The merciful component

On the news the morning once more the were talking about the demise of bookshops on our high streets and how people just aren’t going to town to buy books anymore. Right now in my living room I am surrounded by books, books I would really not like to be without, but books that the majority of, haven’t left their exact location since they were placed there 13 years ago, when we moved into this house. I actually can’t remember ever buying a book in a regular bookshop, the majority were either bought while passing through stations, or from discount stores. There have been many times in my life when I always had a book on the go, when Teressa was little I developed an art of reading almost all the time regardless of what else I was doing, even watching TV. Just as my book collection hasn’t moved, I haven’t held or read an actual physical book for even longer, it seems to be one of those things that has just disappeared from my life, along with so many other things that you don’t even notice until someone brings it to your attention. I guess that life is like that, things are important to us at different times, so important that we work our lives around them, but years later we don’t even give it a passing thought.

We could all sit and make a list of those things that meant the world to us, from childhood up to the present day, I think it could actually be a really uplifting thing to do as that list would hold such wonderful memories. From teddy bears to comics and sweet, to those shoes we had to save for as we just had to have them, memories that fill us with happiness and laughter as some seem so stupid now. I have heard it so many times from so many different people that one of the things that people who like myself have an illness that destroys our minds, should take that time while we can to make a memory box. I have thought about doing it but that biggest problem for me is that I no longer have the things, the physical object that truly represent any of it before maybe the past 20 years. The physical picture and objects have gone, long ago destroyed first by my father and then, by my first husband, apart from a handful, there is nothing left to prove I was ever there. A few years ago I set up in the house what I call my memory trail, I thought it might be a way of replacing what I had lost, ornaments and pieces of crystal, things that although not really connected were close enough to do their job, but it has already started to fail, it appears that real memories can’t be associated to false objects. I found myself the other day hold one of them and staring at it, but there was nothing there other than a beautiful crystal, which I could remember buying and why I bought it, but it’s tail memory had gone. I just hope that I don’t forget how to read, as at least I have this, through everything I write there is always those places where I have told a story of my past, memories that at that point I still had and many I still have to tell.It’s kind of mad how when you know your memory has a fault and one that will only get worse, just how quickly it become really important to try to remember everything and I do mean everything. I now know that remembering is actually harder than trying to forget and trust me it is still what I tried to forget that comes to mind the most easily.

There is one thing that I am actually really surprised that I don’t really remember, especially as we all spend our entire childhood there, I have very few memories of school and outside of my close circle, I don’t remember even the names of those I spent every day with throughout all those years. My memory of the buildings layout, architecture and surroundings are totally clear, but I can’t remember the faces or name of more than 3 of my teachers, and as for the lessons well I don’t remember even one. If asked, I would actually have to say that I wonder if I was ever really there, despite the fact that I know I rarely skipped school at all. Things seem to be slowly going missing and I have no control of where they have gone, if that wasn’t odd enough, there is one fact even odder, for some reason I am actually no longer distressed by the fact I can’t find them. Just as I have adapted to a life with pain as being my “normal”, it appears that I am also adapting to the fact that not remembering is also “normal”. For the majority of the time it really doesn’t matter, it’s not as though we all sit around trying to remember conversations for 40 years ago, but then something will be said on TV, or Adam will be talking and suddenly I am aware that I can’t relate, I can’t find my own memory of that time, that situation, the things everyone else seems to share. Inside my own content bubble I am perfect, I am alive and I am productive and capable, outside it I am in pain, I have no memory and I can’t complete a sentence without forgetting, losing, or muddling the order of my words. I don’t understand where my bubble came from, it just appeared, I can’t even tell when it arrived, but my bubble keeps me feeling sane inside what otherwise would be a horrific and scary existence. My dysfunctional brain has triggered its own self-defence system, one I believe I have seen in many others, especially those with conditions like dementia or Alzheimer’s. Yes I can get frustrated and anxious when my world is disturbed or changed, or when things go wrong, or I can’t remember when it’s important that I should, but on day to day running my bubble keeps me safe. Somewhere inside this illness there is a merciful component that take it all away, what I am not sure about is, is will this growing bubble prove to be a good thing, or a bad thing for my future.

Please read my blog from 2 years ago today – 23/02/12 Styling required

I have avoided cameras for years, believe me it is an art which I have honed to a skill. Adam tried the other night to take a couple of pics as I had been advised the my photo on ‘Linkedin’ wasn’t helping me on my…..

Is stress the trigger

Lately due to reading my old posts from two years ago, I have been wondering how it is that for two years I have written daily and not only daily, the posts have become longer rather than I would have expected shorter. Logic says that once I had spoken about all the symptoms and how they effect me on a daily bases, that unless something changes dramatically, what do I have to write about that I haven’t already said, it seems to be a lot. That logical step I guess would be the one that anyone who hasn’t lived with chronic illness would actually take, it’s easy to see illness as just symptoms and physiological reactions, but there is so much more than just that and not just the balance of the two. Illness does actually change daily, it is never exactly the same and for me especially having a progressive illness, those changes will keep happening for the rest of my life. One of the greatest things I have learned about being ill is that it makes you examine not just your entire life looking for clues for what was the true start, or the trigger for your present existence, but you examine it because it is a life you will never be able to step back into. When you can’t go out that door and be part of it and when the world has stopped coming to your door, there is nothing left that you can do to change it. I have heard a question being asked many times on TV, “if you could step back and give your 12 year old you, one bit of advice, what would it be”, the answer for me is easy, “Constantly plan your escape”. Advise that those who have been reading for a long time will understand, those who keep reading will understand it even more.

I don’t really have much to base this on, other than a few others have mentioned it and my own life also seems to back it up, but over the last couple of years writing and reading the reactions to my words, I can’t help wondering if there is a link to chronic illness especially those that are autoimmune and dramatic lives. To many have also lived through traumatic situations, ones that leave scars which will never truly heal. Which ever situation in my life I have spoken off there has always been someone one who also suffers from not just MS, but parkinsons, fibro, alzheimer’s, ME and so on, who contact me to say they too have been there and they too understand the damage that is done, especially it seems if it happened before they were 25. I know that statistically the fact I write about chronic illness, that they will be the ones who I speak to, but it just seems to me that the number who had survived a traumatic event, is higher than I would expect. For some it was a one off abuse or trauma, for others a prolonged situation they couldn’t escape, but there is for me at least a logical step that having survived, but still having to relive it over and over inside you, that your body could be triggered to attack itself. We all know that stress makes all our illnesses worse, so isn’t it possible that sever stress could actually be the trigger?

I said that I would advise the 12 year old me to “constantly plan my escape”, if I had, if I had never put trust in those I thought I could trust, just maybe I might not be living with the list of illnesses that I have to live with now. I blindly went through my life not just until I was 25 but until I was almost my 30’s, trusting and accepting things as they were because I couldn’t change them, a story I have heard over and over again but not only in my voice. The one whole I have in my theory is what caused it to change, what made my MS turn progressive, I had no stress in my life at that time at all, that I can remember. It may just be as simple that the damage was done and the future path to progressive illness was there just getting ready to take over. Autoimmune conditions are clearly self feeding once started, as believe me there is nothing more stressful than dealing with all the things it throws at us. Living stress free is our ideal position, but when you can’t work, you can’t pay the bills and the smallest daily tasks are frustrating to say the least, you are tied into a circle of stress that keeps feeding itself.

This morning I once again woke not long before the alarm, maybe 15 minutes, but what woke me, well to my surprise I was woken by my left thumb. You wouldn’t believe that something so small could actually produce so much pain on it’s own, but it did. I think I will be able to put my finger on the exact spot where the pain was for days. It was so clear and so sharp that I found myself grabbing hold of it at the same second I woke, pain seems to make you do that, the most illogical thing possible, grab hold and squeeze? It was actually just in front of the knuckle a tiny spot with the power to make your entire body cringe in sympathy. My arms are clearly no were near ready to give me peace, last night was the same as several in a row, sitting on the settee, with my left arm on the armrest or sitting on my lap motionless in the hope that not moving might just give me some peace. Four hours from waking and everything I felt yesterday is here again, once more telling me just how easy it is for one part of me to diminish the rest of me into nothing of any importance at all. All I can do for now is pop those extra little blue morphine pills and wait for the pain to ease, something it doesn’t really seem to be happening today at all.

 

Please read my blog from 2 years ago today – 22/02/2012 – MS or Parkinsons? Checklist

A few days ago I was talking to a friend of mine who has Parkinson and some how we started talking about our symptoms only to find that we shared a large number of them. We both have the memory of a fish, both have mobility issues, we both have twitches and tremors that we can’t control, speech problems……

 

 

 

 

 

An appetite for inaction

I woke this morning with one small problem, breathing. For once this has little to do with my COPD, this is the fault of yet another cold that Adam caught and, of course, means I then catch it as well. My head felt like it had been covered in a soft fuzzy shell, making it feel so much bigger than it is and smothered in a way that lying down again always feels like the best option. One of the things I have maintained is that my alarm clock is master, I have no options or choices, once it has sounded I am up and part of the rest of the world. Even waking with my lungs totally filled with gunk, I had no desire to cough as my throat was sore and I felt that the best option was to leave the gunk where it was for the time being. Just as always once you are actually up and about you don’t really feel as bad as you thought you were on waking, something I find doesn’t just apply to a cold, but to all my ailments. Unfortunately, coughing isn’t something that you can resist for too long, but my throat had calmed after I had taken several sips of my obligatory glass of coke. I know that some of the meds I am on are designed to loosen phlegm from the tiniest space, I thought that within a short time of taking my tablets and inhaler I would have no choice but to cough but just like the last cold I had, my lungs now feel much clearer but I still haven’t really coughed? It’s now 3 hours since I took all my meds and again just like the last cold, I really don’t feel that bad now, proof that something in my medical concoction really does sort out a cold, I’m just not sure which tablets they are.

I really do seem to be having a prolonged spell of my nerves producing mad sensations, my hands still haven’t settled down, they seem to be perfectly happy quietly burning away to themselves. The only change that seems to have happened is that they seem to be more painful than they were a couple of weeks ago, along with the tips of my toes, I don’t know the connection, my finger joints keep having what I can only describe as a feeling that is close to that of being stung repeatedly. I already had both pins and needles and lightening bolts, so for a time I thought that this new sensation was a variance on one of those, but now I am not so sure, they really do have a different feeling, something unique to themselves. It isn’t just my hands though, something is happening to both my arms, I am getting less and less able to lift simple things like the kettle. I had to ask Adam the other day to not leave it sitting with quite so much water in it as simply making my porridge in the morning was getting more and more difficult. It doesn’t seem to matter what I lift now, there is always intense and focused fatigue left behind, just as there is from typing, every muscle movement is now felt right up my forearms and even at times into my upper arms as well. Try for the next twenty minutes to actually feel what muscles you are really using for every action you take, it’s one of the things that I think both MS and Fibro actually make you very aware off. I can track with ease just what else is involved in just lifting one finger, or getting to my feet just enough to rearrange my dressing gown to make myself more comfortable. So simple, such tiny actions, but all have a cascade effect through, other places you might never even think about, if you happen to have a really bad cold or the flu just now, you will understand just what I am talking about.

Adam seems to be getting rather exasperated with me just now, I have always been a faddy eater and it has been perfectly normal for me to eat the same thing every day for anything up to 6 months and on occasions longer. Those fads have been anything from honeydew melon to porridge, last year it was salad wraps, breakfast, lunch and tea, whatever it is I pick on, that is normally the only thing I eat. Adam is so used to it now that he has given up arguing with me over what the food is and just lets me get on with it, but I until now I have always eaten in the evening, not now. My fixation, this time, is slightly different, I now have porridge in the morning and around 1 pm I set to on a side plate filled with wonderful cheeses sliced as thinly as I can and oatcakes, but for some reason I find myself unable usually to eat anything after that. Every evening he offers to cook me something and every evening I tell him I just don’t want anything as I am still full, it is then that the grumble of “biscuits and cheese” followed by exasperated, outlet of air. We are now on our third month of grumbles, grumbles that make no sense as if you could see me it is clear that I am far from starving, I could in fact not eat at all for several months before I would need to worry. I don’t know where this eating of just one thing for months came from but ever since I left my first husband it has been the way I live. There isn’t any food I can think of that I wouldn’t eat if it was put in front of me, out of politeness, but allow me to choose and boy am I choosy. The things I want to eat even have to be presented correctly or I just loose my appetite and I will only pick at it. But I do actually agree with Adam over one thing, not eating in the evening, that is something I have never done before, missed breakfast happily, but dinner, never! Something really has taken away my appetite, it hasn’t been great for a few years but lately, it is worse and that’s where the biscuits and cheese is great, I can pick at it, taking over an hour to clear the plate, but I do clear it as soon as I can.

I have never heard of either MS of Fibro effecting appetite, yes there are a lot of problems when it comes to swallowing food and thanks to a bad flare I even found myself on a gastric nasal tube, eating has been difficult before, but this is different. Yes I choke on everything and nothing at times, but for the last few months, I just don’t want to eat, I prepare two meals and I eat them, but it’s a struggle no matter how much I love the food I am eating. It’s nearly lunchtime again, so time to start the preparation and eating once again.

Please read my blog from 2 years ago today – 21/02/12 – Close encounters of the floor kind

Today is turning out to be just a bit wild. I have managed to nearly find the floor with my head twice, it really seem I have an affinity with the bathroom floor. I lost count last year of the times I manage to catch my leg or lost…..

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It finally looks as though there is a chance that those truly unfortunate people who have spent almost the entirety of this year with their homes flooded, might actually be at the beginning of the end to their misery. I count myself lucky that despite having lived all over the country and in all sorts of homes, it is something I have been lucky enough to have never experienced. The closest I ever came was one very long summer as a child when it just never stopped raining. We spent most summers in the caravan just 15 miles from home at Stonehaven, now actually joined over the entire distance by houses to Aberdeen. Then though it was a small fishing village, with miles of coast and countryside, perfect for growing children in a time when children went out after breakfast and no one even looked for you until it was time for lunch. That summer the entire site was covered in duck boards and puddles big enough and deep enough to actually take a couple of swimming strokes, it was a summer of bare feet and wet clothes, but children always find a way or making it fun, if adults just let them go.

Imagination may well take you a long way when it comes to what you see on TV, but unless you have actually been there, felt the feelings of those involved, I don’t think any of us can truly understand the reality of a million things that happen daily to others. I have lost count of the times that I have had my interest sparked by the fact that a soap or documentary is to cover either chronic illness or the life of someone who is housebound, either from the patient side or from those around them, almost always I have been disappointed by what I have seen. It’s not that the TV companies do a bad job, or that I can’t empathise with those in the program, mostly it’s just they never seem to cover the things that I feel are most important, well, at least, to me. Clearly they have covered what was most important to the person they filmed or from the research they did, but simply because we are individuals, we each see things very differently. My biggest problem though is that they always seem to show just the negatives and ignore the positives, over exaggerating a particular issue and building up more and more fear of the illness they have chosen.

If I had never heard of MS from anywhere other than TV, I would have been totally terrified when I was told what was wrong with me. I know that TV companies are out to get high viewing figures, so a person in pain and centred around extreme issue after extreme issue, will pull in people to watch. It would be nice thought to just see once, someone who yes is living with a terrible illness, but who like me has accepted life as it is and then made the effort to make it even better, I know I am not the only one, I speak to many. Constantly showing chronic illness and even old age in a totally negative light is only ever going to achieve one thing, fear. We live in a world where people put themselves in front of the TV and believe everything they see, to the point it is almost impossible to change that view when needed. During last summer’s Olympics, a lot of energy was put into showing disability in a better light, but it centred obviously on people who were either born disabled or had lost limbs and so on. People clearly able to take part in sport and they did a wonderful job of breaking down some of those taboos and ridicules beliefs, is it not time though that they also applied the same effort to show people with chronic illness in a positive light.

Outside of a couple of soaps and medical documentaries, the way most people with chronic illness are portrayed is as people defrauding the government. I would love to see a program where they looked at the day to day realities, without every few seconds talking about the amount of money they get, or they need. But the biggest thing I would like is for them to show the chronically ill as people, people who don’t sit crying in pain all the time, but actually try to live a happy life within the restrictions their health forces on them. I wish that they just showed us as humans, not monsters, slobs, lazy or spongers, just as everyday humans living an everyday life as best as they can, despite of having to throw monstrous amounts of tablet down their throats or the times they find themselves lying in bed unable to do anything else, but still happy and still with the zest for life. We know that many of us have held down jobs far longer than maybe we should, that some are now self employed due to being unable to find work, just because they are ill. Would someone out there please, just shine a positive light on what are so often a mass of positive people.

 

Please read my blog from 2 years ago today – 20/02/12 – Clear skies

I would like to thank the BBC for the return of ‘Upstairs Downstairs’, not for the lovely costumes, or the wonderful portrayal of the difficulties, humor, respect and co-operation between the classes. No those are wonderful and enjoyable but for something I really didn’t expect when I settled…..

 

 

 

Who copes

Sometimes I sit and wonder just what is the worst part of what is happening to me, or that has already happened, I try really hard to find an answer, but I never find one. I can find and name a list umptin times the length of my arm, that other might say must be the worst thing that has ever happened, or the most dramatic, or even the most painful or unbearable, but they are all other peoples lists, not mine. Everyone’s lives are all of those things at time and although I have had many tell me otherwise I just don’t see my life as that different or that odd. How can I, when I am the one living it? I understand how others see me, but I can’t see myself truly in their eyes, as they are judging me in comparison to their lives, lives I haven’t lived. I know one thing about myself that does seem to be different from others, I have no comprehension of hate, or a desire to blame anyone for anything and I don’t understand why?

I think I was born a content person, someone who just accepts what happens and adds it into the knowledge I have of the world. My mother even says I was the most content child she ever knew, I didn’t need entertaining or anyone with me, I would just entertain myself, something I also saw in my daughter. As a teenager, I would describe myself as a seeker, my parents called it disobedient and many other things, but I, well I was just out there wanting to know why and who? Where ever I found myself, the right side of the tracks or the wrong, I was still content, not scared or worried or anything else, just there absorbing as knowledge everything around me. A fair statement really of the rest of my life, where my parents got it wrong wasn’t that I had gone off the tracks, I was only visiting finding out and returning every time with that bit more of an understanding of life. Where ever I have lived, from mansion to bedsit and on, I have always been content, even now when housebound I am content, accepting of my situation and making it daily the best day that I can. What I can’t work out is do I have something missing in me, or something extra, that makes me just happy to be, happy as I am right now?

I constantly come across people who are clearly finding life with their chronic illness extremely hard to live with, they can’t find a way forward as they can’t let go of the life they had before and have no interest in work on building a new one, as they refuse to accept what has happened. Some have actually become really angry with me for just saying that it is possible to be housebound and happy, others totally understand and have achieved it themselves, what makes the difference I think is that ability to be content in life. We have all met people who seem to never be happy with their lot in life, they want the bigger house, bigger car, more fancy holidays, some are angry at life for not giving them just what they want, just because they are them. I have never expected anything from life, it is what it is and I have made the best out of what I have, that includes being housebound.

For me to sit here and simply say you have to learn to be content is like asking ice not to melt, I actually do really believe though that there are people who will always take illness in their stride, they are the ones who are prepared for it. Something I have noticed across the board is that the more varied and the more extensive someone’s life experience is, the easier they seem to find making the step required to making their own life happy with illness or without it. What sort of person you are clearly makes a huge difference, but I honestly think that our medical profession could and should, start to prepare people from the day they have our diagnosis. I am lucky, I did it for myself, but no one once sat with me, even when I asked them to and painted a picture of what my future might be. Through out those first years all I was ever told was that no one could tell me what would or wouldn’t happen, I understand that they don’t know totally, that they probably didn’t know I would be housebound so soon, but I don’t care what they say, they knew it would happen eventually. Having time to prepare, not just your home and lifestyle, but more importantly your mind, would make a world of difference, especially for those who aren’t able to make that mental step alone.

I can’t teach anyone to be content, I was lucky, I was born that way, but I still didn’t just accept it without any impact at all when it happened, I found my way through. My blog is filled with so many things to help, but nothing I could write can make up for that missing step of the years of preparation that I think we all have a right to, rather than doctors who just smiles and tell us nothing. It’s time that when someone is diagnosed with a progressive condition that it is made clear by the people who know, just what might happen in the future and those who need it, get the help to make those steps to something we are all entitled to a happy life.