Monthly Archives: August 2014

Help others to help you

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August has almost gone, it doesn’t seem that being housebound makes time pass any slower, I kind of thought that it would, I imagined it was going to be like one of those never-ending weekends when I was a kid, not allowed out as the weather was bad and nothing to do that I wanted to inside. I have heard so many people saying that when they were children that the summer lasted forever and how they hated the last week as it was all about going back to school, it has always made me feel somewhat strange as the last summer I remember like that was when I was 9, after that yes the lasted forever, but only because I was so bored and I couldn’t wait to get back to school. I suppose time is as they say relevant to your age and what you are doing at the time, therefore I am about 7 years old and as happy as a lark, or just odd, yet again. September heralds the start of my 4th year without working, my 4th year of having to fill my time totally by myself and to be the only person responsible for keeping me inspired, achieving and feeling part of something, not always as easy as it might sound, but the core of what makes the difference between life becoming a trial or life being happy. It doesn’t matter if you like your job or not, it supplies you with far more than just than the thing everyone says they are there for, the money. I have always said that winning the lottery and giving up work would in fact for most people, not the joy they think it would be. The reason, simple, without work what do you do once you have taken those dream holidays, bought houses and cars, eaten at all the best restaurants and set your family up to be comfortable for life, what next? Just like those never ending summer holidays that I wanted to end, I have no doubt that regardless of the money, most would land up working somehow, be it in their own company or in a voluntary capacity, because work gives us so much more than just money.

Writing this reminded me of a post I wrote back in 2012 “Seven Stops”, I just re-read it and I still believe that it is the way to keep yourself going and to replace much that is missing when work vanishes on us. It is strange how deeply the work ethic can be etched into us, by either our upbringing or out of our own discoveries, even now I know that if I were to win that lottery, I would probably be looking for a way to set up a company of some sort that I could run from right here, as I still have that desire to do something more. I also know that it would be something to do with helping people adjust to a new life when their lives are turned upside down by their health. I never once in my life saw myself as someone who went out of my way to help others, I missed something there, as believe me there is a huge joy in knowing you have done something to help another, or even just to have made them smile that day. I honestly wish that I had somehow been taught this when I was younger, I did find it out slightly as I used to do a lot for charities when I was still in my first marriage, Navy life made work difficult to impossible, but charities always need funds and I was good at raising them, then I was doing it with a large dose of my own reasons, my sanity and being with others, two of the same reason we work. I never saw those I raised the money for, I never saw the most important part, what the money did. Yes, I have bought a burger and a drink for someone begging on our streets and I have been into OAP homes and sat and chatted to people I didn’t know who just needed to talk, as they had no visitors, but I never did enough.

There is something very wrong in this world in that we have somehow told ourselves that throwing money at a situation is the answer, we have done our bit because we have reached into our pockets. I find it somehow ironic that I had to become ill before I found out what it means to truly help someone and that money didn’t have to be in that equation at all. Oddly I actually think that a lot of people who can’t work anymore because of their health could actually turn into the saviour of those who are worse off than they are health wise. It could so easily be achieved that it is almost astounding that it isn’t done already, but yet again it probably hasn’t happened because so many people seem to think their lives are over just because they can’t do what they once did. I to found myself when first ill, going along to different organisations who worked with the disabled, I was incredibly looking for their help, when in fact, I was still actually quite fit, yes I was in a wheelchair and yes I had problems with my speech and memory, along with the normal array of problems that MS cause, but I was still out and about, I was still working and capable of daily life on the outside, but I wanted help and that was all I saw. Like the majority of the world, I fell into being the person I least like, the person who is totally me, me and then again me. I needed help, I admit that, but I could have gone to see them not just asking for help, but offering them my spare time in return. I can’t get out of here now, I no longer ask for help as in truth there is little I need, I am happy and I have a good life. I have worked on building that life, putting together something that works for me and I know could work for so many others as well, all they have to do is think about it, work on it and live it. I work every day on making others lives better along with my own, all it took was a little thought, as caring is a universal need and one that heals in both directions. I have discovered my niche, able-bodied or disabled everyone needs someone to brighten their day, make them feel better and able to pass on that feeling. As I said, it is a universal need, if you need help and to be cared for, caring for someone else might just be the answer.

 

Please read my blog from 2 years ago today – 31/08/12 – Learning into the Future 

I have just returned from the Hospital, well not just I have been here for about an hour but I felt so sick when I got back into the house that I have been sat here sort of starring at the screen moving things around. The alarm got me up at 6am as planned and I managed over the next hour and a half to get myself ready to be collected. By the time the ambulance actually arrived I was slightly……

Time jump

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I woke this morning with the really odd and somewhat disgusting trail of semi-solid gel drips in a line from the ‘thing’ in my mouth that had formed a scab, to the back of my mouth where the other ‘thing’ is. When the scab fell off I thought that the hole it left would just heal over slowly building the layers until it was flush with the rest of my hard palate. It seemed to be doing just that, yesterday morning though I began to wonder as when I touched the tip of my tongue to it, it felt sort of spongy, as thought it was filled with fluid, it was and it burst when I was eating lunch again, the hole was exactly the same as it was a couple of days ago. I had taken a look at it just before lunch and I could actually see that it wasn’t right, so when I found the hole, it all made sense. Because I sleep the whole night on my back, I guess it had been weeping rather than scab forming but the liquid was turning slowly solid and that was what I found. The hole itself is once again feeling as though it is filling and healing, but that was what happened when the scab left, so I’m not holding my breath. It’s now over two weeks that they have been there, if they are cankers, which I can’t see how they can be, as I have never had them before and all the articles say you have to have had them by your mid-twenties, which I hadn’t, to have them later in life. They are also not meant to appear on your hard palate, the first place I found one, but if they are, they take three weeks to heal, so I will see what happens over the next week and if still here a week from today, well I will call the doctor on the following Monday.

My body really does seem to have an art of doing all the things it shouldn’t, I have lost track of the number of things that I read that say something or other shouldn’t be happening either because of my age, or because I haven’t had some other illness that are meant to be the trigger. To be honest, part of me now reads everything with a huge dose of scepticism, including and especially when it comes to all the medical sites and books. I will just correct that slightly, I don’t have a huge stack of medical books, I used to have two when the kids were little, simply because not living anywhere near our families, I didn’t have the granny to take them to, just to check if it was a rash to worry about or not. I was at that time also in the beginnings of my MS, when the doctors failed me over and over, I did turn to the books, now I don’t remember what I found in them, but I do remember scaring myself to death several times, convinced that I was going to keel over any second and die. These days I only use a couple of medical sites online, going off piste when they fail to come up with the detail I am looking for, but to anyone who want to use them, correction as I know without a doubt that if you are reading this, you use them, make sure when you do, to do so with care as 99% of what you read, will have zero to do with whatever is happening to you that made you go there in the first place.

I have had to for my entire life put my age on the shelf, everything from puberty onwards seemed to happen when it shouldn’t. I was 8 by the way when my mother had to take to buy my first bra and everything else seemed to follow closely behind, my body has done and gone through everything else at full speed. These days although I am just 53, I feel so much older and at times I don’t know if it is because of my mad body or my mad illness. Chronic illness makes you old before your time, like it or not, all those things you thought wouldn’t happen until you were old, really old sudden start happening when you are too young to even consider them possible. There is a grieving process that belongs with finding out that you are ill and that your health means that things will never be the same again. I only realised recently that one of the things you are also grieving for are all the years you will loose, not of the end of you life, but out of the middle of it. I was 40 when I received my diagnosis, Adam and I had been married for a couple of years and we were in the middle of decorating and remodelling our home and we were so happy that life looked as though it could be nothing but roses all the way into the future. I in the next 2 or 3 years, aged physically by over 30 years, I was in a wheelchair when I was just 44, with no energy, no physical life to me and suddenly in just a handful of years equivalent physically to those well past retirement. Take the word illness out of the equation and I am equal to someone in their late 70’s or even 80’s. I lost my health and I tried so hard to live as the person I should have been ageing in a normal fashion, without understanding fully that losing your health means losing a huge chunk of your life, it is a time machine that jumps you forward and forward, stealing everything that should have been in between. I’m not sure why I never looked at it that way before, but I didn’t, I only saw and thought about the health issues, I had it in my head that I would continue as I was just in more and more pain and less and less mobility and mental agility. I saw it as losing years of the end of my life, not as losing years in the middle of it, when in truth that is what happens. I am 53 right now, but I don’t know what it is like to be someone in their 50’s, regardless what it says on my birth certificate, I only know what it is like to be in my 70’s or possibly slightly older.

Read my blog from 2 years ago today – 30/08/12 – Learning into the Future

Sometimes I am not as quick on picking up on something as I like to think I am. Strangely this has been on of my beliefs for many years but I realise that it is actually as important to surviving chronic illness, as my belief that you have to keep achieving, for those who don’t want to write or don’t have the space or funds to set up a hobby that requires more component than a PC or paper, at the……

Know what you think

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I knew when I stopped writing yesterday that I had just opened up a topic that I had barely scratched the surface of and that is the truth about the things we fear. I suspect that the majority of people reading this who are healthy will think that my biggest fears must be that of dying, for me that doesn’t hold even the slightest fear, that doesn’t mean that I want to go today, it just means that I at peace with the fact it will happen and will happen long before my numerical life expectancy. I don’t ever really even remember fearing it, but strangely my health makes me even calmer about the whole process because the one thing I do fear, is now guaranteed not to happen, being allowed to die in pain. No one want to be lying there in extreme pain with nothing but an aspirin, I already have enough painkillers in the house to take away the life of an elephant, so I am sure they will cope with any pain my body can dream up. I suspect that most people fear pain, that is why I have a stockpile of drugs, I made a point that when I was fitter not to take all my drugs unless I really needed them, that way I managed to squirrel away enough so that if pain greater than I have right now appears, I don’t have to wait to talk to the doctor, get prescription sent out and for Adam to get to the chemist and back. It was for that reason when my pain levels peaked again last month, I had the tablets here to work out how much more I needed and had the pain under control before I even picked up the phone to my GP. I am sure all doctors would say that isn’t the way to do things, but I don’t care, this is my body and I know what my pain levels are and how much I can bare.

So with not fearing death and having the pain thing covered as much as I can, why am I still writing a post about fear, because those aren’t the only things to fear, there are so many other things, things that I can’t put in safety nets for, physiological or physical. Taking an actual fall doesn’t hold that much fear for me right now, so yes I could find myself stuck on the floor, but what I do fear is taking a tumble in a few years time when my bones are more brittle and the chances of them breaking get higher and higher. Yet again it isn’t the actual break that I fear, or the pain that would cause, or the horror of finding myself stuck for possibly hours on the floor with a broken bone, it is all that would follow it, no not the getting out of the flat or to the hospital, that I am now used to and if it has to be done, well it has to be done, but it here for me the real fears starts.

I fear all the things that would start in the hospital, the questions about my being able to cope in the house, how ill-equipped and unsuitable our home really is for someone like me and that is before having a broken arm or leg. I have already been through the arguments with the occupational therapist about how half the stuff we have in our home needs to go, trust me it is going nowhere. I can argue that right now, but my arguments would run thin if I were in that position. I don’t want the social work department involved in my life, making decisions behind my back and not asking me about any of it. I don’t want to be lying in a hospital bed with them here in my home discussing with Adam what needs to be done for it to be safe for me to come home, or anyone other than me deciding that I need a carer or anyone else constantly interrupting my life. I guess you are starting to get the picture, I don’t fear in any way any of the horrible, painful or even disgusting things that my health is, or will do to me in the future, my fear is what will happen around it all. I fear and I bet that it is what the majority of people will fear, is others taking over the decisions that make our lives happy to live.

One of the ways that probably can paint the picture and make it relevant to you, is for you to make a list of all the things, big and small, that make you happy. Be sure to include on the list the little ornaments that remind you of some part of your life, the furniture you bought and love because yes you had to stretch the budget, but you simply have to have it. Include the time you spend doing things like writing, tweeting or whatever it is that you enjoy spending your time doing, even reading a book, those things that having someone in your home would stop you from doing, because they will interrupt, even if they are there to clean the house, they will interrupt you, constantly. Now make a list of all those personal things that you do for yourself, like taking a shower, washing your hair or even going to the loo and the final list well that one is for all the things you love that haven’t gone on the first three. Now imagine that someone other than you is going to make decisions about all of them individually and see how far down your lists you get before you feel the stress growing and your happiness with your life is slipping away and the fear start taking over as to what of your life will be left.

Illness itself actually holds nothing to fear, it is something that happens and it is something that can be controlled and worked with and life can be happy. The fears only appear when your health finds that point, be it through an accident or a sudden change in your health, when others move in and start taking over, when your life isn’t yours anymore. When I think of the quality of life I have, I see that quality as still really high, but any of those changes, even one small crystal ornament that I love to look at being taken away, is a chip out of that quality and for me that is where the fear begins.

 

Please read my blog from 2 years ago today – 29/08/12 – Caring for ‘I’ 

At times, probably because of the memory problems, I find myself sat here without a direction for my writing. At one point I had a list of things I wanted to write about but I found for me that that didn’t work. Writing to a list either caused it to feel flat as I didn’t have the passion of the moment behind it or I found that although I had the subject I couldn’t find the words that day, possibly…..

Stay safe

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I have woken today actually feeling more like myself than I have for several weeks, I think this new working system that gives me just that bit more time to myself is really working for me. I have found so many times in the past that I have to be forced into doing something before I understand just where the benefits really lie, even when Adam came home yesterday he knew the second he came in that I was tired, what he couldn’t see was it was a good tired not a pushed and wrung out to last drip of life tired. I also found myself yawning yesterday, I know people yawn all the time, but I had noticed ages ago that once I hit the point where I have nothing more to give, I don’t yawn, I just sit there feeling dead. I know that compared to the average persons life, I did less than most would do on a Sunday afternoon, but it was just the right amount for me just as I am. There is only one problem and that is strangely that my brain is failing me today, I am suffering from a bad case of distractionItise otherwise known as no concentration at all, combined that with the feeling that I can do anything, I have already landed up on some strange sites. I honestly fear that I am going to get little of anything use done at all.

I woke last night at 4am, with a spasm running from my waist to my left foot, yes I know there are a lot of different muscles along that path and I admit that not all were involved, but it did feel like the majority, with one big gap, my thigh. For months now I have taken a glass of coke into the bedroom with me, just for this sort of situation, so I can easily take a booster pill without having to wonder all the way to the kitchen. There is one big flaw with that, every time I have needed to take a pill, I have also needed to work on the spasm to make it let go and let me be able to go to sleep. So once again I landed up in the kitchen anywhere, it takes about 15 to 20 minutes for a pill to kick in and when it is that painful, lying down in bed isn’t the best place to be. I nearly removed it all and put it back in the kitchen this morning with the intention of just accepting they are just there in the kitchen when needed, but strangely I have become attached to the fact they are in the bedroom just waiting for me. I can’t make logical sense out of it but I have developed a safety net attitude to something that doesn’t work.

It set me thinking a little about a lot of thing, like the routes I take through the house, staying close to walls, walking from one what I see as a safety point to another, when the truth is those points probably aren’t any safer than anywhere else, unless I had the luck of falling precisely towards them. I don’t know about anyone else, but I have yet to take a fall that I can control the direction of, if my legs decide to let go, well I go down in what every direction they choose. Yes if I am feeling dizzy then there is a point as I can then lean towards something or hold onto it, or even rest on it, dizzy allows that but it isn’t the only reason for falling any longer. For years when I fell it was always because I was dizzy and that was when I learned to wall hug, a typical behaviour of anyone with MS. We all walk along with a hand half ready to catch ourselves and doing what we can to walk in a straight line rather than imitating a weaving snake,or the town drunk, walls help a lot with that. In the last couple of years my muscles have grown weaker and weaker, these days they can just suddenly refuse to hold me any longer, just as they can then refuse to help me get off the floor that they landed me on. Nothing I have here can stop that happening other than trying to not stand any more than I have to, which works well with energy saving, but almost none of the things that I do to stay on my feet, are really that relevant any longer, fact they are a past safety nets that I still hold onto, just in case and I am sure that I will never let go of again.

I suppose we all hold on to things that have protected once, in the belief that they will protect us again in the future, just as some people have strange beliefs that a certain object brings them luck and if it’s not with them, something terrible will happen. Illness and I am guessing old age, changes the need for luck into a need for self-preservation, just as I have no desire to remove the tablets from the bedroom, as there just might be that time when I wake in so much pain that standing and getting out of the room would be impossible. With the huge amount of painkillers that are in my system 24/7 the chance of that should be around nil, but I can’t take that chance, even when it doesn’t exist. Fear is the strongest thing I have ever come across and one of only two things that I have never been able to totally control, the other being love, it’s just fear isn’t as nice. The level of pain I have daily is liveable, just as I said yesterday it is at a level where I can still function without being fuzzed out by drugs, that doesn’t mean that I haven’t felt pain so intense that I haven’t known what to do with myself. I have frequently and every time I have, I thought it was the worst pain I have ever had, only to be beaten by the next round of pain. As pain grows so does the fear, the more you fall, the more you fear and well that fear, it actually grows, all by itself as well.

I have fully accepted my illness and all it does, but accepting the fear that goes with it, was and is a totally different process. We all find our own way through, but I am reasonably sure that every single one of us, has a trail of physiological safety nets, as truth be told that is all they really are. They don’t hurt any of us, but I am reasonably sure that when it come to all the things they are there to protect us from, 99% won’t save us in any way at all, they just delude us into feeling OK and that is something we all truly need.

 

Please read my blog from 2 years ago today – 28/08/12 – Mind Journey 

I am already feeling sorry for Adam, I kept snipping at him last night. Any opportunity and I answered in a fashion that I wouldn’t normally do to him. I am stressing and I have to stop it! It is only Tuesday so I have no idea how I will be by Friday. Yesterday, thanks to having to sort out the transport I got…..

Time for action

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I have a new hole in the roof of my mouth, the scab left painfully and suddenly when I was eating my lunch yesterday. It felt so big that I have to get a mirror and take a look and I was shocked, it is about the size of 5 pence piece and slightly deeper, I am sure it will in time fill in, but whatever is happening in my mouth just now, it sure knows how to leave its mark. In my entire life, I can only remember having a couple of mouth ulcers, tiny little painful things and both were on the tip of my tongue, the perfect place to remind you every few seconds that they are there. I checked again online yesterday and still no luck in finding exactly what it is, but I did find that cankers can appear after the age of 30 in some people with compromised immune systems or with certain autoimmune conditions, not the ones I have, but it is a possibility. The fall down though is that the first one appeared on my hard palette somewhere they never appear apparently, I have decided to keep using the mouthwash and if the last one heals and disappears, I will just put it down as one of those things, but if any more appear I will give the doctor a call. For now, well I will just keep playing with the dip until it vanishes, what is it with things like that, no matter how many times you tell yourself to leave it alone, you suddenly find that once again, you are playing with it?

Regular reader will know that I have a few select TV programs that I don’t just enjoy as they are well made, but I also enjoy because the throw out there questions that all of us with health issues think about but all too often don’t talk about, just hoping that one day the opportunity will arise. We were watching “Holby City” last night, a hospital drama for those who don’t know, when one of those subjects arouse, Adam and I had spoken about this one in the past but I am sure that it is one of those subjects that pulls many families apart. The character was dying from cancer and his palliative care team had him on some really strong painkiller which made him sleep all the time and he wanted to feel more alive and able to do things other than lie around at home. One doctor was totally against changing his meds and the other just changed them, then took him out for an evening to a charity ball, although he couldn’t eat, she described the flavours, texture, and enjoyment of not just the food but the whole night, giving him more than just the role of sitting watching, but helped him feel as though he to could eat and dance. Clearly, he loved every second but at the end of the evening, he suddenly started coughing up large amounts of blood. They got him back to the hospital where he died within minutes, he died in front of the doctor who believed he should have been doped up and in bed, living as long as possible. The story on the program clearly hasn’t ended, nor will the arguments in families around the country either. Luckily both Adam and I are in agreement to a certain extent about living well for less time and living as long as you can. I say to a certain extent as we will never agree about my smoking, I put it firmly in the same camp, I love every cigarette that I have and with so little left that I can enjoy, they are important to me, to him, well he sees it as my choosing to kill myself quicker, when just stopping could mean we have more time together. It is the one thing we don’t agree on, but on everything else we totally agree, enjoyment of life is more important than longevity. I don’t have a list of things that I wish I had done, I have pretty well done all I wanted to, I don’t even have a list of places that I wish I had seen, yes place it would have been nice to have seen, but I’m not that bothered that I haven’t. Even if I did, I couldn’t now go and do anything, my health has gone too far for that, they would be the longest journeys ever, having to stop for days just for me to catch up on sleep. Despite saying all that, if I did suddenly have a huge desire to do something, well I would, even if it did cut more time of my life, I only have this one shot at it and dying sooner than later, doesn’t change the fact I totally adore both Adam and my family.

Besides the issue of quality of life and longevity, also came the one I expect just like the disagreeing doctor, those who are fit and health find hard to get their heads around. I have spoken about it often, the balance of pain control versus enjoyment of life, again the patient and I were in total agreement. I don’t want to be in pain, but when it is a choice of being alert and alive with a degree of pain we can live with, or drugged up, pain-free and unable to live for more than a few minutes each day, well to me the choice is simple. I was glad to see both these subjects appearing yesterday as I know all too well people don’t talk about things like this as it is too painful to even consider, but just like the show, I have come across medics who believe that the only option is high pain control, lying in bed and staying alive for every last second possible. I have lost count the number of Sargent Major type doctors I have come across who bark out orders and tell us that they know what is best, do they? Is it really for the best that a dying patient is revived over and over again, so they can lie there a little longer surrounded by family, but in a body that just wants to give up? Life is about living and just because you can still take a breath and your heart can take another beat, each time the doctors intervene doesn’t mean that they should. All of us should think about how we would feel in the patient position and then make our feeling both known to our family and our doctors, whether we are ill or not and those who are ill as I am, well we should all have a plan for good living as that should cover it all.

 

Please read my blog from 2 years ago today – 25/08/12 – Two Me’s

Well, the letter I have been waiting for from the hospital has arrived!! I could hardly believe it the appointment is for this coming Friday but, oh yes, of course, there is but, that haven’t mentioned anything about the transport that I need to get there, so I have been trying to phone all morning and the number…..