The bubble doesn’t exist

It amazes me just how many people out there, are still living in the cosy world of, what should be, actually is. Almost daily, I still hear from someone who thinks that being disabled, is a comfy life, where we are well taken care of, and that our lives are as simple as not being disabled is. I think the one that I hear the most, fits around what the word “housebound” really means. Oddly, the majority of people seem to think that all it is is not getting out as much as they would like. I have even had people who have actually said things like “I’m just like you and I totally understand, I haven’t been out since last week”, or the other classic, “I hate not being able to get out and about by myself.” Sometimes, it’s hard to not get angry with them because, there are no grades of housebound, you either are or your not, just as there are no degrees of having a chronic illness or being disabled. Worst though are the ones who aren’t ill at all, the people who as I said, live in a comfy world where everything and everyone is totally taken care of. To some extent, I can see where their thinking comes from as I actually remember thinking just the same thing years ago. I was like everyone else in the UK, I was wearing blinkers, put there by the “Welfare State”.

Back in the 80’s and 90’s there was very much an image put out there, that no one ever suffered any more. That no one even struggled, as they were scooped up by the state and cradled, against the worst their health could do. I think it was a picture that actually grew from it’s very creation when the NHS, and the care systems, propaganda involved showing happy people smiling in wheelchairs, or well protected within a caring society. I thought, that the second you became so ill and you couldn’t work, that the state swung into action, caring for and taking care of, absolutely everything you could possibly need. We had all swallowed the propaganda, hook, line and sinker. It was an image that held fast right on into this century and if you believe what is on TV, only started to crumble when austerity started to bite. Wrong, it crumbled far sooner than that, I, in fact, wonder, if it ever truly existed. From my own life, I can site issue, after issue, that proves that Welfare State, never worked at all right back into the 70’s, and the NHS had holes, as big as a battleship throughout.  I can site my two sons, Jeffery and Christopher as just two painful and perfect examples. No one swept in to make their lives the way they should have been, and no one swept into repair the pain and damage that their lack of care actually caused. If you need further proof that the so-called “Welfare State” doesn’t work, well, there’s me.

It just goes to show the power that propaganda actually has. Right through to today, there are people, who think, that the state would spend money on something, like getting me, outside of my house, for a day. I’ve been here 8 years, I’ve seen doctors, nurses, specialist and social workers, not once has anyone, batted an eyelid over the fact, that I can’t get out of my home. Not one has even been surprised at how long it is that I have been here, or that no one comes to see me any longer because, this is the normal pattern, this is how it really works. There is and never has been the money to do all the things that people seem to think, should happen without question. Those current day pictures you see of happy people in wheelchairs, or being cared for in the way we believe people should be, have nothing to do with the “State” and everything to do with charity, or insurance payouts. If you want carers, if you need helpers, you have to pay for them. Yes, there is, if you are very lucky, a fund that will help, but the boxes to tick, the hoops to jump through, are huge but almost impossible to hit. The way that I see it is that I am happy, I can still cope with the life that I have, I would rather those who can’t cope, get the care that they need to live a better life. The day for me will come when I’m not coping, then I’ll try to claim my slice of the pie, but for now, I’m sweet enough as I am.

In a bubble gum world, no I wouldn’t be stuck in my flat, I’d either be living elsewhere, or there would be a way out of here. In a bubble gum world, I would have an electric wheelchair that fits into the restraints of my home and takes away the pain caused by the manual one. In the ultimate bubble gum world, I wouldn’t be ill at all. This isn’t a bubble gum world, so what I am going to do about it? I could make myself miserable, spend my days being angry at the world and life, or I can get on with it with a smile on my face. I choose the later. Oddly, I am allowed a choice, despite the fact that I didn’t have a say in any of the rest of it. It is the same for all of us, life boxes us in, it doesn’t matter what’s inside those boxes, be it our health, our job or our fears, we all have boxes piled up around us that stop us doing what we want. Some of those boxes can be removed, others can’t, that’s just the way life is. I could make a list as long as my arm of things that would make my life better, but no matter what is on that list, at the top of it is one unmovable object, my health. As I have said over and over that the only way to live is to accept those immovable objects and live the rest of your life.

The Welfare State hasn’t got the answers for us that we expected. They can’t cure our conditions, house us or care for us in the way we expected. In many ways, I don’t know why we ever expected it to be any different. I’ve learned that the hard way, but I honestly think that it’s time our country woke up, took their blinkers off and saw all the people who have become lost in a system that doesn’t even exist. There are millions of people out there who need our help, they are not being cared for, no one is helping them, they aren’t cared for and loved as I am by my husband, Adam. They are alone facing every problem of chronic illness brings, but without the support, of people who love them. It is not just the elderly who are isolated and alone. Far too many are standing back, thinking it’s not our problem, well it is, it is a problem for every single one of us who has a heart. It is a problem for all of you, for one in every twenty-five, so yes, the odds are high, that one day, you too will find yourselves, living just like me, like Adam, or them, alone and in pain in more ways than one.


Please read my blog from 2 years ago today – 04/12/2013 – Is it me or you?

Yesterday post set me off thinking during the afternoon, one small part of it kept going round and round in my head, how long is it since or have I ever had a body that was well? It’s actually probably is an……

Meeting aliens

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

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

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

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

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

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

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

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

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


I have just bought another sleep mask, when I woke this morning the redness on my nose was still clear to see, but on the good side, it isn’t so painful to the touch. To be honest I wouldn’t be surprised to see a bruise appearing, as that is how it feels, bruised. On the good side it gave me an excuse to try out some make-up I bought ages ago which I hadn’t used as I hadn’t taken the time to test it. I learned years ago that the first time of using something you have never used before, isn’t when you were going anywhere as it is bound to go wrong, so it has just sat there in a paper bag waiting. It is one of those powdered mineral based processes and I have to say it is amazingly good, just a touch of concealer and the red vanished totally, which did surprise me as I am one of those people who never believes what the advertisers say. It may sound odd but it is another of those things that I bought due to my health, I just don’t bother with make-up on a daily bases, only if I know if someone is coming here, or if I have to go the hospital do I add enough to feel comfortable. I was forced into looking for something new as all my make-up had dried out and died, buying the same again for it to just happen again sounded like a real waste of money, I needed something that couldn’t dry out, it had to be powder based and I found it.

There are so many silly little things like that, that you just don’t even think about when you become housebound, well why would you? But as time goes on, they just start to appear and you have to spend time searching for replacements or different ways of reaching the result you want, but one that will last, not curl up and leave you in the lurch. I remember when I had to make my first hospital visit after being housebound for 5 years, the appointment arrived and I suddenly realised I had nothing to wear. Clearly in that time thanks to my immobility my weight had increased and I was faced by a wardrobe full of clothes that simply didn’t fit. No one wants to have to spend money buying a totally new outfit for a couple of hospital visit and then would never be worn again, it’s not just cost restrictive, but it’s a complete waste of every tiny bit of it. My solution turned out to be truly cost effective. I searched on line for a some plain black pyjamas, made of ordinary every day materials, not silk or anything that might give them away as pyjamas. I found a set that looked when you added what they said was the house coat, very much like a casual trouser suit, add a coat and no one could guess their true identity. I have been wearing them ever since at home and I wore them when I went to the Dental hospital last month, not one person had given them a second look or said anything that I over heard as to what I was wearing.

I have found myself over and over wanting to clear out all my draws and my wardrobe of all the stuff I will never wear again. On the practical side it would free up some storage space which is much needed and it would also mean I could sell some of it and get back a bit of cash, but every time I think of doing it, I find something else to do instead. I have sat and thought about it a lot and the only reason I think that I don’t do it, is because in my head it would be like giving in to my illness. I know there isn’t the slightest chance of me either being able to wear those clothes again, or of my being able to make it out of the house whilst wearing them, yet I can’t let go of them. I keep telling myself that the time will come when I will be at ease with it, but that time just doesn’t fully appear. I suppose it must be a little like someone who is clearing our after someone has died, it is that final step, the last bit of saying goodbye and I have never been ready to do that. So I still have draws filled with underwear for some one with a size 10 figure, hanger after hanger holding black knitted mini dresses and pair after pair of long suede boots, all there, all untouched for nearly 8 years simply because I can’t take that final step and say that final goodbye to life I have no way back to. I know there is no rules about when or if these things need to be done, but on the logical side it really would make sense to let go, otherwise it will be eventually a job left for Adam to do.

There is a strange phenomenon that happens when you don’t see other people and your no longer part of a world that everyone but you knows, time stands still. Just as when you don’t see some one for several years, in your head they are as you last saw them, they haven’t changed in their appearance in any way, their fashion, their size and their age remain constant, until you see them again. Well the same happens when you become housebound, despite what I see on the TV, or how much news I watch, to me the world I know is set back nearly 8 years. The perfect example was when I was on my way home in the ambulance from the Dental hospital, I was shocked to be going under an entirely new motorway that now flies over part of Glasgow, when I had last been in that area of the city it hadn’t been there, but I knew from the news that it was there. Just like that motorway, my world is stuck for ever as it was when I closed my front door for the last time. The really odd bit is, so have I and Adam, yes I can see the changes, but in my head they don’t exist any more than any other change anywhere, the world to me has stopped and I can’t see it ever moving on again and even odder, there is a comfort in living in a time bubble.

I had never thought about it before, but that is possibly one of the reasons that life in a housebound world isn’t as bad as people expect it to be. We haven’t become housebound, we’re just on an extended weekend that never ends. Time is without doubt the hardest thing to hold onto, weeks and months pass me by without any real feeling of them being there at all, a good ground hog day if you like. I no longer think about what day, what time of day or anything else, outside my routine or where Adam is or what time he will be home, I drift through the hours untouched by them, I guess it is my brains way of staying sane, regardless of reality.


Please read my blog from 2 years ago today – 30/12/12 – Inside Connections 

I am happy to report that this is a brighter day at last! I feel today that smiling is allowed both on the outside and on the in, the last couple of days have just been really strange and I really don’t know why, I have theories, loads of theories, but……..