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…….

 

 

 

 

Reactions

When people think of chronic illness, everyone thinks of the big things, the pain, the disabilities and so on. We cease to be everyday people, somehow we have become almost lepers, unclean & unrecognised. Some find us to hard to face, as we make them feel inadequate. Others are embarrassed and feel guilty about their own healthiness, and others still, are simply scared, as they see in us a possible future, one they don’t want to believe could exist. If our lives weren’t tough enough just dealing with what our health throws at us, we have to spend our time trying to work out which it is, and how to put them at ease. I know that a lot of people would say, “Why bother, if they can’t accept you just as you are, it’s their problem, not yours.” Personally, that just doesn’t work for me, I have always believed that other people do matter, even the ones that I will never see again, or even ever see at all, if they are somehow aware of me, they matter. I’ve never been worried about what they think of me directly, but what they think of people, like me. It doesn’t matter if it has been my appearance or my lifestyle, I have tried to live as an ambassador, a changer of minds and opinions. If I can make one person think, even for a second, then I have put enough into their minds, that will mean whether they intend to or not, they will think about it. Hence, here I am, still plugging away, still trying to open eyes and make people think.

To some extent, I can understand some of the reactions people have to other people, especially the chronically ill. A lot of the time, I honestly believe the problem is simply that at first glance, the majority of us don’t look ill. We’re not pale, with sunken eyes and our bodies, aren’t wasted to a shadow, but that isn’t an excuse to some of the reactions I have had in the past. If there was one thing that I would recommend to anyone who is ill, it is to get yourself a prop. When you spend much of your life in pain or suffer badly from fatigue, which as we know, can hit us out of the blue, if you look totally normal, no one will give you that seat on the bus, that you, badly need. It might feel wrong, or even deceitful on your good days, but a walking stick, can totally change your life. If that seems to bulky, or a nuisance to carry when you don’t have to, well there is one that you can keep in your bag, a medical sling. At first thought, why would someone give you their seat if you’re wearing a sling? Well, it takes a little acting skill, but if you wince several times as the bus swings around corners, look a little unsteady, and even show pain if someone touches you, a seat will appear. I know, because, I was guilty of using that one, long before I was diagnosed and I was having what I now know were flares. The guilt would get to me at times, but it was better than collapsing from fatigue in the middle of the bus. Whatever prop you choose, just remember it has to be visible and credible, just wearing a wrist brace alone, won’t work.

Once I was diagnosed, I didn’t shy away from even telling total strangers if I needed help. For the first couple of years, I still took the bus to and from work daily, and there were times when I would quite bluntly ask for a seat, especially on the way home. I was always polite and I always spoke loud enough so that if, the person I spoke to was reluctant, they were embarrassed into standing. If that failed, someone close by would offer me, theirs. On the whole, people I spoke to were usually helpful. It was the looks from those walking down the street when I staggered or stumbled, that I found hard to deal with. At those moments, I use to wish there was an angle triggered sign, that could just pop us above my head, saying “I’m not drunk, I’m ill”. Life shouldn’t be like that, we shouldn’t be made to feel that way, but I never found an answer for it, until I gave in, and started carrying a stick everywhere that I went. The majority of people in this world change totally once you have that stick. There are still some who try to pretend you’re not there, or that they haven’t noticed the stick, try as I might, I never fully found the answer for them. Lack of knowledge is treatable, ignorance, isn’t, unless, you want to spend a lifetime reeducating them.

I remember, a very long time ago now, going to London with my children. They were very young and I thought it best to have them for safety reasons, in a double buggy. We were walking through a big store on Oxford Street, when my sister who was with me, overheard someone say, in a very snooty voice, “They shouldn’t allow those things in here”. I never heard anyone say it, but I saw, that exact phrase, on the faces of some people when I was out in my wheelchair. I did here, tut’s and huff’s, when I was blocking a narrow isle, or I got caught up on a trolly with wheels no more accurate than mine. I know people get frustrated by many things, if I had heard the person in London, I would have stopped them and engaged them in conversation as to where my children should be, and would they want to pay for their care for me. When it comes to wheelchairs, well I have always been firmly of the belief, that town planners, shop fitters, and designers, should all be forced to spend two days, strapped in a chair. I don’t have the slightest doubt that if they were, our cities would look very different. In some ways, I don’t think that it would be a wasted exercise if everyone was put through that ordeal, understanding would grow rapidly. Neither, are going to happen, so it is down once again to us, to educate every single person, whenever the opportunity appears.

A wheelchair, or a walking stick, isn’t giving in, if anything, it is a badge of honour. No one gives out medals to the ill, but I have met many who deserve one, people who have been through so much more than I ever have. I now understand what it takes to be given one, as they aren’t just handed out because you have a little bit of pain, they are handed out to some of the strongest people alive. Those who treat us like lepers have much to learn, but I hope they never have to learn it first hand. There are no hard and fast rules when it comes to dealing with any individual. Some will always hold fast to their blinkers and refuse to show empathy for a single living being. They are the people I feel sorry for the most. They are the ones that I more than anything, would like to be able to reach, as they are wasting so much of their lives, being anything anywhere near human. Everyone with chronic illness will lose friends, but there is no truer saying than “when the chips are down, then you know who your true friends are”. That though isn’t the only reason they go. It’s a complex mix of things, some have nothing to do with health, just life. What I don’t believe, is that they can’t stand to watch us suffer, that is total rubbish. Firstly true friends don’t think that way, they see us, not our health, but more than that, friends love each other and love, just doesn’t work that way. It shouldn’t be through lack of understanding either, as we are the greatest teachers about what is happening to us, so they should understand. People just simply come and go from each other’s lives, the problem we have is the normal replacement system, doesn’t work, we’re not out there as we once were, to find the replacements. We don’t have the energy to use that it takes to build a friendship, our lives have changed and world hasn’t.

It is up to us, to decide how we deal with others. I will never stop trying to spread the simple missed fact, that we’re still human. We have the same needs, same feelings, and the same requirements, of every single person that sees us, even the ones that only see us out of the corner of their eyes, as we ever did. If the world is ever going to be a better place for those to follow us, it’s up to us. People won’t change unless we do the work to change them, and that could totally change the lives of so many to come.

 

Please read my blog from 2 years ago today – 16/12/2013 – Leave me alone

One of the comments left for my yesterday mentioned something I have often wondered if it is attached to my MS although it was left by someone who has Fibro, something else I also have. She referred to not being…..

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…..

Soothing the fears

The week starts again and Adam has headed out to work which of course means once more I am on my own. I find it strange how many people find being alone so hared to bare, just this morning I read a tweet from someone who is still able bodied but it facing a future of possible housebound existence, and although there is only 140chars to send as a message, I could feel their pain and fear towards the whole idea. Maybe the fact that I can’t remember ever feeling that way is why I cope so well now, I never saw housebound as something to fear, I saw it simply as a challenge and one I had to find my solution to. I believe that if you face anything in fear and you will fail, you have already set up lists of problems and negatives without a single positive to build from. I can’t remember what my positive was now as it is so long ago that I started this process, but I do remember that it was a conscious decision that I wasn’t going to be destroyed and diminished by something that is after all said and done, is part of almost everyone’s lives. Those of us who get here through illness arrive early, but most will find that in their later years, will be here to.

To be honest to say that I found a huge list of positive about being housebound might be a bit over the top, I think it was more a case of not being able to find a negative that can’t be solved, and that negative tag removed. I doubt there is anyone out there who live their lives on a cushion filled with nothing but positive air, I have come across some who appear to, but normally drugs had a lot to do with that. But seriously, think about it in honest human terms, we don’t all have a life that is wonderful every second of every day, or bursting out in song like a Bollywood movie, the truth of life is we get on with it, moving through highs and lows, but mainly just on a level called normal. Housebound is just the same! The biggest difference once you get past the money and work issues, after that the biggest thing I have noticed is I have more silly little problems. I spend a lot more time working out how to do things, finding ways around things that were never an issue in the past. It may be just me, but well I actually enjoy those issues, they keep my mind ticking over and there is a great satisfaction in just doing something that appeared at first glance, impossible.

I guess that what people fear the most is loneliness, of those who do speak to me of what they fear, that is the greatest issue I hear time and time again. I can only say that it isn’t the horrific specter that most think it will be. When your health has deteriorated to the extent that you can no longer be out and about, your health also means that dealing with people, no matter how much you love them, is actually just too much. I know for a fact that having anyone here is a tremendous drain, yes it is wonderful to see them but I couldn’t cope with seeing them constantly. The hard fact is that I don’t have the energy, at times being by myself is often easier than it is even to have Adam with me. When you are drained to the point where just sitting is pulling the last dregs of what you have to give that day and someone is expecting conversation, well you drain even quicker. I actually think that if I had an extended family and loads of friends constantly coming to see me, I would go completely mad, or withdraw to my bed in the hope they would take the hint. I guess that is the plane truth if you had the energy and health to have an active social life in your home, you would probably still be able to go out and about. If you loose that ability well you will have also lost the energy. When friends withdraw at first it is painful, but eventually it is a blessing. I know that sounds terrible, but it is the plain truth. We all need people in our lives, but as our lives winds down, we need and want fewer and fewer. Hospitals used to limit the number of visitors to two to a bed during visiting hours, well now I totally understand, two people here for an hour, would actually wipe me out and require my to sleep to the next visiting time.

It is hard to imagine ourselves to ever be like that, I never thought I would be either, but here I am and here is the truth. Chronic illness changes us into people we wouldn’t believe we could ever become, but we slowly change and we slowly don’t want the lives we once prized so highly. Look at being housebound with realistic eyes of a future that won’t be terrifying, won’t be lonely but will give you the most wonderful opportunity, to learn and enjoy so many things you never had the time for. Read back through my posts, in there you will see just how much I have found to be good from my years isolated from people, and look for the fears you have, I doubt you will find them. Make your list of what scares you, then look at it again as to what just requires a solution, once solved what is really left to fear?