl through shops, which were over crowded for my taste, even on a week day. All those people use to drive me up the wall as I hated shopping so much, that I turned into someone who had the item I wanted in mind, headed for it like a missile in flight, not once looking at anything else that was on offer all around me, I bought whatever it was and flew straight home again. I was delighted when online shopping appeared, and I was one of the first to use it. For the first time, I discovered that shopping could be fun, that finding what I wanted was easy and best of all, they delivered it to my front door. Unfortunately, that statement is no longer totally true. There are now so many sites out there that it is actually becoming harder and harder to find what you want. Not even Google can now hone in on some things, especially not those slightly different items. It took me one whole day of searching to locate three royal blue and gold key tassels and another full day to find the cord that matched them so that I can make new pull cords for the new living room blinds.

I haven’t just been buying things for the house, I have bought myself a couple of things to make my life easier. Firstly the bed elevator and secondly, another item that should be here soon, a new blood oxygen meter. There is in some ways, nothing wrong with the one that I have, but it is so simple and all it shows me is what is happening in that second. It doesn’t save any of the readings and I can’t download them for later use. Whatever I learn from it is quickly gone as my brain just won’t hold the information and I can’t show it to a Doctor if I have any concerns and right now, I have a big concern. Those that have been reading for a while will know that I keep finding myself sitting on the side of my bed in the middle of the night with no idea why or how I got there. So far the doctors have been useless in finding out what is going on. Sometimes I find myself unable to pull myself in the conscious world long enough so that I can just lie down again. Recently though, there have been a couple of times when I have woken sitting up, with the vague feeling that I didn’t breathe until I got there. I have been left with the idea that maybe, just maybe, it is because my blood oxygen has fallen so low that my body has acted by moving me into that position.

Whenever I have checked my oxygen during the day lately, it has never been above 89%, often showing as low as 84%. My consultant has said in the past that those aren’t levels for me to worry about, but back then, those type of readings were occasional, now they are all the time. Our oxygen levels naturally drop when we are asleep but I have no idea how low that drop is, so I have bought a meter that has a 24 hour read out and I can down load to all to my PC. I have been looking on and off for one but they were all over £100, some over £1000 the sort of money I didn’t have. Just because I have some right now, I still wasn’t happy about spending that much so I went on a search. It turned into another long day. By tea time yesterday, I had found one, and it was closer to what I wanted to spend, just being £56, but it was that time of day, where I always switch this machine off and become social. This morning, I completed what I always do when spending money, I copy pasted its name into Google. Sometimes I do it mainly to see reviews from other users, but always because I believe in just checking before I buy, that I have the best deal. I was surprised to find the exact same one priced as high as £170, quite a jump but it often happens. I was though delighted to find one company selling it for just £24.50. I bought it straight away. It just shows it’s worth double checking, even if you don’t think you can afford it, check, you might just be able to. If I had found this months ago, I would have bought it there and then, but I didn’t. Maybe in future, even when I think something is well out of my range, I will make sure, before putting the whole idea out of my mind.

Busy, busy, busy……

Right now I feel as though I am on a playground roundabout, clinging tightly to the central pivot to stop myself being thrown off. There is so much to organise and to make happen in the next month that my brain is now throwing me from one job to another, it’s not even taking a proper break at night. It all sounded so simple when I said I’m going to spruce this place up again and make it the way it should be, now part of me wishes I hadn’t even thought about it. So yesterday, I decided to try and put the brakes on, to bring the whole thing down to a pace where I can at least get my head around each step. Apart from the delivery of all the stuff I have bought, nothing major is going to happen before the 21st of this month. I desperately need time for my mind to accept everything before the big push arrives. I never used to be like this, in the past, I was one of those people who once I had an idea, I made it happen that day, or if not, the day after. Now I need the time to build myself up, to settle my brain and calm down this feeling of impending doom that has taken over my life. In fact, when the decorators asked if they could start later this week, I could feel myself starting to shake inside. That was despite the fact that Adam and I had discussed it all the night before and he had already in his head, that I would need him here when the work was being done. I was so relieved when he said that. Fortunately, his boss has been able to give him the time off.

It seems that everyone who is involved in my care, all know me too well. It wasn’t just Adam, my nurses, and carers when told them of my plans all instantly asked how I was going to cope, and all looked relieved when I gave them the answer. It’s odd how we get these ideas in our heads that we are still just like everyone else and that no one but us knows the problems we live with, especially when it concerns those things in our heads. Then something happens and it turns out we aren’t people, we are books and everyone around us has read every page of us and some, everything that is written between the lines as well.

I don’t need any of them to tell me that I have been pushing myself too hard lately. I started by making what was, in fact, a horrific list of everything in this house that needs fixing or replaced. Until I found I had the funds to do something about it, I had somehow managed to know about all of it, yet sort of ignore it as well, as what could I do about it. Now every tiny thing on that list is real and growing in my mind by the second. I can’t even sit still here at my computer as I see this or that or remember I still haven’t done that other thing. I have been web surfing like I have never surfed before, trying to get the best deal on all that we need. In some cases, it has just been a case of trying to find what I need. It is amazing how some of the simplest of things, turns out to be the most obscure. Without a doubt, it would all be a lot easier if I actually had a brain. Just sticking to one task and completing it is hard as I keep thinking of another, or panicking that I just did the wrong thing. Every day when Adam gets home from work, he stands here telling me to slow down and calm down, as he can spot it the second I speak, As a result of my perpetual muddle, my speech is now also all over the place. Even his telling me how well I have done, and that it will all work out and be OK doesn’t really have the effect he is after, my racing brain doesn’t listen.

My panicked state isn’t only down to all that I am doing. My brain has put itself on high alert, there is this feeling that any minute, the one thing that could destroy all my plans might just happen, that I could be thrown into a flare. It has been my experience that this is exactly the sort of time when my body suddenly decided to do something horrendous to me. I have become hyper aware of every spasm, twitching or pain that it picks to throw at me without warning, and the ticking time bomb that all with an illness like mine lives with, seems, to sound just that bit louder. Irrational, well yes I suppose it is, as I have nothing other than fear and sod’s law to base it on, but I can still hear that ticking.

It’s time

I’m heading out on another of those journeys that I find I have little choice over as it quite simply has to be taken. A couple of weeks before I took my break from blogging, my mother died. It wasn’t unexpected as she was a rather elderly and unwell woman. What did surprise me, was that she has left me some money. I believed that because of the way our relationship had been over the years, I had expected she would have totally written me out of her will, just as she had told me years ago, she had done to my elder brother. It turns out that was just another one of the hurtful things she said, rather than acted on. She chose to leave all of her four children, exactly the same as each other. If she had died four years earlier it would have been a considerable amount, but almost everything she had, has been swallowed up paying for her care over those years. What we have each been left is still a wonderful gift and one I never thought I would receive.

Like everything in life, closing a persons life, doesn’t go as smoothly as anyone would think, and it has taken until now for the money to actually be on its way to me. The delay though has allowed me time to actually think about what I want to do with that money. Not that it was actually that difficult. I have decided to spend it on repairs and redecoration of our home. Some rooms haven’t been painted since we moved in here 17 years ago, the most recently done was the bathroom 7 years ago when we were forced to change the entire room so that I could manage to have a shower. It was always me who did all the DIY. I had been doing it all my life without a seconds thought, it was there to be done, so I did it. 10 years of being totally useless and another 5 on top of being almost useless, well the results are not clear to see. The whole place desperately needs attention and at last, we can afford to actually do it. Along with other jobs like getting the curtains cleaned and small bits and pieces being fixed through out the house, all equally long over due.

It all seemed like such a good idea when I first thought of it, but my doubts have grown precisely to match my excitement. I guess that it is a female thing this making our homes, our personal nest, something I did years ago before I became housebound. I knew that one day I wouldn’t be able to work, so it all had to be perfect. When I look around the flat now, well it makes me feel as jaded as it is. I know nothing lasts forever, but I never thought that I would have the opportunity to do anything about it. I have decided that I am going to simply have them redo our home exactly as it is. No new colours, nothing changed too much as that would mean changing everything else as well, and my mother didn’t leave enough for new furniture, carpets, and curtains too. It is enough though to fix all those little jobs that have been piling up because I can’t do them. Like the last three doors in the hall that never got rubbed down and polished to match the other three I did. Or the dripping tap in the bathroom, which Adam is too unsure about what it takes to have even tried. Or the flooring in the kitchen that has gaps where some tiles have slid and bear patches caused by my electric chair. Or the sealant around the windows that have discoloured and needs changing. Luckily, there is enough to do all that.

On the surface, it all sounds wonderful, but there is one huge problem, me. You just have to read my previous post to know exactly why that is. How am I going to manage all those strangers in my home? Yes, this is another one of those joys that chronic illness brings with it. I have been longing for years to have the house redecorated and to be honest, Adam isn’t the person to do it, but like any other house proud woman, this has been a dream of mine for years but it is equally, a total nightmare all rolled into one.

I have spent several hours over the last few days online, searching for a company to undertake the work, which has good reviews and so on. So far, I have spoken to 5 different companies and two of them, have actually been to the house to take a look at what needs doing and to give me a quote. A few years ago I would have approached this whole thing differently as it is no longer just about the quality of the workmen, it is also about finding a company that is happy to undertake the work and willing to work around my medical needs as well as my irrational routine fixation. I had initially had this dream in my head that I would be able to find one company who would do everything, my searches have shown that dream to be impossible. Although, I am hopeful to have brought it down to just three rather than streams of them. Either way though, this will mean a lot of people in and out of my home for several weeks. I am thinking that it might be a good idea if once I have a complete timetable of who is here and when that it might be a good idea if I asked Laura to come and sit with me at least once a day to help keep my anxiety level just that bit more settled. Not just for me, but for those who will be around me.

Despite all of that, oddly, I am looking forward to all these things being completed, to actually having a home I can wake up in daily and be proud of again. I know without a doubt that the way it has deteriorated has played a role in my not wanting people here, even those that I’ve really needed. I have been ashamed of it, as it just isn’t my home as I remember it, the way it was when I for the very last time, I closed my front door behind me. I also know, that it isn’t just me who will be pleased to see all these things done, as Adam has said often that he feels the constant pressure of all those things waiting for him to one day find the time, the money, and the skill, to fix. As I said at the start of this post, I never expected to be left a single thing, but thanks Mum, you have left both Adam and me exactly what we both really needed, but you have also left me a future living nightmare.

It’s my only way

Why does life have to be so contrary? I constantly find myself having to start all over, with things that I was totally sure I already have done and dusted. For example, my previous post. I thought all that I would ever have to do with regards to “potty training”, was done and dusted in childhood, yet here I am, once more like a baby, incontinent. We all know that they say growing old, is like a second childhood, but I have found that it isn’t just growing old that brings those burdens, health can bring them home even faster. I don’t think that I have ever, directly said that I feel like I am prematurely aging, yes, when it comes to skin, I know I made that link. Just a few months ago, I was looking at my hands and they suddenly looked old, really old. Yet suddenly, I feel as though if someone who couldn’t see me, asked me for a description of my life, that would be it, I am prematurely aging, with a large dollop of pain, added just for fun.

My gray hairs, which there really aren’t that many of, are well hidden with dye, and I don’t have that many lines on my face, but the rest of me, is doing a highly honed impression of someone in their 90’s. Chronic illness has to be one of the most unfair things on this planet. Taking our health is just the start, it’s not happy until it has taken everything. Yes, even I, just occasionally feel sorry for myself, usually, around the same time as I feel as though I am 90. I actually think that it does us good from time to time, to feel sorry for ourselves. In fact, we wouldn’t be human if we didn’t, I honestly believe that it is just as unhealthy to be depressed, as it is to be highly positive all the time. Somewhere along the line, we all have to find a balance, and for those of us who are ill, it’s even more important.

Most of the time, I think I do a reasonably good job at being what most people would call normal mood wise. Most of the time, I would say there is little change in “me” throughout all the years I have been ill. That isn’t just luck, it’s down to the fact that I closely monitor my feeling all the time. Well, not minute to minute, but more an overall view. I have made no secret of the fact that I suffered from clinical depression many years ago now. It took years of therapy for me to recover and to deal with the root problems. Some were missed, but in time, they too are being dealt with, but the thing I gained from all of it, was to deal with how I felt about everything and anything when it happens, and not to bottle it up somewhere, in the hope it would just go away. Of all the things I have learned over the years, from “potty training” on, that is the most important life lesson of all.

I have never been surprised by the fact that depression seems to go hand in hand with almost every chronic condition. Equally, I have never been surprised by the fact, that I have never been touched by it so far. I say so far, because, I also totally believe that no one is immune. I have had so many people say to me over the years that they are amazed by how I constantly have a positive attitude. If I do, well it isn’t because I try to be positive, I just try to be me and to be happy. If you deal with all the bad things in your life, if you forgive those who have hurt you, and you work on being happy, a positive attitude seems to be the result. So to those who think I am putting on an act, or sticking to that stupid phrase everyone says “You have to be positive”, I’m not. I actually think that doing so would be damaging and probably the quickest way into depression, putting on an act, just makes life harder, and it’s hard enough as it is.

So today, I feel 90. My body aches, my legs are only working under duress, I’m forced into my wheelchair even just to change the channel on the TV. Yes, we do have a remote, but I can’t see the stupid screen well enough, to manage unless I’m two foot away. My elbow hurts every time I try to go even that far in my chair, oh, and I’ve wet myself twice. So yes, today I feel useless, but I’m still not letting it get me down. It could be worse, I could feel 100. There it is, did you spot it, that’s my trick and it’s that simple, there is always a way things could be worse. I’m more than aware that no matter how bad I feel, it can always be worse. I’ve remembered every severe spasm that I’ve ever had, every time I have found myself unable to breathe or unable to stand. I have a picture in my mind of every stage of not just my health, but those worse than me, and I smile every time that I know I’m not there. I’m grateful when I can deal with my pain levels, and when I can’t, that I have a tablet that will at least help, and I tell myself just how lucky I am, for the way things are just now. So if tomorrow, I wake up feeling 100, I’ll be grateful that I don’t feel 101.

No matter how contrary life is, I intend to enjoy every day that I have, and I have no intention of finding myself once more struggling with depression. This is the only life that I have and no matter what, my health isn’t going to get the upper hand. All of us can get through chronic illness and be happy. I’m not saying it easy, it takes work, but monitoring your own mental health, can save you from a being in a place I never intend to go again. Don’t be afraid to cry, to shout and scream if that’s how you feel, but just remember, at the end of it, you have to smile again. Get the balance right and no matter how contrary your life gets, you too will be smiling.

 

Please read my blog from 2 years ago today – 14/09/2014 – Total muscle failure

I have just lost an hour of my life in the bathroom. I woke up this morning just before the alarm sounded because of the racket coming from my stomach, there was the most amazing run of bubbles travelling around inside of me and I knew it wouldn’t be too long before I would be going to……

Potty training?

I know it doesn’t sound like a big deal, and I never thought that it really was until I found myself here. I have been living in this strange world of not just having to wear knickers, like anyone else does, but another layer of an absorbent pad, now for over three months. Bladder incontinence, it doesn’t sound like much. What can be so tough about wearing a nappy to protect yourself from embarrassment, and your clothes, and home free of pee? Well, once you get past the balancing act required every time you go to the loo, or get dressed, not much, right? Wrong. Like everything else that our health throws at us, there is a lot of adapting to be done. You wouldn’t believe just how hard it is, to accept, no not the fact that your bladder has failed, but the fact that it doesn’t really matter. I still find myself flying to the loo, just to arrive once the whole show is over. Trust me, there is nothing odder than feeling warm liquid collecting between your legs and for it to be perfectly normal, and apparently not an issue.

That’s the first thing that you learn about these incontinence pads, they don’t absorb instantly. The way that they work is to form a sort of trough, where the urine sits until it’s absorbed. The first time I discovered that it was actually quite distressing. I was sure that the whole thing was a complete disaster and at any second, it was going to run everywhere. It didn’t, but just that feeling that it was going to, nearly turned it into one. In some ways, that is why I am writing this because I am sure, the first time it happens to anyone, they must think the exact same thing. Why they don’t explain something that simple to you, I don’t know, but they don’t. They hand you this huge pack and I do mean huge, each is about 18 inches by 10 by 8, and they give you three packs at a time, storage is your first problem. Learning how to put them on the second, and that reservoir of liquid is the third. Unless you wait until it clears, you will be in a mess, so don’t panic, just wait until it clears before trying anything.

It doesn’t matter how many times you feel it, or whether you are alone or in company, the desire to move as fast as you can to the loo, doesn’t seem to get any less. Being in company, just adds more questions into the mix. Is it safer to stay where you are, let it soak in and then go, or take the chance and head out of the room? Both rely totally on one thing, your confidence in how well you’ve positioned that pad. Did you remember to pull those flaps out at the back? Are those elastic strips tight into the fold of skin where your leg joins your body? Are your knickers holding it firmly in place? Which worries you more, pee on your white settee, or it running down your leg and all over your wheelchair? I have to say right here, so far, touch wood, they have never failed me, but that doesn’t stop the fear because the whole thing is totally alien.

We are only a few months old when our parents sit us on a potty and start hammering it into our heads, that we don’t want to have a wet nappy. I still don’t want to have a wet nappy, but unlike every parent I have ever known, when that nappy is wet, it gets replaced with a clean one, I can’t change mine. Those huge packs that they give you, only contain one for every 12 hour period. We are expected to wear the same one, wet or dry for that enter time. I have been lucky, very lucky to have friendly district nurses, they snuck me in another pack, so I don’t have to go through such a thing. I have to admit, that I did try it, not when the pad was soaking, but way beyond a dribble, just to see if I could get past the phycological barriers. I only wore it for an hour and to my surprise, it really wasn’t as bad as I expected. They do pull the liquid away and I didn’t feel wet, just moistened, as though I had some sort of cream that hadn’t been absorbed. I know that the day will come when I won’t be able to keep changing myself as I would today. I will have to wait for someone else to be here, to help me, someone who isn’t Adam. No, I don’t want him changing me, any more than I want him showering me, so the point will come, when I will have to choose which one, would upset me the most. It’s a hard choice.Then there is a question that has circled around in my mind many times, how can it be safe to wear a wet nappy for so long? The most obvious is the question of nappy rash. If it happens to babies, it must happen to adults as well. I know that our skin isn’t as delicate, but our urine is more powerful. Then there is the question of infection. Surely, all those bacteria circling around the entrance to your bladder has to raise the chances of bladder infections? What better environment can there be for those nasty little bugs to grow and to do their worst, yet that’s where we are told they should stay. How can that be right?

Becoming incontinent isn’t just about the day you first wet yourself, or even when you see the continence nurse, it starts there. Your right there at the start of something that is going to test you daily for the rest of your life. The only sure way of ending that is to have a catheter fitted, and that is just the start of a whole other set of problems. I can’t get past the fact that no matter how well they design and make incontinence pads, they are just as likely to fail as any baby nappy is, and they fail all the time. Add in our disgust of the whole subject and hatred of admitting we can’t control it, and no matter how much we want to pretend it isn’t happening, we are caught in something huge. I’m good at adapting, I’ve done a huge amount of it over the years, but I have a feeling that there is part of me, that will never adapt to it because it’s not the same as anything else. I guess it’s that hammered in training, as we are being dragged right back to the beginning of our lives and going through that childhood failing, all over again.

 

Please read my blog from 2 years ago today – 12/09/2014 – Danger, danger

Those who have been reading for a while will know that I more or less self-prescribe, when I want something I never see my doctor, I just phone talk to him tell him what I think I need and he sends me the prescription. Yesterday we went one step further, I now don’t even need to speak to him! I had phoned in the morning and said to the receptionist that I needed to talk to him and that I required…..