Category Archives: Neuralgia

Telling the truth

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I don’t remember when it happened, it wasn’t like there was this sudden revelation or I even made a true decision about it, I just know that it happened. Some might say that I gave up, others that I saw the truth, I’m only sure of one thing, it’s not the first and I can’t prove the second. I’ve been ill for over 30 years now, most of it unaware of what was wrong with me, just with this knowledge that there was something wrong, something seriously wrong, but no one else agreed with me. I was left to just get on with life, to make the best of the way my body was and to do what I could, to make my life the best I could. Personally, I don’t think that I made too bad a job of it. When things were bad, I even found the money to go to the homeopathy hospital, but after 5 visits, nothing had changed and the money I had saved up, was running thin. I had a simple choice, get on with living or starve. Eventually, when I did get my diagnosis, I had the most amazing collection of reactions to it. I knew that I had just been handed a death sentence, but on one level, I was overjoyed because I had been right all along. What I didn’t expect was that there was no cure, no operation, nothing that any doctor could do for me, other than palliative care. I had for all those years believed that the day they could tell me what was wrong with me, would be the day they would start to cure me. When they couldn’t, I searched everywhere that I could for an answer, for even the slightest clue that there might be an answer one day, all I had to do was hang on.

I’ve been hanging on now for 15 years and not a single advance that has been heralded as the miracle cure will ever be of the slightest use to me. In fact, I no longer even read the write ups with any hope, I only read, so that when all those wonderful caring people out there, send it to me for the hundredth time, I can comment on why it won’t help me. As I said, I don’t know when it happened, or if there was a decision involved in any way, but I no longer even look for a cure or even anything that might improve how I am. More than that, I no longer even have any hope that the medical world will be able to help me, any more than they do today. I expect that I’m not alone in reaching this point, I suspect that there are many out there silently living exactly where I am. We feel we have to be silent, as we believe that our loved ones and those who don’t know us wouldn’t understand, that they might see how we feel as us giving up, but it isn’t. I haven’t given up on anything, other than false hope.

Hope is a wonderful thing as it gets us through some of the worst times in our lives, but it’s only useful when there is something to base it on and something we can believe in. I don’t remember when I stopped looking for what wasn’t there, all I know is that it was before I became housebound. Somewhere inside me, deep inside me, I woke up to a truth that had been staring me in the face from day one, reality. The reality of being given a diagnosis of both a rare and incurable condition, that the fact is, the likely hood of anyone coming up with a cure is slim, very, very slim. In the case of MS, nearly all the research and therefore all the breakthroughs are in RRMS, the one that the majority of people have. The rest of us, well we are the forgotten, the ones who if it works for RRMS, they will try it on, just in case it might help, but normally, it doesn’t. Right back when I was diagnosed, they said there was no point putting me on any of the MS drugs, as not one of them would help me. It took a long time for that reality to reach my brain and when it did, I felt I couldn’t talk about it.

How do you tell those who love you, that your no longer going to even bother reading any of those sites who claim they might be able to help. That you don’t even want to hear about drugs they have just discovered that have helped some others in tests. In fact, you quite simply want to scream, when you hear it on the TV because you know without hearing anymore, that the truth they aren’t saying, is it won’t help me. Once any condition has been in your body for 30 years, once it has taken you to the point where you are housebound, in a wheelchair and have lost control of most of your insides, there isn’t time. Any drug has to go through years of testing and development before, it would even reach the likes of me, and I don’t have all those years to wait. That’s the reality that too many of us live with in silence, because if we were to say it, whoever heard it, wouldn’t hear our truth, they would hear “They’ve given up”. Well, I haven’t, just read my blog and you will know I haven’t. Giving up is something totally different. This is about living without false hope, about living with the truth and being at peace with it.

It took my many years, right up until the last couple, for me to feel that I could talk freely with Adam about all of this, without him taking it wrongly. I used the news of some “breakthrough” that was announced on the News as my root into the conversation and because he could see both my anger and my feelings clearly, he also saw that I was still fighting but with real life, not some dream that might never come near me. I get angry every time some announcement is heralded as the possible cure for any condition, it makes me angry because, without a doubt, it will build false hope in so many. To me, that is cruelty, especially, if it were to be heard by a child of someone who is dying, they wouldn’t understand it at all.

Trust me, if my doctor phoned me today to tell me that there was a new drug he wanted me to try, I would, but I’m not holding my breath. I’d rather enjoy the life I have, for as along as my body will let me. Free of worry, free of searching and free of all false hope.

 

Please read my blog from 2 years ago today – 16/08/2014 – Video’s, tricks and talk

Well, that is it done! Yesterday went rather as I expected, it took far longer than they said it would, that was one thing I was prepared for, I had it worked out in my head as taking about two hours and Sophie was here for two and a half. What didn’t go to plan was that her video camera died after 20 minutes, the other hour and half was recorded along with lots of note taking. Although it was all for this new…..

Holding on?

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It doesn’t happen often, but there are days when I find myself asking questions, probably the same questions I know others ask of me, but when they come from inside, they mean more. Don’t take that badly, I’m not putting anyone out there down, but we all know, that those silent questions are always the most powerful ones.

There isn’t a certain time of day, or a feeling, place or set of circumstances that triggers them, they just appear when I least expect them and without any warning. Bang, there it is, one of those damned questions. Todays appeared when I was taking my lunch out of the fridge, Vegetarian Mousaka, I wish I had eaten the packaging as it looked far better than the contains did, and probably tasted better too. I was searching for the use by date, then that question  appeared.
“What is it that keeps me going?”.
The first answer was easy.
“Definitely not the food”
Then I started to really think about it, to answer what had appeared from somewhere back there in the muddle I call my brain.

I’ve been here in this flat now for 9 years, a length of time that if you are honest, I bet you can’t even imagine spending in your home. Never going out, not even to get the air. Your world is the space you call home and there is nothing else outside of it, that you can get to. 9 years, it’s a long time. Yet looking back, I find it almost impossible to believe that it could possibly be that long since I last opened my front door, and walked out into the street. Of course, I have been out, I’ve written about that many times, those trips to the hospital, but even then, I don’t make it on my feet, I’m strapped in a chair and guarded by ambulance attendants. Those trips feel far more like being transferred from one prison to another, just to be brought right back again. But my home isn’t a prison, it’s never felt that way, my prison is my body, not the place where it lives. I guess that’s the first answer, I love my home, I love what I see daily, how it makes me feel and the feeling of safety and security that it gives me. I doubt there are many prisoners who would describe their jail that way.

I guess, I don’t really even see my body as a jail either, how can I, it’s the same one that I have lived within since the day I was born. In that regard, I’m as free as you and everyone else out there. Within my world, there is one other constant, my husband. Just like my body, he has been here throughout this phase of my life. There are two clues wrapped up in the last sentence. My husband, who to anyone who reads my blog will know that without him, I would be isolated and totally alone. Yes, there are others now, my nurses and carers, but they are new to this madness. Adam, is my one constant, the one love that lifts me through all the bad spells and makes me laugh and smile on even my worst days. No, I wouldn’t want to survive without him, but that’s a totally different question.

All our lives are broken into phases, not just childhood, teens and adulthood, as they have many, many phases mixed up within them. Some of them cross over each other, and some are totally isolated by the power they have over us. They are made up of relationships, jobs, hobbies, likes, and dislikes. Take my health, they say it started back when I was 21, but they didn’t diagnose it until I was 40, just two years after marrying Adam. During this phase I have been married, had children, got divorced, had three totally separate careers and married again, following three failed relationships. Phases, that intertwined, yet some remained separate in many ways. As we move through those phases, we grow, become more mature and have a deeper understanding of life. All of it makes us the people we are, so for me to give you, or even myself, one defined answer as to how I survive, would be impossible, but I do have many clues.

I survive because I haven’t changed, it’s my life that has changed and it did it so slowly, I grew used to where I was and the fact that I couldn’t be anywhere else. From diagnosis on, I went into a nine-year long nest building phase. I spent all my spare money and time, making our home as beautiful and as comfortable as I could. My working phase of my life overlapped the first three years of being housebound. I had time to adapt, time to adjust and I didn’t even know I was doing it. Two phases ended, but I still had the constant of Adam, the anchor that held me steady while I built the phase I’m in now. Content, housebound, writing and happy. I got here, without even knowing it. I survive because I am here and I now can’t think of a single place that I would rather be. I know that might sound odd to you, but to me, there is a logic there, as if I didn’t feel this way, I would go mad, I’d fall into depression and I would probably end it all. I survive because I have all the things that it takes to make a human happy, right here where I am. To the modern mind I know that’s hard to grasp, but to our ancestors, it would have been easy. Think back to a time when people were born in the village where several generations of their family were also born and spent their entire lives. Not once leaving for any reason, because they couldn’t see anything out there worth leaving for. They didn’t leave because they were happy just where they were, just as I’m happy just where I am.

I have become so content in the space that I live, that I can’t even tell you when I last even looked out of the window. There is nothing out there that I long to see or want to be part of any longer, why would I, as I have everything I need right here. Unlike my ancestors, I have the benefits of the modern world, which actually make it easier to live an isolated life. Entertainment is at my fingertips, the world is there too and when my health is up to it, I can join it and chat to whoever is there. I don’t need physical people here in front of me, to have company when I need it, I just open my PC and there you all are. What keeps me going is all of this, plus a lot of magic from the medical world. There is one other thing that I haven’t mentioned, and that’s a zest for life. No, it doesn’t die just because we are doing so. As my body fails me, it tells me there is still much to do and how can you give up, when you haven’t finished doing all those things still to come. I keep going, because I want to see what tomorrow will bring, good or bad, I haven’t seen it yet and I want to, and as long as I or you have that need, we will all keep going, where ever we are.

 

Please read my blog from 2 years ago today – 14/08/2014 – Too much

I hate the day before anything, be it Christmas, visits or interview, the day before is the day you wish just wasn’t there. Last night Adam was once again concerned about the whole thing, he thinks it is great that I have been asked to the interview as it shows that all I have written here is having an impact but he worries about the length of time, an hour sitting talking is a long time for me, especially……

So wrong but so right

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I’ve spent today being wonderfully lazy and enjoying every single second of it. Why? Because for the first time in the last few weeks, I am relaxed. Last night, for the first time in just as long, I also slept the entire night without waking even once to go to the loo, or from pain. I don’t think I realised just how stressed I had become and how far the relief I described the other day had gone. Despite the fact that I had a bad day yesterday, it didn’t even get to me, I made my way through one thing after another, without the slightest tension and with a smile on my face.

I had woken yesterday morning with the all too familiar pain of my diaphragm being in spasm. It has been bugging me for previous a few days, just like my bladder, it doesn’t appreciate it when my intestines are over full and causing undue pressure on it. My breathing has been a little on the rough side but like everything else, I just get on with it, taking the occasional reading of my oxygen levels, just to be on the safe side. At it’s worst, it has dipped into the low 80’s and its best I managed to peak at 95. I’ve learned to deal with it by keeping my breathing shallow by steady, as long as I don’t panic, I’m OK. I learned that one years ago, as I used to naturally panicked every time I couldn’t breathe, just as anyone would, and it always made things worse.

The pain I woke with in my left side refused to go away and by the time the district nurse arrived, lying on it so she could administer the enema, was pretty unbearable. Even when I sleep now, I remain flat on my back as my body has learned the hard way that rolling is best avoided. For those who don’t know, when you have an enema, you need to lie on your side for as long as possible, to allow the liquid to do its work. Normally, I am able to stay there for at least ten minutes, sometimes, I have to twist myself so that I am still on my left hip, but my shoulders are flat on the bed. My body didn’t want to play yesterday, I hadn’t been there for no more than a couple of minutes when my intercostal muscles started going into spasm. I did all I could to stay there but the nurse could see that I was struggling and after a couple more minutes, she pulled me up to a sitting position, as clearly, I needed air. The disappointment that I felt was huge. I was so sure that it meant that the whole thing was going to turn out a total waste of time.

When the nurse left me, I was sat on the toilet, doing what I could to hold onto the liquid, but listening to it dripping into the pan. The one good thing about sitting there is that I can put my arms up onto the grab rails on either side of me, with them being slightly higher than my shoulders, it has the effect of forcing my ribcage into a more open state, one that it can’t really fight. The enema had failed, nothing other than the liquid left me. All that pain, all that extra stress had been for nothing.

When the carer arrived at 4pm to help me have my shower, I had been to the loo twice more, but still, it was just fluid, nothing more. I did warn her that I had been losing fluid uncontrollably, and I apologised if it should happen while I was in the shower. As I stood, so she could wash my back, I felt something sliding in my back passage. There was no way that I was going to embarrass myself, so I locked my buttocks as tightly as I could and said a silent prayer. As soon as I was out of the shower because I was so worried by it, I placed my pad between my legs, before we left the bathroom. My muscles aren’t the best most of the time, but as I was pulling on my trousers, I felt what I had held onto so tightly, slipping again, this time I was sure that I had lost something, but it wasn’t much.

At first, I thought that I might just be a better actress than I thought, as the carer didn’t appear to pick up on my plight as she continued to dry my feet and apply some cream. Then the smell reached me and I knew that it had reached her too. She gently said, “Pam, do you want to head back to the bathroom?” She was wonderful, she didn’t bat an eye and just took me back into the bathroom and let me go to the loo by myself, before helping me by holding open one of the disposal bags for my pad and the wet wipes. She was so nice about the whole thing and just carried on chatting as though nothing had happened right through to our good byes. The way she handled it, left me feeling still somewhat embarrassed, but not mortified by it all. When she left, I found myself once more in need of heading to the loo, this time, my muscles held until I reached it. I don’t need to describe it in any other words than to say it was rather explosive. Five hours after the enema, and suddenly, it worked. Even though I had had an accident, I am so glad that the majority waited, as I don’t think I would have lived down that embarrassment. My body may have been working against me, as it always does, but for once, it saved me from the worst possibility.

By the time Adam came home, I was perfectly at ease, as though nothing had happened all day, other than me sitting here as always. For once, it wasn’t an act, I was at ease. This is how I was about four months ago before the flare that set me on the headlong course into carers, nurses and so on. It isn’t just that I have people around me who care, it’s more than that, I have at last accepted them as part of my life, no longer an intrusion that I have to bear, but people who are glad to help me and who’s help I’m glad to have. They have now proved to me that I am still in control of my life and they are here to do whatever they can to make my life easier, not harder, which is how it first felt. So OK it has taken me over two months to accept them, but just like when I accepted my health, now that I have, I expect that life is going to be easier from here on in as well.

 

Please read my blog from 2 years ago today – 12/08/2014 – An impossible life

I found another bruise last night, I had been in pain on my left side for a few hours and when I went to the loo before getting my meds I checked it and yes there was a new bruise. I am still holding to the 8pm slot for my meds and as the BBC normally show a news bulletin at 8 I am trying to lock my trip to the kitchen at that point. I have noticed over the last few days that taking my meds…..

Angels do exist

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I can’t believe just how different I feel from a couple of days ago, to today. There are two people that I really need to thank for it, and both of them are district nurses. I didn’t realise that when I agreed to haveing the enemas done that I would find two such angles amongst those administrating them. Yesterday, the nurse who I think is the boss of the whole group was here and she has not put my mind at rest totally. Even though I knew that I didn’t need a catheter right at this minute, the whole thing about calling for help if I had problems was still bugging me. Anyone who has been reading for a while will already know the palaver that leaving the house and going to and from a hospital is, and although I had been told that I could call NHS 24 who would probably call one of the district nurses out, there still was a huge issue niggling at me.

The district nurses who come to see me, work out of a local health center and although they have a range of different things to hand, it isn’t like a hospital where everything for every possibility is there just waiting. If they did get the call, it would depend on my luck if they could help me or not, simply due to what or what wasn’t, in the store cupboard that day. I might still land up finding myself sitting here waiting for them to find either an ambulance with a stairclimber or a four man crew, to get me down all the stairs to the street. Getting there is usually the easy part, hopefully, made easier due to it being an emergency, it’s getting home that is the nightmare. I could be waiting for hours just to get home again, the worst to date was 7 hours. I didn’t need to explain this to the nurse here yesterday, she was very aware of the horror stories, it was then that she suggested the most logical thing yet, that has been said in this whole thing. She asked if I would like her to order a kit for me, so that if I couldn’t go to the loo, all I had to do, was call them, and someone would come to my aid, knowing I had everything here waiting. As she said, “if it never gets used, it doesn’t matter, it’s there just in case.”

The weight that lifted off me was far greater than I realised when she said it. It was just two weeks ago that I found myself sitting in the kitchen chain smoking and in tears because my bladder hadn’t emitted even a drip for over 10hours. I wasn’t in pain, but I was dreading the outcome, that was becoming more likely by the minute, that call that might have just found me once again at the mercy of the ambulance service. Until we get my bowels working to an acceptable level, it is something that could happen again with ease. When I told Adam later that evening that they were putting together a kit for me, he admitted that he too had been worrying about just the same thing. He has suffered alongside me on many occasions, and he knows as well as I do, what the effect on me is. I hate to say this, but it is so rare to come across someone in the NHS who works on logic, not procedures. I really feel that I have found a group of angels, who are going to do whatever they can to make my life easier. Although I haven’t yet spoken to them about it yet, I know from the little they have told me about their work, that they are also the people who will be with me through to my end. They provide the palliative care that I was so lost about months ago.

Actually, the whole plan that I was putting together stalled, when I found out that Jefferys’ grave, was in my ex-husband’s name. That is now all sorted out and the grave deeds have been transferred into my name. I don’t know why I haven’t picked up from where I left off, but I didn’t. I guess there was so much going on when the corrected deeds returned from Aberdeen, that it all sort of landed up shelved. I know they say that when you don’t carry through a plan, it’s because you don’t want to, that’s not the truth by a long shot. All those who matter, now knows my wishes for what happens after I die, and that I have found the funeral directors who actually have the package that I want for my funeral or “none funeral” would be closer. I just need to make a phone call and get the whole thing set up and paid for.

We do now have the whole issue of carers sorted out and we have made our first contacts with the social work department, so we are moving forwards with other pieces of what will happen as the end get’s closer. It’s just things haven’t quite happened in the order that I had them planned in, but that’s life I suppose, best-laid plans and all that. I guess when I started this post by saying that I am in a very different place from just a few days ago, is the reason why I once more feel that I can even think about my plans. I have been in a constant state of flux for a long time really. I’ve moved forward one step and found myself going backward before I even noticed. I now feel that I have the right people around me, so if anything else tries to knock me over, they are there to help me get back to the surface again, and that’s something really special to have.

 

Please read my blog from 2 years ago today – 10/08/2014 – No friends

It’s one of those rare Sunday’s, I am typing in peace, no snoring from the settee as Adam has actually decided to sleep in our bed. I really shouldn’t mock it has been several years since he chose to start sleeping on the settee just so I could get the undisturbed sleep that is essential. At first, he would sleep here until I appeared and then head off to the bedroom, but slowly that stopped, he…..

Brain buster

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They say when you watch something, it never does what you’re looking for. Well, mine eventually did. I’ve been staring at the phone on my desk, willing it to ring, for the incontinence nurse to call me and let my know what her boss said. When she did, you would have thought that she was reading out the results of some sort of competition, giving me all the points that they took into consideration, before just telling me what I wanted to know. They have looked at all the scan results and my history and present problems, especially those being caused by my intestine and bowels and for now, they don’t think that I need to have any form of a permanent catheter. What they want me to do is to be careful to be sure that my bladder is as empty as possible whenever I go to the loo. This means that I have to double void each time. For those who don’t know what that means, I have to stand up and move away from the toilet for a minute or so, then return and try again. I also have to use a method I have already been using for years, to rock gently side to side and back and forward, which as I knew already, makes the urine move out of it’s hiding spots and out of me. They believe that if I continue to do this, I should be alright until the problem with my bowels is sorted, when hopefully, the problems should lessen. She once more added that if I do find again that I can’t empty my bladder, then I must call for medical intervention immediately.

I didn’t tell her, but when I spoke to the district nurse on Friday, I had talked through with her, the reality of implementing her final point. She was just as I dumbfounded by the idea of calling 999, within minutes of finding I couldn’t empty my bladder. We talked it over and quite rightly she agreed with me that that was just not a viable plan. I can with ease sleep for 13 hours without once getting up to go to the loo. Therefore, my bladder, nor I, am in any type of danger for that length of time. That is, of course, as long as I am not in severe pain. As she said, I’m not stupid, I will know in myself if I need help or not, but maybe that guideline of 13 hours, should be my max. I am also not stupid enough to leave it any longer than that, as I am well aware that urine can turn toxic to my body with ease. Which is a problem for anyone, but for someone like me with a compromised immune system, something I need to be careful about constantly, hence the double voiding. Should I feel at all that I need help, then I should call NHS 24 or my doctor for help. There should be no need for me to be dialing 999 unless I know something is horribly wrong. Both NHS 24 and my doctor would be able to send out a district nurse armed with a catheter to my assistance. After that, well then we can talk it all through again and possibly include a detailed chat with a urology consultant.

I have come to the conclusion that the continence nurse who has been coming to see me, just likes to scare people. There was no need what so ever for her to have worried me the way that she did. She could quite easily have left here without saying a word about permanent catheters at all. Returned to her place of work and talked it through with her boss, then telling me, exactly what she did, when she phoned me. If she had done that, then I wouldn’t have landed up feeling as I did and I would have had a much better end to my week. I have learned one lesson from all of this, should I see her again, I will not let myself be wound up until she has checked her “thoughts” with someone else first.

I have to admit that I have been lucky and I haven’t come across many like her. On the whole, the medical profession has always told me their thoughts, but done so in a way, that it felt like they were imparting information, not telling me that there was no other option when there was. Just like the consultant who I saw about my bowels, he laid out all the possibilities, what they could and they couldn’t do and what they thought needed to be explored first, hence the enemas. Even though I left there knowing that this was the last possibility, but at the end of the day, if I couldn’t cope with it, the final option was down to me, I could request a stoma. When I left there, I felt a little shell-shocked, but I didn’t feel as though I had lost control. In fact, it was the total opposite, and it left me with a new problem, when and how to make that decision, and I still don’t know how to do that.

It took me many years to realise that the medical profession doesn’t have all the answers. What they have are possibilities. In an emergency, they make the decisions for us, but when it comes to those things that aren’t going to kill you in the next ten minutes, the choice suddenly becomes ours. No one can do anything to you without your permission, that’s clear as you always have to sign those disclaimers, but there are times when you want them to tell you, not suggest to you. About three years after I was diagnosed, my health was so bad that my Neuro offered me chemo. It was all explained to me, how it would affect me and most importantly, what they expected it to do for me. What they were offering me, was a way of turning back time, they could say how well it would work, or if the results would be long term, or just short, but it was the only option there was. To me, that was an easy choice. Without it, I was heading downhill so rapidly that I would have been a vegetable long ago. It didn’t feel like a choice, it was a no-brainer. Everyone wants to live, to be able to function as a person. I wasn’t going to say no, if I had, I would have hoped that they would have sectioned me and done it anyway. Where I am now, is totally different.

If the enemas work properly, they will not only move the faeces out of my body, but they will remove the pressure and pain that I live with daily. The short spell I had last month when it appeared it was working, I found a new appetite for food, I could breathe with far more ease and both the pain and pressure were gone, even my mood improved. It was wonderful. Now, we’re back at the start, it is as though none of it ever changed. If I have the stoma, well it removes the problem of getting rid of the faeces, and hopefully the pressure, but there is no guarantee it will change the pain in any way. The pain is caused by my nerves and removing them and my intestine, might not change the pain at all. I will also spend the rest of my life with a bag attached filled with poo. How do you choose?

This week, we’re stepping the enemas up to three times a week, if that doesn’t do it, I could have them every second day. How many weeks or months is a fair trial? What if they never give me the result that I want? Am I asking and expecting too much? When do I say enough and if I do, will I be any better off? This isn’t a no-brainer, this is a brain destroyer.

 

Please read my blog from 2 years ago today – 08/08/2014 – The small things

Once again I crawled off to bed at 8:30 and slept all the way through, which of course leaves me with a problem as to what my new drug routine is doing, as every night I have taken my drugs later, I have gone to bed early. Now that doesn’t make any sense to me at all, surely not taking my drugs should make me want to go to bed later not sooner, as I have shifted my routine and once……