Something to think about

Two hours ago, I knew exactly what I was going to write about this morning. I know, I should have made a note, or written at least the first line of my post, but I didn’t. My intentions of speaking to my doctor today fell flat as well, apparently, he isn’t going to be in the surgery until later this week. I know that I could have spoken to his partner, but I really didn’t want to put myself through that. I knew that it’s wrong of me, but I really can’t stand talking to her. She is one of those doctors who is never satisfied with anything that you say, and always wants to go through everything and every little detail, before, she does anything at all. If she prescribes anything for you, she then insists in telling you every single side effect that might just happen, even if you have had the drug before. If I were desperate and needing assistance right now, of course, I would talk to her, but as this is just a step on from my conversation of last week, and a couple of other small things, I decided that it was better just to wait. In some ways, that’s good, as it shows that I am more than happy with and totally trust my own GP, but it also has a bad side, as she is the only other doctor in the practice. Our relationship with those who care for us, is so, important, it is probably the relationship, next to our family, that matters the most. If my GP were to retire, I believe that I would have to find a new surgery to take me on, as I quite simply couldn’t put up with her as my solo medical contact for everyday matters.

I have lost count long ago how many different consultants I have seen, since, I first knew I was ill. Even now, the consultants who care for me, keep changing, you never know until you arrive at the hospital exactly who you will see. To me, this is wrong. Personally, I honestly think that our care should always be in the hands of the same doctor throughout, of course, should they leave that is a whole different issue. Trust, is the greatest part of care, and it is something that has to grow, it just doesn’t appear because the person in front of you, is a doctor. Especially, if like me, your experience over the years, hasn’t always been exactly a good one. I have been dismissed, wrongly treated and sent home with the feeling that they don’t believe me, so many times, that trust, is now, an even harder thing to find. Being wheeled into a room by Adam, to be faced with yet another stranger, yet another person who knows nothing about my or my health, always, makes my heart fall. It doesn’t matter how nice they are, how much they try to put me at ease, or how friendly their smile is, the second those questions that I have answered a million times before appear, I know once more, that I am back at the beginning.

Sometimes I wonder what the point is of all those notes that they write. Why bother writing any of them, if no one reads them? I know they don’t have the time to read them from beginning to end, but even a brief scan, of the last two visits, would put them on the right road, before, they start asking questions. I honestly fear, that the day will come, when I will just shout back at them “Read the bloody notes”, but I wouldn’t be that rude, I just think it over and over. How hard is it really when booking a repeat visit, to book it with the same doctor? I have sat there in the waiting room, over and over seeing the doctors I know, passing and smiling a hello, then to be called in, to see yet another total stranger. Why? I can’t find the logic, as surely if I saw the same ones, the ones that know me, the consultation will be shorter, with less stupid questions. Yet, time after time, this has happened, and there seems to be no way around it. Yes, I have in the past asked to see the same doctor next time, the answer is always the same, “We can’t guarantee that”. OK, I get it, four months from now they might be on holiday, or sick, or not even work there any longer, but they could at least try.

If you don’t have trust in the doctor in front of you, there is no point you being there, no point even talking to them. If you don’t trust them, don’t trust what they say, or what they prescribe, I expect, in some cases, their treatment may even fail, down to that lack of trust. Our minds dwell on what we fear, are ill at ease with or even just question. Our minds can do things that we ourselves aren’t even aware of, they can make our physical state worse, simply because we don’t trust, or like, or want to see again, that one person. Every time you take the tablet they prescribe, you look at it with mistrust, as you are putting your feeling for the person, into what is lying in your hand. That person who made you ill at ease, who dismissed you from their office without a smile, or even a pleasant world, is there in front of you every time you take their horrid little pills. Yes, I have been there, a long time ago now, but I remember it all too clearly.

A good doctor isn’t the one who knows more, who has read every medical paper ever written some or has an arms length of initials, after their name. Without a doubt, knowledge means a lot, but it makes them knowledgeable, not good. A good doctor is the one who greets you as an equal, not an irritation, who listens with knowing nods, not disinterest and with a twisted mouth or raised eyebrow. A good doctor takes the time to know you, to understand you, not just as their patient but as a person. A good doctor doesn’t just go for what they think is obvious, they don’t just look at your list of conditions and medications and draw a conclusion, without first listening to what you have to say, even if, it takes a little longer than they would like. A good doctor treats the patient, not just the symptoms and conditions, and before you think that they don’t have that time to do all that, the good ones, don’t need extra time, as they’re humans, not a know it all machine.

Each one of us as we navigate the world of the chronically ill, will meet more than our fair share of the rogues, and all too few of the good. Is it surprising, then, that I along with the rest of us, know the doctor we want to talk to, the doctor we want to be treated by, the doctors that we trust. In this relationship, we need trust, we need to know who they are and what they can do for us, as it is our lives, that they literally have their hands, not for a minute, or even ten, but forever. Every second, we live, depends on their care and our trust in them. Every second of the outstretched years that await us, our comfort, our pain, and every breath that we take, can depend on them. How our doctors make us feel, doesn’t end at the hospital or surgery door, it doesn’t end until we do.

Today, you might want to see one about a cough that doesn’t go away, it’s a moment, a piece of paper with a scroll you can’t read. You might not see one again for years, with luck, or you might be back as that cough just won’t go away and you find yourself at the start of the trek called chronic illness. Do you like your doctor, do you trust them without the slightest doubt? Would you put your very life in their hands without a seconds thought? Would you really? If you’re not sure, them maybe, just maybe, you should think again about the doctor you see. Their surgery may be convenient, near your home or your work, but is that a good enough reason to be registered with them, did you really check the other ones out there, or was it just pot luck? We, the chronically ill, live with their hands and their work guiding us throughout every day, to us, our doctors are our life, as, without them, we wouldn’t be here. So ask yourself again, just these simple questions….. Do you trust your doctor? ………Totally?

 

Please read my blog from 2 years ago today – 26/01/2014 – At last the proof

One of my many questions about my health has I believe been finally answered, how, well it was simple I just needed to use my eyes, something I seem to have forgotten to do. For months now there has been a possibility……

 

 

 

 

 

 

 

Getting it right

I lost my right leg last night, we were just watching TV, and the whole thing suddenly died from knee to toes. Compared to last week when I wasn’t able to find a single of part of me that felt normal, I’m not complaining. What made me mention it, was the fact it was to totally numb and went suddenly. I’m used to it normally going slowly from a single expanding spot, but last night, it was fine one second, the next it was gone. I guess it could say it has learnt a new trick, in time for the New Year. In general, getting that deep nights sleep did make a huge difference and it is a trick that I am going to hold onto, just in case, it’s needed again. I wasn’t doing it totally in the blind, as the day before I had taken a booster during the day and I noted then, that the sensations eased off, they didn’t stop, but they did turn down in intensity. I am wondering if part of the problem, is that my painkillers aren’t holding everything as quiet, as they have up to date. It has been quite a while since they were last increased and I know better than most, if you are constantly fighting, even with low-level pain, you get tired. It doesn’t just wear you down during the day, but it also means that you don’t sleep as deeply, which isn’t something you can’t really measure, other than by how you feel during the day. Get tired, which I have been now for ages, and everything else steps up, making life miserable. It might well be time to ask for a 10mg increase on the slow release Morphine, as the last time I increased it by that amount, life changed totally for me.

I don’t know if you would call it a healthy respect, or just a plain reluctance, but I never race into increasing or changing my medications in any way. I know that some people just take and take, with only one thought, to try and make their bodies feet just as it did before their condition began. That to me is not the best route. If I had been doing that since I was diagnosed, god knows how many drugs, I would be taking now. I, without discussing it with anyone, have cut out and ditched about half the drugs that all my different Doctors have prescribed for me, at different times. Every drug I have ever been given, I have tested, not just when I first started them, but at odd occasions from then on. If I didn’t feel it was doing what I expected, I would stop it for a while and wait and see exactly what happened. This is not something, I recommend that anyone does, I have chosen carefully the drugs I have removed, none has been life essential, nor condition altering, just symptom suppressing. I noticed, that every time I complained to my doctor that I wasn’t getting my expected result from taking them, all they did was up the dose. The first one that I stopped was one that was supposed to keep me awake. After about three years of taking them, I suddenly found that I could take it, and go to sleep within the hour. I simply wasn’t happy about adding yet more, of what in effect was “speed” into my system I stopped it and absolutely nothing changed. I didn’t feel different in any way, so I could see no point, in taking their ever increasing dose, when the one I was on, far higher than the insert suggested, did nothing. It has prompted me to test others as well over the years. At a guess, I would say that I have halved the medications they would have otherwise continued to prescribe, they weren’t doing me any good and were just costing the NHS money.

I know that my body is a mess, and I can’t see how, it helps to fill me with chemicals that do nothing or little. The drugs I am on now, are drugs that I need and work, but I still have a reluctance to increase anything, before I reach the point, when there is no other answer. Chemicals can help, but there is no way, that there isn’t a price to pay at some point. Right now, my body is tolerating them, appreciating them and working with them, which is just how, it should be. I know that on the scale of things, the level of Morphine that I am on isn’t that high, but, I don’t know how many years I still have to go, or how or what my body will throw at me. Addiction doesn’t come into it the equation at all. Why would it? I’m in the closing phases of my life, if I get addicted to anything, well it’s not going to matter, as there’s only one way that I will ever come off it. All the medical profession can do for me, is to keep my pain levels at bay. I know they can’t take it away, and that I will never, not even for a minute, be totally free of it. As long as it’s at a level where I can live with it, then that’s all I ask.

Chronic illness is all about balance. Activity, enjoyment, drugs, sleep and hope. You have to have them all, and you have to decide for yourself, how you want that balance to sit. It’s personal, not medical, and that’s something a lot of people forget. Our doctors are there to help us, look after our bodies, not to control them. It doesn’t matter what the medical books say, or those people who read them, think they say, it’s up to us, to interpret it all including how it all makes us feel and to control our health. Personally, as I’ve said before, I listen to my body, I know it and I know quite quickly what it likes and what it doesn’t. So far, I don’t think I have done too badly in actually living with PRMS, COPD, Fibro and a list of many other more minor conditions. This is the start of year 15 post diagnosis of my PRMS, 15 years ago, I didn’t think, because of what my doctors said, that I would be here today, yet here I am. This the start of year 3 post diagnosis of my COPD, 7 more to go, if the doctor is right, but I still think, that it’s all up to me. I’ll keep listening to all and anything that might help me, but it’s all up to me.

 

Please read my blog from 2 year ago today – 02/01/2014 – Glorious isolation

In Scotland today is yet another holiday but the last now until April but it means that again my morning has been filled with the constant sound of snoring, no matter how much I love Adam I will never get used…..

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/

Who’s job is it?

I guess I should have known that this was going to be an odd week when Adam announced last week that he was taking a week off. He swore he told me before and I equally swear that he didn’t. Nothing new there then, as he is probably right. Another one of those annoying things about slowly losing your memory, you can’t demand any longer that you are right. I used to be the sort of person who could repeat word for words conversations had years ago. I doubt now I could actually repeat one that I had yesterday. It’s another one of those frustrating things that you have to get used to, not always being right. At times, it becomes another of those very personal things like it is some kind of retribution for being a know it all, you become a total know nothing for sure. Last night I was helping Adam with some of his college work, I thought I was on the firm ground as it was basic Excel and I do mean basic. There I was, the once queen of the subject; the person who could build complex worksheet not only filled with embedded functions, swish graphics and programmed to do all the daily work of updating by a simple single click; staring at a spreadsheet unsure how to sort out simple percentages. Of course, I got it right eventually, but I felt so stupid for getting it wrong on my first look. It doesn’t matter that you have the perfect excuse of no longer owning a brain, you still feel as though you are a first class, idiot.

I am as always when Adam is at home, at a total loss as to what day of the week it is, or how to work out time, when it isn’t all done around his working hours. I have been totally thrown at every turn and lost as to even how to get things right with our TV viewing. TV programs are usually either half an hour or an hour in length, so it should be simple. Yet, I have managed to make a mess of that simple calculation three times in the past three days. I have forgotten to take my meds and even struggled with the idea that it is lunchtime. It hasn’t been helped by the alarm clock being set for 8:30 each morning rather than 7:30. Add in the events of Monday and I really don’t stand a chance of being in control of anything. I may have softened my routine in the past month, removed all those rigid timings, but even in its softened form, it and I can’t cope. I have been very tempted to reset the alarm to its normal time, in the hope of removing one element, but I have to admit that that extra hour in bed is really nice when I get it. All of them are such trivial things, the kind of problems most people and even I several years ago would have loved to swap places with those I faced hourly. These days, they are major disruptions to my life and hard to get my head around. Once again, change, even such tiny ones just aren’t something that I can manage without it exploding into a major disaster of some kind in my mind.

I think that it was on Sunday that I woke from my nap to find Adam sat here at my desk. To my horror, he was cleaning it. Most people would be grateful of such an act, he was being caring and helpful. I saw someone making a mess of my life. He was moving about all those tiny things that have to be placed exactly where I last saw them, just so that I know the world isn’t ending. I sat here, once I had removed him from my space, shifting things back to where I thought they had been. Moving them over and over, trying to find the exact scatter pattern of pens and cream bottles that lurk to the left of the screen. Shuffling papers, and pushing the keyboard from side to side, then adjusting the screen, that I knew had moved, be it only by millimetres, it wasn’t where I left it. The whole time I was wound up to exploding point. Not meaning to be ungrateful, but so distressed that you would think he had removed everything on my computer hard drive. I can’t control things like that. I wish I could, but I can’t any longer. It has been on a downwards slope for ages and although I know that Adam understands, it doesn’t stop me afterwards from feeling really guilty over my behaviour.

Losing control, whether it is minor or major, is really hard to accept. I need my life mapped out, I need to know what will happen next and where it will happen. Which is part of what I was trying to get across yesterday. I know some took my words as being totally about euthanasia, it wasn’t. In fact, the majority was about knowing the details of what and where my later months or years will be spent and how and who will care for me. I have like every other single person out there lived for years, knowing that any minute I might find myself in the hospital. For me, it holds an extra trauma. A problem that is so huge that I actually fear it more on the how will I manage than what could be the medical reasons for being there. Just as much as my surrounding, I find strangers hard to deal with. If they are here, here in my home, well I manage far better, but still find it really hard. A couple of years ago, I found myself having to be visited by the district nurses three times a week. Thier fleeting visits always left me unsettled and at times distressed. I know that without a doubt that that situation will happen again, as there is a list as long as my arm as to why their presence could be required.

My need to be able to plan and prepare for what I know is ahead is based in the fact that I know I will be a lot iller than I am now. Knowing what the possibilities are as far as even my care, might just make it all that bit easier. I want to know what aid is available, the actual people I know isn’t possible, but just knowing, having a ladder of people who can be contacted for this or that reason, would make me feel more secure. Knowing what the possibilities are of pain control and other medical interventions that are available to me at home and what point that care has to be moved to a hospital. Knowing what aid is available for my care at home. Despite Adam being here, what care can I still have from the NHS to make his life easier. Would there be respite care? Can I stay here right through to the end, or is there hospice care available should it be too difficult? Where would that be? What are the costs, as we can’t afford anything really? The list of questions that haunt me is huge. Their worst side is the distress it will all cause me and what my reaction to people and places by then. One question especially haunts me, if my bizarre reaction to change gets worse, what then, how much would it change all of it?

As I said yesterday, I don’t intend to die any time soon, but I want peace of mind about what will happen in the future. When you know how you react to the unexpected, being able to put things in place so that I have the time to come to terms with it, could change everything. Not just for me but also for Adam. I know he already stresses over the idea of my going into hospital, partly because of this. He has already told me that he worries how he will manage to get it through to the Nursing staff and Doctors that I don’t deal with change at all. That my routine has to be stuck to, as throw it into disarray and I will be highly distressed by it all. There doesn’t though seem to be anywhere to get these questions answered. Nowhere that I can contact to start making arrangements for what I know is an unknown future, but one that I desperately want to clip the thorns off, for both of us. The closest that I have managed to come up with is to write a detailed care plan, but even for that, we would need some medical input and some of my questions answered.

It seems so wrong that all of this should be so difficult. After all it isn’t just for me, it is for the benefit of the NHS as well. Without a way of getting all of this sorted out in advance, some way of putting my mind at rest and with preparation time to get this stupid brain at ease with it, I will be a horrific patient, not on purpose but because it’s something I simply can’t help. My doctor is a really nice guy, but he is busy, far too busy without me wanting what in reality might be hours of his time, not in one session, but still time I don’t think that would be spent doing what his job is. But who’s job is it?

Please read my blog from 2 years ago – Unpredictable

Yesterday was my day of atonement and boy was I paying for every bit of Sunday! While I was writing my post yesterday I actually thought that I might just have got away with having a day…. https://livinginalimitedworld.com/2014/08/05/

It’s up to us

The phone call with Jake yesterday left me disturbed for the rest of the day. I don’t know why, but all of a sudden when I was in the middle of doing something else, I suddenly felt the cold blank fear that grabbed hold of me when I found that I wasn’t there. This isn’t the first time that something odd has happened and it has hung around for hours if not days. When you don’t know why something can happen, you are left with a double fear, what caused it and will it happen again. Dealing constantly with a body that does things that would have many running to the doctor in the belief that they were either dying or going mad, is no picnic. We the chronically ill, are probably the ones who spend the least time in our doctors surgery or calling them out to our homes, despite what you hear on the TV. Listen to the constant reporting on the reasons for the NHS is straining at the seams and you would believe that people like me see our doctors at least once a week, if not daily. I would love to know where they get their figures from. In all the time that I have been housebound, my doctor has been here once. Yes, I speak to him on the phone, but only when I have a problem that I just can’t fix or work out for myself. Spread those calls over my 8 years of being housebound and I doubt that you would find I have even spoken to him more than once every three months and most calls have been under 3 minutes.

It actually makes me angry the way that the chronically ill are portrayed and thought about by those who aren’t ill themselves. Which is the reason that I chose the picture to sit on the sticky post on my home page. I don’t know how that image can be broken other than for more and more of us who are chronically ill, making a stand on social media spreading the truth of our lives. Ask most healthy people what they would do if they woke with a dead hand as I did on Sunday. A hand that didn’t recover full motion or normal sensations within an hour, or as in my case until the next day, and I am sure that more than half would be on their way to the hospital. I just got on with it and wrote about it, as I do with everything else. If I were able to go to the hospital and acted in that way, I would be there at least once every week. But that is the difference between the chronically ill and the rest of the world, we just accept that our bodies are falling apart and there is nothing anyone can do about it. My only contact with any hospital is when my GP feels that the input of a consultant would be helpful, exactly the same as anyone else in this country. In fact, I think it is fair to say that the majority of chronically ill people do everything that they can to avoid going anywhere near a doctor or a hospital. Yet, week after week there it is in the stats being held up as one of the reasons that the NHS is having problems, the number of chronically ill in this country.

The biggest impact we have on any medical body is the time it takes for them to diagnoses us. Over 75% of all hospital visits I have ever had where those when they kept telling me they couldn’t find anything wrong, but they nearly all passed me onto other departments. Apart from a break of the last 9 years pre-diagnosis, where I just gave up and got on with it, which means I had 21 years of that and know that I am not alone in those time scales. Half the time post-diagnosis when we go to the hospital after that point is a waste of time. Appointments where our consultants just nod, smile and say see you next year. If the NHS want to save money then stop wasting our time by dishing out appointments from a rota. Instead, allow us to make an appointment when we need their input. Personally, I got so fed up with seeing my neuro’s nodding head, that I stopped going and I haven’t been there now for 7 years. As we age, I admit that those of us with a chronic illness will start to draw more from their services, but so do even the so called healthy. In fact, if you take into account our lack of longevity, it wouldn’t surprise me to find that it probably balances out in the end.

If we are ever going to break this blame game, or societies view of us as lazy spongers who could if we were just pushed, actually manage to work and care for ourselves, we have a lot of work to do. And there is the problem, we are caught in a catch 22, the majority of us just don’t have the energy to fight anything else. Assumption is often the biggest driver of prejudice. People assume far too much about every subject there is, chronic illness is just another one. That isn’t going to change until all of us who has any chronic condition is willing to tell everyone that we know what is wrong with them, then continue to live our lives well for as long as possible as proof. Once forced to face their own assumptions as being wrong, then there is a possibility that the world will change, but it will take each and every one of us.

As the years have passed I know that I am getting more sensitive to those who in my opinion pick on the chronically ill. I guess it is because I can’t get out there any longer and prove them wrong. I am invisible to the world apart from here in my blog and on Twitter. The TV is my ear on the world and what I hear often hurts. I get just as angry about the way the chronically ill are portrayed as I do about the constant reporting on obesity. I can no longer do anything about my weight, like most who have little to no mobility, weight happens. Yet daily the word is always picking at me that I eat all the wrong things and drink sugar filled fizzy drinks. I do neither. I know all the right things to eat and I eat them in small quantities. Not one program I have watched has ever even once said that there can be a medical reason that someone gaining weight. Rather than being pointedly told over and over to exercise and eat less, I can’t do either. From the day I was diagnosed to the day I became housebound, I portrait a positive view and image of my illness. I proved daily that there was no reason to stop, to not work and not be part of the world. I was sat in a wheelchair, but I looked smart, I was slender and I worked as hard those around me. I am just one person, it would take the same from each and every one of us. but I believe we owe it to those who will follow in our footsteps and wheel tracks.

Please read my blog from 2 years ago – 22/07/2013 – From peace to twitch

Yesterday was a more normal day, we didn’t talk about or work on any of the things that filled Saturday night, I think we both needed that small space to breath, before any more happens. I plan this afternoon after I have had my nap to make a few phone calls and see what I can find out, but……