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…….

 

 

 

 

Nothing can destroy love

I constantly stumble over people who haven’t been as lucky as I am, to still be married after many years of illness. The first thing they always do is to blame their health, for them being alone, but the more I think about it, the more I doubt the truth of that statement. Without a doubt, every single one of us will lose friends along the way. When we lose friends, few sit in tears and grieve over their loss, we just move on, telling ourselves, they weren’t real friends in the first place. Personally, I think that may too, be the truth of partners who run a mile, just because we become ill. It isn’t a deficiency in the love we have for them, but their love for us. It doesn’t matter how hard I look, the only reason that I can give for Adam and I surviving what has happened to me, is love. There isn’t anything special about us, other than we totally love each other, and the very thought, of being apart, is worse than anything my health can do to us.

If I am honest, I don’t think there was a single person, other than Adam and I, who thought that we would last. There were a million reasons why we shouldn’t, starting with the age difference, the fact we came from very different worlds, and what we had in common could be written on a cigarette paper. Then there was the fact I couldn’t have any more children, following a hysterectomy when I was 25, and my first child was born just a year after he was. We had only known each other a few days when he more or less moved in with me. We were engaged a few weeks later and left the shared flat I had lived in for years and into a place of our own. Which was quickly followed by us getting married. Just after our first anniversary, we bought our flat and just after our second, all my aches and pains, my growing tiredness and a list of other things, were explained as Fibromyalgia, six months later, that diagnosis was joined by another of PRMS. Not the best things to appear at what was just the start, of our lives together. Two years later, to both of our surprise, I lost my libido. At first, it was just the combination of being in pain and being constantly tired, that meant our sex life diminished, but then the whole concept became an alien thought. 11 years on, and it still hasn’t reappeared. Then 9 years ago, I became housebound. There was nothing left that could happen to us, that could or would in many people’s eyes destroy any marriages, but here we are, still in love and still very happy together. If anyone can say that chronic illness doesn’t have to be the end of a happy marriage, we can, as apart from death, there is nothing left that it can take away from us. If you truly love each other, you truly can survive anything.

Having said all that, it doesn’t mean that there haven’t been several times, that I thought it was possible that we wouldn’t survive because of my health. In fact, I still remember clearly just after my diagnosis or PRMS was know, and I had absorbed just what it meant, that I told Adam to go. I clearly didn’t want him to go anywhere, but I felt so guilty about the fact I had been ill for years without a diagnosis before I even met him. I had been trying since I was in my 20 to find out what was wrong with me, but the doctor kept sending me away, they repeatedly told me there was nothing wrong with me. I had had no choice but to accept it, so I never even mentioned it to Adam. I had lived with it for 17 years, what was there to say? It wasn’t until we had just moved in here and I found myself once again struggling, that I first mentioned it, so yes, I felt guilty. I didn’t want him to feel that he was tricked or trapped, if he wanted out, I wasn’t going to hold him back from going, as I could totally understand of that was what he wanted to do. When I said it, I was terrified. The whole thought of losing him, on top of everything else, was almost unbearable, but he stayed.

When sex went out the window, of course, I feared that that was the end. I even tried to fake it, but when the feelings not there, there’s nothing and Adam knew without me telling him, that something was totally wrong. We had always been one of those couples who just couldn’t bear to not be physically touching each other. We went nowhere without holding hands, sat as close to each others as we could get, and were always, stealing a kiss whenever the opportunity arose. Suddenly, I was pulling away, trying not to make contact, just in case he got any ideas. Every time I did, the same fear appeared. How long would he stay with me, without sex? Sex had actually been one of those difficult things for several months. I knew already that he feared causing me more pain than I was already in, to be honest, so did I, but when my libido switched off totally, my final fears appeared. We talked, we talked a lot, and although for me there is still some guilt, it has become, just the way we are. Of course, there is still physical affection between us. We cuddle and we kiss, but that’s it, it never goes any further. For me, I have to say totally honestly, sex never enters my mind. It’s unavoidable on TV, but it doesn’t matter what I see, what the atmosphere is or anything else, I feel nothing. These days, if it suddenly reappeared from nowhere, I know without even trying, that I don’t even on my best days have either the energy required or a body that wouldn’t cause me more pain than I would be able to endure. Libido or not, I believe that it would now be a closed subject. We still love each other deeply, and neither of us, are going anywhere unless the other is with us.

Marriage, all marriages start and end with friendship. If you partner isn’t your best friend and you don’t love them regardless of their faults, chronic illness may just be the straw that doesn’t just break you, it shatters you, but it isn’t the reason any marriage will end, that’s going to be due to something else, that just wasn’t right in the first place. So if you have been recently diagnosed, don’t fear what your health might do your relationships because if you both love each other enough, you will survive this as you would, anything else. If love is deep enough, it survives anything, just as long and even after you do.

 

Please read my blog from 2 years ago today – 05/02/2014 – Holding back the future

We all like to think we are individual, but the thing that makes us happiest is to find someone just like ourselves, just one of the many things in life that I just can’t really get my head round. We all seem to have……

 

 

 

 

 

Abandoned by our friends?

Sometimes, it just feels like I have more to do in a day than my body has the energy to do, or the time available to fit it all in. Yesterday was one of those days. The day before a hospital visit always feels that way. I know that the only person putting any pressure on me is me, but I simply can’t help it. It appears that, that, work ethic, no matter what, never dies. I know it is nothing more than a feeling, but if I don’t manage to create the illusion that I am sat here as normal, well, then I have failed. I know it’s stupid, but it does also have a real reason behind it. It actually has its roots set in a single day three years ago. Just like today, I had quite simply gone to the hospital for an appointment, but I didn’t set anything up in advance. To the outside world, it appeared I had just vanished off the face of the social media world, and some people panicked. By the time I got home again, I had tweets, comments attached to my blog, and on my now defunct Facebook page, from people showing unbelievable levels of concern. I had been missing for a handful of hours, I hadn’t died, but you might have begun to wonder if you had read them all. From that day on, I have made a point of creating the facade of normality, regardless what is going on. Don’t get me wrong, I was extremely touched, but I felt so guilty for having worried people in that way, that I swore I would never do it again. So yesterday turned into a day of trying to do two days work, in one, never a great idea really, but for once I think, I got away with it.

One of the joys of my PRMS. is that it likes to play games. You can never say that this or that is going to be a problem. Any more than I can say that going to the hospital today will wipe me out for days, for the week, or not at all. If it’s feeling really sneaky, I might be fine for the next 24 hrs, then suddenly, I will feel flattened. When it first became ultra active 14 years ago, I didn’t have a clue what was going on. I planned my life with the greatest of care, expecting like anyone would, that if something was going to be too much for me, I would know at the time. It actually took me a year to understand, that planning was of no value, what, so, ever. It wasn’t like anything I had ever had to deal with, as the one thing it didn’t contain, was any form of logic. I had quickly discovered that energy couldn’t be banked, so the idea of taking it easy, because I wanted to do something later, or the next day, didn’t work at all. At one point, I actually kept a spreadsheet showing how much energy different things took out of me, and what my physical reaction to each was. I was desperately trying to find a pattern, something that would make some sort of sense. There wasn’t any. It is really hard when you are used to leading an active life, outside of work, to suddenly find that there was literally, no point in even trying. Why waste your time putting on your makeup and getting ready to go out, just to find as you reached the front door, that you couldn’t go any further? I lost count of the number of times I told someone I would meet them later, to find later, didn’t exist, well for me at least. By the time, I was in year 3 post diagnosis, I had stopped saying yes to invitations, only ever saying, “Maybe”, by the end of year 4, the invitations stopped as well.

I have heard so many people saying, that their friends disappeared and that it just proved that they weren’t real friends at all. I personally, don’t really believe that. I have written several posts with parts of my reasoning behind it when it comes to our social friends, but I don’t think I have ever written about our work friends. I think the post about social friends were somewhere in my first year of writing, but that is, only think. I believe that much of our loss of work friends has to do with just the way people live their lives, as it is with social friends. But I also think there is one factor, that most of us totally miss and it’s ourselves. If you think back to those days, those times when you were face to face with someone in the workplace asking you, to join them for a drink that evening. Now think closely about your body language, your voice, and your face, you will find several clues. Something none of us deal well with is embarrassment. When you know; that the chance of you being able to join them; is down to your health, well, we all feel somewhat guilty and embarrassed. Yet again, your not in control, and you are more than likely going to have to let them down, by not being there. The second that your brain works out that you are being invited somewhere, that embarrassed, and even guilty feeling, starts to show on your face. The person who is asking you to be there picks up on it, and they start to feel bad for asking you. They are in that horrid moment when even the best-preplanned words, start to sound wrong, or pitying, and they don’t really know how to change their words, or how to get out of the whole situation. You are feeling just as bad. It is no wonder that they will think twice about the next time of asking you to be there. Add into that, the fact, that the more people you say maybe, or no to, the less they will ask. They weren’t running away from you, they were running away from feeling awkward and embarrassed. Put the shoe on the other foot and be totally honest, you would have more than likely done exactly the same thing.

The first people who started to avoid us, where our acquaintances, those who didn’t really know us well enough, to know, if being blunt, or hedging around the obvious, was the right or wrong thing to do. Slowly one by one their invitations started to dry up. The ones who kept asking, always put into their invitation, something along the lines of, “I fully understand if you aren’t up to it, I just wanted you to know that you are more than welcome to join us if you feel up to it”. The air of awkwardness remained, especially for us. Unless you were a first class actress, that always showed and our embarrassment, out shown our appreciation of still being included. For me to begin with, somehow, I was always left with the feeling that I was letting them down. Worse still, that they might think that I was using my health, as an excuse. Even worse, that the truth was, I just didn’t want to be there, with them. I know now, that because of that, that I probably over did my thanks and my explanation of why I might not, or most likely wouldn’t be there. Even as time went on, my thanks and rejections, still showed that I was not fully at ease doing so. It’s just human nature that the more people see this reaction, that they are going to try and find a way of not making you feel that way, there is only one way, not to ask you in the first place. Add in, a simple fact, that the more you don’t go to parties, nights out, or company dinners, the lease likely that they will even bother to ask you. Work friends and acquaintances, don’t leave us, we leave each other.

None of us are taught how to deal with the illness of others. Our work colleges are probably the people outside of our partners who see us the most. They have watched us over the years getting iller and iller. They have seen us in every state that our health can produce. In my case; I had gone from a bright, person who moved swiftly; never missed an opportunity to attend anything that sounded like fun; to a person who was painfully thin; frail looking; in a wheelchair; with a gastric nasal tube, permanently over the ash white skin; that was on the few days that I made it into the office, as I worked mainly from home. Over 10 years, I had diminished in every way possible. No one asked me to attend anything in the final 4 years, partly because the final 3, I was housebound. I didn’t lose my work friends because they didn’t care or didn’t know how to handle my health, they had seen everything possible, there was nothing they hadn’t been involved in, in some way or other. I lost my work friends because my health removed me from the situations where as people we bond, those social events where we are people, not the manager, or staff member. We don’t bond at work, we bond when we’re social, if that is removed, so are those friendships. Just like any other job you have ever had in the past, once you don’t work there anymore, once you and they have moved on, those people we counted as friends, are gone, we and they, become part of the past. Be honest, how many people did you stay friends with from your very first job, or you second, or third, and so on. That is the way it always works; for us this time it’s more noticeable; we haven’t moved on to another job; we aren’t in a place where those relationships are replaced; we’ve moved on to another world; one where we are alone, so we feel it far more.

It is all too easy to say our “Our friends don’t want to know me anymore because we’re ill”. Our work friends don’t think of us once we have left their family, as that’s the way work families work. Your seat in the office isn’t empty, it has a new you in it. The person who sat there is gone, but the person who does that job, is sat in the same place, they always have. So don’t be hard on them, as it’s life, not them, not your health and definitely not you!

Please read my blog from 2 years ago today –  09/11/2013 – 1/6th lost to pain

I thought that yesterday was just going to be a simple day with nothing to report and in many ways it was, I did everything that I would normally do and even had a late afternoon shower, which…..

Friendship prt2

This morning I discovered that my daughter like millions of others including myself is facing redundancy. I feel so powerless to help her in any way, with her living in San Fransisco it is hard to know what I can do. I am not at all aware of the laws in America but I do know they are very different to ours so I don’t even know if they have to make redundancy payment or if it is just a sorry goodbye. The company are moving there operations to London and as she has a UK passport there is a chance that she may be offered a job over here, but she won’t know until tomorrow what, if any that job may be.

It seems so cruel that the wonderful person who set out to try and help her Mum get a job, by in her own time setting up webpages and accounts through which she tried to start a campaign, should now be facing the same situation. I know she has a life in America and a guy she in now living with, that to smash it all apart and to have to start again just isn’t fair. It was only a few days ago that I wrote about our lives shadowing each others in strange ways, then another shadow appears. It is when things like this happen that as a parent I feel totally lost, I can’t financially support her and I know she wouldn’t ask me to but I want to somehow make this better, well that is my role, isn’t it. Like everything else in life i know this will sort itself out, it just takes time not magic wands, we will know more in a few days so another waiting game begins.

The sunshine seems to have brought a string of surprises, I received another email yesterday that stopped me dead. At first I thought that I was being conned but I decided to check a little further. From nowhere I was reading an email from someone I never thought I would hear from or see again. A couple of weeks ago I wrote a post about a very special friend who had vanished from my life without reason or notice, she just vanished one day. At that time I was running a duplicate blog on an other site as I was testing to see which one I was happiest with, clearly this is the site I chose and I had made one last post on the other to redirect anyone who wanted to keep reading to this site. Technically that means the post are all still there, in fact the post on Friendship was the last but one on that site. Like many people I have multiple email addresses and my details for that site connected to it’s own address so when the email arrived I knew where the sender was contacting me from.

I really didn’t think that it was Tracey I thought it was someone just playing a cruel joke, there was nothing in it other than a line saying how touched she was by my post about ‘our friendship’. I so nearly dismissed and deleted it, but as I hovered over the delete button I decided to email back asking them for some detail that only she and I would know. This morning there was a reply. It wasn’t a joke it is Tracey. With a thousand questions in my mind I answered again. There is so little info that has passed between us but I have always been a nosy person and having spent so many years in a job that involved digging in data I pieced together enough info to start digging. If you are reading this Tracey I have found your Facebook page and I see you have a new husband who wears glasses and you live in London, and I can’t wait to find out more about your life in the past years. All I can do for now is settle into another wait, I’ve waited 10 years, so a few hours more I can manage.

It is only 11am but I must have check my email a dozen times already hoping the either Tracey or Teressa have answer the emails I sent this morning and I guess until I do hear I will continue to check every few minutes, it is going to be a long day. I can already feel the pain in my legs getting worse, as it isn’t only stress that affects MS, almost any heightened emotion will aggravate it into action, I just have to make sure I get some down time later as sitting here clicking the ‘check mail’ button doesn’t achieve anything.

Friendship

Jake phoned me this morning to continue has story about his drum kit, so my diaphragm spasm hadn’t given me a true escape, just a delay. I now know that the snare drum is the same one as used by the drummer from ‘Metallica’, enough said, I can feel you drifting off already. He asked me is Tracy was in Glasgow just now? That kind of surprised me. Tracy was probably the best female friend I ever had. We met when we both lived in Rhu and is often the way, we met through our children. My daughter was attending the nursery school at HMS Faslane, the children were picked up each morning by the Navy transport and returned at lunchtime. I received a call from one of the teachers late one afternoon. asking if I could take a message to a mother who had just moved in the day before, as her phone wasn’t set up yet. It surprises me still how such a simple act, could have impacted so massively on my life.

Before I met her I never realised that you could just simply meet someone and with in hours feel like we had been together since birth. It is probably fare to say that we changer each others lives in ways that those around us couldn’t understand. Both our husbands were in the Navy and both of us were frequently alone, we filled that void left by husbands, duty and distant families, we took care of each other and supported each other. With the children off to nursery, we would sort out anything that was needing to be done in our homes then meet in one or others houses for coffee, most afternoons we gathered up the children and our dogs and head off to the spit or off up into the hills behind the village. When I left my first husband and went to work at the Ardencaple Hotel, Tracy soon after landed a job there as well and although I was now single and living in Helensburgh, we made a point of seeing each other outside work, going out for evenings together and remaining firm friends.

I new her husband didn’t like me, but put up with me for Tracy’s sake and when I move to Glasgow and our relationship stayed strong, he told me to my face that I wasn’t going to take his wife from him. Clearly he saw me as a threat. At least twice a month we would spend 24hrs together, she would stay over at my house and we went out shopping and clubbing. With me she knew that what ever she did in that time I would never tell anyone. I gave her the freedom to be herself and not just a wife and mother, I gave her the support she needed to grow up and she returned every second of it. We were always there for each other at any hour of the day or night.

I will never forget the phone call the day that she found out that her husband who she had thought of leaving more times than I could remember, was having an affair. Just like my ex he had had several over the years but this one she found out about and the truth tumbled in behind it. As she had supported me, I supported her through the break up of her marriage. By this time the Navy had posted them to Bath and of course she had moved there, she had a job, her daughter was settled in school, so her life was there. We thought about sharing a home but decided against it, work was the main reason, we both had jobs we loved and neither wanted to change it. But still our friendship didn’t change.

While she was staying with me for a holiday, she met one of my friends and started and affair with him, but he was possessive, no matter what she or I said to him, his infatuation with her was becoming destructive. He would send flowers, turn up at her home in Bath, phone her several times every day and then again in the evening. She moved house and I refused to tell him where she was, but he found her. I knew she thought I told him but I didn’t. The last time I saw her was less than a year after that. I asked her to be witness to my marriage to Adam, she stayed in Glasgow with us for a few days before the wedding. Everything seemed normal, she was excited and enthusiastic about all of it. On the day Tracy and my daughter were to me the most important guests and they were fantastic.

Adam and I returned from honeymoon and I tried to phone Tracy, there was no answer. I kept trying, thinking that maybe she had gone on holiday, or was working extra shifts. After a month I stopped making excuses for her and realised she was gone. I tried, I tried really hard but couldn’t find her. We bought a house a year later and moved, taking our phone number with us just in case she wanted to call me. I still secretly hope that one day the phone will ring and it will be her, but it never is.

Jake thought he saw her in the supermarket a few days ago. The person looked as he thought she would now and she kept looking at him as though she wasn’t sure if she knew him. Neither spoke to each other, so I will never know but I have asked Jake that if he should ever see her again to make a point of speaking, I don’t care why she vanished but even 13 years on I would love to see her again. Friendships like that are rare and even if I never see her, she will be a special person to me for ever.