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.

An announcement I have to make

There are so many ways of looking at life, and the shitty things that happen to us, that sometimes it feels as though we’re living in a human washing machine. When we are kids, it was oh so simple. The clouds were made of candy floss, the moon made out of cheese, and that was alright because we were kids. No one tried to tell us that we were wrong, as that the truth sounds far more mundane, but is actually far more exciting. The only people who constantly burst our bubbles were our siblings, and they so loved doing it. Being an adult means that we understand the science behind clouds and that if there is cheese on the moon, well it was left there by the astronauts. No matter how much we understand, or we learn, life just get’s more and more complicated, more and more confusing every single day. The more I think about it, the more I look back on my life, I don’t think I actually grew up, until the day a doctor told me I was ill. Suddenly, I didn’t care about any of that, I didn’t care that my final bubble had been burst, all I care about was living.

I always thought that whenever you got news like that, that it would be death that you would find yourself thinking about, but all I could find was a desire to live whatever time I had left, just as I had to that point. I put on the biggest set of blinkers that I could find, and all I could do was carry on living as though nothing was wrong. Others admired me, they thought that I was incredibly strong, I know because some made a point of telling me so, but they didn’t see the truth. If I’m totally honest, I didn’t touch those blinkers, until the day my left arm stopped working. For five years, I got on with life as though nothing had changed. I took my meds, I went to work, I had chemo, I decorated our home, I bought furniture and ornaments, filling my home with all the things I thought a home needed. When the time came, I learned to use my wheelchair and sped everywhere at full speed, but still I hid from the truth. My weight dropped to the point that I was hospitalised to have a gastric nasal tube fitted, and still I was telling myself, there was nothing wrong with me. I had flares, I spent time in hospital, I took drugs, tons and tons of pills with names I couldn’t pronounce, but in my head, I was still fine, until that arm stopped working. How do you go through all of that, and not understand the reality of what is happening to you?

In fact, I don’t think I took it in fully even at that point. Being housebound didn’t stop me from working, it didn’t stop me from living as I had done, every day up until then. I got up early, I did my work, answered all those oh so annoying emails from people I knew already had the answers, but they just wanted to hear them, from me. Life continued, unchanged in content, just changed in location. I still had those blinkers, they didn’t fall off until a year after I lost my job, and then, for the first time in 9 years, I actually stopped. It took being turned down by hundreds of agencies and ignored by the HR department of any company I thought might need my skills, thousands of emails later, I accepted that no one wanted to employ me because I was ill. Me, the person who has lived through everything and refused to stop living, was ill and I for the first time, had to face that fact. Why did it take me so long? Because through all of it, I rarely felt ill. I was in pain, I was fatigued, occasionally, at times I even thought I was dying, but every time I got better, I was no longer ill.

It’s taken me several days to write this post, because of one thing, this post is a declaration. I’m no longer just too ill to work, I’m too ill to do almost anything, even the regime I have pushed myself over the last few years to maintain. I’ve pushed myself to the limit, day in day out, I have exhausted myself time and time again, but I have kept pushing. That combination of blinkers and determination have taken me through 15 years, of living with a condition that is doing it’s best to kill me, but it isn’t working any longer. In the last 4 years, I have slowly stepped down what I do every day, and every step down has hurt. This one really hurts. Right now, I don’t have the energy to keep doing all that I do, neither do I have the mental capacity to do it either. In the last two months, I have become iller and iller and I can’t escape that fact. I’ve slowly laid out the pieces over the last few weeks, but today I’m laying it out in black and white. I’m ill, I so ill, I’m stepping it down again. No, I’m not going to stop blogging, but I am going to stop blogging every second day. I’m not even going to say when or how often I am going to write, but be sure, I will still be writing, just not as much and not so often. I don’t have the strength left to fight in this way anymore, and I need my strength to fight in the ways that will get me through the next few years. I want the strength to see the candy floss for just that little longer.


Please read my blog from 2 years ago today – 13/10/2014 – It’s time for an adventure

It’s one of those odd weekends that we haven’t had for what seems a really long time. Once more the admin department at the hospital Adam works in is behind on the job of scanning doctors notes to add to patients files. I really don’t get this as the NHS has spent a fortune putting all patient records onto a computer, therefore the doctors no longer need paper files when they……

As our minds vanish

Today, my mind is the clearest it has been in days. Fighting brain fog doesn’t work, any more than trying to clear a path through its namesake in weather does. The biggest difference between the two is that your eyes see fog with clarity, but you don’t always notice fog slowly filling your brain, in fact, on many occasions, it hasn’t been until it starts to clear, that I have truthfully seen it for what it was. Brain fog is incidence. It creeps into each crevice and slowly it fills them, flowing quietly into every part, while you, well, you slowly get more and more confused. Life gradually becomes misplaced, while you’re fighting madly to make sense of it. Years ago, I would see it almost instantly, but as I have generally become confused, seeing fog creeping in on top of it, has been harder and harder to distinguish. How do you tell the difference between normal madness and the madness that fog brings?

On a normal day, I can have problems just stringing two words together. I stutter and stammer as I desperately grope for the word that seconds before was on the tip of my tongue, but now that I actually want to use it, it’s gone. On a good day, I eventually find it, on a foggy one, I don’t stand a chance. You grope your way around, trying to clear a path but you can’t, as the second you sweep away an inch, ten pile in behind, obscuring everything, often even your voice. Even things that are there right in front of you, can become nameless objects. Objects that you know, but can’t describe or name. They are just that thingymajig, the oojamaflip that you use to you know, do that thingy with. Yet still, you can do that thingy without thought or difficulty, unless you actually think about it. The connections are there, but they’re fuzzy and feel flawed. Slowly you trust nothing, not even yourself, to be where it once was.

Fog has become a resident feature of my life. The clarity that I feel at the moment, is fleeting and glorious when it arrives. It is like a bright light, it lets me make sense of everything, for a short time, before the fog slowly once more shrouds it all. Fog used to be an occasional visitor. The odd day here and there, annoyingly making life tough, before normality returns. Now the balance has changed. I still call that clarity normality, but it isn’t, it’s now the visitor, the friend that drops by from time to time, to remind me what life should be like. If I am lucky, it stays for a few days, but that hasn’t happened for a while. I keep hoping that it will stay, but it’s slowly eclipsed in hours, not days. Tiredness seems to be the trigger, the door that once open allows the fog to return, and I’m slowly swallowed, consumed and eventually, once more gone.

Things changed a few months ago, exactly when, I can’t say any more than I notice its arrival. There must have been a day when the balance changed, but I don’t remember when it was. I now spend more time drenched in the mist than I do out in the light. I know in the last few months I have spoken often of my memory laps, and how they are getting worse. When you’re encased in fog, you don’t only forget what you once knew, you can’t remember what’s new. You might be there in that moment, but you see it as being somewhere else, caught in a half world, like the one between wakefulness and sleep. In that state you can’t make yourself move, well, just like that, you can’t make yourself remember either. Memory can’t be forced, it either is, or it isn’t, no half world, no options, just as it is, wrapped in a fog that swirls and changes outside of your control. Some things get through, others are misplaced, some are just fractured, but all are still there, it’s just accessing them that is hard.

Living inside a cloud means that the outside world is muffled. A bit like wrapping a pillow around your head, but you can see, hear and interact. That cloud pulls you inwards until you live inside yourself, rather than out there. unless something yanks you out to where others are. More and more you live inside your head, talking silently to yourself, cut off from conversation, from the pictures and sounds that the TV makes, isolated but still for now, still part of it all. Your ability to do more than one thing at one time diminishes. You have to use all your abilities to stay in connection with one thing at a time. That conversation, the one that others are trying to have with you, only gets through if you let it. You can’t talk and follow the TV at the same time, nor can you think while someone talks, everything has to be done in turn, not all at once.

At times even awareness slides inside and all you hear is yourself. Unlike other symptoms, there are no crutches, no wheels, no tablet, nothing that can make a form of reality others would understand, or be able to relate with. Fog is isolating, but it’s also strangely comforting. The longer you live inside it, the more you accept that there is you home, the place where you should be. I fear that slowly my need to interact will vanish, that I will find less and less need to be anywhere else, other than inside my head. I often wonder if what I am going through, might be just like the beginning of dementia or Parkinson’s. I don’t think I have either, let me make that one clear, I just wonder if brain fog, hold a similarity to other conditions, that affect the brain. If somehow, we have the eyes into their worlds.

I know that slowly this fog will take over, even more, I’ve seen it and I’ve read about it from others. Just as my body is slowly failing, so is my mind and for now, just like my body, I can see it. What happens when we can’t?


Please read my blog from 2 years ago today – 10/10/2014 – Pushing the boundaries

Yesterday just sort of happened, right through until I went for my nap absolutely nothing of interest or note happened, it was just a day, as I said until I went for my nap. Lying down seems to trigger so many things, but I already had my diaphragm creating pressure all around my lower ribs, so I wasn’t that surprised that the strange sensation of having a ball shoved inside my ribcage, whilst…..