The flow of one life

Posted on January 30, 2017 by livinginalimitedword

The first month of another year is almost over and the start my 11th year of living the housebound life has begun. That is a strange sentence for me to have actually written, as the biggest thing I have noticed the longer I live, is that time is totally irrelevant. I don’t know if it is just age, or if it because of how I live, but time means almost nothing, other than when I need to do this or that. The clock totally dominates my day, but as all my days are the same, which week of which year makes no difference at all. I rise, I take my meds, all set out for each time slot of the day. I eat my meals, I tweet, I write my blog, I play some games on my computer, then I join Adam on the sofa to spend our evening together watching TV, broken by more meds, then I go to bed, the place where I spend the bulk of each 24 hours. Days are just days, no change, no differences, just days. In fact, my days are simply the filler between the hours that I need to sleep. One runs into another and they all melt into one, as the years now melt into each other.

I know that may sound dull and monotonous, but it’s not. There is a contentment in my life, and a happiness, that to an outsider will be hard to understand, but I am happy, truly happy. I know that I don’t have anyone who can verify this, as no one is with me throughout my waking hours, but I can put my hand on my heart and say that it’s rare for there not to be a smile on my face. I don’t mean one where my teeth are on display, but one that just lifts the edges of my lips and strangely, it’s hard to remove. Even when I go to bed, as part of my relaxation prior to sleep, just as I always have to consciously relax the muscles in my body, I have to remove that smile. What put it there, well that’s truly hard to explain.

For most, including me, the idea of losing my memory sounds like sheer hell. Losing those hard-earned narratives that make up our lives, should be the scariest thing that can possibly happen. All those people, their names and their impact on us, those places and the order that each locked together, are vital to our sanity, aren’t they? Well for me, it appears not. I’ve lived for years with those irritating moments when I find myself in some room with no idea why. Loss of short term memory is a pain in the backside, and yes, I can see without a doubt, why that can drive anyone up the wall. But then it started to step up until even Adam noticed not long ago that I could talk with total conviction about what I had done in the day, when he could see that I had done not one part of it. I eventually even had to admit that I thought tasks were completed, when the truth was, they hadn’t been started, but I’ve stayed silent until now about the loss of much more.

For a long time now, how long, I’m not sure, but it has to be years, I have been aware that things weren’t lost, just muddled. Events and people often felt disjointed and without subtlety checking with Adam I couldn’t be sure if I was right or I was wrong. But Adam and I have only been together 18 years, I have a lot of life that he can’t help me with at all, and as I was always on the move, I didn’t keep pictures or items that truly lock me into those times. When I knew I was heading into being housebound and that there was a good chance that my memory would go, I tried to put together a memory trail. I spent hours trying to lock memories to items within our home, memories that had no true connection to any of them. At first, it worked but over the years, it has all broken down. I can no longer even cover up the fact that without sitting here for hours trying to work it out, I can no longer tell you when each of my children were born, or their true ages. Those things that should come to me without thought, no longer appear without it, and even then I pretty sure that I get it wrong. Just as an example, last week it took me two days to remember the name of my ex-partner before Adam. We were together for three or four years, but for the life of me, I couldn’t translate the “T” in “TJ”, into “Timothy”, something that should have appeared with easy.

These are all things that should be worrying, things that just a few years ago would have had me in a terrible state, but now, somehow, it doesn’t both me at all. I know that sounds like something I should be truly worried by, as they are all things that should upset me, but somewhere in the past couple of years, I’ve accepted it all and without it sounding cold or callous, I quite honestly don’t any longer, actually care. Whether it is acceptance, or it’s just part of this whole process, I can’t be totally sure, but what I do know is, when you no longer worry, you’re happy. I’m happy. I just am, I’m no longer that worry wort, if things don’t get done, or don’t happen, what does it matter, as tomorrow will be here when I wake up, another day, month or year, all flowing into one. I can’t control my health, I can’t control how I feel, or what I do. I can’t control my future and I can no longer control my past, it comes and goes as it pleases so why not be happy, why not just smile?

Please read my blog from 2 years ago today – 30/01/2015 – Is it something else?

I was driven to bed last night by a combination of tiredness and pain. Not the pain that wants me to scream, but that long drawn out aches that there is no relief from. As often happens I was quite comfy sat on the settee for the first hour, then just after 8pm, first my left foot start to hurt around the outer side…..

The problem with green penguins

Posted on January 25, 2017 by livinginalimitedword

I woke on Sunday morning still with a painful jaw and mouth coated in speckles of dry blood and feeling a tiredness that I both knew and expected, but otherwise fine. I might be minus another tooth, but it was without a doubt one of the easiest and least painful extraction I have ever had. It wasn’t that the dentist used any new or different way of removing my tooth, but I like many people have a fear of such a process, without a doubt, being at home, relaxed and at ease, made a huge difference. It might have been easier for me, but my poor dentist found himself fighting with a tooth like neither he or his assistant had ever seen before. Thanks to a problem I had with my wisdom teeth, long since gone, the lower half of the root was at a 90-degree angle to the rest of it. The pair of them kept staring at it and studying it with awe, I just wanted them to put it away.

One of the roots did break at the point of the angle and is still sitting in my gum. They assured me, that this isn’t a problem at all, and that it will either just stay there, or slowly bring itself to the surface. Just to be sure nothing goes wrong, I am on a precautionary round of antibiotics and I also have an antiseptic mouthwash to use for a week. He is also coming to see me again in three mouths time, just to check all is well. I did get around to asking what would happen if I needed a filling or any process requiring care he could supply in my home, as I expected, the answer would be a referral to the dental hospital, but after his care over the last two weeks, I would recommend him to any and everyone.

He didn’t just arrive with the intent of removing my tooth, but he was also bearing a gift, one he did appologise for as it bore a green penguin on the handle. He had brought me a new toothbrush, one he would normally give to a child. From the staining and so on, on my teeth, he had noted that I was clearly having issues using a normal adult brush. I thought he was joking, but he was so sure that I would find it easier, I did try it later that day. He was right. It hadn’t crossed my mind that my dexterity could cause issues with cleaning my teeth, but it is. The small head means I can now with ease manage to clean all of my teeth with ease. I would recommend that anyone with dexterity problems buys a child brush and just tries it, brushes are cheap, our teeth aren’t. I have to admit though, I’m not too taken with the green penguin.

Having a tooth pulled is surprisingly something that causes raised fatigue. He did warn me, but I just didn’t see it coming, but it did. The next two days I found myself with a raised desire to sleep but still with enough energy to go on an internet search for a child’s toothbrush, that wasn’t a horrid colour or had some kind of animal embedded in the handle. Simple things like a good range of toothbrushes are actually hard to find online. Yes, you can find cheap multipacks of unknown brands and vivid colours that would clash with anything, but not being able to get to a shop, it’s hard to find what you want. On the good side, you come across things you have never seen or heard of before. Hence my most recent and unusual purchase. I have bought a child size charcoal toothbrush. Its handle is made of bamboo, so therefore unlike the millions of plastic ones out there, it’s biodegradable, but the even odder feature, are the brushes that are black and impregnated with charcoal.

Despite being well aware of the properties of charcoal and that the ancients used it to clean their teeth, I never once thought of using it on mine. I have decided, despite the fact that it cost about double what I would normally be happy to pay, to buy one. Why? Well, it’s simple, my teeth are now horribly brittle and difficult to clean, with stable cracks and so on, the makers (including some of the major brands you would know, but only on sale in the orient) say they are more effective against both plaque and staining. Some of the bristles are also incredibly fine, which means they get between your teeth and for most people, means no more flossing, something I simply can’t do. It sounds like a win-win buy to me and truly worth trying at least once. If you want, you can now actually buy charcoal toothpaste, which I am thinking about, just to use once a week.

It’s now Tuesday, a whole four days after the extraction and my mouth although still slightly swollen and tender, is fine, I’m still finding myself more tired than I should be. Our bodies despite being amazing, react in the weirdest ways at times. I know that my PRMS is playing a huge part but it was just a tooth, not a limb. It wasn’t as though I lost a lot of blood, in fact, the dentist commented that I bled incredibly little, to the point that when he handed me a gaze strip to bite down on, it came out almost clean. He left me another one just in case, but he didn’t expect I would need it. I though had to have my shower that afternoon and I knew before I stepped into it, that the heat would cause a rush, just as it did. So blood loss, couldn’t be playing a part, just in case, some might think of that one. I guess it’s just the normal, I live inside a screwed up form that does exactly whatever it wants, without any consideration for me.

Please read my blog from 2 years ago today – 25/01/2015 – Hidden blessings

Exhaustion is pulling on me badly today, it has that all too well-known feeling that I am being dragged down into a need to sleep so strong that it’s hard to ignore. Since I wrote the post on fatigue the other day, I realised that I am as guilty as a million other people with chronic illness of just saying “I’m tired” or……

Here, there and nowhere

Posted on January 21, 2017 by livinginalimitedword

I don’t feel as though I have stopped for a second over the past week, others might say I have done nothing but sit on my backside, but I beg to differ.

It was Tuesday evening and I was passing the heater in the hall, the one the heats our entire home, and somewhere inside me, I realised there was a something wrong. I stopped. held out my left hand and touched it, the majority of it was cold. The house felt as though it was around the same temperature that it had been for days, which hasn’t been exactly warm. I have constantly been telling Adam that I was cold and I even had him double up the duvets so that it was at it’s designed winter weight, something we have never used before. The result wasn’t just that I was warm in bed, but even Adam noticed that I suddenly stopped being up several times during the night. I may have been sleeping better, but that didn’t help at all when it came to the fact I was still cold during the day.

If you own a storage heater, you will know that it stores up the heat at night and puts it out during the day. A simple system, but what I discovered, just part of it warm, it made no sense at all. Normally they are roasting hot, or simply not working, not a subtle system, but one that works well. We did the only thing we could do outside normal working hours, change the fuse and hope for a miracle. We didn’t get one. The next morning the heater was only warm in the center strip, and the rest was cold. I have been through trying to get a storage heater fixed in the past and it wasn’t funny the last time.

When you start from the simplest point that I hate talking on the phone, add in I hate talking to strangers, plus I really don’t have a clue when it comes to the cost of doing things like fixing a heater, well, you can imagine how wound up I was well before I even started. In fact, I kept doing things, anything that I could just to put it off for another few minutes, even just one. By the time the District nurse arrived, I was as tight as a knot and she could see it. I stuttered my way through what had happened and how I felt as though the last few months, all I have done was spend loads of money, on things that were totally unexpected. Talking to someone friendly really helped, and once she had gone, I set too on phase one, my online search. I found 5 companies, I plucked up the courage and phoned the first, a voice said they no longer do storage heaters and hung up before I could ask if they could recommend someone. The second, I left a message for and never heard back from. The next two I emailed and the final one was answered by a friendly jovial man who was happy to come to the house the next morning.

Wednesday was high on the extra stress and Thursday followed with not just stress, but the exertion of my having to dash back and forward to answer the doorbell, first off, a chemist delivery, then for the postman and finally for the repairman. It may just be a doorbell, but each trip means having to transition from my desk chair to my wheelchair and in reverse when I eventually return. My stress peaked when I found myself having to work out if I could trust this total stranger with £100 to buy the parts needed, he seemed nice enough, but how do you really know. I trusted my gut. The relief of his return didn’t last long, as it was followed by the disappointment of him finding that the heater was too hot, to complete all the work and that he would need to come back the next day. Everything was disconnected with the heavy threat of no heat what so ever, it was going to be a cold 24 hours. Once he was gone, I started to relax a little, that was until Adam came home to make me lunch and reminded me that the dentist was coming that afternoon. I knew exactly what he would be doing and that it would cause me no pain, but there is this thing in the back of my head that associated dentist with just that, and it’s hard to break. Up went the stress levels once more.

I no longer have that rough broken tooth, that constantly caught on the inside of my cheek, which is good, but he is returning on Saturday afternoon, to remove the half tooth I have at the back of my mouth. There goes the plan I had of dying my hair on Saturday, I guess I’m grey for that bit longer.

Friday morning arrived with a chill that hit the second I removed the bed covers. There was only one choice, to spend even more money and switch on both the fire and the oven at full blast. There was no way that I was going to survive a whole day with a house that was that cold. At 10 am the doorbell rang, about the time the District nurse normally calls, so I thought little of it when I went to answer it, other than she was just that little bit early. It wasn’t her, it was the electrician, two hours early. What could I do, other than let him in and panic? There was one thing for sure, I wasn’t letting him go as if I did, I might have to go until Monday before he could return. The other thing I was equally sure about, that I couldn’t have an enema with this guy in the hallway between my bedroom and bathroom. Somehow, I had to stop the nurse coming and I had to do it quick. Of course, I didn’t have their phone number on hand, so all I could do was to call my doctors and go from there. It was one of these wonderful trials, one number to another then another and even when I spoke to someone, they called me back 10 minutes later to confirm that they would call that afternoon instead. I hate the whole idea of putting busy people like them off, but what else could I do, for that reason, I guess, my stress levels didn’t fall, they stayed high even after the heater was once more together and I could look forward to waking to a warm home again, but not until tomorrow.

You wouldn’t believe that something as simple as a heater could cause so much hassle. It’s not really any great surprise that right now, I feel as though I could sleep for a week, if not longer. I know that to most people, this would have been nothing but an annoyingly stupid set of events, but it has pushed me beyond limits that I haven’t passed in a long time. Even what should have been the peace in between each issue was no peace for me at all, as the workmen downstairs are still bringing down walls and making noise that is beyond funny, it’s been three weeks now they have been working, and I guess they are nowhere near done. Is it too much to ask for a little peace, a chance to settle and just be me? All I hope is that tomorrow although the dentist, followed by my carer will be here, will bring me just that bit of calm that I have been missing all week. The simplest of life issues, are all always translated as pain, and for this week, I’ve had enough.

Please read my blog from 2 years ago today – 21/01/2015 Removing walls

About a week ago I said that I had realised that maybe I should be writing a bit more about the effects of my illness on my relationships, especially the most important one between Adam and I, when I wrote that I didn’t realise just how front and center of every second of my waking day our relationship was……

Domiciliary dentistry

Posted on January 15, 2017 by livinginalimitedword

I never thought that I would see the day when I would be bearing my teeth to a dentist, in my living room, but that is what happened. Exactly on time my doorbell rang and two extraordinarily friendly dentists entered. Yes, I did say two dentists. I had expected to greet one plus a nurse, but apparently one of their nurses was off sick, so despite it being her day off, she was there to fill in and complete all the paperwork. That is a level of service I have rarely seen, most surgeries would have phoned and rearranged the appointment, but anyway, there they were, over smiley and gushing in their welcome. I have to say that I personally find people like that, just a little difficult to know how to handle, but at least I knew exactly what to say and what was going to happen. The whole appointment took about half an hour, the first half was spent just filling in all the paperwork before my teeth were even looked at, but I guess that is normal, with anything new. Luckily, Adam had written out for me a rather long list of all the meds that I am on, so that saved me the awkward memory search that always misses something.

Once the one actually acting as my dentist, had finished counting my teeth and all the gaps, we finally got down to why I wanted to see them, the three broken teeth. As I expected, home dental care is basic, but to me, basic is a lot better than none at all. They are returning next week to firstly patch up the tooth that part of the front has fallen off. He told me that the tooth and the filling is totally stable, so it really will be a patch up job. He is also going to add a patch over the tooth that has split but is once more totally stable, other than starting to crumble. On their second visit, they will also clean my teeth for me, something they desperately require.

As for the worst of the broken tooth, the one right at the back of my mouth, the one that I actually hesitate in calling a tooth, well, it’s no surprise that it will need to be pulled. I worked that one out when the third part of it simply appeared in my mouth one night as I was trying to go to sleep. He told me that their current state is partially down to the fact that I have an almost constant dry mouth. Our saliva does a lot more than just help digest food, it actually remineralizes weak teeth enamel, hence the fact my teeth have taken to crumbling. I lost a tooth on the other side about 12 years ago for the same reason, the dentist was cursing as it continued to crumble as she was trying to pull it out. As the pieces kept appearing, it became clear that the root would require to be cut out, not pleasant but it had to be done. I fear that this one will be a rerun, but finger-crossed, it might just hold long enough, but that is a couple of weeks away. Another factor that I wasn’t aware of, is that apparently the high number of drugs I am on, are leeching the fluoride from my teeth. So he is also going to write me a prescription for a high fluoride toothpaste, which should help to strengthen them and cut down the sensitivity that I go through from time to time.

When he comes back to start all the work, he is also going to have to bring some mobile lighting with him. He thinks that my wheelchair is suitable for him to carry out all the work in. On his next visit, I am going to raise the level of the headrest so that I can comfortably keep my head back for him. Even on the short length of time, he was fiddling about in there, my neck had a growing pain. I had to stop him a couple of times so that I could simply straighten my neck and twist it back into a more normal shape. There is no way that I could hold it at that angle while he is pulling a tooth, that really would be asking too much.

As I said and expected, home dental care is basic, clean it, patch it, pull it. Well, what else can they do? Without all their fancy drills, this is dental care circa 1800, with one improvement, he will be able to give me an anesthetic when required. I haven’t asked them yet what would happen if I needed a filling, I guess that would need an appointment at the dental hospital, something I would get transport for, as it luckily has the word hospital in its title. I’ll have to try and remember when they are here next week to ask, otherwise, it will just play around in my head and drive me nuts.

Thanks to a comment that was left on my last post, I was made aware that you can actually buy cheap hearing aids online. I was shocked to find some as cheap as just £3, especially after looking at the list of costs for some of the high street sellers of such aids, where I saw nothing below £500 and as going as high as £2000. I decided that I would buy one, not the cheapest but far from the most expensive. Having received the report from “Action on Hearing Loss”, which simply said there appeared to be a problem with my hearing and that they recommended further investigation, I thought I would try this simple route first. I had already bought the hearing aid when I had a further conversation with the district nurse, I have now agreed with her that I shouldn’t trust and settle for the cheap device. If I find it helps me, then I really do need a proper test completed to assess the problem and to prescribe what is truly needed. It is tempting to just go with what I can buy online, but our hearing is delicate and shouldn’t just be played about with, without being sure it’s the right thing to be doing.

By the way, I chose the title for this post due to the fact, that according to the dentist, this is the correct name for the service they supply. I now fully understand why I couldn’t find any help with finding a dentist to come to my home. Let’s face it, 99% of the population would never have put “Domiciliary dentistry” into Google. The words plain English shoots straight into my mind. Why do the professionals insist in making life hard for the average person. I did put it into Google just to see what the results were and yes, the help started to appear. Honestly, would that have been you first, or even last though for a search? Trust me, I don’t think I would ever have thought of it.

Please read my blog from 2 years ago today – 15/01/2015 – Time to start thinking

I woke in the middle of the night in pain, it doesn’t happen that often but when it does my body has always found a way of making it quite clear why my eyes are open and I have a desire beyond anything else to just get up. I was in pain, at first it felt like the pain was almost from my waist down, which was……

Unforgotten at last

Posted on January 12, 2017 by livinginalimitedword

Living in the land of the forgotten, brings a huge number of problems, that most wouldn’t even ever think about. The problems really start with the fact the most don’t even think about the possibility of being housebound, far less the issues that it might cause in everyday life. Two of those problems once again came to mind the other day and I decided to once more try to find solutions for both.

The average person visits their dentist at least once every six months, but when there is no way of getting to your dentist what do you do. I have been asking that question now for 10 years. About two years ago, I found myself at the dentil hospital thanks to an appointment made for me by my doctor due to a canker that refused to heal. Adam and I were sat there once more waiting for an ambulance to take us home and found ourselves discussing this very issue with a dental surgeon. He too had never given it any thought, but knew as well as I did, that there was no way of my seeing a dentist just for a check up, or to do any sort of work like dealing with a broken tooth. The NHS only supply ambulances if you are attending a hospital appointment. Everyday dental care, doesn’t require a hospital attendance and the dental hospital isn’t there for that type of care. Those of us who are housebound, have been totally forgotten about, there is no dental care for us at all.

I have now for about last 4 or 5 years been living with three broken teeth, one of which, caught the side of my tongue and reminded me it was still there, sharp and annoying. It wasn’t too bad, but it made me think once again about the position that I was in and I decided to have a chat with the district nurse, to find out just what would happen, if I were to have a raging toothache that needed attention. To my total surprise and delight, there now is a dental service for the housebound, in fact, several surgeries have begun democidal appointments in the last year or so. Off hand, she couldn’t give me a number to call, but she phoned me later that afternoon with the phone number for two such services. I am delighted to say that on Thursday afternoon, I have a dentist coming to my house to start taking care of my teeth for free and supplying me, with the same service as anyone else would get, who isn’t housebound. I don’t know exactly what or how this will all happen but I am so glad that there is now someone out there who has remembered that we the housebound exist. Why it has taken so long, I quite honestly don’t know. Other than the fact that the equipment required being adapted for home use may have taken them a little thought, something that is all too often the biggest issue with most things in life. People don’t like having to think, it’s just too much like hard work.

Once I had made the appointment, I started to think about how I have gone so long without any pain from my teeth. Other than the occasional spot of sensitivity, and the odd piece falling off a tooth here and there, I can’t remember any of them being a real problem of any sort. I am sure that the reason I haven’t felt any pain has been due to the huge amount of painkillers that I now live on. Morphine doesn’t just go to where my MS is doing its worst, it must be covering up other pain all the time. I quite honestly don’t see any other reason why I have got through an entire decade without a real toothache. I am sure that I will be seeing quite a lot of this dentist over the next few weeks as I am sure that he will find more work to do other than the three I know about. I will bring you up to date with the details when I next write.

The other issue is something that Adam has been going on about to me now for a couple of years, he keeps telling me that I am going deaf. It’s not just that I keep asking him to repeat things, but the volume of the TV frequently drives him nuts, he sighs every time I turn it up, so he sighs a lot. I too am aware that I have taken over hogging the remote, not so that I can choose the programs, but it’s the only way that I can be sure that I will actually hear what is going on. I know that there are loads of companies out there who will come to your home and test your hearing, but they also come ready with the hard sell for their overpriced devices. I don’t mind paying for what I need, but I first need to be sure it is really what I need and not just giving someone an inflated commission. I am quite sure that if I asked my doctor to send me for a hearing test courtesy of the NHS, he would do it, but that means another trip to the hospital and I really want to avoid that if at all possible. The district nurse didn’t have an answer on hand, but when she left, I decided to do some more research online. I was delighted to come across a link to a charity called “Action on Hearing Loss”, they supply a quick and simple test over the phone. For those in the UK all you have to do is dial 0844 800 3838, which is charged at the same rate as a local call and take the test.

The test takes about 3 minutes, you have to listen to them saying various lists of three numbers, with a lot of white noise over it. Then you type in the numbers in that you think you hear on your keypad. Apparently, they agree with Adam, I do have a hearing issue, because of which, they are sending me out a written breakdown of my results for me to pass on to my doctor. To get a free aid I will have to through the NHS and if that means a hospital appointment, well so be it, I at least will know it won’t be a waste of our time going there for nothing.

Please read my blog from 2 years ago today – 12/01/2015 – Bracing against action

Those of you in the UK may have like me watched the Voice on Saturday evening, at one point I found myself paying rather close attention to Tom Jones as there was something about him that stood out to me like a sore…..