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

Avoiding the gaps

I used to find this so easy, I would just sit down here and start to write. The words would flow and I never felt as though I was even thinking, it was a flow of words from where I had little idea, they were just there, they were always there. In the past week, I have sat here three times and tried to write and on each occasion, there has been either nothing or just a rant, about the building work going on downstairs. As much as that has dominated my life for the past three weeks, writing about it wouldn’t really supply anyone with something of interest to read. It wasn’t until yesterday, that I started to understand why I am suddenly finding all of this so hard.

I know that I have often written about the issues that I have had over the years with both my memory and the problems that it causes when I try to talk. So far, I have been able to think with amazing clarity, my problem has been when that thought has to be turned into either action or spoken words. Millions of trips into rooms with no remembered reason for even going there, and even more hours filled with stutters or silences, when words totally vanished on me. Yet, I could both write and think with a fluidity that never let me down. How? I never managed to work that one out fully, it just was, and I so loved that it was. It allowed me an escape into normality, the way I could see existed for others. It appears that that has come, or is coming to an end. I can no longer even think clearly, almost all my thoughts are now stuttered and paused with gaps where I can’t find the next word. Even that narrative that we all have going on in our heads, has become like any other conversation.

For a long time, I thought the reason for the difference was that I wasn’t under any pressure when writing or just thinking to myself. I didn’t have to be understood or to think quickly as we all are when talking to another. When writing, there was no one there at that second who would read my words, nor was there someone inside my head to see what was going on there. Yet now, even when in that state of no pressure, I keep falling into a muddled spiral that gets me absolutely nowhere. It hasn’t stopped me trying, but trying is never enough, we all aim to succeed and when we don’t, well the pressure suddenly appears, all applied by ourselves. The more it went wrong, the worse it got, until I found myself with no memory of what I set out to write about in the first place.

It took me a while to work out why I could manage to write about the builders with a greater ease than anything else. It was simple, I could hear little else other than them, and their constant noise was like a dictation machine, feeding the words to my fingers. With any other subject, there were those nagging silences, the gaps that required me to reread, rethink and try again, just as I am now. It doesn’t seem to matter how rested I am, how relaxed or how silent the monsters in the flat below are, my brain just isn’t working the way it did, just a few months ago. The only time I am free is when I’m asleep and trust me, I am also getting far more of that than I ever did before. In fact, even on the days when I have my alarm set for 10 am, I switch off the alarm and struggle to get up, often drifting back to sleep. No one needs more than 13 hours sleep a day, no one except me.

On the good side, I, at last, have an appointment with my neurologist, I will see him on the 14th of this month. On the bad side, that means another trip out in an ambulance and all that brings with it. My health has changed so much since I have last seen him, well it would over ten years,  but the worst of the changes have taken place in the last 18 months. Because I keep myself constantly up to date with what is happening in the MS world, I have a horrid feeling that he will not be able to help in any way. At the best, he will send me for updated tests and possibly change or add to some of my meds. At the worst, he will do his normal, smile and ask me if I would like to come back and see him in a year. To be honest, I quite simply want to put my mind at rest over some of the things that have become part of my life, like the issues I now have with actually being awake.

Also on the good side, I am totally in love with my Charcoal toothbrush and the Charcoal tooth powder. The difference that the brush made was clear to me within a couple of days. My whole mouth feels cleaner and teeth feel squeaky clean at all times just as though I am seeing a hygienist every day. When the powder arrived a week later, I started using it after lunch every day. It’s not quite a week yet that I have been using it, but I can clearly see a difference already. Even stains that have been there for years are slowly disappearing and my teeth are without a doubt, whiter. So if you haven’t yet, go and buy both, they are amazing.

I’m sorry, my brain has had more than enough for now. This has taken three hours of writing with two half hour breaks and one of over 13. If my brain doesn’t return, which is something I hope it will do, I am going to have to find a new way of writing, as I don’t want to give this up. I see it as an important record of how this illness really affects me and I don’t care what happens, I’m going to keep it going.

 

Please read my blog from 2 years ago today – 09/02/2015 – It’s time for change

I woke last night once again with intense pain in my back, this time it was so bad that I had to reach for my booster pills, it’s the first time that back pain has made me do such a thing. I know that it is stupid and that they were prescribed for dealing with pain, but I have them linked so tightly to my PRMS and COPD…..

The problem with green penguins

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

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

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……