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…….

 

 

 

 

The ogre in my life

I found myself once again shuffling what had to be done and not doing all of it, despite there being more than enough time. Not too surprisingly the job that never got done, was the one that I hated the most, picking up the phone and talking to people. It doesn’t seem to matter whether the reason for the call is social or essential, I will avoid it like the plague. It’s so odd this fear I have developed of the phone and it is a fear, I honestly don’t want to even touch the thing if Adam is here to deal with it. Many of my working years were spent doing just that talking on the phone. I worked in Telesales for quite a while and I am still proud of the fact that I was really good at it, but I was good because I chatted with the people I spoke to rather than reading a script to them. In fact, communication has been my main work skill that traveled from job to job with me until I started to slur and stutter. I know it isn’t that alone that make me do anything but pick up the handset. I honestly feel scared now by the muddle that I know I am capable of creating without even trying these days. The mess that I jokingly call my brain is something I don’t even think about when I am talking with Adam. I can talk about anything with him, bring in a stranger and I am demolished into a verbal muddle. Strangers don’t have the patience to just go slowly with me, they all do the same thing, they try to fill in the blanks that I get stuck in and usually get it wrong. I am suddenly faced with someone who is talking at me about something I hadn’t called about and it becomes really hard for me to hold onto what I called to say and to shut them up long enough to get my question out and hopefully answered. The phone has to be my worst nightmare these days and I will do anything that I can to avoid it, even when that call could or is to my own advantage or vital to my health and happiness.

It’s so hard for those who don’t live with a brain and/or speech problems to do what they all know is the right thing, to stay quiet and just listen to the person rather than talk for them. Human nature seems to be programmed to be either “helpful” or impatient, the actual ability to deal with the person, rather than our own time, is low on our personal scales. I used to be as guilty until I had a friend who just like I am now, would become locked into a word and unable to finish a sentence. It was my first taster of just how something that is actually a tiny issue can take over a person life and even their very personality. I learned it when I was young enough to take it on through my life, the thing I had learned that most people miss, is to listen to the person, not their words. I know that sounds odd but what I mean by it is that every person talks in a different way, different accents and with different issues. When you listen to the person, you are really listening, not skipping ahead or past them and it’s a skill you have to practice with everyone, that way you never get it wrong. Rather than you governing the pace and subject, you have to respect theirs and find the balance between you.

It is so frustrating when someone else finishes what you are saying for you, especially when they get it wrong. When you are face to face with someone you can make it clear that you need help to find the word or that you want to be left to find it yourself. I have developed some facial and hand signals that Adam now knows, so I can show him if or if not I want help. They are nothing elaborate and I am sure that even a stranger would understand them, but the phone means that you can’t be seen. It means the person on the other end, especially if they are at work and just want to get you off the phone so they can do everything else, doesn’t have the slightest idea of the issues you live with. We might as well be on different planets and speaking different languages as our ability to fully understand a person we can’t see, is zero. Human communication is actually far more about body language than the words we say, so the phone is alien to us anyway. Add in a speech impediment and a dose of brain damage and that phone becomes an ogre.

Just as I have handed over the job of opening all my mail to Adam, where and when it is possible for him to make a call for me, I will ask him to do so. The problem with this one is that it involves my doctor and my medications, they are things that I don’t know if they would accept a call from him on my behalf. We are still far from the edge of him having to do everything for me, the point when we would clearly have to inform all the relevant people that he has my authority to do these things on my behalf. Everything in life seems to have these grey areas, the points when things aren’t bad enough for the full power of attorny isn’t required, but the option for help isn’t available. The rules on all these things are so black and white but the reality is that life never is. The unfortunate things are that it takes some kind of crisis to highlight when that point has been reached and unless it is sorted out and ready to go, well you are stuck. So OK, we didn’t need a legal status change for Adam to open my mail, but it took my finding myself totally distressed by what in reality was nothing more than my brain getting it all so wrong. What crisis has to occur to prove that I need help with the next thing or the one after that? Why does life have to fall into the abyss before there is a safety net there to assist if not totally catch us?

I suspect that there are millions of people out there right now in this very situation and every single one of us is doing the same thing. Pushing it to the back of our minds and just hoping that it will all be OK for a long time to come. The danger is, that not one of us can be sure that the abyss isn’t going to open up in front of us in the next second. Chronic illness is scary, it is a monster that has more arms and more legs than any of us want to think about. To me, being independent is important, but there are days, situations and events that at that second, I don’t have the ability to deal with. The buzz of facing a challenge and achieving isn’t big enough any longer to out shadow the fear of finding myself flat on my face. Right now I am in nowhere land, not disabled enough to just hand every aspect of my life into the hands of others, but definitely in need of a strong guiding hand.

Read my blog from 2 years ago today – 30/06/13 – Stifled by perception

I now know that Teressa and John will be here on Tuesday and Thursday, I’m not clear yet at what time as she phoned yesterday afternoon when I was asleep and, of course, there was no set time. I suppose it is all rather vague right at that second as they are staying with friends and what they are doing when will also have to be part of the equation. So I am just forewarn you all that my posts may be a little-broken or…….

Meeting aliens

I went to my bed early last night, I was so tired that I just couldn’t stay up any longer, but my extra sleep was wiped out by having to get up twice. I should have know before I headed to bed, when have any of my plans to make things better actually worked in the last few years. I thought that yesterday’s laxatives just hadn’t worked, but something was telling me not to take anymore yet, just wait, they worked sort of just before midnight. I say sort of, as it was followed by the wind that had been missing for the last two days and the unmistakable feeling of my internal contents repositioning themselves, a few minutes of relief from the pressure across the top of my stomach and it was back before I could even enjoy it.

I woke this morning both tired and cold, the house seemed to be freezing and 2 hours of having the fire on in the living room, hasn’t really made a huge difference. I had told Adam the other day that as we now do have the central heating off and as the house is holding it heat, that this weekend he could open the curtains for the first time this year, I so wish I hadn’t. We really don’t seem to be able to shack winter off this year, but having built up his hopes, I just can’t let him down as I know how much he hates the fact that I close the house down for winter, however long it lasts. I know it is something that a lot of people don’t understand, but there is a fact, double glazing or not, we loose heat out of the house through our windows, so I keep the curtains closed right through the winter to save money on heating. The nights are still cold, so I at least I can still get away with closing them long before it is dark, I doubt it will end our marriage long argument that sunset is when the bottom of the sun touches the horizon, not when it becomes totally dark, even showing him the proof online, hasn’t changed his personal opinion, he is right, the rest of the world is wrong, I just smile.

We sat last night and had a talk about going to the hospital on Tuesday, Adam wanted to know if I had finished writing the piece that I want to take with us. I had to tell him that I haven’t looked at it for a couple of days, as I just didn’t think the doctor would want to read everything that I had written, it is too long at a page and a half. He hasn’t read it yet, but still thinks that it is a good idea to take it with us and to at least try to get the doctor to read it and add it to my notes as we are in total agreement now that I can’t go on like this any longer. Anyone looking at me in the last few days can see that I am in permanent discomfort and frequently in pain, but getting that across, the actual impact of living like this, well I don’t know how to do that other than in the written word.

When you have been ill for a long time, you begin to see that the worst symptom is the one that is dominating your life at that second. It changes, day to day, week to week, but no matter how bad the pain or discomfort that I am living with right now, at this second, the symptom that is getting to me the most is my brain. I hate this, I hate feeling that I am locked inside with a limited ability to get across what is happening. That stress of just talking to someone other than my family locks me even further inside, it wipes away all those things that I want to say and I find myself searching around an empty mind for not just the words, but the fact as well. Add on to that the stress of being outside my home, my cocoon, and I diminish into a silent lump that says little and when I do, it is interspaced by stutters and word searches that can go on forever. This is one of the problems that I suspect happens to everyone with a condition that affects our brains, when we are talking to people who know that, who understand it, we have a freedom that helps in a strange way to keep us more fluent, even if only in our imagination. Put us in front of someone, especially a doctor who is, in fact, a doctor who doesn’t specialise in our condition, but are a god when it comes to our health and we fall apart. Yet there we are because we have no choice, no other route into getting help, any help with how to manage what is happening to us, searching for the person or solution that can put the breaks on to the spiral we are caught up in.

There is something so wrong with this whole process, this determination by the outside world that we are part of it when, in fact, we are clearly not really part of it at all. I am incapable of functioning like every other person out there, I freely admit that I know without a doubt that I am not capable of it any longer, not just physically but more importantly mentally. It is an alien environment for someone who hasn’t put a foot into it in 8 years, yes I have been out, I have been to the hospital but I still haven’t put a foot outside. I haven’t been out there by myself, having to deal with people, with conversation, or even with talking to a doctor by myself, I always have Adam with me, as I would be a million times worse if he wasn’t there. There is a limit though to what Adam can do for me, he doesn’t live inside my body, he just watches me, he doesn’t know the pain or the discomfort that I am in, he just watches it and rightly or wrongly, I hide as much as I can. Take me out of here, take me into that alien world the place that now means nothing to me other than fear as I might as well be being dumped on the moon, as my memories of it are as clear and as detailed as my knowledge of a world that has changed beyond my comprehension. If those doctors whose care we are in really wanted to help us, they should come to us, they should speak to us in our own environments where there is a good chance that we would be more able to actually tell them the details that they need to truly be able to make our lives better. I know that there is as much chance of that happening as there is of my actually stepping on the moon.

Being housebound changes so much about how we see life and the world we can no longer reach, it is a little like moving city, then returning to it several years later to find that someone has rebuilt it since you left and nothing is where it once was and the people you once knew, have all been replaced. My world ceased to exist 8 years ago, what is out there, the people who are out there, are worse than aliens, as aliens aren’t familiar, aliens don’t speak a language that you sort of understand nor do you feel they should understand you. I am locked in a time warp, I am a person who is out of sight and out of mind of those who I still depend on to make the life I have better. I am in a position that until you share it, I sincerely doubt that anyone can truly understand the impact that it has on everything and every day. That is truly where our care falls down, no doctor who hasn’t been that ill that they have become unable to leave their homes, or who live their lives locked in pain can possibly understand just how it destroys you, all they can do is half observe what is there in front of them, I say half observe as that is all of the picture that is available to them.

Today I am going to try again to put into word something that a doctor will read and will feel, if only slightly what it is now like to be me and hope that somehow they can actually give me the help that I need. It’s now my fifth month of living like this, my fifth month and I have had enough, there has to be something they can do to make it more bearable.

Read my blog from 2 years ago today – 16/05/13 – Withdrawal or Overdose

I have now for years always taken my final medication for the day at 7pm, I started taking it at that time as I was up daily at 4:30 am for work so it fitted well into the required cycle. 7pm is also the time that I always switch mentally from daytime mode to night time, I pour out my glass of coke and replace the contents of my glass with a well deserved Gin and Tonic. Well deserved then as I would have been working from 5am almost….

I am here

In the last few weeks I have had some amazing messages both here and on Twitter, I know it might seem odd for someone who can sit here and pour out page after page about everything from the physical to the emotional, that I honestly never know how to answer them. It is one of the problems that I have battled with for a really long time and I guess it has to do with two issues, the first being that it is something like having a conversation. For too many years the only people I speak to regularly is Adam, Teressa and my friend Jake, outside of that I rarely talk to anyone, partly because there is no one else out there that ever calls me and waiting for me to call is like waiting for hell to freeze, it just won’t happen. I don’t not phone people out of rudeness, but because I either don’t even think about it, or if I do I forget as quickly, or for the biggest reason of all, I have nothing to say that they haven’t heard already and I never actually talk about what is going on with my health with anyone unless I am pushed. Talking to stranger is even worse as I get myself in a knot between my brain not giving me words, stuttering and worse still I totally forget why I wanted to speak to them in the first place. Recently Adam has taken over anything phone based for me, but that clearly doesn’t explain why I can’t type a reply, other than the mental connection of conversation.

One of the things that I find so difficult is the fact everyone is being so nice to me and praising me for what I see as nothing, all I do here and on Twitter is to be me. Praise in any form, doesn’t sit easy with me and replying beyond a stuttered thank you, is impossible. That has nothing to do with my health, although I would say that it has got worse over the last few years, no that has to do with the first half of my life, when I heard nothing that ever even sounded like praise, no matter what, I was always in the wrong. I do find the written word easier than face to face conversation in the respect that I can read it back before I send it, but I have more than once discovered that people don’t take what I say in the way that I mean it, both spoken and written. When I write my posts it is a little like writing to me, I don’t really think deeply about it in any way, what falls out of my head can be just as much of a surprise to me as it is to others, but when I direct that at another person, it seems to fall apart. These days I spend 10 minutes just thinking of how to answer a tweet, without it sounding patronising, pitying or sickly sweet and that is only a max of a 140 character. Ask me a question and I have no problem, say something nice, or tell my your story and I suddenly seem to freeze, so scared of saying the wrong thing. The worst thing is, I so love hearing about other people and I hugely appreciate that someone who doesn’t really know me outside my words, cares enough to even send me two words, yet how to reply is this huge ball of stress that scares the hell out of me.

Life, compounded by brain damage, has turned anything that is even close to social interaction more than just hard, it’s often impossible. When things are bad for me, I can’t even talk to Adam outside of passing comments and that is when I pour things out here, as at least he can read them and find out how his wife is. Yet again my brain has poured out what has turned out to be a complete post, when it was meant only to produce the first paragraph. All I really wanted to say was thank you, to all of you who remind me I am still human and an apology for my remiss in not truly replying as one. Another problem with replying, I think has just been made clear, I ramble on.

This may not be what I intended to write but that is the way with the truth, it just has to be heard in full, as without the detail, it can sound like nothing other than an excuse. When your brain is no longer the way it was and you know that, it is often hard to do what is right at the right time. Every day I read every tweet that was sent to me in the past 24 hours, I search through them for questions or words that make it easy for me to show I am here and I am hearing all of you, some days it is easier than others, some days it is impossible, but it doesn’t mean I don’t care, just that I am locked inside somewhere observing, reading, enjoying, sympathising and empathising, just not capable right then of reaching back. I used to think that being housebound would be the thing that would limit me, but it hasn’t been, I have shouted and shoved my way into the worlds of so many people, some for a short time, others for years now, but there is a limit that I can’t escape and that is the one my brain is building bigger and stronger over time, slowly it is closing down my ability to truly interact, I am just grateful that I can at least express myself and talk here, to anyone who wants to hear me.

 

Please read my blog from 2 years ago today – 05/01/13 – New leg please!

Well it happened I woke up this morning early because of the pain! What is it they say about don’t mentions something or it will happen, my fault then I guess. It was extreme nerve pain……

Silence

At this second in time I would just love to have a little consistency in my life, yesterday morning I ate my breakfast without the slightest problem, this morning, I managed about half. Why that annoys me or even surprises me I don’t know, consistency has been missing from my life since my very first flare, life in the unknown zone is the only consistency there is once your own immune system has decided you are an alien to be destroyed, mind you I have also been aware most of my life that an huge number of people would agree with the alien bit.

This week is going to be an odd one, as Adam is off work for the whole week, once again they have been pushing him to use up his annual leave so he has this week and a load of days here an there off through the remainder of the year. I didn’t see that much of him yesterday as he hid himself away in the kitchen working on an essay for his college course, it’s odd how life travels in circles, nearly 30 years ago I was in the same position with a husband studying, at least this time I don’t have 2 children under the age of 2. When I went to bed he announced that he was on a role and really felt he was getting somewhere, when I woke at 5:30 am to go to the loo, he was still in the kitchen working, with no intention of calling it a day. I used to be like that, unable to stop doing something and totally disregarding the clock as what I was doing was just to important to me. I have to say in a way, it made me proud to see him applying himself to his work, education was something that had sort of escaped him, even when he went to college after he left school, it turned into one long drinking session, which was still going on when I met him. It’s strange, but I actually envy him, I had had plans so many times to do a degree or college course, but it never happened, now, well I have the time, if I stopped everything I am doing on line, but I now believe there is more to gain here than there is in having letters to add to a grave stone. Adams HNC course had nothing to do with me, but I did push my first husband and many others in to education, in fact the company I worked for, for 13 years before redundancy was a distance learning company, selling courses from hobby to degree and I sold my share of them, in my first role with them. Yet here I sit without any qualifications, unless you count a handful of certificates from when I was working in the hotel industry, I’m a qualified cellar person and keeper of real ales, not much use these days. Outside of those I taught myself everything I needed to know to get me work and through life in general, so many people always assume that I have some degree or other, or that I must be well read at the least, the truth, I haven’t read a book since my first marriage ended and what I did read was mainly science fantasy, not much of everyday value there really. I honestly believe that we can make ourselves what ever we want to be, but not until we are past the age of 25, after that, well no one ever actually asks what qualifications you have, they just ask what can you do for us, then us for you.

My problem with time seems to be getting worse again, I haven’t for months now been able to hold on to the correct time of day, or what is happening at what time. I’ve mentioned it a few times in the past few months, like the fact that Adam now has an alarm set on his phone to make sure that I take my medication at night. I know that I have been taking them for years, but for some reason I started to forget to take them, then would lie in bed in pain trying to work out what was wrong with me. Some days I remember but recently the occasions of Adam telling me to move or my staring at his phone trying to remember how to shut it up, are increasing. In the past week it has been 4 evenings out of 7, that I have blissfully just sat there unaware of the time, but the issue is growing and I am not the only one noticing. The most obvious is my total lack of ability to work out the length of TV programs and how many we can fit in between 7pm and 9pm. I know just how stupid that sounds, but I do it again and again, even when I try hard to make sure it doesn’t happen, it is Adam who has to correct me, or even tell me to go to bed as 9pm has arrived and no we can’t fit in a third one hour show. Yes, I can and do make a joke out of it and Adam has repeatedly told me that “it’s not stupid at all”, but that is how it makes me feel, it is the kind of mistake that not even an average nine year old would make, unless they were hoping no one would notice and they would get to stay up later. You might wonder why if I want to watch something more, don’t we just do so, easy, I wouldn’t reach half way through without going to bed and I would be dead the next day. On it’s own it may not sound like a big issue, but it is one of many examples of how my brain is vanishing.

I have always been bad with names, but not like I am now, it has got to the point that we can be watching TV and talking about it and I will not be able to find the name of the character who is on screen that second, in a program we watch nightly. My sitting there pointing at the screen and saying “thingy, there, him right there, what’s-his-name, you know” and feeling myself getting exasperated with myself, is now a nightly event. Adam is incredibly patient with me, but I know it must get to him at times, just as it does to me. Like everything else, I have good days and bad days, but a good day might mean it happening twice in a night, on a bad it’s every second one and I just shut up, well when you can’t talk, silence is your only option. Trust me silence is easier on me too, as it’s clearly not just names, the times that I can’t find the next word is growing as well, once the frustration starts to build, I then start to stutter and the whole thing turns into a nasty mess. I did have one triumph last week, I managed to book the ambulance to take me to hospital next Thursday, Adam booked the last one, but I decided to do it and despite of the stupid press button system and the same stupid questions they ask every time I got there without getting wound up. I actually think it was helped by the fact the guy on the other end couldn’t pronounce the name of our street, it Scottish and a bit of a tongue tier, so we sounded as bad as each other.

I can still laugh at myself and the mess that I call talking, but when you feel fine inside your head and words can pour out of your finger tips, only getting stuck once or twice in a couple of sentences, to then find that your mouth is your obstacle to the world, is painful. My voice has been the one thing that made up for my lack of education, I was given election lessons and with a relatively soft Scottish accent and a fast brain, meant that being a DJ, or a sales person were perfect roles for me, when I started to stutter and get tongue tide, selling was clearly no longer my forty, but my logical mathematical brain took over and took me through to the end of my working years as an Operations Manager for the same company. Just the idea now of sitting in a boardroom meeting would be laughable, I never once thought that of all the things I would loose this would be the one that is the most life changing and the most devastating when it comes to me, myself as a person. Next to our appearance, how we sound, how we put together our words and express ourselves, well they are us, loose it and we are loosing ourselves.

Read my blog from 2 years ago today – 2/11/12 – The visit > http://bit.ly/Po4vRW