It’s really simple

I was reading a blog yesterday that I sincerely hope was tongue-in-cheek, as it was saying the most outlandish things about spending time with disabled people, and how to both speak to and treat them. If it wasn’t tongue-in-cheek, then I just found someone who needs locking up. Either way, it made me realise that I have over the years, had many odd reactions from strangers. Granted, when you are asking for help to get out of your wheelchair with loads of parcels, I suppose it does set other people’s minds running. I had to get up two steps, yes, another one of those well-designed buildings, but there was no other choice. Some people are extremely helpful, but I have noticed one thing, from taxi drivers onwards, no one ever wants to touch you, not even when you hold your arm or hand out. I have never been able to work out if they are scared of catching something, or they are scared of hurting me, it could be either. I suppose it is another one of those situations, where education and personal experience means everything. But as a golden rule, if someone offers you an arm, your not going to hurt us and it’s rare, that we have fleas or any other sort of lurgy.

It isn’t that many years ago, where the general opinion out there was, that the second your backside settled in a wheelchair, you became brain dead and deaf. Personally, I have only come up against that reaction a couple of times, but over my lifetime, I have seen it far too often. Once again, I can see that the world is changed and is still changing, but it wasn’t fast enough for my life. With schools now being integrated and disabled children no longer isolated to spending their childhood, with only other disabled children, there is a generation growing up, who will treat us, very differently. Clearly, I haven’t been out socially for over 8 years, but I have noticed on the few trips I have taken to the hospital, that not only has the world changed, so have I. I can remember seeing people sitting in their wheelchairs, with their carer saying almost everything for them, and wondering why, they weren’t speaking for themselves, now I am beginning to understand.

The hospital that I go to the most is the one where Adam works. When you arrive by hospital transport, you can’t bring your own chair, so you have to use the ones available and they all have to be pushed. We often when we are there, bump into people he works with, and they will exchange a few words. I don’t know them, nor do I have anything to say, so I sit there silent. It would be just the same if we were out in a shopping centre, if we met someone, it would be someone who knew Adam. Why? Because housebound or just wheelchair bound, we don’t go out, and the longer that goes on, the fewer people we actually know. Oddly as well, the longer you are isolated, the less you actually feel like sitting there chatting for chatting sake. Logically, you would expect it to be the opposite, but it isn’t. Spending so much time alone, should you would expect, make you want to make the most of every second that you have, with people, but you don’t. The truth is, the more time you spend on your own, along with the worse your health gets, the more withdrawn you become. To my surprise, these days when we go to the hospital, I know that I now adopt a body posture that simply screams, leave me alone. It is one of those things, like any piece of body language you don’t notice you are doing it, until later, when you look back on your day.

I had never thought about it until recently, but it is a posture that I have seen right through my life, from others being pushed in a wheelchair. We sit there, hands folded on our laps and our eyes cast downwards, often, we also sit not straight onto the world, but slightly to one side and it screams, I’m here, but I’m not. On occasions, the way I sit has far less to do with my mental state, or how I have changed over the years, but the pain I am in at the time, but no one but I, know that. Our perceived body language isn’t always what it means, more what our bodies are doing to us at the time. I hadn’t realised just how degrading being pushed in a chair is, far more than propelling yourself. Haveing to be pushed, is a diminishing experience in its own. I used to blame it for me being like that, but now, well now, even if I were to be in control, it wouldn’t be any different. The more ill I become, the longer I am housebound, the more I am withdrawing from that sort of interaction with strangers. The combination of my stuttering, memory problems and everything else, is turning me into one of those people no one really knows how to interact with, and I can see and feel it happening.

So how do you react to someone who is so clearly shutting you out? You speak to us as though we were standing next to you smiling. If that is how I am treated, I respond like I would have done 20 years ago when I was fit and healthy, just with a stutter and few missing words. Don’t shout at me, I’m not deaf. Don’t put your head on one side, and bend towards me, that comes across as patronising, or depending on your smile, intimidating. Don’t crouch down to my level, that’s how people speak to children in a pushchair and I’m not a child. Don’t speak slowly, I do still have a brain. Even worse, don’t speak slowly with emphasised facial actions, as I’ll feel like punching you. It doesn’t matter how I look. If I’m twitching or quietly trying to pretend there isn’t a speck of drool on my lip, treat me just as you would treat your friends. The majority of us that you will ever meet, have brains. There is only one fact you will ever need to remember. No, complex issues or list of possibilities, it’s simple, we are people, treat us as such.

 

Please read my blog from 2 years ago today – 21/02/2014 – An appetite for inaction

I woke this morning with one small problem, breathing. For once this has little to do with my COPD, this is the fault of yet another cold that Adam caught and of course, means I then catch it as well. My head felt like it had been……

 

 

 

 

 

Disabled by people

It doesn’t matter how much they love us, or we love them, it is inevitable that at some point in any relationships, one or both will do something to hurt the feelings or the other. Add in chronic illness and it’s not only inevitable, it is unavoidable. There could be loads of reasons as to why this happens, but what matters the most is that it’s dealt with and we all move on. The reason that I have heard the most puts the onus on us, the ones who are ill, as we are supposed to become more emotionally sensitive, to the actions of other. Although there may be some truth in this, and undoubtedly, when you are in increased pain, things are said that probably shouldn’t be, just ask anyone who has had a baby about that one, but I think it actually goes a lot deeper, and mainly in the opposite direction. There is one undoubted fact, people in general, don’t know how to act around or interact with, those who are chronically ill or those who are disabled. For some reason, that I can’t put my finger on, other than a total lack of understanding or applied thought, they feel they have to act differently and totally miss the most important fact, we are still people, the people we have always been.

Adam and I have only been together for 2 years longer than I have been diagnosed with PRMS. In the 14 years since then, I am sure that almost daily we have annoyed each other almost equally, but clearly, I this post isn’t about who is hogging the remote control today. When you suddenly become ill in the eyes of others, which is what happens the second that you get a diagnosis, it subtly changes ever single conversation or act, from that second on. Most of it is well-intentioned and often quite sweet and helpful, but occasionally, it makes you want to scream. Normally, when you actually do, they are totally lost and look at you as though you have fallen off the Christmas tree, as they have no idea what the problem is, or there even was one. Which is exactly what happened the other evening just after, we had been to the kitchen to sort out my night time meds. For over a year now, Adam has now been responsible for all my meds. I have made so many mistakes, that I asked for his help, so I didn’t spend another night crying and unable to work out why I was in so much pain, simply because I had muddled up my meds yet again. Eight o’clock arrived and he jumped up picking up his boots that would have otherwise blocked me from getting to the door in my wheelchair. He danced around the living room shifting other things, that didn’t need touching, then he did this odd little body swerving act at speed so that he, could get to the kitchen first. Funnily enough, I can switch lights on and get into the room without out him preparing the whole journey for me. As I was entering the kitchen, he once more jumped out of what he thought was my way, then he did this odd act with the bottle of coke he was holding, as he thought that somehow he was once again in my way. The whole thing meant that I landed up running into the kitchen cabinet, which if he had just acted towards my presence as he would have done when I was on my feet, wouldn’t have happened. He has been doing this odd behaviour ever since I have been back in my wheelchair, and it annoys the hell out of me.

No matter how well intended these odd actions are, they came across to me, as highly patronising, rather than helpful. In fact, his desperation to help had once again made my life harder. His distracting behaviour meant I didn’t pay full attention to the line I was taking to enter the kitchen. Catching my wheels on the cabinet, meant I was caught and getting free, took ten times as much effort, than my normal gliding entrance would have. I know perfectly well that they aren’t intended that way, but that evening was the final straw and I simply had to tell him how I felt and ask him to stop it. I waited for a few minutes after we had returned to the living room, then made sure that I was relaxed and that my voice wasn’t going to come across in any other way than what it was, a genuine plea from the heart. Just as I expected, he wasn’t really aware of what he was doing, and especially not, of how it came across. He thought that he was just being helpful, trying to make my life easier as is his way.

Throughout nearly all the time I have been ill, it doesn’t matter whether you know the person, or if they are a total stranger, they all forget the most obvious thing, we are still capable people most of the time. Yes, if we are clearly in increased pain, or struggling, then help is more than appreciated. But when we are our “normal” selfs, the people who manage all day long, without someone dancing around in front of us preparing the ground we are about to travel on, all that is needed, is to treat us as humans. Our health may have stolen nearly everything from us, but that is the one thing it hasn’t touched, yet.

For some reason, once we are visibly ill, the world suddenly treats us totally differently. For many of us, it is the day that pick up a walking stick, that we first see the change in others. Suddenly they do nice things, things they wouldn’t have done for us before, like offering us a seat on the bus. Don’t get me wrong, that seat is truly appreciated, but they also start doing odd things, things that don’t quite make sense, other than we are no longer, quite human. Doors and chairs, I get, but light switches, moving furniture that’s not even in our way, doing things we are more than capable of doing without assistance, they may be thoughtful and nice, but day after day, week after week, we are slowly disabled by others. I felt exactly the same thing happening at work as I have at times with Adam, I have felt it when I was out on my own or even when others, people overcompensate. Our bodies are already making us slowly disabled, but it is people, who disable us even further and faster. All it takes is a quick question, “Do you need help with that?”. Some do ask, and I almost bet, they are the ones who have lived with a disabled person, or watched a grandparent, slowly go down hill. They are the people who understand that our independence isn’t just required, it’s vital.

When I spoke to Adam, I asked him quite simply, “Would you have done that if I were on my feet?”, his answer was, “No, I guess I wouldn’t.” Since when, I have been human again. For all of us, the time will come when every second of care will not just be nice, but needed, but our independence is vital, even if that independence is simply turning on a light by ourselves. I don’t think that wanting to be treated as a person, means that we are emotionally sensitive. If someone does explode or throw you a scowl when you rush across a room to open a door for them, put yourself in on their wheels, and think what your actions might have looked like to them. Oh and next time, just ask.

 

Please read my blog from 2 years ago today – 13/12/2013 – Image destroyer

Since Tuesday I have been meaning to call the doctors for a repeat prescription, I have been blaming my memory again for letting me down but when I called this morning and as soon as I heard the…..

 

 

What makes me disabled?

I thought yesterday would be the day where I started to make headway with my plans, it turned out the total opposite. The only positive thing I managed all day was to dye my hair. It is now a glorious glowing purple again and so curly I am beginning to really wonder what has happened to my hair follicles. I wrote a post a couple of years ago called “Crystal Tips and Alasdair”, a title that some of you might recognise from your childhood. I had suddenly discovered that my once completely straight hair was wavy and even edging on curly, two years on, and it is quite defiantly becoming more and more curly with each year. In my post, I had come up with a theory about hair possible turned curly with age. Well, you rarely see young women with curly hair, yet every second little grey, no, sorry I should say “little blue rinsed granny” has curls. It may just be me, but those big gentle waves from two years ago are getting tighter and tighter. Rather a bummer actually as I had this mad goal of getting all my hair well down past my hips, rather than just those extra long strands getting caught when I sit down, it would all be. If it going to keep getting more and more curly, well I’ll never get to that goal. I have to say that I’m not moaning in any way, it does look rather good.

I may have successfully managed to put the dye actually in my hair rather than all over both the kitchen and bathroom, but it was at the same time the messiest hair dying session so far. It really is getting harder and harder to achieve precision, I know Adam would be perfectly happy to help me, but each time he has tried he just hasn’t been able to get the speed element at all. Most dyes should be in contact with your hair for more than 30 minutes, but it requires 20 to turn the untreated hair to the desired colour. Therefore, you actually don’t have much more than 10 minutes to apply it all, even with a home dye that allows a bigger window of error. He just doesn’t seem able to do it any faster than ten minutes per strand. My hair would be totally fired beyond repair if he was the person who always applied it. I used to be totally obsessive about not having roots that showed, it was a pet hate of mine, especially as time passed and my number of grey hairs just kept growing. Being housebound seemed to break that one into tiny pieces. I don’t think I died it at all for the first 3 years. Since then, if it gets done twice a year, well it’s doing well. There is something about not being seen by outsiders that have changed my behaviour, which I don’t really get. I was the kind of person who even if I wasn’t going out that day, I still applied a fine layer of makeup, mascara and eyeliner, these days I do none. It is oddly liberating, but I know who’s fault that past behaviour was, it was my mothers. She used to say, you never know when the doorbell will ring, she was right, but does it really matter? Maybe not, but I still don’t want my hair fried. It is another one of those things that I need to work on sorting out before I suddenly find myself totally unable to do, I need to find a hairdresser who will come to my home.

There is something so important about holding onto all those tiny strands of independence. I even found myself when I started looking at containers for me to transport liquids in during the day when Adam wasn’t here to help, that I could fill myself. It took time for me to realise this, but I am glad that I did. I know without a doubt if I bought 6 or so small bottles, that Adam would happily fill them and they could just sit in the fridge to be used and refilled by him when he was next in the kitchen. Independence means I want to be able to go to the kitchen, where I haven’t even checked yet is, if I can get the bottle out of the fridge door or not? Then I want to fill up whatever the container is by myself from a 2lt bottle, on a counter which might be too high to reach with ease from a wheelchair, put the bottle away again, fix the top onto the container so it doesn’t spill on the way back here, so I can then pour into my glass. Independence stinks, as it pushes you into doing things that are clearly complicated and difficult without thought. It stops you from being logical in any way what so ever, how on earth am I going to manage that without spilling stuff all over the place. Working all that out showed me that my trip around the house the other day didn’t even scratch the surface. I need to repeat it and actually perform every task I can think of that I do daily, not just say well I can do it if…, but actually do it and note where it goes wrong and how to fix it. Then I can sit and look at what independence is possible and where I will just have to swallow my pride and accept it has to be done another way.

You wouldn’t think that doing something so mundane as fetching a drink, can actually be important to do ourselves. If you think about it, though, fetching a drink ourselves is probably one of the very first so-called grown up things we ever get to do ourselves as children. I can still remember the pride on Teressa’s face the first time I allowed her to not only fetch a drink for her but also for her brother. She got to do that long before anything else and it clearly made her feel grown up and independent, disability slow strips them all away, one by one. I used to wonder where the point was that you ceased to be able-bodied, as I have never seen a definition of what able-bodied is. I’ve seen loads as to what disabled is, but able, never. Everyone assumes they know, it’s one of those things that I know without doubt if you stopped people in the street and asked them, most would look at you blank and start to umm and aah, some might actually answer “that’s a good question”. I wouldn’t be able to give a succinct answer and I’m the one asking the question. Even when I searched it on Google many of the dictionary explanations could also be applied to many people who are disabled, especially those who are Olympians. Able-bodied and disabled clearly aren’t definable, yet we all put such importance on them both, when we don’t even truly know which is which. Does the quality of what I write show that I am disabled, if I were sat on a normal seat beside when you asked that question in the street, would they all point at me and say “She is not able-bodied, in fact, she’s disabled”. I doubt it. Yet, so much of society sees me that way. To me, the biggest disability I have, is the loss of my independence, not the physical and mental problems I live with.

Clearly I need to get the wheelchair out of the cupboard again for another test drive. This time it has to be done with a different question, not the physical layout of our home, but the activities within it and how to preserve as much of my independence as possible. It is all too easy to say “well Adam can do this or that to help”, I am sure Adam can and would without a grumble, but why should he do anything when I can. The importance of my independence isn’t the only issue here, there is also the issue of Adam independence and his right to a life as well. The time will arrive soon enough that his life will be taken over by mine, but it doesn’t need to happen sooner than necessary.

Please read my post from 2 years ago – 30/08/2015 –¬†PC, what PC?

I am getting so far ahead of myself, telling myself every few minutes that that is it I have everything back in place, a few minutes later I find once more I’m not. At this minute my beloved PC is only partially working as it should, there is still so much more to do and I just want it done. The last few days have been total hell, I really am not……

Social impact

I know the other day I gave a brief over view of how the interview went, but there was something I didn’t mention, something that I found fascinating and I guess showed me something I had totally forgotten. At certain points when we were talking I spotted and heard reactions from Sophie that I didn’t truly expect. It has been such a long time since I spoke to someone face to face who isn’t from a medical background, or hasn’t known me through out this process, about how I live, my health and how I cope, that I had totally forgotten how different it is to the rest of the world. I can only guess that what I saw is exactly how others who read my blog who don’t have a chronic illness will be reacting as they read, just knowing that is kind of odd to me. It doesn’t matter what happens to us in life we all settle into feeling that our lives are normal and that everyone knows, understands and feels the same way. Seeing someone being shocked or wincing in reaction to what you say, suddenly makes the whole thing just that bit different.

I have been so cut off from outside reactions for such a long time now, that seeing them a new meant that just a few left an impact that I think in some ways I needed. Don’t get me wrong Sophie did nothing and said nothing that hurt me in anyway, I still remember all to clearly how the majority of the outside world treated me through different phases of my illness. Most were great, but all to often I saw that glimpse of pity, occasionally disbelief and once or twice revulsion. I haven’t seen any of that for 7 years, for 7 years I have had the glorious feeling of being normal and allowed to just be me, without reactions other than those we all get, because we are alive and share our lives with other people. I know that I have spoken before about reactions to me pre walking stick, post stick, pre wheelchair and post chair, the every day and the exceptional, but I missed the subtle and the constant changes that grow over time and you don’t even notice. That 7 year gap and Sophie being a total stranger, well it made me notice again how people react without even knowing it. Sophie of course fell into the subtle sector, she is after all a professional interviewer, they are trained and learn not to show things the way most people do, but still things slipped through, even through there were times when she actually pushed a reaction, to get me to react, or possibly to fain the reaction she thought those listening would have, I still saw enough to bring back memories.

One of the things that I didn’t recognise fully until recently and to me explains quite a lot was how my appearance has changed over the years. I went through a spell of being totally outrageous, not just in my appearance but also in my behaviour, it was almost as though I was goading the world to react. 90% of it was just me, I loved it, I loved creating new me’s over and over, refusing to be held by the rules of respectability that I had been confined in from birth through to when I left my first husband. The other 10%, well it was my way of covering up, of hiding. I remember having what I now know was a relapse, I had trouble with my bladder and my walking, plus simple exhaustion that getting a rigged up to go out, was just too much, but I had to get on with life. So out went all the buttons and bows, the tight corsetry, all the hooks and eyes and poppers, in came Velcro, slides, pre-bundled hair pieces attached to combs and threaded with beads and ribbons. Covering my simple pull on clothes and adding that ‘je ne sais quoi’ was a long cloak speckled with sparkly cheep brooches and a fancy walking stick, I could cover up both problems to some extent. I preferred to be perceived as eccentric rather than a drunk, which is how most people explain someone who can’t walk in a straight line, the stick helped to guide me and cloak, well it covered any accident that I couldn’t conceal any other way. I was covered in tattoos, piercings, hair extensions in mad colours, you name it I tried it and in 1991, I was pretty unique, hiding not in plain sight but in exaggerated sight worked for me. I visually joined society because of work, I had to be more restrained and more business like, but still I kept what cover I could, diagnosis came once my MS was progressive and unhideable. Once I had the explanation, I became more and more average in my appearance, partly because I didn’t have the energy or the dexterity required to create detailed clothing and so on, but mainly because I didn’t need to be exuberantly eccentric any longer, I could be like anyone else when I wanted, just ill.

People reactions effect us all more than we know, I haven’t seen them for so long that I guess I had stopped feeling them or even thinking about them. Sophie’s arrival woke me up to the facts that my life is so different, so unusual that anyone looking in couldn’t do anything else than show their feelings. People who have read my blog have at times left comments or tweeted me about how what they read had made them feel, often I read their messages I then dive back to the post concerned, I read my own words searching to find what triggered their response. I have become that isolated from others emotions that I just don’t expect it, I can’t make up my mind if that is a good thing or a bad one, would my writing change if I were constantly thinking about how would this or that effect my readers, I expect it would, but Sophie entering my life, like everyone we meet has added something into my thought process. Most of us never see or notice the effect of one person who they spend a couple of hours with, has on their life and like all those people in time we forget they even made us think about anything, but it’s there, we can’t undo it. For 7 years those tiny influences have been truly tiny, counted in minutes not hours and all have been with the NHS, I enjoyed our encounter, but I couldn’t do it every day, the impact is still here, the recovery still not complete.

Read my blog from 2 years ago today – 19/08/12 – Listening but unable to oblige > http://bit.ly/PvDxGd

Missing what’s important

I am waiting to hear from Teressa as to what she is planning for this weekend, I don’t actually know when she will be here for us to meet John. I know he was due to land at Heathrow at 6am today, so I doubt after 8 months apart if I will hear anything from them at all today. Their plans are to hire a car tomorrow and drive up to Scotland arriving sometime tomorrow at her step brothers in Dunbarton where they are staying until after the wedding. I would expect her to be here on either Sunday or Monday as they have a lot still to organise for the wedding on Thursday. I also know that one of the reasons that they have chosen to travel by car is it will give John a chance to see a little more of the country than you actually see from a train. Also with the freedom to go where they want, Teressa wants to take him on a tour of her childhood, from Rhu were we moved to when she was 3, through to where she was living prior to her Father taking her to New Zealand. Because I know she has so much to do I don’t expect to see her more than once on this visit to Scotland, they aren’t having a real honeymoon as with the cost of getting John here, the wedding and all the lawyers fees

I still can’t help feeling that I should be able to help her more with the setting up of her knew life, if I had still been working it wouldn’t have been a question but finding yourself, not just financially but physically unable assist in any other way than to give her my love and wish them the happiness they deserve. These are the times when disability really shows it face, day to day it is just there, just something that I live with but when big occasions appear, well that is when it really affects you. I can deal with watching the actual ceremony on line, but what I miss is all the mother of the bride stuff, the getting her ready on the morning, the rushing around before searching for the little things that always manage to vanish no matter how well it was all planned. The laughter and love that goes with all those small things that build the great memories of life. These are the times that I feel locked in and lost to life.

When people think of living a disabled life they don’t think of these moments. No matter how well a building is built, how good the ramps or the lifts, if you can’t actually get to it in the first place, it just doesn’t matter. The day to day difficulties all have solutions, there are always ways of managing and coping, they just have to be found, and even then as time continues if there are things you have to give up on, well eventually they don’t really matter. Then up pops a major milestone, one of those life changing days that we mark, celebrate and look forward to. It is then that you suddenly realise just how much you are disabled. It’s mad I know I have been disabled for years, and I have found a way through every stage, adjusting and enjoying my life just as it is, I have accept it all. Teressa wedding has suddenly made me wake up again to just how disabled my life is. I think I knew when the first wedding invitation arrived, when the wedding was meant to be in January, that it was effecting me in an odd way. I remember looking at it, appreciating the humor of it and feeling like there was a cavern the size of a double decker bus inside me. That cavern is still there and there is no way of filling it, I can’t be part of her day because my health has me trapped.

I’m happy for her and I so want her day to be the best that it can be, I’m just so terribly aware that I won’t be there. That is what disabled means, missing the big things in life.