Joining the dots

Every cell in my body is no longer just tell me, they are changing, they are now screaming it, so loudly, that my head is ringing with it. It’s about six months ago that I first felt that I was in danger of being on my feet and that my wheelchair, was once more, needed in my life. At about the same time as I found that not only; were my legs muscles becoming a fan of just collapsing; every sensation my PRMS had found to play with, had also become heightened; so to where my tremors, they were increasing; my spasms were more frequent and favouring the more intense, and my mental symptoms were, well they too were more intense; everything was moving, and moving rapidly. Six months is an incredibly short time, it’s not like when we were children, when months lasted forever, now, especially now, they have become incredibly short.

When that day came that I let the words actually come out of my mouth, “I need my wheelchair”, I had this huge lump in my throat. It was all well and good, thinking it, thinking it is safe, it’s silent and no one other than you knows that thought is even there. Saying it, is like writing your own death warrant, there is no going back. Admitting it to the world is a very different thing from the world telling you. If a doctor or the MS nurse had said, “Well Pamela, I really think you are going to have to use that wheelchair”, well I would have had someone to blame, an outside observer who had diagnosed a weakness, but I just had me. I think it was the first time where I have been the only one, behind changing my life, prescribing what was needed to deal with the course of my health. I was also doing something else, using a great big piece of equipment as a foil, not to hide me, but to hide what I didn’t want to see, or even think about. It partially worked. It was a distraction. I had to buy this or that, make sure that I had the optimum space to manoeuvre in, without rearranging the entire house. Things to do, things to think about, anything but stop and admit. I could bypass everything other than my brain, it has a nasty habit of showing the world my shortcomings. Stutters, slurs and blanks, appear throughout almost every sentence I dare to try and speak. Adam, well he’s used to it, but my visit to the hospital two months ago put a spotlight on it. The consultant spotted it the second I entered the room and tried to speak.

No one but us, knows about those maddening sensations, unless, we tell them. Well, no one can see a tingle, or a lightening shock hugging our skin, not even us. Unless we jump, squeal or flinch, they are our secret. Which probably makes them one of the hardest things for those who don’t have MS to understand. Yes, we can explain, that they feel like this of that, but the average person, they only feel something similar for the briefest of seconds. They have no concept, no understanding, or any way of even imagining, what it’s like to feel them for hours, days, months or even years. Pins and needles, so what there nothing. Maybe, until you have them running across your face for a whole day. Nothing, until someone, turns those pins into knives, and those needles into spears. So numbness, well it must be a joy to someone who lives in pain, isn’t it? You might think that, but MS has a trick unique to nerve illnesses, we can feel both, in the exact same spot, at the exact same time. Internal feelings have nothing to do with the real world. If you apply moments though the danger of numbness is real. Burnt hands from an oven, fingers from a cigarette, cuts that you don’t know are there, that fester before you spot they exist. Food and drink that falls from your mouth as you don’t really know if your lips are closed or not, as you can’t even feel them, or the food. Sensations matter, be it missing ones or created ones, if they aren’t exactly or even close to what they should be, they disrupt everything, create danger and generally, make life hard.

Last week, I described a bad spasm, bad, not because of what it did on the pain scale, but because it made my health all to visible, in a not too pretty way. Not all spasms are visually dramatic, many, like those who take sheer pleasure in stopping me from breathing, constrict, just below that pain level. To find a point, in any day, where either my diaphragm or my intercostal muscles, haven’t held that position, in the last couple of years, is hard. In that same period, I can’t say that for any other part of me. 2 years ago, I went days without feeling a spasm anywhere else. That was the point when my PRMS found my intestine, but still, the rest of me, I went days. When they came, well in comparison to my torso, I really didn’t care. They were there, they were annoying, but they didn’t last, and they didn’t hurt, beyond a normal cramp, or stitch. They were mundane and forgettable. Technically, a tremor is nothing more than a fast twitch spasm, yet when it comes to dramatic effect, back then, my tremors won hands down. The spinal twitch was the best, it swung my enter body, from my toes to my head, in sharp jolts, from side to side and still does. My hands before my chemo treatment, did a complete and expert impression of late-stage Parkinsons. Post chemo, they settled to odd spells, that never lasted long and I could hold my hand out in front of me, not steady, but not flapping all over the place either.

So why the requiem, because all of this, just like the need for my wheelchair has changed too, and in just as big and as solid away as moving my chair back into my life has. My first paragraph, well it laid out the glimmer of the facts. My legs were the dangerous factor, the one part that was partially fixable by adding my chair. A wheelchair doesn’t make your legs stronger, it doesn’t stop the muscles from collapsing, and you don’t have to be standing to feel it. You might not think you are using you leg muscles when you are sitting, but you are. Sit there and totally relax your lower body and you can feel the difference. When it happen unconsciously, it affects your entire posture and body. Suddenly, you have what are in all respects two long lumps of flesh with pins in them. They are closed off, separated from reality and feel just as dead, as they would be if you tried to use them to stand. When you are in a wheelchair, believe it or not, unless you are a paraplegic you use your legs in every push. Dead legs, make every push twice as hard as they are with your legs to assist. Now add into this, the fact, that that feeling of weakness, and even deadness, is now appearing in your arms. I now, especially at the end of a day, find myself sat in a chair that I couldn’t move without, but with little of the strength or movement required, to actually achieve propulsion. My foil now feels more like a folly.

Spasms are now stronger, but that isn’t what bothers me, it is their weaker cousins that are making life tough. Doing simple things like lifting my feet so they can sit on the rests on my chair, is now literally, a hit and miss process. My muscles jump, kicking away and far too often, into the foot rest. The precision required to place in where needed is almost gone, just as it is when I’m walking. My left leg is far worse than my right, and if I had to take more than a couple of steps, would without a doubt, trip me up. Just standing can be enough, to send it off in some kind of fit, twitching and flicking itself all over the place. At it’s worst, I don’t need to even stand, it just twitches unstoppable, and those twitches in my hands, are returning. If the worsening of existing and the return of the once fixed wasn’t enough, now I also have the vanishing voice. I haven’t mentioned it for a couple of weeks, but it hasn’t gone, it just comes and goes at will. I had to mention when I was at the hospital, as it chose Monday as a good day to vanish. At least my PRMS chose that day to show itself and its latest trick.

I felt all of this growing, just as clearly as I felt my legs leaving. My concentration on making life in a wheelchair work, for me, allowed me to, not so much ignore, but more, to put aside as secondary issues, everything else. I couldn’t ignore the change in my breathing, as yes, that too appeared at the same time. Clearly, something six months ago kicked my progression into high drive. I don’t know what, I just know that my body is falling into the abyss, faster than it has done since 2 years after my diagnosis. Then, Mitoxantrone was the answer, but that was a one-off, I was told then, that I could never have it again. It does so much damage to your heart, that they don’t dare do it again. So this time, I am on my own. I know Adam has seen all of this, just as I have, he would have to be blind to not have. Like the sweetie he is, he chose to respect my lack of discussion and the blind eye, I was clearly turning on it even in here. So now, I have publically joined all the dots, brought together the fuller picture, now I just have to work on living with the results.

Please read my blog from 2 years ago today – 13/11/2013 – Sharing the same space

My day was in a bit of a muddle yesterday, it seemed OK on all the main points and I even completed the shopping that is due to arrive this morning. I don’t know how or where it went wrong but I was……..

So far, so good

I really didn’t think that I would even get the chance to start writing today, but finding myself up and awake at 5:30 am, thanks to Adams snoring exceptionally loudly, here I am. Actually, it’s not fair to put all the blame on him, yes, he woke me, but my stomach was telling me that I needed the loo, so even if I had managed to shut him up, I still wouldn’t have been able to sleep. In other ways as well I am glad for that earlier start, although I doubt I will be saying that by this afternoon. It is just touching 8 am and I have shoved through everything I would normally do for twitter and managed to get myself ready, so whenever that Ambulance arrives, all I need is my coat. It’s really odd sitting here knowing that I have my makeup on and my hair done, and not just my normal bed head design that prevails at this time of day. I feel like a different person. The entirety of this post is going to have to be done in bits, as I grab a few minutes in between the final touches required before we go, and of course, dependent on when that is, and when we get home again. I just hope it won’t be too bitty.

Something really odd happened last night, not with my health for once, but with my hands. I have been wearing rings on nearly all my fingers for most of my adult life, but the center finger on my right hand had four completely stuck on it. The last one to go on was actually a stupid thing for me to have done. I knew before I even shoved it onto my finger that it was going to be a tight fit, but I have for some reason got rather large knuckles, which means that the even if a ring is too tight to pass over, it will still spin around annoyingly once on. When I pushed it on to my hand, I did so as a way of keeping the other three still. At first it wasn’t a problem, I could pull it off with difficulty, but it did shift. Then I gained weight, need I say more. For at the least, it has been there for 9 years, but possibly longer. I don’t think I have lost weight suddenly, but for over a week I had noticed that my other rings were spinning more freely, so I grasped it and pulled, why it came off I don’t know, but off it is. I know this is a dipsy suggestion, but, could the fact I am using my wheelchair mean that my fingers are losing weight, if not the rest of me? It’s just an idea, but it’s the only one I can think of. I haven’t seen them for years, but I am sure they will be online somewhere, but I really need to buy some ring guards. They act like a spring fitting and let the ring pass over my knuckle then jump tight, holding the ring the right way around.

10 am. I really didn’t expect this, but we are home! Hospital visit complete and without the slightest hitch, if only it was always like that. We arrived at the hospital and were seen within 10 minutes of the ambulance drawing up. The doctor was really nice. She looked not just at the one I was worried about, but several others that are on my back and one that is on my chest. Apparently, I have Atypical moles. So I was right to be concerned about it, but in this case, there is absolutely nothing to worry about. She thinks that what has happened is that it had a slightly raised edge, and that edge was caught on something and been literally lifted it off my skin. Which made no sense to me at all, as I never wear a bra or tight clothes. I am also very careful about how I scratch my back, I have in the past caught moles with my nails. The more I think about it, the more I think I have the answer. Like most people, when I first lie down at night, I shift myself side to side until I am comfy. I am guessing, that that side to side shifting has been slowly lifting it off my back. Neither Adam or I thought about it at the time, but I have been left with the concern that it is actually going to continue separating itself. I have the horrific idea that one day I will wake to find it left on the bed behind me. She did say that because my moles are Atypical, as in they have raised sections and lumps in them, that we need to keep an eye on them for any changes. The fact that I don’t go outside isn’t enough, unfortunately, it is another one of those age things. At this second, we have nothing to worry about.

I couldn’t believe how smoothly the whole thing went, not even the stair-climber was as violent as usual. We were down and back up in a fraction of the usual time and I didn’t feel sick, not even for a few seconds. I know that it was only luck, but when we returned to the room where you wait for your transport home, the crew that brought us there, were still sitting chatting to the receptionist. They were waiting for a patient to come down from one of the wards. One quick call to their base and we were also on their list to take home. I had been so prepared for the fact that we would be sat there for hours, that I was sure that any second they were going to get a call back saying they couldn’t take us on the that run for some odd reason. But, no, we were off and home within minutes, if only it could always be like that. Fingers crossed, our next trip at in November will be just as smooth.

Over the last couple of weeks, I know that there have been quite a few people concerned about me due to this blog. Firstly, please don’t worry. What I have been writing in here is my inner self, my gut reactions if you like to life. I am very aware that lately my writing has been on the dark side, this doesn’t mean I am slipping into depression. When you have led a life like mine, there is a lot of darkness boxed all over the place. In normally work on them privately, but as this one is 100% about my health, it felt right to put it here. After all, the whole point of my blog is for the absolute truth of what chronic illness does to someone. It doesn’t matter what condition you have, the physical effects of them, is less than half the story. There are so many emotions that go with it, and I hope that they have all been shown. It is one of the reasons that I began to write this. You can search as much as you like, but nearly all information available about chronic illness is about the symptoms. Even then, the majority of them only tell you the basics of them. I wanted to know how they felt, what they did to your life, the true impact, not just their names. If you read back to the beginning, you will find spells like this showing up throughout. This one, though, I admit, is deeper and darker, but the phase I am moving into is the darkest I have ever had to face. Without a doubt, one of the dangers of chronic illness is depression. I have always believed that the fact I am so aware of the dangers, having had it in the past, that I should be able to control it. I don’t doubt there will be spells of it as things progress. The idea that I can go from where I am, to my final destination without it, would be ridiculous. I doubt being bedbound, will be a bed of roses.

I have made a point of always working through whatever my brain decides has to be faced. The worst thing I believe that anyone can do with anything, is box it and nail it down, that is the start of all danger zones. Yes, I do box things, we all have to, but I never put any nails in anything. My mind is free to demand that I deal with anything whenever it wants, just as it did the other day with that unwanted image. I also make space most days to deal with those thoughts I packed away for when I had time, I make that time. It’s a couple of years ago now, but I spent several months, just going back over my life and dealing with all the anger, I had inside towards people who had hurt me. I am not the sort of person who finds it possible to hate, no matter what anyone has done to me, I just can’t do it. I can, though, get angry and I had to get rid of it, that’s just what I did. I even forgave them all while I was at it. For me, it was the best thing I have ever done, that didn’t require either money or activity, and I would recommend it to everyone. Peace of mind is a precious thing. Dealing with all that ancient junk, also somehow how, helped me adjust into my new life of being unemployed and housebound.

I have gone from independent to being in need of total support, including life support. Without my wheelchair to get me around, well I would need 24/7 care and too close to bedbound for my liking. Without my nebulizer and my other inhalers, which all have to be used at least twice a day, I would find breath harder than anyone wants. Without being able to breath, well, we all know the answer to that. Mentally, it is actually a bigger adjustment than any of the physical stuff that goes with it. It is both easy and stupid to say, just get on with it, what is the big deal. My first time round using my wheelchair years ago to get around outside and in the office was a get on with it type of situation. I could deal with it with ease, as I saw it as no more than jumping in a taxi, to get me from one end of time to the other. I got in my wheelchair to get me from one end of the building to the other. But in small spaces, or at home, I was still able to walk as my problem then was fatigue. This time is different. This time, I don’t have legs any longer that can hold me up, they collapse, disappear and leave me stranded. This time, I am no longer a complete and normal person to look at, no matter who sees me now, they will see someone in a wheelchair. That is me, that is my new normal and that is a huge mental shift, and all of that has to be in here.

I know it is painful and heavy going for some to read, but I hope one day that someone like me will be able to read it and say, “I too can get through this”, that is the point. Right now, I believe that I am stepping through all of this quite well. I have thought several times, this it, I am there and I am myself again, then my brain disagrees and bang, I’m back walking through a forest, where every tree has thorns. It’s up to my brain, not me what you’ll find on these pages, every day is an unknown adventure when these pages are opened, not just for you, but for me as well.

Please read my blog from 2 years ago today – 19/10/2013 – Finding hope

I have always had the misconception that life was actually meant to be simple, I don’t know who told me that or why I have managed to got it so wrong, but still to this day I have a small section of my mind that won’t let go of that wonderful but oh so wrong…..

Week five: It’s not over

If there is one truth that can’t be escaped, it is the fact that there are as many right ways to live, as there are people on this planet. We all like to think that we have got it right, that we are the ones who can show other the way to be happy, but the truth is, none of us can. When it comes down to it, we are the only people who have both the right, and the understanding required, to know what is right for us. So why is it, that every day millions scour magazines, websites and TV channels, for that ultimate piece of wisdom, that one must have item, or that perfect person, who will make our lives better, if not forever, at least for today? If we were content in our lives, we wouldn’t keep searching in the hope that there is something out there, that we just have to find, and our lives will be perfect. It’s a fact that one group of people have made a living out of for the last century, the marketing men, they know our self-doubt and they play on it constantly. The more that they exploit that discontent, the more they make it grow, creating the perfect circle that keeps them in work. They, though, are the last people that we should listen to because if we are discontent with our lives, it is only us that can fix it and that takes a huge amount of trust.

When I was first diagnosed with PRMS, I went through all that normal things that I believe is all part of accepting what is happening to us. It is without a doubt, one of the hardest thing to go through. Our entire lives have just had the rug pulled out from under us, and rather than landing on the floor, we are like “Alice in Wonderland”, falling and falling and falling, with no idea when or where the bottom of that hole is. We grab at all those roots sticking out of the sides, at all the objects that we pass, the occasional one, appears to slow us for a while. All too often, they fail and we go on free falling and searching. Eventually, as time passes, we learn enough to slow our speed down to more of a float than a fall, but floating in space, isn’t an answer to the millions of questions no one has the answers to. I believe it is at that point that our future is really written, we either accept totally blindly, that there are no answers, that this is our life and we had better get on with it and live, or we fall apart. Blind trust isn’t something we as humans are trained to do, in fact, we are brought up to do the total opposite. We’re taught that everything has to have an answer, that all illness has a cure and that doctors are gods. That if we just demand enough, complain loudly enough, research and demand again, we will get better. They lied to us. But if you can accept that, and then take that leap of faith, to put your trust in nothing, and no one greater than yourself, well, you’re still not going to get better, but you can have a good life and you can stop both floating around and better still, falling.

It goes back to my opening lines, ” there are as many right ways to live, as there are people on this planet” and that isn’t changed by health. Actually, I think our chronic health, makes it even more true. Like it or not, society sees us as a subsection, not quite like them, but regardless of that, we should still fit into the plug hole created for us. You can hit yourself over the head with a mallet forever, once you have a chronic illness, you will never fit, ever, again. Society, quite wrongly, puts health quite far down on the list of important things required to be seen as a successful human. We judge ourselves by our looks, our brains, our personalities, our earning abilities, our social acceptance, social standing and our likeability, not all in that order, but all more important than health. Wrong, because without health, all of those fall apart. As we were falling all those things bit by bit were being blown away be the updraft, we may not have seen it at first, but eventually, we can’t help but have to. Keep falling and you fall into another endless pit, the one of depression, make that leap of faith and decide to trust yourself, to build your own life, your own standards, and your own understanding of self, and you stand a chance of living well, despite it all.

For me, one of the things I had to get through to my pig-headed self was that there was nothing, I can control nothing and there were no battles that I can win. I didn’t possess the power to change anything, it was all going to happen just the way it wanted, regardless of what I did. Friends left, work left, money left, health left, mobility left, looks faded, weight went on and the outside door, closed forever. I couldn’t change a single thing, or control even a single hair on my own head. The only thing I could do was live and that had to be my starting point. Not much to build from you might think, but it was the only thing I had, that hadn’t left, that I had true control over. We all have that ultimate power, to decide if we live or die, it’s the only thing, that once you have had what feels like everything stripped away from you, that is left and is ultimately the only thing we ever have true control over. It took me three years of being housebound, to realise that I had to stop looking outwards for the answers and I had to start looking inwards. If we are going to be happy, if we are going to have a life that means something to us first and other secondly, then inside is where we all have to look. It’s not always pleasant and it’s often almost impossible when your fighting with a body that does what it wants whenever it feels like it, but inside us, is where we find the true us, our true desires, needs, wants and goals.

Recently, I had forgotten all of that, I had let myself be beguiled by all those baubles of life that none of us really need, the things other think we want. I had let myself question what was happening to me and where the answers were to making it all go away. It couldn’t be made to go away 14 years ago when it was diagnosed, it isn’t going to be made to go away now. I can’t get back those who are gone, or the things that I lost. After 5 years of stability, I was falling again and life was out of control. I can see clearly now what through everything out of kilter, why I wanted so badly to make things change and it was all my own fault. I stupidly thought that accepting the loss of being able to walk was as simple as sitting down on my wheelchair. I didn’t think that I had to do anything else other than that, after all, I had done it before. Because I didn’t take the time to go through all those steps of loss, and just leapfrog over them all, what I did was open a huge gash and blood was flowing out in all directions. My attempts to patch it were feeble and ineffectual, I was in denial of the fact I was grieving. When you grieve, you don’t just grieve for what you have just lost, you also open all the grief you have ever felt, in the past.

Every step that our health takes, even when like this one, we know it is written there in our future just waiting for us, still hurts. I thought I had learnt that lesson, that I was passed all that stupid stiff upper lip rubbish. It has its place in front of other, but to ourselves, never. I need to look inside, to myself and to live my life, not the lives of others. I have to accept again and to rebuild around what has happened. Just being able to make my way around the house without bumping into things, is learnt skill, it’s not acceptance. Enjoying being able to do things for me again is a bauble, not acceptance. Finding pleasure in just sitting quietly enjoying a meal I made and a break from sitting here at my PC, is emotion, not acceptance. There is no comparison, nothing that can even bring them into the same sentence. My legs are never going to carry me more than a few steps ever again, fact. Easy to say, even easier to type, hard, really hard to accept. But I have to and I have to do it fully, without brushing any of it under the carpet and hope that it will somehow stay there.

Please read my blog from 2 years ago today – 14/10/2013 – The truth of what life requires

Another week of who knows what? I know that logic says that if you are housebound and ill that everyday should really be like all the rest, but it never really is. I thought when I was no longer working that I would find it impossible to…..

“I” have become “We”

It was just past 3 am and I knew I was going to have to get up to go to the loo. This was going to be my first middle of the night visit since I had acquired my new transport. As I stood up to put on my dressing gown, I felt a drip running down my leg, followed by another and then another. There was no time for dressing gowns, or to even sit in my chair, as without a doubt that would be the worst thing that I could possibly do. Holding your bladder back is partially possible when standing, sit and I knew that I don’t stand the slightest chance. As fast as I could, I crossed the hall for the bathroom, aware with every step that there was also a drip being left behind me and with each drop my heart was sinking. As I reached the toilet, I had heard Adam waking up, if what was happening wasn’t bad enough, this meant without a doubt that he too would also be aware of it all. This is the second time in just a couple of weeks that I have lost control in the middle of the night. The first I put down to just plain bad luck. It wasn’t the first time ever that it had happened and I was sure that it wasn’t going to be the last, but not so soon. I can go months without even having to think about my bladder, other than the fact that I normally can’t actually empty it. In fact, I had been through that problem just earlier in the day. It doesn’t matter how long you have been ill, or how much your partner loves you and understand, there will always be things that mortify you ever single time that it happens. For me, this is one of them.

Looking back on it, what I did next seems quite odd, but it felt like the right thing to me. Once cleaned up, I went back to the bedroom and got into my wheelchair before heading back across the hallway to the kitchen. I know I could have just stayed on my feet and turned the corner between bathroom and kitchen with ease, but getting off my legs and safely back on my wheels, was top of my list of priorities. As I sat having what was a deeply needed cigarette, I heard Adam cleaning up what I couldn’t, which didn’t make me feel any better. He came into the kitchen to see that I was OK and didn’t say a single thing about what had just happened. What did I do to deserve this man?

We both know and knew this was going to be our future, but that doesn’t change those feeling. Those things that are instinctively sitting there inside us, just waiting to make us feel bad. I know that time is closing in on me, and that that time I had put down as away somewhere in the future and didn’t have to be thought about just yet is slowly arriving. That is one of those horrid things about chronic illness, there are so many of those in future points. When you are first diagnosed you read all the things that are there waiting to happen and dismiss nearly all of as somewhere off there in the distance. Then the first one arrives, it isn’t expected, or acceptable, all you want is to make it go away. At first sight, you mark it up as a one-off, or something that might happen again, but not tomorrow or the next day. It might be closer, but it can’t be here to stay, not yet. On its second appearance, well you still keep kidding yourself, trying to tell yourself that it can’t be that bad, it has to be something you can control. We hide and we hide again, but no matter how much hiding we do, it’s still there and it’s just keeps getting worse. Slowly it chips through one layer at a time, sometimes moving further into our lives, on others we find new and hopefully stronger layers, ones that this time, it surely can’t breakthrough.

It doesn’t matter what the symptoms are, what it does to us and how much of our lives they manage to take over, we still colour all of it with stories that permit us to keep going. It’s part of what others call our strength, it isn’t our strength at all, it’s plain simple lies. If you don’t fully admit the truth, then you can cope with anything. The people each year who receive those glitzy prizes for acting, shouldn’t go to actresses and actors at all, they should be given to us, the chronically ill of the world. I have learnt to put on prize performances without even being aware that I am. It becomes so much part of you, that not doing it, would be probably far harder. Yesterday, I poured out truth after truth. Admitting all the thing that I had hidden from myself because hiding was easier and allowed me to live day to day with the illusion of normality. It wasn’t until I sat and thought about it, that I realised that the only person I had been kidding was myself. Adam was clearly aware of it all, he knew how much he was doing for me each day. He didn’t need to sit down and make a list, as he is living that list. It was only me who was living some kind of fantasy life. Looking back, I have done this over and over again. With each new symptom, I have played this odd game of denial. I say odd because clearly I’m not an idiot, I knew what I was facing, but by denying it was happening right there and right then, meant I could put off dealing with it, just that little bit longer. I always had to clearly deal with the physical aspects, but that didn’t mean I had to deal with the psychological aspect it brought with it.

I guess we all have our wake up days. Whether or not you write a blog or are just in the middle of trying once again, to get past that point in your day that is getting harder and harder to deal with, that wake up call will arrive. They are like blinding lights that steal more and more of our lives each time they appear. Suddenly, you discover that that point that was once in the distance, has actually been crossed and not just by seconds, often by weeks. Bang, you have reached a new level of disabled and that always hurts. It is over 14 years since I made that list of milestones. What I have woken up to in the last couple of days isn’t just how many more I have passed, but how close together so many of them were and how so many of those still ahead of me are. I though milestones had years between them, I was wrong. They once were, but now they seem to be in clumps. Losing your ability to do one task, actually when you look more closely, usually means you lose the ability to do a huge range of things.

A doctor might ask me, “Can you dress yourself?”, but although I would answer “Yes”, what I am doing is hiding. “Yes,” I can dress myself as my clothes have no buttons, no zips, no laces, or hooks and eyes or fastening of any sort. If all of it is loose, made of soft stretchy fabrics and can be pulled over the required part of my body that needs covering. In essences, I told no lies, I just didn’t answer the question that was really being asked. If you think of all the actions that I can’t manage within that one milestone, well you see not just a couple of difficult actions, but a huge range of everyday tasks that I can’t actually do any longer because of one thing, dexterity. Within all that, you find also a clump of skills milestones, all stuck together and hidden by my answer. I know exactly what the doctor would be really asking, but he doesn’t know that I spend my life in pyjamas and dressing gowns. Fashion these days makes it hard for people to know what you are wearing, my clothing has been the same for 6 years, at home or at the hospital and I always get away with it. By answering that one question with a “Yes”, I am also lying to myself, as I can push that milestone away again by simply ignoring the detail. Take that game and spread it out over my entire life and I can appear to myself and others as not that badly affected, when the truth is the opposite.

Once more I find myself looking at my life and wishing someone had sat me down and explained what the truth of a diagnosis with a chronic condition really meant. If someone had just explained that the milestones of any condition actually affects so much more than that tiny bullet point in a list made up by clinicians. Clinical milestones are as pointless in the real world as an ice axe in the Sahara. Illness isn’t just clinical, it’s real lives in a real world, it people who have lives to live and how they manage that can’t be measured by medical milestones. Once the majority of our life is in the hands of others, even if that is to simply set things up so we can manage our day, we can’t even be measured by the ones we create, as there is no longer a measure that matters. Does it matter medically or in any other way that Adam now sets up small bottles of Ginger Beer and Coke so that I can have a constant supply to drink while he is at work? It matters to Adam and I, and yes it does say something about my degree of disability. But what it really says is that I am cared for, that although I can’t cope, we can. I had missed that. That is the big change, not my wheelchair, or my wetting myself, or any of the other things. What matters is that “I” have become “we” and right now at this level, “we” are comfortable with it and need no other help.

Please read my blog from 2 years ago today – 18/09/2013 – Shhh!

The final required signal that winter is on its way, I am now eating porridge in the morning! Somehow getting up to find the house cold there is once again a need to eat something hot and tasty, I’ve never been sure why we all go looking for…..

Faced with reality

I found myself in tears yesterday afternoon, not because of the nebulizer, but because of the chemist. We had for the last few months handed over the job of ordering, picking up the prescription and delivering to our house of my repeat meds, to our local chemist. It had been working fine until this week when on Sunday, Adam who dishes out all the meds for me, announced that I had no more 60mg MST, which is my main painkiller otherwise called Morphine. There was just enough for him to put out my dose for Monday morning, but that was it. Clearly there was something wrong, but with it being Sunday, there was nothing we could do then. The plan was for him to phone the chemist before the ambulance arrived to take me for my appointment, or while we were waiting at the hospital, just to be sure they were delivering on Monday afternoon. When he did, it turned out they hadn’t even ordered them. Something had gone wrong and the note to order on their system just wasn’t there. He quickly phoned the doctor surgery and ordered it, then phoned the chemist to say they were there to pick up. I knew we would still have a problem as the chemist only picks up prescriptions in the morning and my Dr system. meant it wouldn’t be ready until the afternoon. There was one saving grace, I had a small stock of 10mg MST and there was enough to cover two doses. As is often the case it was Adam who reacted immediately by tying himself up in stress, I just stepped through it, accepting what had happened and tried to calm him down. He was rushing back and forward checking to see if the ambulance was there and muttering down the phone at different people trying to get everything sorted so that I didn’t have to swallow 6 x 10 mg tablets, which he wouldn’t accept wasn’t a problem.

Yesterday morning the phone rang and I was surprised to see that it was my GP, he was calling as he had received the letter about the new meds the consultant had ordered and just wanted to be sure that they had supplied the nebulizer. My brain being what it is, didn’t think about they way the prescription was going to get to me, if I didn’t do anything, the doctor would post it to me and I wanted it quicker than that. So I called the surgery and arrange for them to hold it so the chemist could pick it up on Wednesday. This, of course, meant I had to phone the chemist. I double-checked with them that my meds would be with me today and at that point I got a rather snooty response. In fact, I got the impression that they thought I was being difficult, that was when the first tear appeared. There is nothing I can do about it, when my emotions are spiked, be it by anger or anything else, thanks to the munching monster, I cry. It’s one of the reasons that I don’t normally deal with anyone on the phone, I only did it this time for speed as Adam was at work. There is something very embarrassing about finding yourself blubbing to a complete stranger who doesn’t have the slightest clue about the damage your health has done to your brain. I remember saying “hold on none of this is my fault. You were supposed to have ordered my meds and you didn’t!” There was a sudden change in attitude and she said that she would look into it and call me back and tried very quickly to cut the call and hang up.

Once those tears found their exit, they were off. I sat here for about twenty minutes, telling them to stop, blotting them off my face and trying all over again to get control of myself. My anger had to settle before that could happen, plus I think there was a large dose of yesterday lurking in there as well. Two stroppy people in 24 hours were just too much for me, I guess that I had been wrong in holding them back yesterday. The stress of the last few days had caught up with me and tears seemed be my bodies answer to it. I know all too well that sometimes the best thing you can do is cry, but I also know that to keep crying achieves nothing. I have to say, though, I did feel better in some ways. Oddly, one of the things I noticed was I didn’t feel so tired, I couldn’t work that one out for the life of me. Don’t get me wrong I didn’t suddenly feel invigorated, just that little bit brighter.

I did later in the afternoon received a call from the chemist, although there wasn’t the direct apology that I would have liked, they were both courteous and friendly and assured me that the meds would be delivered later, with a balance to follow tomorrow. I am glad though that I double-checked what they had there, as I was sure that the new meds prescription wasn’t going to be there. Earlier I had explained that the doctor had just written it five minutes before I called, yet they still tried to tell me that they might have it. They will pick it up in the morning and deliver it tomorrow along with the balance of my other meds. Part of their call was also about one of the meds that they did have the prescriptions for, oddly I had two prescriptions for two different types of calcium. I, couldn’t work it out so they sent both to me with the rest so that I could look at them and pick the correct one. When I saw them I realised that there was only one month of each and my prescriptions are for two months at a time. I, couldn’t understand it at all and of course, yesterday was Tuesday, my doctors are closed in the afternoon, so there was nothing I could even do about it. By that point, my head was buzzing and the word drugs simply made me want to scream. All the pressure about getting these things ordered and delivered was exactly what I wanted rid of, this delivery has been a total nightmare and I was totally fed-up with the whole thing.

Adam and I had already decided that this system just wasn’t working for us at all. What we are going to do going forward is that Adam will arrange the prescription then tell them that it will be ready to be picked up the next day. Hopefully, that way will get rid of all of this. It is so easy for doctors to say take this, and this, and this, and to keep on adding and adding. Once you land up like me with a list that fills three carrier bags for so many different conditions, it just becomes an ever growing nightmare. Twice a day going forward I am going to be faced with sitting down to take a collection of tablets and liquids, followed by inhalers and then the nebulizer. It isn’t just swallowing a few pills any longer, it is a process, a part of my day and now Adams, where there is no focus other than my health and somehow that focus now feels negative. Yes, I know all of this stuff is to help me, to make me feel better and that should be positive. I see that, but that doesn’t make me feel it. It just makes me feel even more taken over by the whole process of caring for these things that live within me. The simplicity of just living, of being what I would call a normal person is being stolen from me. I know that getting the wheelchair out is my idea, it the only option open to me, I have to be able to get around the flat in safety. Finding myself suddenly attached to equipment, tied to inhalers and machines to keep me going is mentally chipping away at me and I haven’t even started living that way yet, but it hours away, not weeks.

I can’t even compare it to anything I have been through in the past, as I have never felt this way. I loved my wheelchair when I was using it to keep me in the outside world. I have swallowed my body weight multiple times in tablets and I even spent three years attached to a gastric nasal tube and it’s pump. All of them were a breeze as I still felt reasonably healthy. There was a clear positive to all of them, even before any of them started and they were still in the planning stage, I felt good about them. So much has changed in the last few years, things that you don’t really notice on a day by day view, it takes being able to see things in a longer perspective. Right now I am no longer physically strong. There is this general weakness that fills me all the time, but as I have already said, it goes deeper, right into those muscles that no longer have the strength to hold me. I feel as though I am fading and that added to the new drugs regime, well, it’s affect has just thrown me off balance in every way. I guess that I am just feeling the truth that my health has finally taken over everything and somehow, I have been ignoring that fact. Well, I am awake to it now.

Being housebound and not seeing others who have the habit of spotting those things that have changed, you actually live in a bubble. I have been here 8 years and in that time, yes there have been changes that I have written about. Problems that I have faced and got through, but other than that initial diagnosis of COPD 2 years ago, nothing feels as though it has changed that much. I know I am weaker, that I am not capable of doing everyday things like reading my mail, dealing with the outside world, or even getting me own medications right, but somehow I still felt like it was my life and my body. This working towards getting things ready so that I can use my wheelchair and this stupid nebulizer has woken me up to the reality. This isn’t the body I called mine, how can it be, it isn’t capable of anything on its own any longer. It can stand, walk, process food or even breath without intervention. That isn’t my body! I was always fiercely independent, look at me now. All I can do for myself is to sleep or sit here, that isn’t me. I have woken up to the changes that I had missed, not processed or simply ignored. 8 years of change is a huge amount to catch up with and a huge adjustment to make. I know I can do it and that I will, but I need a little space to do so, a little time and a little understanding. I’m human, not a machine and I occasionally have to actually act like a human. I guess that this is one of those occasions.

Please read my blog from 2 years ago today – 09/09/2013 – Searching for life

There is never a simple answer to anything once you are either past that certain age, or you are no longer fit for purpose. I remember clearly when I was in my early teens thinking this would never happen to me, I was never going to be…….