Vanishing lifetime

I went to my bed last night at 7:30, exhaustion had made the whole day difficult to get through and when Adam came home I told him then that I really needed to sleep. I sat up for another hour as I wanted to spend some time, no matter how little with him before letting sleep take over. I still wasn’t ready to join the world thought when the alarm brought me out of my 12 hours sleep and in all honestly I am already struggling to just keep working through my morning routine. Once again I have clearly entered one of my sleepy spells and I know from experience there is little to do, other than give in. The hardest thing about wanting to sleep this much is always the lack of time I have to fit into the normal worlds hours, exhaustion doesn’t respect working hours. Not having the time I want to spend with Adam, even if it is just sitting together watching TV with passing comments, the simple normality of married life goes out the window. I know without a doubt that last night I could have easily been in bed before he came home from work, still sleeping to the morning without seeing him at all, but it’s not what I want. It’s not something I ever want to happen, but I guess the point will come when I will not have the slightest choice in my bodies decisions. In just the past year my sleep hours have increased dramatically and are still increasing when ever I let them, it makes a normal life impossible and puts more and more pressure on all relationships.

Adams family were given time slots quite a while ago now in which it is safe to call without waking me up. During the day they know that if they phone in the afternoon between 1 and 5 pm they will more than likely wake me up, I don’t always seem to go into such a deep sleep during the day and waking me means I will sleep earlier that night. At night it is the same, but once I am deeply asleep they are unlikely to wake me, I don’t know why but it has always been the same, that if I am woken at night I can’t get back to sleep straight away, I always have to get up and often will stay up for a couple of hours, clearly that throws everything out of line for me. Sleep dominates both of our lives, lack of sleep always makes every pain worse and destroys my ability to talk, think or do anything else. Just that one interruption to my sleep actually will upset everything for several days to come, it becomes a vicious circle as the increased pain stops me from sleeping and the lack or sleep increases the pain. There are no simple answers and all of it circles around one thing, just wanting to have time spent with my husband.

Illness can stop life working normally for so many reasons, but the biggest impact is always going to be on those relationships that mean the most, our partners. Adam cares for me deeply and I have no doubt about that but he also is the person who alone has seen me change from the energetic wife who never stopped for a minute, into someone who is finding life harder and harder. I know only from what he has told me, although he doesn’t really like talking about it at all, but he has at times opened up and told me just how hard it really has been for him to live with, the greatest thing I have picked up on is the fact he feels useless as he just doesn’t know what to do to help. That is something I can totally relate to, but I can’t make it easier for him as I don’t know what to do myself. The cold truth of chronic illness, none of us, doctor, patient or partner know what to do to make life normal. I don’t want to be the person who can do nothing other than dominate everything that happens within our home, I want to go back to being his wife. I know I will never be well again, but I would be happy just to be able to live a life that rotates around the rest of the world, rather than living in a constant zombie state, sleeping and living a life that no one else can help me get out of. I just want to be able to spend time with the person I love, but all I can do is disappear into sleep and leave him alone while I am once again in bed. It’s hard to maintain a relationship when you only see that person for at most just 2 – 3 hours a day. We wouldn’t even manage that if Adam didn’t come home at lunchtime, as that makes up half an hour of that.

Loving each other is a huge boost as when you are as useless as I am, just knowing there is someone who care, someone who will tuck you into bed when ever you can’t stay in the real world any longer, means far more than I can put into words. But I still wonder how you have a relationship with someone who is asleep all the time, what happens when I can’t even manage to be awake in the evening at all? I never saw this coming and no one ever gave me the slightest hint that sleep would be such a huge part of my life. Adam has to work, I have to be ill, that is the way it is and I expect like everything else we have already handled we will find a way of making it all work. So far it has been a slow step by step process and we have worked our way through each and every change, I just don’t want to face a future of seeing even less of him than I do right now.

Avoiding depression

I have always been someone who likes to live life with challenges, to have lists of things to achieve and to work on, not for money, praise or anything else, other than self pride. I have lost count the number of times in my life people has asked me “why are you doing that?”, then staring at me in disbelief when I answer just because I want to. Most of the challenges I have set and completed where never thought about for long lengths of time, or considered even as to how long it would really take to complete. I would wake one day with a new idea, go out buy what I needed to at least start it and got started straight away. When Teressa was a baby that I decided to make a huge embroidery, the same size as the frame of a single bed, none of my friends or families could understand why I was taking on such a huge project, even as it grew and they admired my work, the why questions still continued. There was still this disbelief that someone wouldn’t do such a thing in this century, something that continued for as long as I owned the finished article, it was sold when I was divorced as I didn’t have an appropriate wall to hang it on. It wasn’t only embroidery that I filled my spare hours in, you name it I have probably given it a go, DIY, gardening anything that I could channel my need to achieve into. I never believed in just sitting doing nothing, there was always something to be done, be it the humdrum housework or the more artistic and creative side, I never just let time pass it had to have purpose. When my health put all of these things into a column headed impossible, I switched to things I could do here on my PC. Programming a design for business applications filled not just my working hours but my spare time as well. Goals and achievement, small things on the surface but they are often the things that give us the feeling that we are of use, we can do something that will make a difference and we have purpose.

I guess this has actually been the hardest change that my health as enforced on me, I don’t have the choice any longer of what I will create or produce today, as I can’t do any of the things I have done in the past. With so much time now available to me, finding things that are worth while and I can count as an achievement in any way or form, grows harder by the day. I also guess, that this far more than anything else is the reason so many become depressed by illness. It is increasingly easy to start to feel as though you are a pariah rather than being able to contribute anything of value to life, I know because I did have a very short spell when I felt just that way about myself. Recently I have been talking to two people who are exactly at that point and believe me it is a really hard thing to get past and to make yourself feel once again like part of the world. For me the answer well is what you are reading now, I channelled my need to give, achieve and be part of the world, into writing and all the other pieces I contribute to in my life on line daily, but my recent contacts have left me wondering and worrying about those who don’t have the drive to do what I do. I can’t help feeling that at the root it has to be self-worth, that feeling that you still have a use or purpose and that you can still actually do something, not easy to achieve for some. I think the biggest mistake some make is to just look at it as something to fill time, anyone can fill time, but it doesn’t do anything other than exactly that. Filling time can be the most boring thing on earth, prisoners used to move stones from one pile to another and back again, again and again, it filled time and it destroyed them as people.

I can’t help feeling that the NHS are missing a huge trick when it comes to caring for chronically ill patients, it isn’t just about giving them the pills to take away the pain, or to help them sleep or anything else. I’m no doctor but helping them to make goals, to keep achieving and to have a purpose, would improve their health far more than just the tablets alone. I was lucky, I had always from childhood on been use to setting my own goals, to set out my own achievements and to not just exist, but to live and be as happy as I can with what ever life has given me. Everything I did in the past is now there, in the past, but I set a goal that was within my abilities as they are now, I write. Some might say I am filling time, but I know it is far more than that as it gives me purpose, my purpose is now stretched out around the world and I couldn’t have a better feeling of achievement as I get knowing that other feel good because of what I do. I can’t help all of those who ask me for it, as I don’t have the ability to guide them in their lives, I am not qualified to do such a thing, but I do think it is time that all those organisations out there who say they care for the chronically ill, stopped treating them as ill people who need someone to hold their hand and start treating them as being in need of a goal and a purpose.

I believe that it doesn’t matter how ill someone is, if they have daily goals, even very small ones, goals that give them with pride in themselves will help them far more than their pillow being adjusted. We are still of use to the world and more importantly to those we love and to ourselves, sometime a kick is required to remind us and sometimes we just need guidance. Stop trying and you start dying, bluntly said and bluntly meant, I can say it as one who is dying, but I still have a life to live before that happens and so has everyone of you.

Understanding changes everything

Yesterday turned in to one of those odd nothing days, a day when it just seemed to run past me and I somehow did nothing but add on to a list of the things I was meant to be doing. The list grew and I still did nothing, it wasn’t as thought I was doing something that was holding me back or filling my time, I was doing little to nothing other than chalking up something else not done. I have been really tired for the last couple of days and I know that it doesn’t matter how hard you try, when you are that tired you just aren’t able to do the simplest things. It is as though someone has switched you off and all you can do is watch the time pass. My high points of yesterday were the two times that I slipped in to bed and lay there warm and heading to sleep, my low points where when the alarm told me again that I had to get up. Physically the only real down and possible drain, as pain and all the things that surround are very draining, has been once again my left side or lung. There is always on thing, one pain area that seems to over ride all the others and make them fade into a place where they haven’t vanished, but are displaced, everything is focused on that one over powering area alone. When something nags away at you constantly, it eventually becomes impossible to ignore, any one who lives with pain all the time, will know all to well that you don’t forget or stop feeling the other pain area’s, but the one that will give you no peace or no relief at all, just takes over your life at that point in time. Sitting or lying down I haven’t found any real relief from it at all, don’t get me wrong it isn’t the type of pain that you want to scream at, moan and grumble yes, but scream no. The big difference between this and the pains that might you toy with the thought of amputation, is a limb isn’t required for survival, your lungs are. I guess that I am winding myself up about all of this, it isn’t as thought I can’t breath, I clearly can, but a lung that goes solid isn’t normal and I as I said the other day, I don’t have a full and clear understanding of what is going on.

No matter what is wrong with you from the simplest condition right through to the deadly ones, fear is the biggest issue that we all have to deal with. Once you fully understand your condition and when you know what to expect, it all becomes so much easier to live with. I doubt that anyone will have made it through life to what ever age you are, without at some point finding yourself terrified simply because you don’t know what is happening to your body. All of us have illnesses that are just a normal part of life, but during those illnesses there will probably have been times where you have found yourself scared, fearing you are that ill that you won’t wake again. I can think of several, some that have even found me at the local A&E department and once I required an Ambulance to take me there, but on almost all occasions once a doctor has totally explained what is happening and why you feel so terrible, well suddenly you feel that bit better. The doctor has done nothing other than reassure you, but it is as though he has removes at least half of the illness you have. In just the same way I know when I was told that I had MS and I was told what had been happening to me for years was all part of it, I felt better, not cured but better. The biggest change has been that I haven’t had the slightest sigh of depression since that day, why? simple, they were now believing me that I was ill and were no longer treating me as a nut case.

Chronic illness is always going to be different from having a bug, or any short term condition that will go away. Once you know the name of what is wrong with you and you have an idea what will happen, life gets a lot easier for a while, but eventually thing start to happen that no one has told you about, you develop problems you can’t pin down and can’t help but believe are just you, as there is no sign of anyone else going it through it too. The longer you go without an answer or a clear idea of what is causing you to feel the way you do, the more you begin to fear that your symptoms are signs of your illness getting worse. No one tells you what to look out for, what signs are those that show you need to get medical help, or how long something has to be that way before you make an appointment for your doctor to come out and see you, or do you head to the hospital to get it checked out.

Both those issues play on my mind, I am one of those brought up to believe that seeing a doctor is your last line, after all you don’t want to waste a doctors time do you? Yet with my trapped in the house unable to get down the stairs, how I am meant to get to a hospital without also calling an ambulance and all the issues that go with that, especially if all I need is an antibiotic. Then there are a whole range of problems that a hospital visit brings with it, yes they would get me there, yes a doctor would seem me, but what if they want me to stay there? The issues that arise then for me are huge! They won’t let me bring my wheelchair with me and even if they did I am not sure how well I would be able to get around, although everywhere is flat and they do have lifts. Being a life long smoker there is no way I could stay much over a couple of hours without a cigarette, regardless of rules. I am also a picky eater these days and I can’t imagine my eating hospital food, but the biggest issue would be sleep, sleeping on a ward is a nightmare itself. The final nightmare is getting home again, even if I don’t stay I still need to get home and arranging transport is probably the biggest nightmare of the whole hospital visit. I know I have spent too many hours already waiting for them. Yes I have thought it through, I have thought it through because an emergency hospital visit is probably now my greatest fear, to the extent that I know already I would do almost anything to avoid it, including letting my health dip a very long way before asking anyone for help.

Illness is supposed to be a process of getting well again, chronic illness is a process of managing a health that knows only one way of travelling and that is worse, not better. No matter if it is a limb that won’t work properly or a lung that is filled with cement all are just part of my health but I don’t have a plan written up to help me understand what might come next and how to call when or what might appear today. The result although I doubt intentional is that chronic illness eventually becomes a case of not managing your health but managing your fears, from the tiniest to the most enormous. It would be nice though if they gave you just that bit more help in sorting all of that out.

Where did I go?

I know that in the last couple of months I have returned again and again to this subject, but it is one that is growing in it’s importance to me and as I always presume that what I find hard, well will be what others out there also find hard, so I make no excuse for returning here again and again. When your mind doesn’t hold onto a thought long enough to make that transition from mind to mouth or mind to typed, it gets harder and harder to actually feel as thought you can possibly be part of the world. I know that I am far from being the only person who through no fault of their own, just the fault of illness, now finding it harder and harder to actually feel in control of my own life. Memory is a strange thing, especially when you think about all the different levels of it that we use on a daily bases. At it’s most basic we use it at a lighting speed when we are talking, there should be a seamless line, no real thought, just words flowing out of our mouths and totally in our control without us even knowing it. We learn as a child to remove those hesitations, the umh’s and er’s, the pauses that other take as some kind of instant proof that we don’t know what we are talking about. They betray us as not having confidence, not really being in control or having the depth of knowledge and the older we get the less acceptable they become. Imagine going for a job interview and sitting there slurring your words or stuttering through your sentences, stalling in mid flow and being left hanging in the air, with no way of proving you are the one they should employ. Now imagine feeling like that every time you open your mouth.

Often it is of no importance, but there are times when Adam and I can be talking and he will leave the room to fetch a glass of coke, gone for no more than 30 seconds, on returning he wants to continue where we left our conversation, but I can’t remember even the slightest part of it, his first sentence leaves me sitting lost with no idea what he is talking about at all. I know at one point in my life I was able to speak fluently and fast enough to have worked as a DJ full time in pubs, clubs and local radio, I admit that you don’t normally talk in a club, but you have to have a brain that worked 5 or 6 tracks ahead, and to know without being able to see a record clearly, that just by the groves alone that you have the right one. You don’t get a job on radio if you aren’t fast witted or able to have a conversation with an invisible audience, my once bright and shiny brain had left the building, what I have left is something even I don’t recognise as me. I guess that is the real problem, you can do so much to make life with pain easier, to adjust to lack of mobility or dexterity. You can get round most of the horrors that illness throw at you, millions have been spent on creating the gadgets and gizmo’s that make life more bearable and easier to manage. You are supplied with the tools to keep you as much as possible as independent but when it comes to your mind, you are on your own. There are no easy answers, despite all the things they try to tell you will help, try as they might to arm you with tricks to help you get through the day, all those coping mechanisms, the coaching on how to talk and how to stay in control, all fail as time goes on.

No matter what you set up to help you get through your life in a hope that as time goes on and less and less of your mind is working, you will still be able to access all those nooks and crannies. To just be able to be sure that that memory of childhood is real, not confused with something that happened to someone else, or even seen on TV. The less you can trust you own mind, the more scary the world becomes, all to often you find yourself sitting scared to do anything because you just know that your mind is going to fail you. Nothing is simple not even going to fetch a drink, or going to the loo, they become a lottery as to what you actually do once you are on your feet and I do mean a lottery. Sometimes I find myself rambling, talking just to try and prove I am still me, to prove to myself that my mind works but driving Adam up the wall when I keep stopping and starting, lost for the next word often so badly I just stop where I am, giving up on it and starting to talk about something else because I am determined to keep going, determined to find that mind I once had. I can’t imagine how frustrating Adam finds it and to often without meaning to I here that sigh that tells me once more he has had enough of my not complementing what I am trying to say. I know he doesn’t mean any harm by it and when questioned as I have done a couple of times, he changes it as being for some other reason, if so his timing is amazingly queued up with my speech. I don’t think that anyone who hasn’t been through slowly loosing there mind, memory and brain can fully understand how frightening the whole thing becomes. Loosing a limb was frightening, but nothing in comparison.

Those of you reading I know will say well she writes well enough, how can this come from the mind she describes, I don’t really know other than the fact that unlike the rest of my life, I can rerun it, replay over and over until it is right. Maybe that is why I need to write so much as spilling out these words are the only place that I know I can’t get totally wrong, as long as I have enough time to just go over it again, or even again, I can at the very least give an illusion that I am still that person from years ago. Yesterday I wrote of how it felt to loose your friends, well the closest friend you will ever have is yourself and just as I said yesterday even knowing and liking yourself takes work, but no matter how much work I put in, it still does what it wants and it still keeps letting me down, how do you stay friends with someone who does nothing but disappoint you. Once my greatest friend, now at times a total stranger.

Family break down

When the day start with the shock of touching your feet to the floor and burning pains seers through the soles and fires up through your shins, well you have to wonder what the rest of the day will bring. I know all to well that burning in the soles of your feet is a clear sign that you have nerve damage, I have over the years read all the bright spark on line information you can find, always telling you just what you already know all to well. I guess in a funny way that is often the worst thing about reading, all to often what you trawl through looking for answers, it supply’s you with nothing new, no miracles and no cures. I remember a telephone call with my mother a few years ago and she was once again complaining about the process of ageing, her biggest complaint that day was about her feet and how the soles burned terribly and how she had been waiting for months for an appointment with a specialist to find out what was wrong with them. I told her exactly what was wrong, but she refused to accept that there was nothing that they could do about it, no treatment nothing. She wouldn’t accept that she would have to live with it, as it was such a terrible issue in her life. It was a couple of weeks later that she saw the doctor and they told her just what I had, although they had given her some medication it wasn’t working, but she just didn’t know how she was going to live with it. For some reason this morning I remembered that conversation, I also remembered telling her that it was one of the more minor symptoms that I lived with and I remembered how she wouldn’t believe me, she never has done, as she has the position in our family of being the one who has to have everything worse than anyone else.

My mother and I seldom talk, usually about once a year, at Christmas, something I know many don’t understand but as my health has left me, I have found it easier not to argue with the font of all knowledge. It doesn’t matter what we land up talking about she will never accept that my version of my own life is more accurate than hers. According to her I just haven’t managed things correctly and that I should be living now in a specially adapted home with much higher benefits than I have and if I had insisted I would be on more powerful and effective medication than I am now. The best of it is that none of her knowledge had come from personal experience or investigation of the system, but from gossip at the church about other parishioners. It doesn’t matter what is wrong with you, there are always people who like to think that they know better, or worse than that, the ones who don’t believe the truth of your own life. Long term readers will be well aware that my relationship with my family has never been a great one, but it is one that has been totally destroyed by my health. Managing life long distance is difficult for most, but once it becomes impossible to make the journey to see them, there is little left to make it possible to hold on to each other at all. If you don’t live within a few miles of your family, trust me they drift away even further once you are ill.

Making a phone call is a real nightmare, there are so many things that makes it something that I avoid, but I try to make the effort with those I love. First I have to say like most elderly people my mother doesn’t have a computer and actually neither does my brother the other member of my family who drift in and out of my life. So contact is down to the old fashioned process of making a phone call, just holding that phone causes pain, not just in your arm but also in you neck and into your side. It doesn’t take long, sometimes as little as 5 or 10 minutes is enough to start the process, but once started even changing sides help little, as you land up with both sides of you screaming to end it. That may be the easy part to understand but the rest is probably what no one would think of. Lets start with a simple fact, 6 yrs of being housebound leaves you with little to say to someone you haven’t seen for all that time and longer, there is nothing new to talk about other than changes in your health. It isn’t as though there is anything new or exiting to pass on, no children to fill the time with their latest antics or anything outside the walls you live in. Then there are the speech problems, a constant run of stutters and word lose, all that seem to be exaggerated somehow, those silences seem on a phone to last for ever. Just as when you spend time with someone face to face, you quickly start to tire, exhaustion creeps in as quickly on the phone, if not quicker, just making all of it that bit worse. Within minutes you find yourself wanting to run away, to get off this painful, confusing instrument of torture. It isn’t the person you want to get away from, regardless how aggravating and annoying they are, it is the whole process of sitting there trying to make contact with a person you know less and less. From my side I have to add in that the final problem when you have brain damage is you simply forget to even pick up the phone and call them. It never enters my head to do it at the point in the day that I could, but then it takes me several days to remember to phone for a repeat prescription, despite leaving reminders, I forget that too.

Every relationship you can have in life is made harder once you just don’t have the health to make it work. Relationships require an on going interaction, but when you can’t do any of the work, as work is what is required, well it is up to the other person to do the work for you, but they don’t. It isn’t surprising that so many when ill talk of being isolated, but the isolation is actually enforced by those who you thought were in your life for ever, just giving up as it is all to much like hard work, a fault on both sides. I guess the longer you are ill the worse it gets, I am now down to Adam, Teressa and Jake, there are the people who know I am still alive and actually talk to me. It is all to easy to see just how you can land up alone, despite at one time have a large circle of friends. No matter what technology you have I don’t see this changing, it is just one of those facts of life.