Second class or lower

Sometimes, it is good to stop, to take a little time to look at yourself, through the eyes of others. It is something I have tried to do throughout my life, but I think, I have reached the point, where I really have to stop doing it. It wouldn’t be a problem if the world understood what living with a chronic illness really means. Today is a perfect example. Today is pancake day, that means I have to spend a large part of it, making my Psyllium pancakes, essential to keeping my internal systems working. I have laid out before the work that it takes, the time that it takes and just how exhausting the whole process is to me. Trust me, this is probably the day in my current life, that has to be carried out frequently, that I hate. Through the eyes of others, it is one of those so what situations, yes, it takes a little time, and some work but anyone can do it, just get on with it. Through their eyes, I am just being lazy. That is the problem when you live with an invisible illness. It quite honestly doesn’t matter which one, if your illness doesn’t have you looking ill, drawn and haggard, then there is nothing wrong.

Even right now, if I let someone, which I normally don’t, to take a photo of me, apart from the wheelchair, I look fine. The fact that I can produce a daily blog, send out tweets and still be part of the world, just all adds up in the eyes of some, to my not being ill. Yes, I can see that. I can see it with ease and it worries me. It wouldn’t have worried me 30, 40 years ago, then it didn’t matter how you looked, if you were signed off by a doctor, who said you were not fit to work, the majority of people accepted it. There were a handful, as there always are, who would look at you quizzically, but they were the minority. What happened to this world, what changed in this world that means being ill, seriously ill, diagnosed with conditions that are killing you, that the majority now will question it? Worse still, our UK government even now question it. I clearly started questioning it a long time ago, as you will have seen from the picture I placed at the top of my introduction post, but something has changed out there, something has made the general public cynical about the whole subject of ill health.

Clearly, I don’t know what the situation is outside the UK, and my thoughts are being formed by what I see on the TV. What is coming across from the news, documentaries and other programs is a perception that we are all at it, we’re scammers who deserve to have our benefits taken from us, and that we should get off our backsides, and find a job. For that, I do to some extent blame our UK government. Their stance and treatment of the chronically ill is shameful. If a doctor has said this or that is wrong with a person, no one has the right, to question that fact and declare them fit for work. But I am not here to shout about politics, as I said, I see that as a factor, but that’s all. I actually think that the real problem is once again down to the media. I mentioned the other day that I was sat listening to a show on health. It was discussing all sort of things, from diet to genetics, it is the type of show that I watch frequently. I think that they are a large part of the issue, as they give the impression, that the majority of illnesses are now curable. Along with the amount of research, that is being declared almost daily as the new miracle cure, the impression is being fed to the masses that once again, the medical world has the answer for everything.

If you are a person, like the majority, who has had nothing to do with anyone with a chronic illness, other than those of old age, that Granny or Grandpa had, I can see where this impression is coming from. 40 years ago, no one heard any of the things that are now discussed freely on the TV. All they heard was what the individual told them, and people were more trusting. If someone said “I have MS”, they only thing they might ask, is “What is that?”. These days the names of conditions are banded about daily, but what they don’t say, is what it means to live with that condition, beyond the names of the symptoms. Hearing about different conditions is a double edged sword. On one hand, it raises the profile, which might be good, but on the other, it makes even the rarest conditions, suddenly mainstream, just like a cough or a cold. If that condition is mentioned alongside a possible cure, the “possible” is forgotten and the impression that remains is that all version and variable of that condition are curable, even when they’re not. I know that one well, my form of MS, PRMS doesn’t even have one single medication that has the slightest effect on it. Yet other forms of MS can find great benefits from an array of different drugs and MS isn’t the only condition this is true for.

Horrifically, on the news today, I heard that the rate of attacks and abuse towards the disabled is rising. Just as it is rising, so is the rates of discrimination towards us as well. Those are the worst end of it, but it feels as though, it is in line with the general attitude towards those who are ill and that we should just be getting on with earning a living and not taking from the state, regardless how ill we are. All that was part of what was behind my starting to write and to be on Twitter, but in the three years that I have been doing all this, it somehow feels as though things are worse out there than they were three years ago. I can’t put an exact date on it, but without a doubt, this change started somewhere in the 80’s and it’s growth isn’t slowing down. Don’t get me wrong, there are some wonderful people out there, people who are genuinely caring and understanding, but not as many as there once were. How we turn this around, put the brakes on and get the truth of not just the odd individual but the masses out there, I don’t know.

From time to time, the soap opera’s will introduce a character who has some illness, and they compact their story into a few short months. The most recent I can think of was a story line on MND. At first, it was well done, it showed the main symptoms that were visual, but, the biggest problem was the person they chose to actually have the disease. He was the nastiest, most unlikable person you could think of. His becoming ill was seen by the majority of those in the storyline as deserved. As though he was getting what was due to him. To me, this didn’t help our situation at all. Even his death was treated without respect and he is right now, hidden inside a wall. What could have been a wonderful opportunity to really show the suffering and pain, the effect of a terminal illness on everyone, not just the patient, was lost. It landed up as more a moral tail, be a nasty person and this is what will happen to you. Not helpful in any way.

I know the world is full of things that just don’t get the time and attention required to be shown in true depth to everyone. That is why I chose not to use my conditions as my pivot, but the whole spectrum of chronic illness. I don’t know how to change the world, but somehow, we have to put the brakes on, stop the decline in how we are treated, thought of and spoken about. None of us asked to be ill, none of us would choose this life. To choose it would be madness as somehow at some point we diminish, we become second class citizens and in some people’s eyes even lower. Who would choose that?

 

Please read my blog from 2 years ago today – 27/01/2014 – Being you

If anyone ever wanted proof that I am not the sort of woman who stares for ever at herself in a mirror, well here it is. Following my post of yesterday I stopped and actually looked at my face in the mirror, really looked and…….

 

 

 

 

 

 

 

Every solution breeds a problem

For the first time since I sat in my wheelchair several weeks ago, I actually abandoned it yesterday. I had just been back and forward to the kitchen three times, the first planned, the second two, to fetch what I had forgotten. On the final time, I climbed out of my chair and was about to sit back down here. My eyes scanned the desk as I was lowering myself with the aid of my desk, when I realised, I hadn’t been to the fridge to pick up a drink. I gave up on the lowering and slammed down on my chair, my head hanging low and so angry, I wanted to scream. Once more, I was going to have to fight with my arms, which had complained through every turn of my wheels, on my last trip. Here I was, with no other option, but to return to the kitchen and to go through all of that again, but, I did have an option, I could walk. In some ways, I am really surprised that I haven’t taken that option before. I still have legs, yes their weak and they are unreliable, but they are still here. So I did it. I walked. Through every step, I could feel myself shaking from my toes, right up to my hands, but it was still faster and it didn’t hurt my arms. I had walked there and back with my hand dragging across the wall and grasping at anything, I thought, would hold my weight if my legs failed. I have to admit, that the relief when I was once more sat here, was huge. All I could hear going around and around in my head, were questions, “What would I have said to Adam if I had fallen?”, “How would I explain the fact I had left my chair and stupidly walked all that way?”, “What on earth had I been thinking?”

It isn’t something I am going to do again in a hurry. Somehow, I think I actually needed to do it. Not just to fetch the drink, but to remind me, why I am now once again on wheels. Changing your life, from ambulatory to assisted by a wheelchair, is a huge thing to do. The idea that you just sit down and totally forget, that your legs are even there, would be madness. I can, as far as the physical mechanism of walking goes, still actually walk. I can stand up, take a few steps in safe areas, but the whole idea that it is safe to do so over greater distances, would be the greatest form of insanity, I could lay claim to. Trust me, life in a wheelchair may be safer, but it is a million miles from easier, faster or even enjoyable. At first, it was all a challenge. Dealing with all the sharp turns and obstacles that seemed to actually jump out in front of me from nowhere. I learned, I grew more confident and slowly, I became used to it. At about that very point, my arms and hands stopped just being annoyed at me and took up a stance, of pure objection to the whole thing. Mornings have usually been not to bad, but as the day progresses, there is less and less cooperation. By the evening, it isn’t just when I am moving around, but when I am doing totally nothing, I am in pain from my neck, across my shoulders, and down into my fingertips. Worst of all, it is no longer just my thumbs that are dislocating, I now have three more fingers, that have discovered the same trick. None of them jump out totally, but enough, trust me to cause extreme pain and to have me grabbing and pushing them back to a normal location as fast as possible. If anyone has the cure or even something that would help, please tell me it. It so often feels now, that what seems to be the answer for one problem, turns out to be just another problem. Life has reached a point where nothing is a simple straight forward process and I honestly, can’t see it getting any simpler, anytime soon.

It isn’t just pain that my chair is causing. I have issues at night because I can’t manage to move quickly when I am half asleep, without crashing into things, usually causing myself more damage than anything in the house. I need speed, because I normally wake, out of the need to get to the loo. No, I don’t want a commode in the bedroom, not for a long time to come. My chair won’t fit into the far end of the bathroom. There simply isn’t enough space, although that wasn’t a problem two months ago, it is now. So, I am now considering grab bars and rails, to assist me. A step, I’ve resisted for so long, that it somehow feel ironic, that I’m thinking about them now, thanks to another aid. Again, thanks to my chair, having a shower seems like a much more complex and annoying process, than ever before. Clearly, standing in the middle of the bathroom, to get dry is just too dangerous. If my legs won’t hold me when walking, or even just standing for a short while, the danger when twisting, standing on one foot, or any of the other odd positions, we stand in when getting dry, is pure danger. Bringing my chair in with me, yes, it means I can sit down, but because that means it has to be brought in backwards, once in, I can’t get to the loo. It also makes getting dry, one, huge problem. The towel catches on everything, wheels, brakes, armrests, footrest, you name it, it will catch. No matter what system I use, I always seem to land up with damp spots, that I don’t find until I am trying to get dressed. I could ask Adam to help me, but that holds two problems. First, I don’t want Adam to be drying me and second, it’s another idea that I have fought against for years.

My wheelchair may well have removed the danger of my landing on the floor, but it has brought with it, a range, far bigger than just those I have listed, of problems that I now have to fix. If, I hadn’t stood up yesterday; walking out of total frustration; with the result that it had; quite honestly; at this point, I would be thinking of returning it to its cupboard. I need it, but it’s not making life easier, in any way I can think of. Actually, I have to take that back. I know that all I have to do is read back to the posts I wrote when I first set off on my newest form of life. It did have a huge positive impact, and I have to remember that. It isn’t so much the chair, it is life has so much clutter attached and moving in a rather large and new piece, isn’t going to be easy for anyone. If I am to tell the truth, none of us want our lives altered, by anyone or anything. Life, no matter how scary, is most enjoyable when we keep it simple. We don’t like change, and we definitely don’t like change that means, even more change, is required. I know myself, that it has more to do with attitude and desire, than reality. We see problems, that aren’t really problems at all, they’re just more change and that’s the real issue. If I can find grab rails that don’t scream hospital at me, well I could live with them. The rest is much harder, but solutions must be there somewhere, ones that aren’t just going to lead to even more problems once in place. The real problem is, is it doesn’t matter how far you try to plan into the future, when your fighting against an illness, that just doesn’t stand still. As I said, two months ago, rails weren’t required, they’re need though, is getting closer. Ouch! that has just put something into my head, something I hadn’t thought of, until this very second. Are all those problems, that I’m blaming on my chair, actually just new problems, ones that would have appeared, with or without it? Can I scream now, please, pretty please?

It’s a horrid thought that new problems will appear every two months, maybe, I’ve just reached that phase. Could my health really be moving that fast? Is that really why, I am feeling suffocated by problems? When I think about it, it kind of makes sense, but so did my first line of attack. I always knew that as time went on, that I was going to be doing more and more problem solving, just to make life livable. If I am going to remain independent, I know that life will have to change, systems revised and problems solved. Stupidly, I started putting them off. My brain is degenerating just as my body is. Much of what I am facing now, where problems that I always knew, would rear their heads, but I was doing the normal human act, of putting it off. Once, no problem phased me, in fact, I embraced them and loved them. There was nothing like a new challenge, just to keep you going. That, though, is now my main problem, being human, it has forced me into a world where mentally I am playing catch up, instead of being one step ahead, as I once always was.

 

Please read my blog from 2 years ago today – 18/11/2013 – Caught in nowhere to go

If I hadn’t spent so many years living with pain I think that at some point over the weekend I would have been at the local A&E department. My diaphragm is still giving me no peace, but it has made me realise just how…..

Perception changes

There are times that you find yourself sitting in disbelief unable to take in what you are hearing. The person talking to you has been a friend for years, but they in just a few words have blown your perception of them right out of the water. A friend of mine is now amongst the millions of others out there looking for work, a few days ago I sent him my CV to look at so he could build one for himself, what returned to me was basically my CV with of course his work history. This morning he phoned again and I mentioned that he would need to write a cover latter for all the websites, he had no idea what I was talking about so I have once again sent him mine, he read it and then asked but what would he could put into his. I explained again the concept of what a cover letter is and he said it would take him a couple of days and he would send it to me for approval. This is a man in his 40’s, not a school leaver or a kid, an adult who has worked all his life and is totally lost on how to do two simple things the biggest being how to sell himself in words, a very surprising thing to hear from someone who has been a field salesman for most of his life. We all build up these images of those we know and love, but all to often the day arrives when something like this happens. I don’t think any less of him, but I can’t help feeling I miss judged him somewhere along the line. A real case of not him but me, he hasn’t changed but I am now disappointing with myself and my ability to read others.

Like it or not we all spend our lives acting out the role we think others expect to see, and how they interpret that, depends on their experience not just of you but of everyone they have ever met. Illness is no different, I still act out the role of Pamela, the one that is know by Adam and my friends and family, but I know I have changed even more than I think I show to anyone. For many years I did something that I know now was really wrong of me to do, I shut Adam out of the medical side of everything that I was going through. Once we had the diagnosis, I never again until I was totally unable to get there without his help, asked or allowed him to come to any appointment with me. I felt that if he wasn’t there he wasn’t going to be pulled down by what was discussed, after each visit I glossed it up and altered the importance and outcome. Through all those years I tried my hardest to cover it all up, to be fitter and healthier than I really was, and he played the game too. Yes he did know, not all of it, but he frequently has said he had guessed or seen through the act. We were both playing with the perception of each other, but it was how I, or really we, thought each other wanted things to be.

Even now I still find myself covering the truth with a smile, but telling him every few minutes what is happening, how I feel or where the pain is, achieves nothing, but I no longer hide the big things. It is strangely hard though to talk about the failing of your bladder and bowels with your husband, it feels so wrong. If there was ever a subject that was designed to shatter someones perception of another that is it. The day my bladder failed me totally and left me struggling to get to the loo unable to stop the flow, while he was in the house, was bad enough. To come out of the bathroom to find him cleaning up after me, well that still makes me wish I could vanish. Yes it happens, and yes it will happen again and again in the future, those a physical facts, the emotional ones rip the inside out of you.

The most painful things about chronic progressive illness isn’t the physical pain that wrecks your body, or the true restrictions it forces on to you and those who love you, it is the destruction of our and others perceptions. Who we are hasn’t changed, but our roles within our relationships change continually, as it does for everyone. But gradually on top of that, even I no longer see the fit and capable person I had been my entire life, my perception of me and others perception of me, is now that of someone who needs help continually, who is ill and who will never again be well. All the positivity and spin in the world can not change those facts, and their implications, yes I can still do a hell of a lot of things, but they are being nibbled a way at it constantly.

Disabled Different?

John went back to the US last night, I think it was a very long day for all of us as we all felt helpless. Teressa is devastated, something that is clear by her pleas to her friends across the world on Facebook. Due to her traveling life she has gained a strength and ability to cope, with long distance friendships which right now I am glad off. I normally just read her Facebook as I see it as a link but one that in normal times she doesn’t need her mother getting involved in, but I felt a need to add to it for the first time yesterday and did and again this morning. Some of you will have noted the unusual spelling of her first name, not the spelling that I gave her but one that appeared in her late teens and has remained and I respected as it is her choice. Today she appealed to her friends as she has already had problems with the difference between her official documents and some bills and letters, I couldn’t resist…. ‘As the person who gave you the name I think you should go back to the original not Teressa, but “TERESA_JANE”!’ I know she doesn’t like the double barrel first name so I couldn’t resist it, knowing it would make her blush with everyone else now knowing, I did go on to give advice and add that it could have been worse I could have told the world her middle names as well. She knows my sense of humor well and I just wanted to lighten her mood for a minute. It will now be months until the two of them can be together and my heart goes out to John as in someways he is in the worse position, no job, no home and no Teressa, she at lease has the other two already and starts work on Monday so it will help to keep her busy.

On my other blog today I posted a very short piece simply called ‘Different?’, it is part of my ‘Dazzle’ posts but as I was writing my brain was running thorough instances in my life were my own experience and feelings linked, unfortunately there are too many for my to put into any single post but two made me want to add them in here as they may well have meaning to you. I have always in my teenage years and since I left my first husband preferred a more dramatic and individual style, in the late 80’s I started having tattoos done,this was long before the ‘Beckham era’ so not done, especially by women. All my tattoos to this day are easy to hide should I wish to but they are extensive, both arms from the elbow up, my full back, shoulders and two panels at the front and a few on my legs, I hadn’t actually completed them when my MS stepped in and change the nerve sensations increasing hugely the pain, I couldn’t predict if I would manage to have 2hrs or just 2mins of work done. I was and ma proud of them and went out most of the time with them on display, my hair has varied in length and style but again dramatic in all my choices, of colour and accessories, all combined by strong dramatic make-up, 53 earrings in one ear and a nose piercing. Being tall for a Scot at 5ft 9ins and dressed in black in clothes I never saw anyone else wear I was, when I walked down the street I was to say the least obvious, and the reactions varied wildly.

What got to me slightly was the change I saw in the winter when I went out covered-up to the summer. Winter yes there were reactions some stared a bit, others smiled, but in the Summer it was nuts. If all my tats as far as possible were on show and I added high heels people got out of my way, the path in front of me widened, as they physically moved as far away as the pavement would allow, many looking at me with a touch of fear. I never asked what was wrong with them and it is only my guess but I felt as though they thought that any second I might draw a knife and attack them. Why? I can only think of the way the media portrayed anyone with tattoos as a monster, who would kill you as soon as look at you. I can also still remember the change in people when I spoke and they discover that I have what most call and educated Scot accent, I went to private school and had elocution lessons so I sound a bit posh if you like to call it that.

By the time my illness took over and change my physical movement I was aware again a of a change, at first the assumption I was drunk and the disgusted looks I received. When I gave in to the walking stick I was treated probably in the most normal way regardless of my other appearance that I have ever had, but then came the wheelchair and with it pity, at that point I was working in an office so Monday to Friday pity followed me around, at the weekend I dressed as me and suddenly I got respect, genuine help and assistance and for once as a human being.

I have put a lot of thought into why? What causes all those reactions to just one person and all I can come up with is social acceptance of difference. I am the same person but I have a much wider view of what the world sees and how they react. Being disabled and sat in a wheelchair in a normal long black coat is an accepted look but the chair made me into a person who received pity and I hated. Anyone out there that uses a chair will have seen it and it hurts, you are a person who is sat down, a person with the same feelings and abilities as anyone else, just not able to walk. Put me in the same chair with outrageous clothes and tattoos showing to the world and I am courageous, strong and to be admired and helped with a smile. Believe me you don’t have to hear the words from your helper the whole of their feeling show on their face.

I have taken for most of my adult life the looks, the perceptions, the feelings that fall on me and passed all of them off with my head held high, but it doesn’t mean that inside there isn’t pain, there isn’t hurt and there isn’t disbelief that simply your appearance is enough for the world to judge. I am not going to change the world and neither are you but if you are reading this and you too have an illness that makes you different, well my advice is if you have ever had a hankering to wear thigh boots, mini skirt and mad make-up, do it now, it works, it works to your advantage when you least want pity and false help.

How are you?

It is going to be one of those days, I can see that already and it is only 10am. The District Nurse phoned to check I was OK and if I wanted her to come out and see me, I answered all her questions and said that I was fine, Sods Law they call it and I’m there again. I had been off the phone for maybe 15 mins and I started throwing up again, which was one of the reasons she called. The Doctor wasn’t happy about the fact I was sick on Saturday night and he didn’t think it was food poisoning and sent me out a prescription for some anti sick pills. I have had spells of nausea for years so I think nothing of them now, but I admitted to the Doctor they were there, you know that way when someone, even a Doctor who is used to hiding things, seems concerned about something you don’t, well I got that feeling from him. I’m not saying there is something bad wrong, so don’t think that, what it is thought is an example of something I think is nothing but others don’t. I thought it was so much of a nothing that I only mentioned it when asked and he says it as something requiring treating. I hardly brought anything up just now, mainly liquid so I am hoping that my meds are still safe, I suppose I will find out soon.

The longer you live with an condition the more you become used to having it, I know that many many people couldn’t understand how despite being clearly ill, in a wheelchair and at one point taking my food through a feeding tube for 3yrs, I still went to work daily. Near the end of that period I was only going in for 2 days a week, working from home the rest of the time. I wasn’t being brave or putting on a British stiff-upper-lip I was just getting on with things. Even when my health forced me into being housebound, for the next three and a half years I still worked full time, sat here are my PC producing everything I was asked to and more, I only stopped when like many others in the world just now I was made redundant. Chronic illness slowly creeps forward, taking tiny steps all the time, with the occasional huge jump that everyone sees, but you yourself and those that see you daily don’t see it. I can’t tell you with any confidence, any particular date when something started, anymore then you could tell me when the first grey hair appears or a wrinkle made it’s first mark, a time line is impossible. I was ill for many years before I was diagnosed and over those years I got used to having spells of illness and I had learned to keep going, probably helped by the fact that I was self employed and if I didn’t work I wouldn’t have been able to pay the bills or eat. I can only give a rough date to when my MS turned progressive and ironically that is because it was during one of my happiest spells in my life. I was newly married to Adam, my work was great and we had bought our first house, it wasn’t long after moving here that I demanded I wanted to know what was wrong, June 2001 I got the answer.

Strangely I still don’t see myself in any ways as disabled, I like most have a picture in my head of someone who had MS and what they can do and can’t do, and that isn’t me, from your eyes it may be, but not from mine. Different symptoms come and go, I vary as to the one that is most annoying and I think that is the crux when it come to being asked how I feel when talking to a Dr. With so many things wrong, but those things being there in my mind become listed as normal as they are there all the time, picking out what are the important one is hard. I could sit here and start at my feet and work up to the top of my head but I will still guarantee that I will miss loads of things, simply because they are now normal. I have to think a long way back in my life to gauge how you are feeling and I can’t even be sure if I would get it right then as I don’t have those dates. A rough one has been guessed at that I was 21 when it all started, 30yrs, find normal in there if you can, I can’t, it’s too long. Just to make it a touch harder remember my memory is also a little screwed up and finding within it, the information required on demand doesn’t always work.

Each day I just get on with things, not as I always have, but as always as much as I can do. Normal is today, just as it is everyday, don’t ask me how I am as you will get the answer I’m OK because that is what I am, I have no gauge left to me other than to match it against yesterday. Ask me how I am compared to 13 yrs ago as it was the year Adam and I married and my comparison would be lengthy.