Return to Neurology

“Frankly, I’m surprised to see you even sat here in front of me, awake at all.” Those were the first words that my neurologist said to me, once he had read my referral letter and checked the list of drugs I am on. My GP had asked him to see me following the development of what I suppose appear as sleep issues. There had been no change in my drugs or anything else, but I was finding myself waking up or should I say not, sat on the edge of my bed during the night. I can never remember actually going through the process of moving to the edge of the bed or sitting up, but there I am, unable to wake up enough to either lie down again or get up. My head will drop forwards and I wake, but just long enough to raise my head and instantly fall asleep again. This can happen over and over until I do eventually wake. On its own, I wouldn’t have really been bothered, but then I started falling asleep in my wheelchair while trying to get to, or back from the toilet. Again, I am unaware of falling asleep, just waking up or being woken by Adam sometime later. There had been no change in my medication when this all started, nothing had changed at all, not drugs, routine, diet nothing at all, just this sudden odd behaviour. It was closely followed by my starting to wet the bed, and the dip in my memory and all the other things that I have written about over the last few months.

Both Adam and I smiled and half laughed following his comment, as it has been one of the things that we have both been astounded by over the years. It doesn’t matter what drug they throw at me, or what the side effects are supposed to be, I never have the slightest issue with any of them. Yes, I should be asleep 24/7, and I should be totally unable to even think, but here I am still managing to live my life. Yes, I have a list of growing issues, but as nothing else has changed, the drugs in themselves, seemed to be irrelevant to the issues I now have. When I stressed this to him, he smiled and said: “Well, you do have to take in the factor of your age, as you get older, nothing works as it once did. Even how we react to medication changes.” I didn’t at the time have an answer for that comment, nor did I have a way of questioning, but it didn’t sit right, after all, I’m 56, not 96.

We discussed how the drugs I take are working for me and what relief I find or don’t find in them. I went over the different sorts of pain I have, and when I take my booster doses of morphine. He did seem a bit surprised at the fact that I don’t take them ever day or even every week, I think he thought that that would be the answer he was looking for. I guess all doctors look for the simple answer, but if it had been that straightforward, I wouldn’t have be sitting there as my GP would have spotted it. He wasn’t giving in totally on my drug regime, he wasn’t too happy about my being on both Gabapentin and Pregabalin. The latter had been added just about six weeks ago to try and counter problems I was having with nerve pain. As it is a drug that has to build up in your system, I couldn’t be sure if my nerves had simply shut up, or the drug was doing it’s thing. So, I wasn’t at all bothered about taking it out of my drug list, especially as he wants to replace it with a new drug, that is proving to have a good affect on that sort of pain. Sorry, I can’t remember it’s name right now, when I know, I will let you know too.

I proved over and over that my brain isn’t working the way it once did. Adam spent about as much time talking as I did, as I was frequently totally lost and unable to answer his questions. He isn’t just leaving it at changing one drug though. I am to go for an MRI, in fact two. A normal one, followed by one done with a contrast dye. As it’s now nearly 16 years since I had my last one, I have to admit that I am really interested to hear what the changes have been over that time and where the latest lesions are, as I have a few theories of my own as to what is going on. On top of that, he is sending me back to rehab. I really wish they would call it something else as it makes me feel like a drug addict or drunk. What rehab will do is to assess me and see if there is anything that they can suggest that will make my life easier. Once again, he warned that they might want me to come into hospital for a couple of days, something that I am even less happy about now, than I was the last time he suggested it 8 years ago. I live in such set routine, one that the hospital will never be able to accommodate and I know without a second thought, that I would find the whole experience destressing, from entry to being sent home again. The biggest problem though is I won’t have Adam with me. As I showed even in the short time we were at the hospital this time, I don’t remember things, so if they ask me any questions, without Adam, they will probably be given the wrong answer, or no answer at all. But I’m not going to worry about that one right now.

I spoke to my GP this morning, as he called to say that he had the letter from the consultant about the change in my drugs. I told him that it had been implied that my age may well be playing a part with what has been happening to me recently. To my total joy, he laughed. Just as I thought, he reassured me, that I’m not that old. Although both I and my GP think this is probably not an issue that I am dealing with yet, it isn’t actually a totally stupid consideration. As we age, we do actually become more likely to suffer from side effects, even from drugs that we have been taking for years. These side effects usually slowly increase, not in sudden changes like the ones I’ve been going through over the last six months. Plus, to date, I can’t think of a single medication that I have actually suffered side effects from. I’m a great believer in the don’t read and it won’t happen school of thought. I’ve never read those horrid lists and I’ve never once had the slightest feeling that anything odd is happening to me. So hopefully, three months from now, scans and tests done, we will know what has been, and is happening to me.

 

Please read my blog from 2 years ago today – 17/02/2015 – Ignoring my disability

I started peeing for Britain yesterday evening, I had noticed over the last few days that I haven’t really been going to the loo that much, but I have been so wound up about the other end, that I didn’t put that much thought into it. Adam had taken an early shower and just after he stepped into it, I knew that I needed

The flow of one life

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…..

Domiciliary dentistry

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

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…..

It still hurts

If there is one thing that living with chronic illness that we become good at, it’s dealing with loss. Loss of friends, work, hobbies, families and even those we thought would be with us forever. Loss goes hand in hand with illness and some of us get so used to it, that we see it as something we are actually good at. Quite often when we lose something, we can replace it, and often that replacement turns out to be even better than it’s original. But I guess that all of us have one thing that is just too painful, too big for us to ever replace, or ever get over. In some ways, I am lucky, as that one thing for me, only comes around once a year. In others, I’m unlucky as there is absolutely nothing I can do to avoid it, as whatever I do or where ever I look it’s there. Well, how do you avoid Christmas?

Christmas for me lasted four months, from the point it was time to bake the Christmas cake and pudding, to the last chance there was to buy cut-price decorations, cards and wrapping paper that the shops don’t want to store till next year. Actually, it didn’t even really end there, as I bought present all year round, whenever I found that perfect thing for each and every person I knew, I squirrelled it away, this, that, and everything that said Christmas and I did it with love and total joy on my part. Then came my last Christmas, the last chance to give all those gifts, to enjoy every second of decorating my home and making the whole season special in every way. All of it was taken away and there was nothing to replace it.

For those who can’t quite see how my health stole Christmas, well it’s easy, it did two things that ensured that Christmas was over. First, it took my ability to work and therefore the money I needed to spend on all those parts needed for the big show. Then it stole my energy, my dexterity. I could no longer spend days decorating every room, setting our all those thousands of lights and ornaments, putting together those tiny details that turned our home into a Victorian tableau, but one better than any Victorian could ever have even dreamed of. It was designed with the exacting perfection, every ornaments placement and angled perfectly for a viewer’s eye. Days of planning, days of work and years of collecting all gone, just like that.

The first year that I knew I could no longer do all that was needed, I thought I could manage a scaled down version, but scaling down, just didn’t work, it wasn’t right and every second that it was wrong, hurt me. A scaled down Christmas was worse than no Christmas at all. The second, I let Adam do all the work, while I sat there like some kind of short-tempered director, being driven mad by a performer who could never deliver their lines, in the way they were in my head. Followed by my secretly spent hour after painful hour, trying to make the surface correct, even though the correct foundations were missing. The third, I banned Christmas, not even one single tree, nor a single ornament was unpacked and I found peace. My home as it is, without Christmas was better than a pale imitation. Yet, here I am on our fourth December without Christmas, and I can still see every single perfect tree, even without closing my eyes. Just as an amputee still feels their toes, I can still see Christmas around me, just as it should be at this stage of the month, everything done, everything complete, parcels completed with decorations all of their own, concealing there equally perfectly thought out gifts, all just waiting for the big day.

I coped when I found that I could no longer work. I replaced all the things I lost, one by one I could manage but all these years on, I still miss Christmas and there is no replacement, there is nothing that can take its place, nothing that can even come close. How do you ignore something so big, something that is on TV from November onwards? How do you replace something that is irreplaceable? If it wasn’t bad enough that I’m being forced by my health to live without it, I’m also being tortured by the world, telling me just what I’m missing every second of the day. And worse still, I feel like Scrooge, because I’m taking Christmas away from Adam, just so I can hold onto a little sanity throughout this month of the year.

Chronic illness sucks. It sucks in so many ways including the odd ones like this that aren’t directly the fault of my health. People try to understand when it comes to our bodies letting us down, but they don’t understand, when it something odd like this. I’ve been told that I’m being silly, that not everything can be perfect any longer and that I should accept it as it is. Well here’s the crunch, I’ve accepted it throughout my illness, my home isn’t perfect any day of the year, but Christmas is big, it’s flashy, it’s amazing and for me, it has to be perfect, otherwise, it’s not worth doing at all. We still celebrate the day, like all we eat too much good food, but now, it’s just the two of us. No gifts, no crackers, no table perfectly set with candles set among crystallised flowers, everything that the modern world and my brain says belongs as part of Christmas, are all missing. What we lose, isn’t always what others see. What we lose is often far more personal and completely invisible, and somehow, because it is so personal, it hurts even more.

 

Please read my blog from 2 years ago today – 06/12/2014 – The past is never buried

I am sure that I am not the only person who has found themselves with a strange desire to do something, but when thought through, well it just seems stupid. Yesterday after I had finished my post I once again had this desire to email my old agent from when I was a DJ. I was triggered a couple of months ago…..