So what if I’m nuts

Posted on July 29, 2015 by livinginalimitedword

If I didn’t know better, I would now be dialling 999 and praying that they arrived promptly. The right side of my face has just gone numb and feels as though it is hanging there, just as they show when describing a stroke. I know it’s not because it happens all the time. I used to run to the mirror and check, so convincing is the sensation that even if I was in bed, I would get up. Nerves can be very convincing when they decided to put on a show and trust me when I say, feeling as though half your face dead and falling off, is pretty horrific. It’s just one of an array of sensations that I have learned to live with, this one though is somehow the worst one. I suppose there is nothing in this world that is more our identity than our faces are, so this attack, as that is what it is, this attack, is a direct attack on me.

It can be very hard thing to accept that everything that is happening to you is actually being caused by you. Autoimmune conditions have to be the most difficult things to fully accept. Illness until you are diagnosed with an autoimmune condition is caused by some evil little bug or virus. Something that you can blame, give a face to and even a name. It’s not you, it’s this thing that is attacking you. Then suddenly this new word appears in your life, “Autoimmune”. Your body is attacking itself and it can’t be stopped. It doesn’t make any sense, how can your own body be putting itself through all this pain and be slowly destroying itself. You can’t give it a face, as it’s your face. You can’t give it a name, as it’s your name. Even logic says that you can’t hate it, as you are then hating yourself. “You have an autoimmune condition called Fibromyalgia”. That was the first time I heard either of those things applied to me. It’s one of those devastating second in life when the world stops and you sit there with everything echoing in your head. No matter how hard you try to listen to the doctor, all you really remember are those few words, the rest seems somewhat unimportant. The doctor could have diagnosed my MS at the same time, but she didn’t think that a CAT or MRI was needed. Fortunately, an ENT specialist that I saw a few months later thought it was important. It was another year later I found myself being told I had PRMS. It actually didn’t hit me as hard when the words were said, by that point I was ready for it, not the Progressive Relapsing bit, I was expecting the normal RR. It sounds stupid now, but it wasn’t until a few years later that I truly began to understand what my future held for me. It was also about that time that I fully accepted that my body could really be causing all of it.

I related all of that for a reason. Acceptance of your health isn’t a smooth straight forward thing. Being diagnosed is the easy bit, accepting and understanding can take years. I think we go into self-preservation mode. Somehow if we accept it, all of the horrid things that we have read will actually be real. It is something that isn’t just some horrid mistake and one that is going to be spotted during one of their annual catch up. Acceptance is slow, incredibly painful and totally essential. It happens in phases, the first phase is actually a false one, it’s not acceptance at all. I spent a few days at home feeling sorry for myself, just sitting there crying and crying until I couldn’t any more. I thought that I understood what was happening, that I was accepting, but I wasn’t, I was mourning. I was mourning a list of things, including the end of my fight to find out what was wrong. That phase of my life was over and gone, the fact that had gone from just one devastatingly crippling condition that was going to steal my body and my mind, to two and this one was going to take over my life. I thought the last tear was acceptance, but it wasn’t, it was coming to terms with it, realising I had to get on with life and putting the tears behind me. Over the next months, there were more tears, more grieving for what I had lost although none of us really know that, as we can’t know what life would have been, but we mourn it.

Acceptance is an incredibly slow process. It comes when your not looking for it. It grows through all the things that you discover haven’t been stolen from you overnight. It’s in all the new things you still learn and achieve despite this autoimmune monster. It isn’t a flash of lightning, it’s a gentle growing feeling and as it grows as you learn that life goes on, you adjust to your new title. I know the outside world thought I had accepted it long before I had, but that was because I was being me. Bravado was always part of my life. I always went into things full heartedly on the surface, but shaking and terrified inside. My appearance in this situation was no different. I was upfront, happy to tell anyone anything they wanted to know. I hid nothing from anyone and smiled as I spoke, even on days when I was dying inside. I can’t tell you the exact day that the two actually were the same thing. I don’t remember when I truthfully felt what I was saying, that the ‘I can do this with my eyes shut’, met head to head, with ‘I am happy, this is my life and I’m living it’. But they did.

I know many believe wrongly, that acceptance has to happen quickly and it’s the only way to get on with your life. There is no right or wrong time that acceptance will appear, but it does appear and it can’t be forced. Once you do accept, once you truly say this is what life has laid out for me and I am content to live with it, life changes. You can’t fight chronic illness. You can’t defeat it by being positive. Neither work as both are just showcases for the outside world, not healing on the inside. No one is given a diagnosis of something that is going to destroy them one day and next be smiling about it unless they have a screw loose. For me I know it was sometime around the point that I was given chemo to knock out my immune system so my body could heal, that I truly found my acceptance. That was about 4 years after my diagnosis. I found an odd positivity about what was happening to me, I might be dying slowly, but I wasn’t dying yet, I had too much still to do. If I had to do it full of radioactive chemicals and from a wheelchair, so what. It was like those chemicals were my wake up call. They don’t give you stuff like that unless you really need it and if they were going to give me a chance at living longer, I wasn’t going to let them down. My acceptance was complete.

I believe totally that we all find that point, somewhere along the path of illness is that wake-up marker and it doesn’t just happen once. They are there all the way through, there to remind us that life is still ours and we are still have living to do. It doesn’t matter how black and bleak your prognosis, once you have that acceptance, well nothing can hold you down for long. I am doing this to myself, not willingly, but because I was unlucky to have a screwed up autoimmune system. Not fair, but a fact. Even now when I know I am slipping once more, I can accept it. Right now, it’s not with an fully open heart, but with one open enough, because I have the knowledge that I will find it anew as I always have in the last few years. Once found, you never truly loose it, it just hides every now and then. Until it happens, you can’t see it, you can’t believe that it will ever happen to you. I felt the same, I thought people who were positive about their lives when they so clearly were a mess, well they were nuts. I am now and have been for several years, happy to be officially nuts.

Please read my blog from 2 years ago – 29/07/2013 – The start of a thought…..

Yesterday brought me on blessing that I had hoped would be worth the money I spent on it but like many things I had to wait and see when they were eventually arrived, confused? My new glasses arrived, the ones especially for sitting here typing! I had been a little….

Searching for happiness

Posted on July 25, 2015 by livinginalimitedword

The last few days have been just a little odd. I have been somewhat lost when it comes to holding onto reality, but I have quite clearly been brighter and more alive than I have been for a while. The two things don’t really belong together, but that’s chronic illness for you, illogical and odd beyond anything you ever imagined before you are actually living with it. Adam noticed the change a couple of days ago if I’m honest, I felt it starting a couple of days before, but it took time to build until it was obvious. I don’t get many of these bright and almost bouncy spells. They are a glimpse of the person I used to be. The person who in their thirties still did things like leapfrog over the bollards on Sauchiehall street in the middle of the shoppers on a Saturday afternoon. She was a person that I really liked, not lacking in energy, either physical or mental, not afraid to do silly things and living just to be happy. I know I was lucky, I know that not many people have that chance of a second life, but I did and I didn’t waste it. Sometimes I think that it was life telling me to make the most of it as it was all going to vanish all too soon. At the time I thought it was life making things right for the mess that my first life was. Either way, from 28 to 40 where the best years of my life and I lived them, every second of them.

I often find myself sitting here with a silly smile on my face as some odd memory that has jumped into my head from nowhere. I smile because I can remember the happiness of those days, the almost endless fun and surprised that were hidden in most days, spontaneity was my life and I loved it. That doesn’t mean I’m not happy now, it just means I’m lucky to have a brain that gives me gifts from my past even though that gift, will mean I don’t remember what I was doing before it appeared. Memory can be both a joy and a total pain in the neck at exactly the same time. I don’t have the energy these days to walk a tenth of the length of Sauchiehall Street, far less leapfrog over one bollard, but I am just as happy today as I was then. How I feel and how I appear don’t always match and that is mainly down to energy. It is almost impossible to be cracking jokes, be sarcastic or even show spontaneity when all you want to do is sleep, or your mind is so fogged that you can’t see the next word. Appearances can be totally false.

I know that I am not alone in being quite content with their lives despite what has happened to it. Despite large doses of self-analysis, I have failed over and over to work out what it is about me that lets me be happy with my life as it is. There is nothing that I would like more than to be able to write some kind of self-help manual that could transform others lives so they to could be housebound or even just chronically ill and happy. The reality I have had to accept is that it has far more to do with personality and upbringing than anything else. I am an accepting person. I was brought up to do, not question what I was given. I learned quickly to accept where I am or what was happening and just get on with it. The only time that I went against that was when I broke free of my first marriage. There were moments of happiness, but so few that it just wasn’t not enough. I had accepted far more than I could take from that situation. But beyond what I was taught, is me, my personality. Where I am now, actually feels like a version of spontaneity, just as quickly as I would go off on a tangent because it seemed like fun, I can also see things as a tangent on life, so why shouldn’t that be fun too. I am here, a fact written in stone that no one can change. If it can’t be changed, then accept it and make the most of it. It may sound simplistic, but often the simplest things are the things that work.

Those who have been reading for a while will know that I didn’t accept without a period of fighting against it. That was another of my personality traits, pig-headedness. It is also a trait that can work for me as well. Without it, I would have given up long ago, what is the point in fighting something that you can’t beat. The point is, you just might this time. A run of small wins is enough to lift anyone’s spirits. In this past week, I lost and won back a hand, I started to actually go to the loo and I have defeated the monster of a new website that seemed to have it’s instructions buried in an MS Fog. Small wins, enough to lift me and enough to add that spark of brightness to my inside and outside self. Happiness can come from the strangest places, but it’s still there. Life didn’t end when my front door closed behind me for that last time, it just changed. I can still laugh at myself, even on my worst days there are points that are funny and fun may not come in wild antics now, but it’s still there, just smaller and more controlled. I am still here, unfortunately not smaller, more sort of rounder, not just in shape but in more rounded as a person. There is still so much ahead of me to learn and explore. My physical world is limited to just two rooms plus utilities but it bigger in the range of things I need to know and will need in the future.

I believe that you, me and everyone can be happy. It’s a matter of taking your life, your world as it is and accepting, then if it needs to change, well change it. If you can’t find any happiness in where you are, why should you find it somewhere else? Without accepting what is yours, what is unchangeable, you can’t move anywhere or make anything better. It takes time, lots of time, but well we have loads of it, but if you are determined to keep living, determined to be happy, you will be. But nothing will change if your heart isn’t in it and if you don’t really try.

Please read my blog from 2 years ago – 25/07/2013 – Is there a way out

Sometimes I find myself with so many words inside me that I can’t see past them, through them or even around them, my head spins as I try to find out just what it is these dammed words are actually trying to tell me, or is it trying to tell you. After all it is the reader that words are really for, rather than…..

Everything is changing

Posted on July 3, 2015 by livinginalimitedword

Somehow it is Friday again, I don’t know why but until this second it had felt like a long week. That is honestly not something that happens that often, even with every day being the same as the one before. It actually amazes me just how quickly my days go in and how suddenly it is time for Adam to be home again. I am not complaining, not at all as I know that is part of the reason that I find being housebound that bit easier. I guess the theory that I set out three years ago was true, as long as you keep yourself busy and you have one person in your life that loves you as much as you do them, you can survive anything.

It used to be my greatest fear that Adam would just decided one day that he couldn’t take anymore of my health and that he would leave me. I kidded myself that I would manage, that I would somehow find the help that I needed around the house and that life would go on. I knew that I was kidding myself, but even knowing that I still did it. Despite being generally good at putting myself in the shoes of others, putting myself as housebound and alone is something I find incredibly hard. I have someone in my life who isn’t just my partner but is actually part of me, his not being here isn’t just unimaginable, it feels totally impossible as well. I think the other week when I was really ill was a huge wake-up call to both of us. I got the impression that it was the first time that Adam actually thought that he might lose me. I knew that because he clearly wasn’t going to be convinced on the first two days that things were really bad to go to work. He wouldn’t just not go to work, but he couldn’t help himself but to keep checking on me. I had it reinforced that although I might still want to be independent, I really wasn’t well enough anymore to be so. Up until then my health had been this slow decline, something that yes affected both our lives, but didn’t mean I needed a nurse. Adam had had to take on almost everything that I once did, other than those personal things, but we were still clearly two separate lives that needed each other to be complete.

It was our first taste of what we both silently know is ahead of us in a much bigger and far more stark future than we were at that point ready for. I don’t think either of us had thought about something suddenly wiping me out like that, we had had no reason to. I know personally that I was looking into the future as being this long gentle decline, with crisis situations somewhere out there near the end. I hadn’t at all allowed for sudden and server bouts of being so ill that just walking was a challenge. I never once thought that outside of a normal illness that anyone might have, that I could suddenly be confined to bed without even the energy to want to move. Just knowing that out of the blue that today or tomorrow I could be right back there again, without any control over it in any way, wasn’t something I had ever allowed for in my planned out future. But that is always the problem when you try to plan illness, it will do something to show you your plans are worth nothing. Although we haven’t sat and talked about it in detail, I think it shocked Adam even more than it did me. There has been some small throw away statements that he has made that show that he thought that I might not get better. Not that I was going to die in days, but that I might never be well enough for him to leave the house without fretting about me, even if he was just going to buy a pint of milk.

Personally, I know I didn’t think about much of any importance at all during that week I spent in bed. It would be fair to say that I didn’t actually think at all until the last couple of days as to the true impact of what had just happened. I realise now that it was a real game changer, even if it doesn’t happen again for a year, it has changed everything. It has shown me that my body is frailer than I thought it was. As I said yesterday if you had asked me I wouldn’t have said that my health hadn’t changed that much in the last three years when it very clearly has. I hadn’t held onto the knowledge of the past me, somewhere along the line my mind had airbrushed it and I had just carried on accepting that view. In the last few days, I have spent some time just thinking about the truth, about how weak my body is, how little I can actually do without resting. How much sleep I need to just to have the energy to do nothing. How easily I get breathless and how drained that makes me feel. I have thought about the different area’s of pain and what is behind them and how they alone have changed my life. I have put together in my mind a much more real version of me and, to be honest, I don’t like it, but I needed to see it.

Just because I can now see the truth, doesn’t mean that I am going to give into it. You can know something and at the same time not accept that that has to be the way it is. The difference is I now have a much more realistic view of my life and where it is going and at what pace. I am now more prepared inside myself for something like that happen again and how to handle it. Like everything the first time, something happens it is a shock and you just go with it. I now know what its time scale should be, how I will feel and what it will do to me and most importantly, I and Adam now know that I will get better. I think the biggest change is that I now accept that I can’t push myself day after day to do what I think I should. I have to accept that I can’t keep up the pace every day, every day has to be individual rather than a carbon copy of the one the day before. I have reached a point where a routine is still important, but that routine has to have a flexibility that it never had before. I have to stop worrying about letting people down just because I wasn’t up to doing something on twitter, those that follow me, well they will understand and accept that my output is now governed by reality, not the fantasy that I kept striving to maintain. My body and my brain are a shadow of my past and I have to live within their capability not my imagination.

A week in oblivion has changed everything, everything about me and my future will never be the same. Maybe I needed that wake-up call, the kick to stop and take a long hard look at my life and everything in it and around it. I am fading, I know that it’s not the way I wanted my life to end but few of us have a choice in that matter. Fading or not, I still have the most important choice and it can’t take it away, I still choose to live and to be happy, whatever it does and whenever it does it.

Read my blog from 2 years ago today – 3/07/13 – The family together

Yesterday was a day were in many ways I don’t really know where to start and for more reasons than one. I suppose the first thing I need to say is that it wasn’t just Teressa and Jon who where here but also my son Christopher, even those who have read for a long time won’t have heard me mention him, our story together is a huge complex and very painful one which…..

It’s my life

Posted on April 7, 2015 by livinginalimitedword

I guess it time to try and get life back to normal, with the Easter weekend now over and Adam back at work, as well as Teressa and John back in London, normality is all that is left. There are always mixed feelings when life has been busy, to it returning to solitary and quiet, as much as I hate that I am alone, my health always improves with simple, peaceful routine. I know for some that the isolation of becoming housebound is hard to accept, I have heard from many who clearly have become depressed by the whole thing, but somehow I have adjusted to it, maybe because I was willing to and yes my slow slope downwards into being unable to spend long periods of time out of my home, before I couldn’t leave at all. I am still convinced that it is mainly down to the fact that I have always been accepting of what I have, rather than wanting what I can’t have. I know some see my attitude as being hard on myself, but I don’t see it that way at all because it isn’t anything like that.

If when you become ill you just sit back and say this is my life and I don’t like it, you are set for what is going to be a more than difficult process to get through. Yes you have to accept what has happened and what is going to happen, but that isn’t the same as giving up, nor is it fighting it, it is quite simply living the best way you can, with what you can’t change. I am not willing to be a victim, nor am I stupid enough to be a martyr, I am quite simply living the way that makes me the happiest and allows me to do the things I feel are important. None of us want to live in pain, physical or mental, but when every move you make, even when sitting down causes you pain, there is no point just sitting there. When pain is in everything you do, even lying down in bed, then you gain nothing by lying there, so why not get up and get on with what little you can do. I also believe totally in what I said yesterday, use it or lose it, wasted muscles slowly die, if you don’t keep them working as much as you can, well the result ill or healthy will be the same, a muscle the doesn’t work at all, so use it as long as you can until you can’t. There were two things that happened to me following my diagnosis that totally set me on the course that I am on now, the first was in the first few days. I like everyone else, even those like me who knew inside for a very long time that something was very long, still when we hear the words go into a state of shock. I remember being at the hospital with Adam to get the diagnosis, how we got home was a blur, as where the next few hours, I sat on the settee crying and talking rubbish, I know that much. Inside I was a bundle of knots, that I had no idea how to undo, but I knew I had a simple choice, the same choice I had to face when my son died. Get up and go on with life, or sit there until I died too. I could have sat there falling to bits and become a vegetable overnight and for the rest of my life. Getting on with life wasn’t in any way ignoring what was happening, it was simply pushing forwards in life as we all do when healthy, I could see no reason why that should change until I was incapable of doing so, I still don’t see myself as incapable of doing so, so I still go on.

The second was when the doctors gave me a second chance, when they gave me the chemotherapy drug Mitoxantrone, a drug they no longer use at all as they have found that there is a small chance of developing acute leukaemia whilst using the drug, meaning no one gets it any longer. Even with that risk, I would still have taken it as at the speed my PRMS was moving then, well I would have been that dreaded vegetable a long time ago and by now probably dead. During the three years of treatment, my health changed dramatically, I went from someone who was on the verge of losing their job, to someone who continued to work for another 8 years and still has a brain that although annoying and refuses to work so that others hear and see it, is sharper now on the inside, then it was before the treatment. That second chance meant the world to me and still does, I refuse to let all the good done or the life I was given to vanish, just because I am not pushing myself to hold onto every single muscle, memory, or ability for as long as I can.

I know that I quite often seem to expect too much of myself, but if I actually manage it, was I asking too much or was I asking what I was actually capable of and just had to prove it to myself again and often again. If I didn’t scold myself for getting things wrong, or being unable to do something without problems in achieving it, then just like any person who gets away with things, I would keep not performing to my standards and would eventually just lower them sooner than I truly needed to. I adjust my expectations constantly, in years gone by I only every adjusted them upwards, right through to my diagnosis I pushed above everything I had I ever managed in the past the goals always getting tougher and tougher. Now, now I am honest enough to admit that I can’t push the goals higher, but I only lower them when I have exhausted ever single possibility, then I edge then down, but those downward motions are tiny and often enough to allow me to continue until the next adjustment is needed.

In the past year, I have gone from being able to run my own life, to having to ask Adam for his help. He had long ago taken on the physical aspect of running our home, I can’t cook or clean, or even keep things tidy any longer, physically my body has reduced to just minimal activity, but when your brain defies you, it’s hard to ask for the help we need. Not only does he tell me when to shower, when to take my tablets, but now he opens all my mail as well, as I can’t even manage to read a letter without getting distressed by it, simply because I can’t make the sense of it I expect. Slowly I am handing over not just my physical world but also the mental one and those actions are a million times harder to hand over, than any physical act. Am I being hard on myself, or am I just coping the only way I know how and in my humble opinion, coping far better than I ever expected to when it comes to returning to childhood, as that is how it feels when you can’t even open a letter.

All of us find our own way through how to live when our bodies have been taken over by a symbiotic relationship that we don’t welcome. I would no more tell someone directly how to live with their condition than I expect anyone else out there, including my doctors to tell me how to live with mine, because I am not them and I don’t know exactly how they think or what they feel. There is unfortunately nothing more personal than illness, even when you live it out publically as I have chosen to do. I write because I know without doubt that what I say might just help some of those who read, I don’t expect anyone to follow my every word and live their lives as I do, I just hope that some might find something that helps. We all make choices based on our experiences, our knowledge and when it come to our health, what our bodies are telling us, all we can do is try and make the right choices for us. So am I hard on myself, well by my standards, I am incredibly soft on myself, years ago I wouldn’t have allowed myself to get away with any of the things that I do these days. Years ago I would have forced myself to clean and cook, even if I had landed up doing so on my knees because I couldn’t stand any longer, I know this because I have often been cleaning and cooking with tears rolling down my face due to total exhaustion, but not stopping because the work had to be done. These days my body won’t let me do anything so stupid, these days I listen to it because I don’t have a choice, the only choice I do have is whether I give up totally or not.

Read my blog from 2 years ago today – 7/04/13 – Switching through needs > http://bit.ly/10JVdQt

I had to reread yesterday post following the two comment I had from Cathryn and Bordrich as I was surprised by their words. I am really struggling at the moment, but I have no intentions of going anywhere! Everything at the minute is tough, be it walking or writing or even lying down, as I said yesterday I am either in an unfulfilling coma or wishing I could go there. What the last few days has shown me is…….

Who me?

Posted on February 13, 2015 by livinginalimitedword

I was asked a question yesterday, one that sort of surprised me as it isn’t something I have ever greatly thought about. It was quite simple, I was asked do I ever ask “Why me?”, I know that other people ask those type of questions, but I have never felt that way about anything. There have been so many things that have happened to me in my life when I could have asked “Why me?” but I haven’t. I remember other people saying things like “You didn’t deserve that”, when my son died aged just 12 days, I also remember feeling truly confused that they should even think that way. Nothing had happened to me, it was my baby who died, not me, I was still here and still continuing, it was him that didn’t survive, it was him their thoughts should have been with, not me. I know that people do ask “Why me?” when they become ill, but I find it a question that has no purpose, illness happens, it is the fickle finger of fate that points at you and that is it, it has nothing to do with what you have or haven’t done. No one deserves anything bad to happen to them, regardless what others might think, to me asking that is a bit like saying “I didn’t deserve this, so why doesn’t that person over there have it instead?”, I couldn’t wish my life on anyone and I do mean anyone. It’s not that it’s a bad life, it’s not, but it’s not the life I wanted, so I doubt anyone else would want it either.

The thing about “Why me?” question is, few seems to ask it about the good things in life, I know without a doubt I have asked and did ask “Why me?” when a gorgeous young man, who I was old enough, just, to be his mother wanted to be with me? I have asked “Why me?” many time, when unbelievably good things have happened to me, so I guess that it comes from how we see our lives up to that point in time. Despite my having tried my hardest, not to be a victim, when your childhood is as screwed up as mine was it can be hard not to at times, to expect the future to be the same. I know for a fact that it wasn’t until I left my first husband that I actually thought that there was a possibility of a bright future and that it was down to me from then on, it was my choices that would determine it. I’m not saying I got it all right from then on, I made mistakes, I’m human. My health had been up and down for so long that I had learned to accept it as part of my life and although my diagnosis did knock me sideways, after a few days of feeling sorry for myself, I picked myself up and got on with it. I totally believe that acceptance of your condition is vital, without it you can’t move on and you have simply given up your life to it without it even having to try. The only answer I can come up with to “Why me?” is, “Why not me?”.

Despite having been taking the medication, the doctor prescribed and altering it as he suggested in the past 9 days, I have managed to only pass one large lump and a small amount of wind. Nothing has really changed in the slightest other than I managed to have one full nights sleep. The first night I dropped the senna from four to just two tablets, the pain in my lower stomach dropped away, it was so good to sleep straight through. Last night I wasn’t so lucky, but I couldn’t blame that on any tablets, just plain ordinary pain caused by my diaphragm, pain that is still going on. I don’t know what has aggravated it, but it has been much tighter than usual for the last couple of days, being totally honest, well it never seems to fully let go any longer. It has been that way for a few months, there have been days along the way where I would get extra spasm over and above, when the pain reached the point it is right now, the only difference is, it’s stopped letting go. I don’t think that the chair we have on loan whilst the settee is being done is helping, it has to be one of the most uncomfortable chairs I have ever had the miss fortune of sitting on, but at least I am not on the floor. Sitting here just now thinking about it, it does seem as though there has been a small step up in activity of everything. Last night Adam and I actually spent about half an hour trying to work out what on earth has changed that means I am spending so much time scratching. It is now over two months since I first noticed it, that I had to be scratching myself when I am asleep, I keep finding these lines of tiny scabs where I have dragged the sharp corner of one of my nails through my skin. It was just over a week ago though that I realised that I was suddenly scratching my head a lot, well with it being somewhere you don’t really touch without noticing and with my nails being a little too sharp, I can feel it as well. We have been through every possibility we could think of from washing powder, creams, meds, food and even the totally unlikely one of fleas or mites, but can come up with nothing. I do know though that I have trouble with nerves that twitch and cause some areas to become itchy, the worst being the tip of my nose, it often drives me totally nuts. So that is where we are at on this problem, left once again with no other answer than it has to be once more my PRMS, so it looks as though I am going to have to live with itchy eyelashes, ears, palms of hands, back and toes as no cream or potion has worked, probably more proof it’s inside rather than out.

I keep making the same mistake in thinking that there can’t possibly be another single part of me that could possibly join in this game of drive Pam mad. Why I think this should ever happen, I don’t have the slightest idea because if you think about it, there isn’t one single tiny piece of us that doesn’t have nerves within it, so why do I keep insisting this has to be it, nothing else can possibly be affected. I honestly thought that when the doctor told me that my Vagal nerve was now involved in the conspiracy, that that had to be the worst of it over, as the Vagal nerve controls almost anything of importance. At the time I didn’t realise that PRMS wasn’t just after the important, it would be after anything that it could possibly find to play with and as life has proved, it is often the non-dramatic that are the things that annoy and disrupt our lives the most.

Please read my blog from 2 years ago today – 13/02/13 – Impact point after impact point

My concept of time is clearly no longer anything like it was in the past. I know they say as you get older time moves faster but when you have 6 hours a day less of it, well clearly that is going to have an impact. Adams coming and goings and the TV schedules are the only things that really stamps time on to any day. I was thinking earlier that if…….