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……

The hierarchy of illness

My head is full of so many different things to write about this morning. I spent some time yesterday reading other people’s blogs and I came away with so many updates that I could make to various posts I made years ago. I know it is impossible, but I do try hard to not write about any topic I have already covered in a dedicated post. Clearly there will always be things that overlap but that is the point in writing daily, life and our opinions about it are always changing.

I woke this morning once more with a headache and the desperate need to go to the loo. I had already managed to return to sleep twice, by the time I knew that once more and my bladder would explode. It was early again, just 7:10 and I knew that I was losing more than an hours sleep, but with already having a thumping head, I also knew any more sleep wasn’t a good idea. All my life I have lived with this inability to go back to sleep once I have the knowledge that it is past 7 am. That I suppose was my mistake this morning, I looked at the clock, that knowledge was enough for me to say, bladder you win. Everything in life is always this complex mix of tiny pieces of knowledge joined together, yet we all have this habit of putting the blame on just one. That is a statement that is never truer than when it comes to our health. I for one have this habit of blaming everything on my PRMS. Granted it is the most serious of all of them, well until my COPD steps up a level it is. Yet, I rarely ever sit here thinking about could this be coming from this or that, in my head it has to be my PRMS. It wasn’t the first diagnosis, that was my Fibro and despite the fact they both affect my entire body, I have decided that my PRMS is the more major of the two, so it has to be in control. There is the most ridiculous concept I have come up with. I doubt that you will find it written anywhere that there is a hierarchy of illnesses. The idea that my Fibro doesn’t cause me pain somewhere because my PRMS got there first, or that my PRMS can muscle my Fibro out of somewhere like some kind of bully, is truly nuts. I just had this great image, of my Fibro wondering around inside me and meeting my PRMS face to face, taking a deep and reverential bow, before slowly backing away. I am not the only one who has created a hierarchy of illnesses and it is probably the place that I have picked it up from, the medical profession. In fact, without a doubt that is where I developed this beast of battling conditions, except mine is in my head, the medical profession have made it totally real.

I discovered a long time ago if I was speaking to either a nurse or a doctor and I said I had Fibro, there was a polite nod of their head. If I said I had PRMS, there was a sudden and clear expression of concern and some would even express their commiserations. It was the same when it came to me giving them a list of all the things I had been diagnosed with, nearly all got that nod, but my PRMS got their attention. I thought at first that that was because I had a rare condition, something they would get few opertunities to see and treat. Some, I am sure that was just it, but I also discovered that it changed my actual speed and type of treatments as well. I have come across many people with Fibro now who clearly suffer truly high levels of pain, but when I talk to most in this country, their treatment for this pain appears nothing but pitiful. I have never been, nor have I ever heard of anyone who has a dedicated Fibro nurse to turn to for help. I have two dedicated MS nurses. One who visits me at home once a year from the GP service in Glasgow and another who is fixed at the hospital. I also have direct contact into the community nursing service, something none of the Fibro patients I have spoken to have even heard of. The two conditions share a huge number of symptoms, they are both debilitating and painful conditions, which can at their worst leave you housebound or even bed bound. On the medical hierarchy, MS is clearly miles above Fibro.

I also came across it last month with the receptionist at my GP Practise. I called and asked to speak to the doctor because I was having problems breathing. The receptionist didn’t seem very interested and it was her that asked in her disinterested tone “Is it Asthma?”. I actually do have Asthma, and I have a sister and two nieces who in their homes have oxygen because their Asthma is counted as deadly. I answered the receptionist by correcting her and say it was my COPD. Suddenly she was interested, she even spoke faster and reassured me she would get the doctor to call me straight away. Another clear hierarchy, but with two conditions that are equally possible to be killed by in minutes. One of the blogs that I read yesterday also had a clear hierarchy created by the author, so no, I’m not going to link to it or even name the conditions, but it was that that made me think. There must be millions of people out there suffering daily with conditions that are totally life changing or even threatening but because they aren’t high on their own doctors, or the NHS hierarchy aren’t receiving the level of care that they should be. I also doubt it is restricted to the NHS either.

To me, it doesn’t matter which of my conditions it is that is causing me pain, or whether it is my Asthma or my COPD that is stopping me from breathing, it deserves the same speed and care of treatment. As odd as it might sound, I have been lucky to be diagnosed with two serious life threating conditions. Come what may, I am always treated with speed and care. I don’t think even the doctors can tell all of the time from which condition my problem stems from, but to cover their backs they treat me as though it belongs to the worse possible choice. I said I was lucky because clearly there are people out there who don’t get that care. Who aren’t on the strong painkillers they might need because their condition isn’t high enough up the list. In an odd way, I actually think that the old complaint of being seen as a condition and not a person needs to be changed. I think there is a case to be put forward, that maybe we need to be treated for our symptoms, not our conditions. Personally if I am in severe pain, I want that pain treated immediately. It doesn’t matter to me if that pain is coming from my Fibro, my PRMS or a broken leg, treat the pain, then look to the cause. I fear that there are people everywhere right now in pain that could be treated. In fact, I know there are.

The system in Glasgow is that once you have your diagnosis of MS, you only see the consultant once a year. Every time I went to the consultant, he changed my meds to help with the pain. It didn’t always help, if it did it didn’t last and I had a year of pain before seeing the person who could change it again. It was only 8 years ago that they eventually put me onto Morphine and asked my GP to work with me to find the right level. I had had years of increasing pain that went almost untreated. If it happened to me, I know it is happening right now to others. Illness is personal, it doesn’t matter what the condition is, what matters is how the person who has it, is actually coping with and reacting to it. I’m not just talking about pain either. I understand pain too well, so it is often the thing I focus on. I have developed the attitude that if it doesn’t hurt, I can deal with anything. Right or wrong, that is how I handle my health, but not everyone will. Others will find different symptoms as the ones that distress them the most and what that symptom is, doesn’t matter. If someone is living with anything that distresses them, it is a threat to their mental health. I am not suggesting that a splinter should be treated like a heart attack, but all chronic conditions should at least be given the respect required to make life better, not worse.

Please read my blog from 2 years ago – 07/08/2013 – Time to rest and revive

Yesterday the paper work from the company who asked me to make a video with them as part of the new site for people with COPD, I had already received them on PDF, I don’t know why, but I really hate PDF, it’s just one of those stupid things, I took a dislike to it when it was still in development and ……. https://livinginalimitedworld.com/2014/08/07/time-to-rest-revive-19070526/

The British way

Like the majority of people of my generation have formed the knowledge of life in other countries through the TV and movies, neither of which are truly known for their accuracy, unless it is a documentary, but even there you have to still do a great deal of reading between the lines. Being now truly part of the on line world, has shown me more and more what life is like for people who live with chronic illness all around the world. I have pieced together so many different stories and sifted the facts, to come up with one final conclusion, strangely the same one as I had before. It doesn’t matter what country you live in, your true “care”, comes down not to where, but to how much, how much money you have that is disposable. There is a miss conception abroad that once you are ill in the UK, everything is done for you, from your care to your home, well that isn’t actually the situation. Don’t get me wrong, yes our medical care is free and if you can no longer work, you don’t have to pay for the drugs you need unless they are really expensive. If they decide that the benefit of the drug, isn’t enough to make it worth while, even if that means extending someone’s life for possibly over a year, or longer, you will not get them from the NHS at all and have to either go without, or pay for them yourself. Unfortunately this is a growing issue, as so many of the new drugs appearing on the market are expensive as the companies need to make their cost back for their development, before they bring the prices down. I am lucky to not be in this situation as it is mainly people with end stage cancer who are now having to beg, borrow and run fund raisers, just to stay alive that bit longer, so I am not best qualified to talk about the deeper details.

In the UK the words “postcode lottery” are well known, not just because there is one you can win money on, but also because that is how many treatments appear to be available. The NHS isn’t actually one big machine that cares for the whole country, it over sees what is regional care. Britain is broken down in to regions, the first are clear the four individual countries who make up the Union, but within those countries are regions and each regions has control of it’s own budget, allowing the management boards to decide what care they are going to approve and what they won’t. This means that you may not be able to get the treatment you need where you live, hence the “postcode” bit, move anything from 1 mile to 400 miles and you might, or definitely will, there is the “lottery”. You can appeal the decision of your NHS region to see if they will make an exception in your case but the chances are zero to slim. There are already people who have had to sell their homes and move away from family and friends, which are much needed when you are so ill, just so they can get the treatment they need, I can imagine that it is a horrendous choice to have to make, especially when the person who is ill may well still die in a short period of time, leaving their partners miles from what they call home.

Now comes the bit that I do know well, what happens with illnesses like mine. If you know my story, well you know I had to keep pushing and going to different doctors over 20 years, to eventually discover by accident that I have PRMS. Because it is a know condition that doesn’t respond to the normal drugs for MS, my drugs are mainstream and basic, so cost isn’t an issue, the NHS pick up the bill. It is also unlikely for me to be in the position to have to fight for a drug as the drug companies aren’t doing any relevant research as there are so few people with PRMS, just 5% of all MS suffers. That said, it could possibly occur from one of my other conditions, the future will tell. Not only do I get my drugs but any equipment that will assist me from their approved range, which is a mixed blessing as yes I loved my wheelchair, but their perching stools, grabs, walking sticks and splints are really ugly and often not suitable for use, but I have to say that I am really grateful for the stool, ugly or not. I think everything is designed for hospital use, without them thinking at all about people using these things in the real world. This though is the point where help really ends as when it comes to care at home for someone like myself, there is actually very little.

The government pays me monthly a fixed sum call Disability Living Allowance, this is calculated based on how disabled you really are and it is to pay for the extra expenses incurred which covers a huge range of thing including if you need it to pay someone to assist you with dressing, washing and so on. It is also something that isn’t an automatic payment, you have to prove that you really need it and in some cases, not even your specialist opinion is not enough. I was lucky, one way of looking at it I suppose, to be ill enough to receive it without any problems. When I was still working I also received a payment to cover the difference between what I would have paid to get back and forward to work on the bus and the actual cost of my taxis which I had to have. Once I was no longer working, I started to receive not just the normal payment anyone without a job would have, but and additional small payment on top as it is recognised that I will never work again, that and the DLA is what I live on now. The reality of life is that although I have that DLA payment, we can’t afford to use it to employ someone to be here for a few hours each week, at most it would cover the wages of one person for 5 hrs a week, but we need that money just to live, to pay the bills we have, without adding others, no matter how much I might need it. Right now we manage, if we need more help in the future we are lucky again because we live in the right place, in Scotland we don’t have to pay for a carer to come and wash, dress and even feed us if needed, that is free, in the rest of the country it has to be paid for. It doesn’t matter where you live there is no assistance for things like cleaning your home, or doing laundry or any of the other tasks that a disabled person may not be able to do as it is assumed if you are fit enough to be at home, you are fit enough or have family to do these things for you. If we didn’t own our flat and it was rented, they would have then paid part of our rent, depending on what my husband earns, as it stands we get nothing towards our mortgage.

My life may not be perfect and I may not have everything I want to have to live my last years in true comfort, but I feel so lucky to have what we do and appreciate every penny that we are given and every tablet that I take, as I know just how bad it could be if we lived in some other countries. The lottery abroad to me seems to start long before you are ill, it starts at the point when you are born and if your family can afford insurance to pay for health care. Then it continues through your own life, where your health is dependent again on income and what your own insurance covers or not. I have heard some horror stories from countries that I honestly thought treated their citizens well and had compassion for those to ill to work, now I see that too few do, no money all to often means no help outside basic medication and welfare, worse still are the countries who don’t even supply that. The western world may not be perfect but we really should always count our blessings.

Our NHS is far from perfect, you just need to read back into my blog, as there is story after story of the things that in my own personal life, would have kept an army of lawyers busy if we had had the sue culture we now have in the UK, but was unheard of back then. Personally I still wouldn’t sue them, even if I could, as I feel truly lucky to have our imperfect system, even if they make my life harder than it need be, I at least know that when I call, that call will be answered not with “What card do you use”, but with “Hello how can I help you today.”

 

Please read my blog from 2 years ago today – 18/11/12 – Positive Damage

At times it is all to easy to stop looking out and to spend too much time looking in wards, when you are ill and on your own a lot of the day you loose that feeling that there is a world out there. I often wonder if that feeling is compounded by the fact that annoyingly it has manage to get on fine without you, and…..

A "service", it’s not

Right now I am already exhausted, but as I woke up that way, it really isn’t that much of a surprise. Yesterday was yet another NHS farce, not the medical side, no that was great, but it was once more the transport. They arrived around the time I thought they would and with the confidence that everything possible had been done here I actually left the house with some confidence and ready to just get it all over with and to get home again. As always getting down the stairs was horrendous, not being a fan of being flung around like I was on a fairground ride, the journey on the stair climber was hellish. I reached the ambulance feeling nauseous and without any of the brightness I had felt just 10 minutes earlier, the attendants as always were bright and chatty, but with the way I felt, just that bit too chatty. When you feel like throwing up, what you really want is silence and fresh air, what I got was endless noise and extreme heat and stuffiness once on board. They had allowed Adam to come with me, with the usual “well don’t tell anyone” attitude, but he was there with me, we had explained to them that I need him with me, as without him I get anxious and agitated, I had no fear that the NHS would see no physical harm come to me, but this is a brain damage and without him, well I doubt I would hold it together should anything unexpected occur.

We weren’t going straight to the dental hospital they had to pick someone else up and drop off before we went there. I don’t know if you have been in an old British ambulance, they use the out of date ones for patient transport and their suspension isn’t quite what it was, nor are the roads if I am being fair, it was a combination, but it bumped and swayed it way to the next pick up with me feeling more and more sick all the way. Pick up made and it was off to the hospital they were going to, but we hadn’t been moving for even five minutes when I had to ask them for some fresh air, oh and a bowl. Feeling sick in public is one thing, throwing up is another, it just isn’t something you want others to see, so I sat there fighting, not to hold on to anything as I hadn’t eaten my lunch as I knew what the stair climber could do to me, I didn’t expect the ambulance to be worse. Luckily the air did the trick, but I can’t remember feeling so relieved for a long time, when we finally got to our destination and I was being wheeled through to wait to see the consultant. As is always when you are using hospital transport, you are put to the front of the cue, that way they rush you through so that when they return you are ready to go and it was all going so well. Glasgow dental hospital is a teaching hospital and you always see a student first, they make their conclusions and then the consultant appears to give theirs, both concluded the same thing, I had had two ulcers, with no clear reason for their appearance which had left damage not fully healed as they could see what I could only feel. The consultant wanted me to have a new type of x-ray, I had never heard of, you sit with your head not tightly clamped, but enough to stop you moving, the machine moves round your head quite quickly and quietly, getting one long x-ray of all your teeth. Nothing was found, it is was just to make sure that there were no wells of pus waiting to come to the surface, the only thing I did actually fear as the skin is taking a rather long time to settle back to it’s normal shape.

They had completed the x-ray and we were just waiting to see the consultant when the ambulance returned to pick me up, they wouldn’t wait, saying they weren’t allowed to, but the receptionist was calling for a replacement to take us home. It was just after 3pm, so I thought no more of it and we chatted to the consultant about getting me on to the list of a dentist who would be happy to come to our home, I didn’t know there was such a thing, so I was happy of his help. I didn’t remember until today, I did have a dentist here about 5 years ago, who did come to the house and look at my teeth, but then I was so terrified of being carried down the stairs, I refused to go the hospital and have the work done, I preferred to just put up with my broken teeth. Stupid, I know that now, but well at the time I didn’t know about stair climbers and the last time an ambulance crew carried me down this many stairs, all I remembered was the feeling I was going to tip off their chair and fall the rest of the way. We returned to sit in the waiting room once more, having checked with reception that the ambulance was booked, by this time it was just pass 3:30, the start of what was going to be a very long wait.

The Dental hospital isn’t a hospital in the normal sense, it doesn’t have any wards and apart from a couple of emergency dentists there until 10pm, the whole place shuts down at 5:30 every night. Yes we were still there at 5:30, and 6:30, in fact they eventually picked us up at 6:45. No one at their control centre seemed to be able to give a straight answer, every call they made the answer was the same, they would be there within half an hour, over and over again, but each call had a new excuse as well. The duty nurse, the nurse manager and one of the dentist, all who should have gone home at 5:30 where stuck there with us, and each took turn to come along and talk to us for a short while. I have to say it was the consultant that I most enjoyed getting the chance to talk to, as there I was with a captive representative of the NHS, I had the chance to put forward my views and suggestions as to how both the patient experience of the housebound and the NHS budgets could be improved, with the use of a system like skype. In fact we spoke about a huge range of ways that the systems could change with more savings, rather than costs and even about the attitude of brushing those of us who don’t make their stats look good to one side. If we had to have a long wait, well that was the pure upside of it, as I really got the feeling that we parted with him leaving with his brain ticking over on things he had never thought about before, he may be a dental consultant, but it doesn’t do harm to plant seeds where ever we can.

The journey home was the total opposite from the one there, no being thrown about inside a juddering ambulance, well yes a couple of times, but not constantly, there wasn’t any discussion as to whether Adam could or couldn’t come in the ambulance with me, he was invited in and made as welcome as I was. About half way through we were sat at some traffic lights and I looked up to see a huge concrete object above us, I turned to Adam and said that I had never seen it before, he asked what and I pointed again. It is the not so new now motorway that passes over part of Glasgow and has been carrying traffic for four years, the last time I had been that direction they hadn’t even started on the foundations, I had been watching it’s beginnings a few miles west as both sections where on my route to work. Just seeing it truly reminded me just how much the world has changed while I have just been sat here in my living room. You know it’s happening, but somehow you don’t even think about the day to day changes that everyone who lives around me sees without even thinking about them as they are just that to them, every day.

By the time we were home I felt really ill, washed out and exhausted, but my day wasn’t over, I still had things to do, if I wasn’t going to make today hell as well. What should have taken me just 20 minutes, stretched itself out to an hour as getting my brain to work was hard, it just wasn’t wanting to work. Even when I closed my PC down again, I still couldn’t go to bed, something made me just want to sit in normality, in front of the TV doing nothing and thinking probably less. Not surprisingly, when my head hit the pillow my brain shut down almost instantly and remained that ways without any argument from the rest of me at all.

This morning, well I don’t feel much better than I did yesterday, I had said two weeks ago that going to the hospital wasn’t needed and was going to be more hassle than it was worth, I just wish others had listened to me. The only person who gained was Adam as he didn’t believe that the ‘thing’ wasn’t worth bothering with, he of course had decided it was something major, so I am at least glad that the truth is known and I was right. I though will be paying the price for several days I believe, as this journey to hospital has taken far much more out of me than any of the previous ones, I am not just fatigued or tired, a day sitting in a wheelchair with spasms being triggered due to the position I was sat in, has left me with muscles that don’t normally hurt, aching and internally bruised, both in my arms and my legs, my legs being the worst. Being unable to stretch my body all day, has left me with new lines of pain in my guts, everything that can ache from my hips to my shoulders is delivering varying amounts of pain and in many ways, I just want to disappear, even from myself. I am sure that those responsible for what went wrong yesterday, don’t have the slightest idea of what they do to people, what is the problem with someone having to wait for 4 hours, well if we were fit and healthy, none, but we need the transport because we are anything but. I didn’t put myself into their hands for a giggle or a little day out, I did it because I had no choice and I needed their help, what I got, well yes they took me there and back, but I just wish they could understand the damage now done and the time it will take to return to normal, maybe someone should put them through it and see if they think it is an OK level of service.

 

Please read my blog from 2 years ago today – 07/11/12 – Control of me

I took sometime yesterday to sit and think through what happens now, it is clear that somethings have to change as I really am getting worse and worse when it comes to all the cognitive issues. I haven’t spoken to Adam about this yet and I know he will read this tonight but I am hoping to find the spot to…..