On the move

I found myself sitting on the toilet, watching my left hand intently. I have had odd spells of tremors for years now, but this, this was somehow different. It wasn’t my entire hand that was moving, it was just my fingers, almost as though they were playing an invisible piano, apart from my middle finger, it alone was moving side to side frantically searching. My tremors have returned, visible to the world, not hidden and slight, but in a fashion where the slightest glance can see. My hand was the last part of me to think that it was funny. For the past week, my spine and legs have been dancing around like a stringed puppet in the hands of a child. I was sat there, staring at the last thing that I believed that I still had total control over, proving once again that I was wrong.

When my health took its major dip, the one that led to my being give chemo, to kill off my immune system, in the hope that when it kicked back in, it might not be quite so aggressive towards my body, tremors were the most visible symptom I had. I shook like a jelly on a plate. Like now, and as it has been for 13 years, I have little control over my core. Somewhere in my spine, around about my waistline, there is a nerve that enjoys jumping. The result is that I sort of shudder and quiver. Back then it was constant and there was nothing I could do about it. Now, well, it comes and goes, right now, clearly it’s here. I have learnt tricks, like sitting in the corner of the settee, with my back pushed back into the cushions, so that the tremor is limited. If it is my hands that I want still, well I can either, which looks kind of silly, spread them tightly into a star, or, turn all my fingers in, so that my nails rest on my thumbs, somewhat like a lose clench. Of course, the one place where I can stop nearly all of them is lying flat on my back in bed. It’s easy then to pin everything in a way that makes any movement both difficult, and unlikely. To date, the one thing I can’t hide is when my legs start to jump. Even in bed, that one is visible and according to Adam, keeps him awake. Tremors may not hurt, but when your body is in constant motion, and you’re a poor traveller like me, the side-effect of seasickness is always around.

Why I am suddenly in constant motion, I have no idea. Stupidly yesterday even Adam asked, “Do you know what triggered it?” If I did, don’t you think that I would avoid it? What I do like, is when it is at its most violent, Adam has decided that it is up to him, to provide stability. I like it, because, he wraps his arms around me and doesn’t let go. He is clearly scared that I am going to fall, or that I will career into things. At times, he offers to hold me, even when I am sat down. From the look on his face, I can tell that it appears as though I am in pain from it, but I’m not. The closest to pain that my tremors cause really doesn’t come from them, but from my stomach or a spasm somewhere, combined with badly placed tremors, well, comfort is far away. It goes without saying, that I drop more things, send more cigarettes flying through the air, and gather bruises, as my limbs slam into furniture that of course, I know is there, but they have clearly forgotten.

Although I have seen tremors listed as a symptom of PRMS, in fact, all forms of MS, I haven’t really seen that many people writing about them, actually, I haven’t seen any. To the outside world, those who know little about us, it is a symptom more often associated with Parkinsons, what many don’t realise, is the two conditions hold a lot of similarities. On days like today, even I wonder, but as I already know the truth, I just quietly shake and wait in hope that tomorrow it will be gone. I remember years ago, when I was still actually taking the bus to work, so that says it has to be about 14 years ago now, that having a tremor was useful. I had grown used to the fact that my condition was invisible, suddenly people could see there was something wrong. I didn’t care what condition they thought I had, as long as someone was kind enough to offer me a seat. Back then they tried sending me to physio, in the belief that if I could strengthen my core muscles, then I would stop dancing around. Like almost everything I tried, it didn’t work. It did help to improve my stomachs flatness, but they weren’t actually too bad before they started. What I would give for a flat stomach these days, well, I’d give almost anything, but I bet, I’d still be trembling.

One of the side effects of tremors, like this, is the energy that they use. I am always more tired, which isn’t really surprising, as I am never still. What I’m not so sure about, is why my speech always seems to dip with it as well? I know that could have something to do with the fatigue, but even early in the day, I seem to stutter more and be less able in my conversation. I would almost say, that I develop a tremor in my brain and in my vocal cords, as mad as that might sound. Whatever is behind it, the result is a stuttering, jumping, quivering mess, otherwise know as my life.

 

Please read my blog from 2 years ago today – 20/03/2014 – What is that?

I headed for bed last night not even sure if I was going to make the short journey from kitchen to bedroom. Adam was making himself something to eat and I made a point of covering up the pain I was in as I knew he would just head off into a panic, the pain was in the back of my right lung and it was agony. Over the hour before I went to bed I had as always just been watching TV sat on the settee, the pain started just as a dull ache but I built and built, by the time I went to say good night to Adam, every step I was taking caused the pain to peak from the shock-wave of my foot just hitting the floor. I knew that I had my stash of tablet on the chest of draws by my bed and that was the only thought that kept me going as I tried to take off my dressing gown and hang……

 

 

 

 

 

Talking

There was a comment on Friday’s blog, that highlighted part of a subject that I have often thought about. I say part, as it is actually also part of a much bigger picture of our lives. It doesn’t take a genius to spot that there are a lot of isolated and lonely people who have a chronic illness. Our health often locks us in our homes, stop us working and slowly all of it destroys the majority of friendships we ever had. I have in the past written a couple of blogs as to why I believe our friends stop calling and slowly vanish totally from our lives. Of course, I just searched for them, and couldn’t find them, but I know they are there, somewhere. Anyway, I am almost certain, that I only very briefly touched on the one in yesterday’s comment, “We don’t have anything to say”. As odd as it may seem, as I can sit here and write forever, I actually rarely have anything to say, to anyone these days. The more isolated you become, the less there is to talk about, outside of what’s on TV, or your past and both those subjects are extremely limited, especially with people who know you well.

“We don’t have anything to say”, is actually a very simplified way of bottling the truth. If I think back to my life 20 years ago, I know without a doubt that when I was out socially, what I talked about was mainly work, shared acquaintances, anything I had done of interest outside of that and our shared history. I had two groups of friends, those I knew through my current job, and those who I met through my past one, but it didn’t matter, our conversations usually still centered around those few subject. Well, unless something amazing had happened in the news. If for some odd reason, one of them decided to pick up the phone and call me right now, after I had updated them on my health as it is now, I would have nothing to say. Why? Well, it’s simple.

a) I no longer work.
b) I go nowhere and do nothing.
c) I have no updates to share with on other friends, as I have none.
d) I have no gossip to share.
e) I have no reliable memories

Would they call me again? Probably not, especially if you add in that the phone confuses me, and that would have caused me to stuttered my way through what little I had to say, I doubt I would have said nothing to inspire them to call again. Even after 9 years of not having spoken to them, I would still have nothing to say. Is it really that surprising, they don’t keep calling?

In the past, when I have written about losing our old friends, unlike most people, I have never held to the theory that they couldn’t stand watching us going down hill. I still don’t, but our lack of ability to interact in the way they expect, without a doubt, plays a big role in our isolation. Over time, we just become that person who pops into their conversation occasionally, and a few may wonder how we are now. We have become like so many other people we once knew, just infrequent memories. Life moved on and we, well we were left behind.

I for one can say in total honesty, that conversation even with the only friend who I am still in contact with, is hard. He, though, is a total angle as I know without a doubt, that before he calls me each week, he makes a list of things to talk about, before dialing my number. We have been friends now for over 25 years, and he is the closest thing I have to family, outside of Adams. Jake found himself in the position about 8 years ago, of having to be the sole carer for his father. Over the couple of years, he spent looking after him, he learned how to approach a conversation with someone without a dynamic life. It took me a while to spot it, but once I did, I found myself being able to tick off the points where his preparation came into use. When I go silent or start to freeze up badly, he always jumps in taking the conversation back into his control. He often has newspaper articles there by his side, so that he can read sections, or tell me the gist of the story. He tells me everything about his life, who he works with, what they do and say. He saves up silly stories to share with me. Tells me what he’s been cooking and allows me to respond, even when that means waiting for it to eventually come out of my mouth. He never gets upset if I can’t remember things we once shared, nor offended if I tell him I have to go, I can’t cope any longer. He’s a rare gem and there are few of them around. I’ve learned from him, but it’s too late. If I had done the same years ago, then maybe, just maybe, I might have kept one or two of my other friends. It doesn’t take that much work in preparing to talk. To have a few notes, prompts for stories to talk about, just being ready to be a friend, or, just tell them the truth, tell them just what it’s like to be you and how to help make a conversation work, for both of you.

For the average person, holding a virtually one-sided conversation is hard work. Adam too has learned that that is just the way it often has to be. He knows when I go silent, or appear to not be following what he is saying, that I am, I’m just not up to responding as most people would. I don’t need anyone to tell me that talking with me, is hard work, too much hard work for most people. Long before I was housebound, I had already lost most of my friends. They too found it hard work, even when they still saw me around, the fact I had nothing to say, meant they either avoided me, or spoke for a few minutes, then found an excuse to go. If there is one truth about today’s world, it is that people expect their entertainment and recreational life to be easy and to be fun. That is something that as our health progresses, we are without a doubt the total opposite of. We, are hard work, not just to talk to, but to just be around. Is it really such a surprise, that our friends are either few and far between, or just not there any longer, at all.

 

Please read my blog from 2 years ago today – 12/03/2014 – Don’t look

Often I am set off on my daily post by a comment that appeared on twitter in response to one of my tweets, but I had to totally love one, out of complete understanding that I read this morning. I had posted a picture on Facebook and put out a tweet something along the lines of “how nice it is to have the entire bed to yourself”, the response came from another who suffers with chronic pain, “especially when parts of your body choose to sleep in different directions”. I immediately saw myself lying in bed, yes on my back but with both my left arm and leg stretched across…….

 

 

 

 

Fall out

My last two posts have been like chalk and cheese. In some ways, the great relationship I have with my daughter, despite the traumas surrounding her own childhood, make my mother’s bitterness and venom, even more painful. We each have only one lifetime, no matter how long or short that is, it’s too short to live it with someone constantly twisting an emotional sword in my heart every so often. I have decided that I am going to write to my mother, but not in the way I think she expects. For once, I am simply going to point out, that despite my attempts to be in contact, until this month, nearly three years after she disappeared from her home, that she could have written or phoned me, but she didn’t. She knew where I was, I didn’t have the slightest idea where she was. I am not going to be so blunt as to tell her where to go, but I am going to make it clear, that I don’t have the strength any longer to play her games and I too, am content with those that surround me.

Life at the minute feels as though it is just one thing after another that is stretching my ability to cope with life. It started with the mix up over the grave deeds, then the letter telling me I had to apply for PIP, then my mother’s card and Teressa’s visit, and all of it has been emotionally draining, as I expected. I honestly don’t feel as there has been a day of normality for weeks. Tomorrow, Adam has booked the morning off work, so that we can go over all the PIP stuff and actually make the phone call, that will start the whole procedure. I have tried hard to sort out what this PIP thing is all about, but I fail time after time. For a couple of years, my brain simply hasn’t been able to take in details just by reading what is online, or in a letter. It feels as though it just can’t process anything, that it hasn’t known about before. I will grasp some of it, but as I continue to read, my brain just starts to explode. Within a couple of paragraphs, I start to feel as though I am reading a foreign language and every word I have read before, has somehow been translated into yet another. The more I try, the more distressing it becomes and I have to stop, as I simply can’t make sense out of any of it. Which was the reason that I passed over the responsibility to Adam for reading all my mail. Yes, I can read, but if it is above the level that maybe a school child could fully understand, I can’t make sense out of what it is telling me, and my distress at finding something that should be so easy, actually being so hard, just isn’t worth it.

I am so glad that I, at least, have today, to start to get myself in a state that might help us get through it all. The last few days have been exhausting. It doesn’t matter how much you love someone, or how much you don’t want to miss a second of being with them. It is draining. Even Adam said last night that he was shattered. It isn’t just all the preparations or the excitement and expectation of their arrival, but when your not used to being around other people, even their very presence in the house, is draining in its own way. My life is normally during the day, very much a solitary existence. Being around other people, just intensifies my own knowledge of what has happened to me. In fact, these last few weeks, have highlighted it, in ways that I haven’t felt before, just how far my health has destroyed the person I once was. I know that my memory is a mess, that I can’t find words when I always need them or remember things or their names, or even people, who once was a huge part of my life. In total honesty, I don’t think I completed more than a couple of sentences, without asking for help. That doesn’t happen so much when I’m just with Adam, but then again, we mainly stick to everyday small talk, not digging into the past. The topics that Teressa, John and I, who for those who don’t know, are all IT and SciFi geeks, for me, that was an eye-opening nightmare, where has it all gone.

Unless you too are housebound, this is probably not an experience that makes a great deal of sense, but this is my ninth year of living with just one person in my life. Yes, I speak to doctors, but never for more than 10 minutes, it’s not half as mind-blowingly difficult as really having to interact with others. Of course, I didn’t realise just how bad it had become, why would I, there has been no one to test it. It did though make sense of the feeling that I have had now for years, that avoiding people, is probably the safest life for me. Being housebound was imposed on me, and over the years, I have found that although it has huge disadvantages to life, it also has its advantages too. I couldn’t make sense of why I found strangers so distressing, now I do. I silently knew that interacting with them, would just show up the true mess that I am. It’s difficult enough when I’m with people that I know, people that to an extent, I know what they will be talking about before they say it. Strangers, well they can choose to talk about what to me, is something totally unknown. I have always sung the praises of social media, because writing allows you to think, to rewrite and to be sure my words make sense, a luxury that being face to face with people, just doesn’t allow. The volume of my praise has just risen.

I know that the stress of all the different things that are surrounding me just now, isn’t, making life any easier. I also know, that most of it is totally out of my control and that I just have to sit here and wait, that waiting isn’t making it any easier. It might be easier if it were just my mind that was making my life hard, but, my body doesn’t like any of this at all either, but that’s another story, just as tomorrow is another day. All I can do right now is wait and maybe, try and catch a few more hours sleep. No, I haven’t lost any, but right now, a few more would be very welcome.

 

Please read my blog from 2 years ago today – 17/02/2014 – Wild protection

I found myself thinking back for some reason to the first couple of years after I left my husband and all the ridicules things that I did, just because I could. For the first time since I was 16 I was earning and supporting myself, but more than that…..

 

 

 

Pain Clinic or not

Right now I expected to be having a shower and getting myself ready so that I would be ready to go to the pain clinic, yes you have guessed it, I’m not going. It isn’t my choice but not long after I finished yesterdays post the phone rang, it was the ambulance service, they had been sorting out the routes for today and realised that I wouldn’t be free from the clinic until after the service had ended for the day. Apparently it was a new member of staff who had taken the booking and hadn’t realised that it was outside their working hours, somehow I don’t believe that, if I had a penny for every time that excuse had been used by a company well as they say I would be a millionaire. Clearly I have had to call the hospital and get an appointment that is within the normal hours, this means that I now have to wait 10 weeks to the 8th of February. I was at first annoyed and disappointed that yet again I have wait, but at least they noticed and worked it out before I was left sitting in the hospital with no way home. On the upside I though I am glad in a way as I would rather be going there feeling a lot more like me than I do at the minute, it’s really hard to make myself understood by strangers when I am having problems getting my own point across to me, without trying others too.

I am so lost this week as to what date it is and what is happening when, I had booked a slot just before Christmas for the final shop, I thought it was for Tuesday next week, I have a little calendar on my desktop and I suddenly noticed that next Tuesday is Christmas day, I actually have the slot booked for Friday, all kind of silly as I could have just bought it all and had it delivered last Tuesday with everything else I bought. I just have no control over my mind at the minute, no ability to even hold onto what day, month or anything else it is, I haven’t even sent the cards to my family, I’m just so confused about all the normal things in life, the day to day ones. I am loosing my grip on them is what my mother would say, and even though they are her words, I have to agree with them as that is how it feels. I am loosing my grip on the realities of simple everyday things. I never seem to know what time it is, despite there being a clock on my desktop, and without my spreadsheet I would get totally lost, but that only keeps me in line with what I do here, and all the things I do on line are taking more and more time, not just a morning but a day, well at least the parts of it that I am awake for.

It is a strange world to live in and a strange place to be not knowing, not understanding and not being able to do today what I did last week or the one before. Concentration, that is the biggest issue, not just when I am trying to write but even in the last couple of evening when Adam has been trying to talk to me I have got lost, not heard what he said or understood it. I cover it and move on because I’m embarrassed, being a lost confused mess when you are alone is one thing but when others are here, totally different. The other day when Jake was here I kept loosing it, I kept trying to keep up with him and kept trying to say the right thing. I know that everyone knows what is wrong with me, but it doesn’t stop me wanting to be who I was, especially to those who knew me when I was me. When it is just Adam and me, well I don’t stutter so much, I joke about my lost words and shut up when I can’t keep going, all those things to others seem so wrong. So I sit there winding myself up and making a bigger mess with each word, getting more and more embarrassed and more and more muddled.

I sometime wonder if the fact that so many people in my position loose the friend they had, not just because they slowly get fed up coming, but also because we push them out as it is easier to exist in a smaller more controlled world. One that means we don’t have to worry what our bodies will do next, what amazing, ridicules and stupid thing it will embarrassed and humiliate us with. I don’t think I did, but I can’t be sure, there is a nagging doubt that says maybe, just maybe I did.

Talking shorthand

Although I won’t be attending I have received the invitation to Teressa’s wedding and it shows one of the few things that her Father and I ever had in common, the invitation is a card version of the Tardis. She may have spent the majority of her life abroad but her love of Dr. Who and all other Sci-fi is totally clear in most things she does. The date is set for the 24th of January and I realised a couple of days ago I now have a date to open the bottle of Champagne that I have had in my fridge for the last two years, I will at least be able to raise a glass to her and John on their day.

Compared to this point last week I feel so different, I knew that I would settle again but I didn’t realise just how much I had been carrying around inside myself, partially hidden even from myself. Although I knew all that spilled out I had engineered everything so that I didn’t have to face it and if Teressa hadn’t visited I would still have it all nicely confined. I actually think that my first visit to the hospital was when I scratched at the surface but that visit didn’t last that long and I shuffled myself back into hiding. I think letting it all out is why I found my return visit easier and that I managed I think to get the details across to the doctor in a more complete manor. Yesterday evening I suddenly realised that my speech patterns now are almost a shorthand version of talking, I skip words and say what is enough needed to be understood, if it isn’t then I get into a spin and try again but saying the same words as if by repeating them, they will make them understood, pointless but it’s what I am doing for some reason. The strange thing is I don’t actually remember when I went from the odd stutter and slur to talking in riddles with a mess of sound within it. I know see why Adam gets annoyed with me at times, as he is having to decipher all of it, making it less of a conversation as there is only one person doing the work, I am taking the easy way out and just not really talking. Actually I am being a bit hard on myself, as that sounds as though I am doing it by choice and choice doesn’t come into it, I don’t have any.

I seem to be swaying back and forward between feeling great, elated as there is this huge weight off of me and feeling like I could sleep for ever and there is no where on earth that I would rather be than bed. I am somewhat drained I know that, but I have a few weeks ahead of me to recharge before the next thing happening for me to get through. I don’t have a date for the Endoscopy, but I expect it will be a couple of weeks away. I have recieved the appointment from the Breast Screening Clinic, this does look as though it is going to be one huge problem. They hold the screening right in the middle of Glasgow and they make a point of saying that if you use a wheelchair or have mobility problem to let them know. I know the building they use in Nelson Mandela Place and it is not disabled friendly in any way. This is going to be what I would call interesting. One of the first entry on the to do list as I have to phone them on Monday.

Having spent 5yrs here in my flat seeing no one and not having to deal with people I feel some how under attack by the NHS, on top of the two appointments I have mentioned already, I am also waiting for an appointment for the pain clinic, a visit from the OT and to be honest, it is all really too much all at one time. I know all of it is for my own good and that I wouldn’t have even mentioned all of this to anyone as even important in anyway a few years ago, now it just feels really daunting. I suppose these feelings are all part of my slide down the slope, but like screaming “I am in here”, this makes me want to scream “leave me alone”.