Big steps, huge questions

I tried yesterday my idea of making pancakes out of the Psyllium and it worked really well! Much to my surprise the taste wasn’t too bad and by using salted butter, a really small amount, to cook them and a tiny piece on top to melt into them, the tasted wasn’t perfect, but perfectly edible. I made just three small pancakes about 7 centimeters round and half a centimeter thick, in total they containing about half the dose the doctor recommended, with an equal amounts of flour, one beaten egg, and some milk to make a really thick batter that sort of drops of the spoon. As I didn’t have any self-raising flour, I tried plain, which made them a bit heavy as beating in the air was hard work. I now have the right flour, so today I am going to make a double batch and try putting half in the fridge until tomorrow, I am a little worried that they might turn to rubber, but without trying I won’t know. I know the plain flour didn’t help, but they were a little heavy and very filling, I couldn’t have managed another mouthful if I had tried. I was also full for a long time after, which for some people might be a good thing, especially if they are trying to watch their weight, Psyllium could be a way of curbing appetite whilst doing their insides good as well. Anyone else who is going to try the pancakes, remember to have plenty to drink with them as the Psyllium will continue to draw water into itself even after cooking and eating. At the moment, it looks as though pancakes will be on the menu daily, but in time I am hoping that I can also come up with some other ideas that I didn’t find online as most of them didn’t really appeal. I do now also have the ingredients in the house now to try the milkshake idea as well, as I will need variety and if I am going to feel so full so quickly and a way of spreading it out over the day as I severely doubt that I will manage the whole dose in one. I will, of course, keep you updated with the possibilities and the results, which so far other than feeling full, are zero.

Diet for me has been a problem area for many years now, with my body so anti-food, but my weight still rising as I can’t do anything but sit around like a lump of lard, what and when I eat is a constant puzzle. Changing my diet totally, as that looks as though is exactly what I am going to have to do, isn’t exactly filling me with excitement. The hard thing is getting enough of everything I need to stay alive, out of the limited things that I can or want to eat. My appetite is tiny so I have developed a habit of grazing on something different every few hours, which doesn’t fit with filling milkshakes, pancakes and large quantities of liquid, which are filling on their own. When you are still mobile you never really think that closely about what you eat, even though we are supposed to. Yes, I didn’t eat certain things out of likes and dislikes, but also because I knew that tucking into burgers and fries isn’t exactly going to do anyone’s waistline any good. Being active though actually means that we can eat a lot of things that we shouldn’t and get away with it, being sedentary, not just sitting in an office, but truly sedentary, every single thing you eat just turns into fat that you don’t need. I even went as far as checking the calories required by someone in a coma and was shocked to see it is the same as someone on a diet, I was shocked as my calorie intake was below that already and the weight was still going on. I was left with one conclusion, I had to try different things until I found what worked for me. In the last 18 months, my weight has actually gone down a little and I do mean a little, as over that time I have lost half a stone so my fears of what my new diet will do to me, not just health wise or how my PRMS will react to it, I believe is a very fair concern.

This isn’t the first time that I have had to deal with something this complex on my own, it is something that has reared its head throughout my illness. I was very aware the other day at the hospital that the doctor I saw was shocked at just how little help I was receiving, even from those who were supposed to be there to help me. It is a problem that I have found over and over again, the so-called experts aren’t experts in anything other than the average. If you don’t fall into their limited range they all just group together and tell you to listen to this or that doctor, it’s almost as though they fear going against your revered medical advisor. It didn’t matter if it were the continence nurse, district nurse or the MS nurse, their answers were identical and simply didn’t work for me. It took one doctor of a higher rank in their club to say stop it all, this is pointless let us look at it from a different angle. Similar things have happened before to me so I know already that all the rest will now fall into line to back him up, like little soldiers they will take their commanding officers words as the new bible and they will just repeat them, without the slightest personal knowledge what so ever. I know that medicine is a huge field and no one can be expected to know everything, but I am finding more and more that their lack of knowledge actually outweighs what they know. It is bad enough when you have just one condition, but as soon as your health becomes a complex mix of different conditions, the knowledge of how to care for you goes out the window.

The odds say that somewhere out there in this huge world, there will be someone else with my exact mix of conditions, the chances of finding them is nil, finding a doctor who has successfully treated someone identical to me, is even less, so I like so many other people am on my own on working out how to care for me. No one, not even the doctor who started me off on this path of finding something that will help me deal with the complex mix of dead and overactive nerves in my guts, actually knows what will be the thing that will make the difference I need to make life good again. I might be doing exactly the right or wrong thing for my PRMS, but is it the right or wrong thing for my Fibro or my COPD, or will it upset one of my minor conditions, all I can do is cross my fingers and hope. The medical profession can’t help someone like me, I may keep turning to them because I am at a total lose and I may as I was this time be lucky to find someone who listens, but that is what it will always be, luck. I don’t believe that they don’t want to help, it’s just they are at as much of a loss as we are, but the good ones, well they at least try and even if their trying is nothing more than a list of possibilities, well that is a million times better than nothing at all.

I may not be in a coma, or be the size of a beached whale, but nutrition is so much more than just keeping ourselves alive, as it has to be enjoyable, if it’s not, we give up. If you want proof of that, well just look at the millions of people who are morbidly obese and the long lists of failed diets that follow them. Even when our very lives depend on it, we would rather eat what we shouldn’t, than eat what we know we should if we don’t like it or if for some reason it is not right for us. Bring all these things together and you are at the start of the battle that I have just entered, nothing is as simple as saying do what the doctor says, especially when the doctor is talking rubbish and almost as hard as when you know he is talking what possibly might be the right answer. Right now I have hope, that alone is bolstering me and making my doubts and fears seem small, but I know without a doubt that I have to be aware of them all, as it takes seconds to make my health worse and months to make it better.

Read my blog from 2 years ago today – 22/05/13 – Relief from my body

As a day, yesterday turned out OK after my shock of my online electricity bill, it just shows how what you imagine as a nightmare can be changed totally but how your phone call to complain is handled by their customer service staff. Having worked in call centers for years, I know how hard it is not just for the companies to find staff like that, but for staff to remain positive and helpful through the entire day. There is always a knock on…..

Having the final world

I don’t often mention politics, but I am going to make an exception right now, thank heavens the UK elections are over and I am so looking forwards to tomorrow when the news channel will start reporting news again, rather than talking heads spouting rhetoric. I have always had a real interest in the news, I don’t know where it came from, but it is the only program that I never go through a day without seeing at least two hours of it, often a lot more and I have really missed it. There is something about being housebound that has turned the BBC news channel into a major part of my life, probably because it is my main source of information, not only news, as to what is happening in the wider world. If there is such a thing as a good era to be housebound, this has to be it, as at our fingertips are so many different ways of bringing the world to us, just 50 years ago, I know I would have gone stir crazy here, that is firmly on my list of blessings to be grateful for.

I know that a lot of able-bodied people feel pity for people in my position, I have seen it in their eyes and heard it in their voices, even a few have actually told me how sorry they are, but I don’t feel as though I need or require pity in any way what so ever. Yes, my health is atrocious but my life still has more positive than it has negatives, if it didn’t, believe me, I wouldn’t still be here. I always think that is the real tester when people say they can’t take anymore, is to ask themselves “would you really rather be dead?” Not a question to ask when you are highly emotional about something or screaming in pain, but one to ask when things are settled back into their normal patterns. I am a great believer in asking myself if I am still happy, not just because of my health, but in life in general. It was something I started doing a long time ago and if the answer ever comes back no, then I know that it is time something changed and the only person who can ever make those changes is myself. I have to admit that I didn’t ask it in the first year after I was diagnosed, but I counted that whole year as not being a time to make any changes and I still believe that one totally. I have heard some horrific stories of people who have thrown their lives away simply because they have become incurably ill, I don’t see that as a good point to change anything. Nor is answering a no once, if you do come back with a no, then wait a month and ask again if it’s still no, then do whatever it takes to make your life happy again.

There is something that life has taught me well and that is that life goes on and if you are prepared to put in the effort, it also gets better. Whatever situation I was in that made me answer no, I was never scared of making the changes needed, even leaving my first husband, when I walked away penniless and without a home, proved to be not the list of problems that many might think it would be. There is never a good reason to stay in a bad relationship, not even health, as I totally believe that a bad relationship will make your health worse faster than anything. Outside of the year that I didn’t ask myself there hasn’t been a single year that I have answered no, since the year before I met Adam and that no was due to another relationship gone bad. I have made no secret that I believe strongly that although life has its nature cycle, that cycle isn’t the only thing to be taken into account, the quality of life is actually the most important thing. Which is why I said that if I had been housebound 50 years ago, I know without a doubt that I wouldn’t have lasted this long housebound. There is a lot more to our life expectancy than just what our doctors can do for us and I think that is something that is often ignored. Our well-being is a huge mix of things and yes it includes love, but it also includes happiness, contentment and many other emotional factors, but it also includes how we see our personal position in life. When we are in paid work, we can then put a monetary value on time, but we also gain many other things from work from friendship to self-esteem, things that when housebound we have to replace and something I have covered many times in my blog. Extending our life expectancy requires a huge dose of mental well being, something that the modern world makes much, much easier.

In the past when someone became housebound those in the outside world started that ticking clock, no one and I do mean no one expected us to live for long after that. It’s clear that once depression sets in, everything else in our health also dips with it and the ticking clock is probably well deserved. Depression stops you from taking care of yourself, even without depression I have managed several times to develop weeping sores that if they had continued to be unattended would have grown into a much bigger problem. Depression stops you eating and we all know that poor nutrition plays a huge role in life expectancy, add the full effects of depression onto any chronic condition, especially one that is progressive and debilitating and life expectancy decreases rapidly. I honestly believe that these days, there is no reason why someone couldn’t live at least double if not many times longer than the expected time housebound people would have in the past. With the right attitude, a home that is connected to the outside world and people who care, I don’t see that housebound alone need now be a factor in how long we live. I am right now in my 8th year indoors and my personal ticking clock is set to give me another 8 years on top, that clearly though is dependant on how many flares and what they do to me, but for a second if I were to ignore that factor, I could quite happily live like this, right out to my full life expectancy, which would mean another 30+ years housebound. Our health is so much more than just one or a list of diagnoses, it is driven by so many factors that have absolutely nothing to do with the medical profession, but they will be the one’s patting themselves on the back for extending everyone’s lives.

Having said all that, I can’t take my health out of anything and I do strongly believe that the most important thing is the quality of our life. For each of us that is a very personal decision, each of us will have our own points where we would draw the wondering line of quality, as you can’t set a percentage point that is universal to the things that make life good. What I might consider to be unbearable, to you might not be a problem or vice versa and that is the way it should be. I remember a long time ago some scientist wrote a paper on measuring the quality of life of terminally ill patients, but I don’t think that is possible. If we took just one issue, being able to eat or having to be tube fed. I know because I was tube fed for three years that it isn’t that bad and I would if I had to be maybe not content to return to it, but I wouldn’t either put it down as unbearable, which is exactly what many might feel. It is only what we as individuals believe is right for us, that should ever be considered by the medical profession or anyone in any of the care profession.

I have spoken in the past of sitting and putting together what you might call a care plan, I still haven’t done it, but I know that I must as time is ticking away, but within that I now actually think we should add in a section that shows what we as people find acceptable when it comes to our care, not just our likes and dislikes. It needs to be like a living will and far more than a DNR, I know that would mean going into almost every detail of our lives along with all the possiblties that might be in our futures, but they are our lives and it is us who should always have the final word and should do so while we can.

Read my blog from 2 years ago today – 8/05/13 – A pattern of diagnosis

Sometimes it is easy to look back on life and see things for what they were, rather than what we thought they were at the time. I know I beat myself up for many years over things that I did because I couldn’t cope with everyday life, a life that any healthy person should be able to deal with. Over time since my diagnosis I have had those sudden light-bulb moments that mean now I look back and see I had……..

It’s just sleep

It is the third morning in a row that I have come through here and asked Adam to put the fire on, the outside world is freezing and as always so is the house. Well to be fair on the heating system, it’s not, just not as warm as I would like. There are some advantages of living on the second floor of a Victorian terraced flat, the surrounding flats do help to keep us that bit warmer but, without real insulation that every new house has these days, we all also loose a lot of what we try to put in. Like so many things in life, you take your pick of what you love most and like most people in this world, I want the lot! It is odd how we fall in love with the places we live, regardless of all the major reasons I could give or could be given for living somewhere else, it would more than break my heart to leave here, no matter how perfect the place I would be going to and it would have to be beyond perfect.

I didn’t just wake to find the house cold this morning, I woke to the alarm clock, nothing had disturbed my night, I have been up for some reason or another every night for the past 5 nights, but something wasn’t quite right, I could hear the alarm clearly. At some point during the night, for reasons that only my sleeping self knows, I had taken out my right earplug, I could hear clearly because it was missing and I still haven’t found it. This is the first time I have woken without an earplug, I have woken a couple of times to find I had removed my sleep mask, once I had even managed to put it on top of the draw unit beside my bed, but I can only guess that last night my ear was itchy and I couldn’t get to it due to the plug, the things I manage to do whilst asleep seems to be growing all the time. Honestly there was a time when I went to bed at midnight every night and got up at 4:30 am for work and did nothing but sleep like everyone else, on my side to start with and somewhere else the rest of the time, changing over and over. I was also the sort of person that if I tried to lie in at the weekends or when on holiday, I would have a banging headache to deal with, sleep was something I did because my body demanded it, but equally it also demanded I didn’t sleep too much. There is an odd drawback to not moving off your back at all and that is I often wake to find that the entire back section of my body from the top of my head to my heels, is tingling and painfully numb. It is so intense that I have to move and the second I do, it is gone, which leaves me with the huge question, how come I didn’t move when I was asleep and simply fix it? There is something really odd about my 10 and half hours sleep that I have nightly, I am totally cut off, way beyond what I would call normal when it comes to my lifetime experience of sleep. I must have wondered a million times just how long I might sleep if I didn’t have my alarm set, but I am so scared of messing up my routine that without I would make my health worse and worse, that I just can’t test it, but I still wonder. Everything tells me that I am more than dead to the world, at least in the first half, I can be disturbed by noise or light after the first 8, hence the recent addition of my mask and earplugs, but even then I still don’t move at all from the spot I was in when I went to sleep and that isn’t normal. Nor is my total ability to go to bed at any point in time and be asleep in minutes, whether I felt tired before I lay down or not and I now never wake with a headache. It is only in the last couple of months that I have been disturbed in my sleep, having to go the loo, or being woken by the people upstairs going to work, so the normal pattern in MS of fatigue caused by sleep disturbance, doesn’t actually match up with me. Right from the point when my MS turned into PRMS, sleep became something I just couldn’t get enough of and it has just got worse and worse as time has passed. When I started writing my blog, I was having two hours less sleep every day than I have now and if I am honest, well I know I could now easily sleep even more, the problem really comes when I try to work out when.

Although I do sleep during the day with ease, I know without a doubt that I am not getting the same deep sleep that I do at night. I still don’t move, but I also quite often sleep for an hour and get up without the alarm sounding, not always but about 20% of the time. Sleeping at night for all of us has much more of a renewal quality, not that I ever wake feeling renewed or refreshed, more just capable of another day. Sleeping during the day, is more a way of extending my time in the evening with Adam, without it I know that I would be in bed earlier than I am and as we only see each other for a couple of hours each night as it is, well I don’t want to start having to go to bed a 8 pm. So why don’t I just reset my alarm to go off at 8:30 instead of 7:30, there is a list of reasons why not. Firstly there is the fact that Adam is up during the week at 7:30 so that he can go to work, it is a few minutes that we have together and a time that lets me know that my husband who isn’t good at getting up to alarms, is actually awake and at work. The second one is actually the harder one, other than when I was a DJ and working into the small hours, I have always been up no later than 7:30. It is the time that days start, the world starts to move and I feel inside that I have to be doing something, I have to be here at my PC working if you like.

The longer I am ill, the more I realize that so many things aren’t what they appear on the surface, there are so many deeper reasons, meanings and feelings behind so much of what we do and sleep is another of them. Our bodies and minds may demand sleep, but ultimately it is our conscious selves that decides just how much we are going to allow it to have and when. Losing control of that conscious decision means losing control of so much more than just sleep. My whole daily routine is built around that start time and as I am still trying to hold onto “normality”, letting go of that start feels completely wrong. Letting go of the “normality” point would be like letting go of life and admitting that I am no longer part of the “normal” world, I would be giving into my PRMS totally and admitting that “it” now has final control.


Please read my blog from 2 years ago today – 17/01/13 – Aged by the invisible

My day started just in the way I expected with a snipe from Adam, as I said he read yesterday’s post once I had gone to bed and wasn’t happy I hadn’t told him at the time, I asked him what he would have done and he shut up after one word, “well…”

A simple choice

I got up this morning actually really looking forward to what I expected to be a straightforward day as yesterday afternoon, Twitter eventually fixed the issue allowing me to log in and be part of the community again, rather than just an observer who was only allowed to tweet if I scheduled it for a later time. Everything seemed fine, I could follow, like, favourite and tweet, perfect I thought, then I tried to see who had interacted with tweets, only to find some bright spark developer has changed the program as they often do but has manage to make it such that you have no idea who likes or favourites anything, there is just a total. There is a workaround using other platforms, but it is so slow that it just isn’t practical. I really wish that developers would leave things alone, I know they would be out of a job if they did, but to me, a good developer makes changes that helps people, not annoys the hell out of them! I put a tweet out asking to be sure that it wasn’t just me and at least it is not this time.

The more I have thought about yesterday’s palaver over my hospital appointment, the more bizarre the whole things seems. I have like every person out there with poor health have had to rearrange hospital appointments for one reason or another, just occasionally I have totally cancelled appointments because the appointment took so long to come through that the reason for it has healed, just like yesterday, but not once in my life have I had the hospital phone my GP and my GP then call me, to push me into rearranging it. I can’t help but get the feeling that they really do think there is something more there than just a difficult to heal ulcer. I know the mouth is supposed to be the quickest healing part of our body, but as I know all too well there are always exceptions to the rule. I guess I will find out when we go there in a couple of weeks time, the date actually works well as Adam is off work that week, so there is no need for him to arrange emergency time off. Why is it in life when you think you are doing the right thing by not wasting other peoples time and money, that that right thing turns out to be totally wrong.

It seems that this week is doomed to just be wrong, everything even the little things in life just don’t seem to be working correctly. Adam thought last night that he would be helpful and rearrange the bed before I went to sleep, I came into the room to find him moving my pillows, but I could see he had done something else but it didn’t click until I got into bed and lay down. He had shifted the mattress by a few inches, it has a habit of working its way over the edge of the frame but he had moved it another 2 inches past that, so when I lay down, I was on the edge of the mattress, with pillows no longer shaped to my head and the edge of the mattress topper sticking into my arm, everything felt wrong. I don’t know what it is about beds, but if they are not just right, the whole purpose of being on them is totally lost. I know I do have a bit of the princess and the pea thing going on with my body, but even before that started, beds just have to be right. I know it is one of the reasons I hate having to stay in a hospital, that along with the noise of other people, but I also think it is part of the reason I don’t like going away on holiday. There was no way I was going to be able to sleep, so I had to get up and undo everything he had done, then thump to submission my pillows, before climbing back in, trust me, my muscles don’t like that kind of excursion, at least I was just seconds from sleep.

I have a feeling that if you asked the majority of people with either Fibro or MS they too would tell you that our beds are the most important thing in our homes, not just because we spend so much time in them, but because it is often the only place that we can find comfort and some peace from the pain. I know that there are days when the constant thought in the back of my head is a counting down clock, ticking down the minutes until I can head back there, it is like some kind of womb, the only thing it doesn’t give me is food. I was the person who never stayed a second longer in my bed than I absolutely had to, someone who saw going to bed and having to sleep, as more of a punishment rather than a slice of heaven. Now, now the second I have done what I do in my daily routine and once I have spent a couple of hours with Adam, the only thing in my head, is bed. I don’t understand how though it is that I now seem to have this switch inside me, that regardless whether I think I really need to sleep or not at night, within seconds of going horizontal, I am asleep. In the day, well not always, but even if I don’t sleep I can lie there just enjoying the fact I am motionless, in a dark and warm place where my body is supported and my muscles can do what they want the most, to rest. When my lungs started playing up, I went through a spell where I found sleep not such a great thing, having my lungs feeling like someone was sitting on them, well lets say it was enough to take away the gloss. These days I no longer lie flat, the elevator that was fitted to help me get out of bed, turned into a huge blessing as it means I can sleep with the top half of me raised slightly, it isn’t a cure, but it sure helps.

I know after reading that that those who don’t have my conditions will be wondering why I don’t just stay there if it makes such a difference, why don’t I, well that’s easy, I don’t want to miss my life. I know my life isn’t the most exciting or the most glamorous, but it’s the only life I have and I want to make the most of it, not spend it with my eyes totally shut, I miss enough as it is. That was the simple answer, there is a deeper one as well, the fact is the time will come when I have no choice, choice is one of those things that we all have and most of us think nothing of it. We make choices all the time without even knowing we are, will we take a sip of drink now, or in a minute, shall we wear this outfit or that, those shoes or the other ones. Choices fill every waking second of our lives, but just as your health goes, so do our number of choices and more importantly our free will. It doesn’t matter any longer what it is I want to do, what matters is what I am capable of doing. I can right now make the choice to be sat here doing what I do, I am not going to let go of that any sooner than I absolutely have to.


Please read my blog from 2 years ago today – 20/10/12 – Peace is returning 

Last night when I went to bed I was really hoping that I would wake at least at the same level as I did yesterday, I’m glad to say I did. Although it really seems to be just my feet that are improving, when I woke I felt brighter than I have…..