Telling the truth

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?

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

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…..

Emotional overflow

I found myself sitting here falling into floods of tears, for what feels like no reason. I was fine until the district nurse called, it was the one that I really like, although I can’t tell you her name, so nothing new there then. She was the one who came to see me first, to talk through the whole process of them coming here to give me eneama’s and to help me with the problems I had then recently started to have with my bladder. I have seen her a couple of time since then, but following that gap and after the news I had from the continence nurse the other day, I decided to update her. When I started to tell her about the possibility of having a permanent catheter, the tears suddenly started to flow. I didn’t expect them, as there hasn’t been a single one until then, but with the door opened, they have just kept reappearing without permission.

All of this intervention and changes that are underway with my carers, plus the feeling that I am losing more and more of my abilities to live normally, just suddenly became too much. I know that right now, nothing is definite and in many ways that in itself, is making it all the harder. Right now, I would love someone to just say this, this and this are happening and it will all be done by such and such a date. As I said to the nurse, I hate the fact that it is up to me, to make the decision as to if or if not I have a stoma. All this fiddling around with eneama’s which work sometimes and not others is starting to get to me. If it were as simple as them pushing the liquid in and I sat on the loo and everything just left my body, then great, but it’s not. Again today it failed, nothing other than a couple of tiny blobs that must have been sitting low in my guts. The bulk, the bit that has been sat there for two days, causing me discomfort and even pain, didn’t shift at all. Of course, we didn’t know that was what was going to happen when we were talking. She had asked me if I had an appointment to return to the hospital, which I don’t, I told her that as far as I knew,  it was now up to me. If we didn’t get a result with the eneama, good enough to leave me comfortable, and if I decide that I can’t handle things any longer, then I will request a return appointment, to give the go ahead with the stoma. She said that she was going to check the letter from the doctor, as she said that she felt that there should be some kind of follow-up.

Having gone through all the disasters of the eneama’s failing, and the fact that I am still finding myself no further forward in getting rid of the pressure and the pain, I agreed that it was time to try a change. Although it was something I don’t really want, from the point of view of having space in my life for other things, like being me, we’re stepping it up to three times a week. Monday, Wednesday and Friday, if that fails, we’ll go for every second day, which is what the consultant wanted, but not my GP, the district nurses, of myself, who all felt that was just too much. We have to try everything as a stoma, is the final step, one that I don’t want to take, if, something else could mean I could avoid it. As I said the other day, I believe that my bowels are behind my bladder not wanting to empty, so it could be a fix for both. No, I don’t want a permanent catheter either, if it can be avoided.

When she left, I was still lying in my bed, with tears rolling down my face. It was me who told her to go, I felt able to get off the bed and to go by myself to the loo. Keeping her there, felt like another pressure that I didn’t need, as I knew she had many other people to see. She double and triple checked and assured me that if I needed her to stay, she would, but with her gone, the tears then flowed freely, without the restriction that I was putting onto myself, of not wanting to cry in front of her, for what felt like no reason. I lay there for about another ten minutes before heading to the loo. I already knew that nothing was going to happen, I had had the eneama inside me for twenty minutes and I felt nothing. I pulled myself together while I sat there on the loo and told myself to stop being so stupid. It kind of worked, if two or three times an hour escaping liquid running down my face, could be called working.

I don’t know why I suddenly feel as though I am under pressure by all of this. It’s not like anything has really changed. Maybe, it is a psychological change that is needed. Maybe, I need to start seeing my eneamas as routine, not as something that is there as some sort of demand to perform. I’m not stupid, I do realise that it is the fact that I have the final say when it comes down to the stoma, that is getting to me. I so wish someone else would stand up and tell me what to do. I just don’t feel that my mind is in the condition to make such a huge decisions, as it feels like it should be a purely medical decision, but I also see that it can’t be. The continence nurse saying there wasn’t a safe amount of time to have a bladder that didn’t want to empty, hasn’t helped either. There must be a point when it changes from safe to dangerous. I don’t want to call for an ambulance for my bladder to suddenly empty by itself when I reach the hospital, just as it suddenly let go other night. I don’t want to even have to go to the hospital at all.

The district nurse phoned me in the afternoon, as she said she would. What I had said was totally correct, the decision about the stoma is all up to me. I admitted to her that I am at this second in pain from my guts, she rightly said to me that it’s a long time to Monday, so one of them is going to be here tomorrow, to try again. Maybe tomorrow, it will be totally different. Maybe tomorrow it will work, and maybe tomorrow I won’t have to worry about all of this ever again, which tomorrow that is, I don’t have a clue.


Please read my blog from 2 years ago today – 06/08/2014 – I’m still here

Everything has to be rushed this morning as Teressa and John will be here around 11am, they are coming for lunch today as there is some show that neither Adam or I have ever heard of, but apparently has been running in Glasgow for around 20 years, that they want to go and see. It is always the way……

When it rains, it pours

Yesterday, the incontinence nurse appeared at my door. I had a memory of her saying she would be back, but I had forgotten totally the date she said she would actually be here. When the doorbell rang, I was totally surprised as I was in the middle of changing my trousers having just spilling egg yoke all over them. I used the last few seconds I had before opening the door to ensure that I didn’t have my top caught up in them, something that happens frequently. Pulling up trousers and so on, isn’t the easiest things to do one handed. If I’m not holding onto something, there is a huge danger of losing my balance when contorting my body to achieve the desired results. She was here to once more scan my stomach to see if my bladder was holding onto fluid, or behaving itself and emptying. She had previously done two test, both through in the morning, this was the first in the afternoon.

I had told her when she was first here, that I found it easier to empty my bladder in the morning, as I had taken my frusemide then. She didn’t seem to get the connection, but when the drug pulls the excess fluid out of my body, I then have a bulk to get rid of. The force of the quantity always seems to make the whole process easier. Later in the day, especially in the evening, I have to spend time relaxing and concentrating on the whole process, but frequently pass nothing more than a series of dribbles. This was exactly what happened when she asked me to go to the loo, and I wasn’t in the slightest bit surprised when she found that I had held onto 198mils. While I was lying there on my bed, covered in gel, I asked her a question, “How long is it safe to go if you can’t empty your bladder?”. She seemed somewhat flustered by the question and said that she had never been asked that before. So I told her about what happened a few nights ago, I quite simply couldn’t empty it and had even been wondering about calling the district nurse for their help, as I had gone from around 4pm right into the night unable to pass anything, other than the odd drip or dribble. I had woken several times during the night as it wasn’t painful, but uncomfortable. It wasn’t until just after 4am that I had success. I was absolutely sure that it had been caused by my guts, as they were full, and they weren’t moving anywhere. She didn’t really answer me at that moment, and I admit that I was somewhat distracted at that point, as she dropped a huge blob of gel onto my just put on clean trousers.

She asked me to go back to the loo and try again, just to see if I could shift anymore, which I did. The result was I brought the stored liquid down to just 95mils. As I was sorting myself out, I asked her again about the length of time it would be safe to keep trying. She asked me to go through to the living room while she cleaned up and put away her scanner and so on, she would join me there and we would have a chat. It was when we were both in the living room, that she said that clearly down to my dexterity and the problems I had inserting them without drawing blood, something that had happened more than once, due to spasms, that self-catheterizing or what they call intermittent catheters just wasn’t suitable for me any longer. She then said that it might be time for me to have either an indwelling catheter or a suprapubic one. I had to admit that I didn’t know what the difference was. Apparently, the indwelling is a permanent catheter inserted just as the intermittent but stayed there held in place by a water-filled balloon, the suprapubic is put into the bladder through a whole in your stomach and just like the indwelling empties into a bag on your leg, or some have a valve that allows you to have say in when it is emptied. She did though what to go back to the hospital and discuss it with her superior and would call me in a few days.

To be honest, I didn’t really take it in until she left. Here was another person wanting to bypass nature’s way and take over with plastic. I could within months find myself with both my bowels and my bladder emptying into bags. I also did the exact wrong thing, I read up about it online, where of course I found all the bad things about having them, the possible infections, bladder stones, and so on, and how they have to be cared for. I also came across the horrific entry that said the suprapubic could be inserted under a local anaesthetic, which sounds horrific to me. On the good side, I wouldn’t have to wear all these terrible uncomfortable pads, as the issue of wetting myself will have been taken care of. Mind you, would having a tube coming out of me, be any more comfortable?

I do know the dangers of my bowel not emptying, especially as the last thing I need is any infection as they are bound to throw me into a flare, but all of this feels as though it is running away with me. I can’t remember when, but I know that I have written it more than once, if you invite the medical profession into your life, without a doubt, they will find something wrong with you that you didn’t expect. I invited her in when I started wetting the bed as I wanted to get the free pads through the NHS, now suddenly, I’m facing possible permanent catheterisation. A result that never entered my head when I asked my doctor to help, as I was wetting the bed.


Please read my blog from 2 years ago today – 04/07/2014 – 1 hour is changing my life

Sometimes it takes something going wrong, for you to realise that it has always been wrong, yesterday was a perfect example of that. The day started well, my new system to give me more time to myself and also to allow me to still be active online while Teressa and John were here, it worked perfectly. I did push it in how fast I was doing everything and that believe me is…..