Facing the facts

I realised after I had completed yesterday post that I hadn’t mentioned what the Doctor had to say, eventually, about my mole. I phoned on Wednesday afternoon and luckily didn’t get the somewhat moody receptionist who I have mentioned in the past. It was to her email account that I had sent the photo’s. I did actually call back on Monday afternoon to check she had received it, as I had heard nothing. The receptionist who answered the phone had to check but then confirmed that it had arrived. By luck on Wednesday when I called back, my Dr was free to talk to me. He was apologetic, as he had asked that an email was sent to me, to let me know that he thought there was nothing to worry about. Because of the fact that it had changed, he wanted the hospital Dermatologist to check it out and had requested an appointment for me. All of which he said had happened on Monday morning, so when I phoned on Monday afternoon, she could have passed that message on to me, or taken the hint that I was seeking an answer of some sort and sent out the email as she had been told to. I had half expected the doctors response and that I would once more be on my way to the hospital to see yet another consultant. So, it’s just a matter of waiting for an appointment to eventually arrive.

When Adam was home for lunch yesterday, he mentioned that he had requested to have next Tuesday off. I couldn’t for the life of me think why he wanted such an odd day off work. After all, taking the odd Monday or Friday, allows a long weekend, but a single Tuesday is just odd. As far as I could remember there wasn’t a reason why he would want to be at home that day, but with my memory, well there might just have been. He said that it was so he was here for the appointment with the MS nurse. He thought that I might like some support when he came to see me, which was really nice, but he was coming to see me next Monday, not Tuesday, well that was what I thought. It is, in fact, another good reason why Adam normally opens all my mail or at the least reads it. I had got the wrong date in my head, it’s the 22nd, not the 21st. He also thought that it might be a good idea for him to meet one of them so that there is a note on their records that he is now quite clearly my carer. Hopefully, that will make things easier going forwards as they will at least know who he is if he needs to contact them on my behalf. I know he is right, just as it’s right that he now attends all my hospital appointments with me, but somehow someone coming to the house felt different. It took me a few minutes to get it all straight in my head and I worked out why I felt the response that I did. The flat is my domain, I am so used to the idea that this is my world and that I can cope within it, that I hadn’t even thought about the fact that this was an outsider, someone who is as likely to confuse me as many medical people do.

Every time that the MS nurses arrive, they start their visit with a questionnaire that covers all the basic things. Am I still able to dress myself? Can I prepare my own meals? How am I coping with my medication? Can I still wash myself? The list goes on and on, but for the first time in years, my answers are going to be so different. I hadn’t put that much thought into the time scale over which the most recent changes in my health had happened. Thinking about it has made me realise just how stark those changes are and how quickly they have all really happened. Our last meeting was just a year ago and it is like chalk and cheese, I have at last reached the point that not including his love and emotional caring, as I said the other day, without Adam, I wouldn’t any longer be able to cope at all. I don’t think that I have ever actually written or said that before, but it’s totally true, in one year I have gone from independent to reliant and it’s a fact that can’t be ignored. I guess that I have been playing games with myself, tricking myself by skirting around the actual facts and it is all too easy to do. Saying to myself that I have lost my independence and saying that I can’t cope are two totally different things, and their psychological impact doesn’t compare at all either. That is the equal beauty of our language and a huge danger zone for those of us dealing with medical issues of any sort.

Fact, there is always a nice soft cuddly word that sounds similar to those nasty spiky ones that none of us wants to use. It is too easy to sit here and make it sound as though there is nothing really that wrong with us when the truth is the opposite. There is also a huge difference between deluding ourselves and misleading our medics, the second could actually be deadly. As long as we are hiding the truth from ourselves, how on earth are we going to get the treatment and care that we need and probably deserve. Two days ago I sat here analysing my loss of independence. I wrote a whole post about it as though what I was talking about was being unable to change a light bulb, I just didn’t want to face the truth. It has all come to ahead simply because of my wheelchair, but that is now clearly just another symptom, it wasn’t the answer I was hoping for. Somewhere in the back of my head, I had this picture of sitting down over those wheels and the world would suddenly become shiny and new again. It wasn’t, and I have to admit that even an electric chair isn’t going to have that effect either. It will make life so much easier, but it isn’t going to give me back either my independence or my health, or make it possible for me to cope with life by myself. No matter what aids or gadgets we acquire, I am never going to be able to cope with normal everyday life again, fact.

It has never been my wish that Adam should leave me, but my measure has been for so much of my life, thanks to my first husband, “Can I really manage on my own?” Being able to answer “Yes” to that question was so important to me, that it has remained with me right through the last 26 years. Until the last 6 months, I was still able to answer it with a “Yes”, well there were a couple of tiny issues, like emptying the bins, but I was sure I would find a way around them. But for the bulk of everyday life, it was “Yes”, now it’s a “No”. I have been fooling myself in the last few months, no, “lying” is actually the correct spiky word and the true one. I was lying to myself, as the truth was just too painful for me, but I don’t have a choice any longer. I have become that person who has to be cared for, as without it, very quickly I would die. How long would it be before I took the wrong drugs at the wrong time? How long before I developed an infection because I hadn’t been taking care of myself, by washing and showering without someone to make sure that I did? How many important appointments would I miss? How would I manage having to speak on the phone on my bad days? How could I cope with dealing with people, without floods of tears or confusion? How could I clean the house? Do the washing? Sort out the shopping I can’t even lift? How would I just deal with everyday life? The answer to all of those and many more is always now in the negative and my need to no longer be on legs that don’t carry me, has just made every single one of them harder. I can’t cope on my own, full stop.

So I have said it! I have admitted it! Does that mean I accept it? Not quite yet, but I am getting there. Well, I hadn’t admitted any of it until in the last few minutes, it will take longer than that. Pouring my mind out onto the screen may be my way of writing, but it has a downside. I can’t control my brain and it often exposes things here first, then gives me the task of dealing with it. Yep, I hate my brain!

Please read my blog from 2 years ago today – 18/09/2013 – Professional patient

I took my first boosting 10mg morphine tablet, the pain in my ribs was really bad and yet again finding peace to just sit and watch TV just wasn’t there, so I took one. I couldn’t believe not just how well they worked but also the fact they worked really, really quickly! I don’t believe that I have…..

The point of strength

For the last few months, I have been tucking the edge of the duvet in to prevent my feet from wandering onto the floor. It was one of those really annoying things that I was doing in my sleep. The result, though, was I woke with my body arched like a banana and my back screaming in pain. The pain was so bad, that despite being cold, I often took ages to bring my legs back under the covers. When we decided to buy the king size duvet for our double bed, the spare duvet supplied proved to be the answer. Until last Friday night, this worked perfectly, the only issue was how I have to get in and out of bed. It means a painful manoeuvring of my legs into a tucked position just so I can getting in and out, but on balance, it wins hands down. I woke in the early hours of Saturday to find myself lying on top of the bed. How I got there without hurting myself or waking up, I don’t have a clue. Getting back into bed showed me that the duvet was still perfectly tucked in. I had to have sat up in the bed, brought my legs out and lain down again. To have done all that without noticing any of it, simply amazed me. I was even more shocked when I woke in the early hours of this morning in exactly the same position. Several months ago, I joked about the fact that I might just be about to take up sleep walking. I really was joking back then, as my legs slipping off the mattress wasn’t exactly a truly thought out move, this clearly is. I have already decided that tonight when I get into bed, that I will tuck the upper half of the duvet in as I lie down. Hopefully that way I will stay where I am supposed to be, in bed.

My brain never stops to amaze me with the things that it comes up with just to make life that touch more complicated. It’s hard enough to walk around the house when I am awake. The idea that it is going to take me for a wonder in my sleep may sound funny, but I fear the results might just not be. Having said that, it has been a while now since I last took a tumble. I seem to be doing a lot of stumbling in its place. The strength in my legs just disappear, or more frequently, I find my toes stubbing off the floor. Luckily, it’s normally just my leg or my foot at one time, but they have happened together. Finding your leg suddenly not there, or not having the strength in them to stand up, doesn’t get any easier. I thought that when it started happening like so many other things in my life, that I would get used to it. Clearly I will always be surprised, as it happens out of the blue, but it’s that shock angle that I thought would settle. Every time it happens, it feels like the first time. I am always shocked that the muscles have failed and returned. The closest I have got to understanding where the shock came from is because when my left arm failed, it was dead for months. This business of not there one step back the next is somehow more unsettling. It’s like I am being stalked by an event, it’s hanging around in the background watching and waiting for the next opportunity to catch me out. There is also that added threat, that I will go for that next step so that I don’t fall, expecting it to be fine, only to find that that was its last step forever.

Progressive illness is living your entire life under a threat. None of us has the slightest clue which part of our illness will get worse next or what it will do to us when it happens. Most progressive illnesses are slow and steady, a bit by bit process. PRMS and I suspect the other forms of progressive MS often seem to act in sudden jumps. Because most of the damage done to us is caused by lesions destroying the nervous system, so we don’t always get clues. often the nerve will continue to work normally until the last second when the Myelin is totally cut in two. I frequently describe it as the lesions eating me, as that is the picture that appeared in my mind when I first read about it. I saw this evil little PacMan type creature, not cute at all, eating away at my brain. That was where they first found them when they performed an MRI, there they were, loads of them, eating my brain. Whether it is in my brain, my spine or anywhere else, right now the preparation work on removing something from is underway. The threat is in action, in fact, multiple threats are in action and I’m just waiting to discover their results. Clearly there are often clues when I start to develop a weakness, or like my chest where the muscles are being triggered to get tighter and tighter. Just like spasms the messages are being sent but are miss read due to distortion. Like sending a message down a multi-core wire that nicks in it. The message gets there, but it is crackly and odd sounding so the muscle reaction is also distorted. The threat is there all the time, what will it do today, tomorrow, next month or next year. How distorted will those messages be and how long before they stop forever?

If you were to think about it every minute of every day, you would go mad. If I were to sit here right now and just make a list of all the symptoms, the areas their in and the possible outcome of what is happening, it would be horrific. That’s just for right now, that’s not how it will be in an hour from now, it’s always changing. You can’t let yourself monitor it constantly, not even daily in detail, as that is the road to disaster. That I think is where our personal strength comes into play. We have to be strong enough not to drive ourselves mad. To stop ourselves from wallowing in the actuals, possibilities and results. You can’t stop yourself from reacting mentally when your foot drops, or you can’t breath or your bladder hasn’t held until you reached the bathroom. Reacting is normal and impossible not to do, but wallowing, that is painful and not needed. It takes strength to accept, sort it out and move on. It takes strength to grasp hold of your thoughts and direct them in a different direction and not to return. Our strength has to be mental, not physical. It is also a strength just like the physical one, that you can train, exercise and enhance. The more you use it, the stronger it gets. It doesn’t matter what our health does to us, that mental strength is what will carry all of us through and into our futures. Pain, discomfort, embarrassment, fear and despair, are all controllable.

I know that threat is always there, that my health will come up with more and more things to test me. I know that warning or not, my body will always catch me out and do things I never once imagined possible. But I believe that I am strong enough to keep putting it where it belongs, here in my daily posts and not in my daily life.

Please read my blog from 2 years ago – 23/08/2013 – The truth of pain

Once more back sat at my PC and with little surprise Adam is snoring his way thorough the 3rd of his holiday days. Just wanting a day to be normal isn’t enough, even when all the elements of……….

Learning with attitude

Last night turned into one of those where I was restless and never really reached a deep sleep that could take me through to the morning. I know exactly what was wrong with me, but there is nothing that I can do about it. I am in the 48 hour period within which, when my body decides to actually let go, I will be going to the loo. It’s is total madness. I have gone from never going and never knowing when or if I would, to having a couple of days notice, followed by about an hours notice, then a two-second emergency run to the loo. I know it’s great that my bowels are moving, but do they really have to make such a fuss about it? Bodies I always thought were meant to be the vessel that carried us around. Perfectly preprogrammed with every internal process required and we didn’t have to ever think about it. Just another lie that I was told about life, along with the one that said “when they went wrong, they could be fixed”. It would just be nice for once to find something that I wasn’t lied to about. I remember all those horrid lessons at school called Biology when we were taught us how amazing our bodies are and how perfectly they worked. It was backed up by parents who took you to the doctor with every ailment from a cough to operations to remove those defective parts, but always being reassured with that line “the doctor will make it better.” Not once do I remember anyone once warning me that as time went on, I might just fall to pieces and unlike Humpty Dumpty, they wouldn’t be able to put me back together.

As a mother, I totally believed in never telling lies to children, never using baby language and in teaching not telling. I totally believed in answering all their questions, regardless of their age, or how busy I thought I was. I was so sure that it didn’t matter what you told a child, they only remembered what they were ready to learn and capable of understanding. But by constantly teaching them and answering their questions no matter how embarrassing or hard to answer, it meant they had the building blocks to move on to bigger subjects, knowing that they had the truth. It turned out to be totally true. My daughter can’t remember at all having the facts of life explained to her when she was 6, following a question triggered by the news, about how an 8-year old had had a baby. Yet she does remember never being fobbed off or being told a pack of lies about babies being found in a cabbage patch, or any of the other stupid things kids are so often told. I know that I was educated through the 60’s and 70’s and that things have changed since them, but I honestly think that children should be taught that they too could have their lives turned upside down by their health or the health of those they love. Having a small amount of knowledge about any subject, makes adjusting and learning far easier. Even if they were lucky enough to sail through life unaffected themselves, it might help to change reactions and attitudes towards those who do have an invisible illness. The stats say that one in twenty-five of us will have a chronic illness of some sort. That makes it impossible for someone to go through life, totally unaffected, even if it is just in the workplace, we all will know someone eventually.

The hardest thing for anyone to teach another is attitude. I so wish that it was something simple, something that we can just pass on to someone by placing our hand on their shoulder, but we can’t. I have never been able to work out where it really comes from, is it something that is deep set in our personalities, or is it something that we learn from our parents and extended family. For me, I would say it is a combination, but I do believe that it is also something that we can learn and change if we are determined to. I know I had the base there set in place when I was a child by the behaviour of my family. Their attitude to things like health and work were the ones that I started out with. I was and am, so different from my blood family that I think that is where personality plays its part, but I also learned much of it too. Our attitude more than anything is the thing that will make us sink or swim in any situation, but health is probably the biggest one. If you are the sort of person who takes to bed demanding nursing when you have a cold, you will find chronic illness really tough. But if you are like me, who had to have a limb hanging off by a thread to not show up for work, and even then if the surgeon had said it could wait a few hours, I would have gone to work, then it will be easier. That though is the bit that I think we learn. If your mum sent you to school with the measles, well health is probably not going to be something you see as an excuse, but it is only the start. Attitude is something that affects every second of your life when you are chronically ill. How we react to every tiny thing in our day, changes the next second and the one after. It is incredibly easy to bring your mood down, just because one tiny thing went wrong. This is where I had to learn.

It was hard and still is at times to just let things go. To just say that that doesn’t matter, it happened, it’s over and now move on. If you can’t do it, you have to learn it and learn it fast as heading down uncontrollably, has you heading into depression with rocket powered boosters behind it. I know that some people think that I am tough on myself, but I quite honestly have to be. I have to push out all those worries and problems, get rid of them and find a new way that works. I get rid of them here and if you read all I have written, I know that you will see that. In time, you also find the positive result of it. (I still hate that word positive.) It was Adam that first spotted it, he realised what I was doing and how this blog was my way of working through what life was throwing at me. You, dear people, are my psychiatrist, my counsellor and more. My writing is my sounding board, my place to shout and scream and come out of it smiling. I write daily because daily I am pushing myself to deal with life and to correct my attitude to me and the world.

Ask anyone with chronic illness and they will tell you that being ill has changed their entire view on life. I am no different and like others I wish I could inject all the knowledge into those out there getting it so wrong. I can look back and see just how wrong I was getting it and part of that reason was my attitude. I blamed myself for everything, it was always my fault and I was the one that had to work harder to get it right for everyone else and eventually me as well, somewhere off the end of the list. I let things get to me and dwelled on them, not for a couple of days, usually months, sometimes even years. My illness opened my eyes to what life is and what the point of it is. If I am not happy, there is no point. You can’t be happy with the world on your shoulders, even your own world. My life changed, some might say too late. I might have agreed once, but no longer because I am happy right where I am, living as I do and that is all down to getting my attitude right. Not even my world sits on my shoulders any longer, I am where I should be inside it and part of it.

Learning can be a painful process, but without it, our lives would be hellish and I for one never intend to stop learning. I may not have yet learned to love pain, but I have learned how to deal with it and how to live with it. Like doesn’t come into it, but my attitude most defiantly did. I stopped hating and fighting it and started working and living with it. If something is wrong with your life, if it can be changed, change it. If it can’t be changed then look to your attitude and change that. It can be done and it’s worth it.

Please read my blog from  years ago – I’m still here

Everything has to be rushed this morning as Teressa and John will be here around 11am, they are coming for lunch today as their is some show that neither Adam or I have ever heard of, but apparently has been running in Glasgow for around 20 years, that they want to go and see. It is always the way, family arrive turn your world upside down and….. https://livinginalimitedworld.com/2014/08/06