It never ends
Yesterday I had a doctors appointment. I'd booked this over a week ago. When I got down to the surgery they claimed I had no appointment at all - the receptionist checked to see had I the wrong time or date, and was adamant that, in fact, I had no appointment with them whatsoever. Go away, we will not see you, make an appointment properly. Only I HAD. And, almost coincedentally, right then I really *needed* to see a doctor.
This triggered a spiral of paranoid thought about my doctors appoinments being cancelled on me, linked of course to the instant realisation that my thoughts were turning in a rather paranoid direction, which carries the risk of somehow becoming oh-my-god-I'm-even-being-paranoid-now!-see-what-that-doctors-surgery-are-responsible-for. That depth of non-logic isn't a happy place.
Now the thing is, I wasn't happy about the date or time of the appointment when I orriginally booked it. On the same day as a big work meeting wasn't great, but the next availible slot with that doctor was over a month away. Maybe she's off on holidays or something, I don't know - but quite excluding the fact that (at the time of booking) six weeks was too long a wait, I will have moved house by then, and trecking back over here will be well nigh impossible. I'll be looking for a new GP by then anyway. But I really, really wanted to see *my* doctor one last time before I left.
But as small as it seems, booking that appointment had been a *big deal* for me, and I was happy I'd done it, and somehow proud of myself. I left the hospital back in mid-April. 4 days short of 2 months ago. With a letter in hand for work, confirming a verbal promise of immediate and extensive follow-up in the community including a host of outpatient appointments, occupational therapy and physio (that last being, in my mind, by far the most important). Then what followed was diddlysquat. nada, nothing, zip, zilch. Fuck-off-and-die-please. We don't know whats wrong with you, so we don't want to know you.
And as I lie here, with no follow ups, I am not getting any better. I'm not even plateauing. I'm slowly, insidiously, but noticably, getting worse. 12 weeks ago I was falling constantly. 4 to 6 weeks ago I reached the point where I really noticed I wasn't having falls any more, and was *really pleased with myself*. But it wasn't getting better, it was learning to cope, learning new skills about staying on my feet against the weakness, managing the crutches better, learning to grip that bit harder at the first hint of the weakness in my knees that can drop me to the ground. Swinging through on them instead of even trying 'normal' steps. Now, that isn't helping so much any more. Becasue I'm falling again. And they are different falls - its hard to explain, but I'm not just plopping to the ground becasue my knees buckle - when that happens its not really all that bad (in context) - when it was a regular occurance I went around with permanently skinned hands and knees like a toddler learning to walk, but just as a toddler learning to walk doesn't actually injure themsleves, nor was I. Now, I don't know what the difference is, maybe its becasue I *am* fighting the falls but when I've hit the ground the last few times I've really hurt myself. I was acutley worried I'd have to go to the A&E with a sprained sholder 2 days ago, but gave it time and decided that its only a badly wrenched mussle, but it has still been horribly painful. Carrying your body weight on a pair of crutches with a wrenched sholder is an excruiciating pain level that no one should have to know about. At this rate, in another 4 to 6 weeks, will I be risking broken bones ever time I wobble to my feet?
So, I wanted to see my GP - becasue I was in limbo, with no follow ups from the hospital, with an illness that is still progressing, and I didn't know what to do about it. I contemplated sending letters, making phone calls, lodging complaints on my own behalf - but that has not ended well in the past, and has only hindered me from getting care or treatment, not helped. I've learned the hard way NOT to do that. So going to the GP, who I haven't actually seen since she refered me to the hospital back in February, seemed like a sensible thing to do. She could advise me, she would know what to do. And I fought the terrible atrophy that was threatening to grip me about it all. And Took A Positive Decision (tm) and then Followed Throught With Action(tm). that actually took effort, and willpower, and I was pleased with myself. I anticipating getting some guidance as to where to go for the supports I need for this ever increasing disability, and a little bit to also just say goodbye and thanks for the help they have given me over the last 2 years - close a door positively so as to be able to open one positivly with a new GP.
Only on the day, it became so much more - becasue as it so happens for the last month I've been fighting infection. Who am I kidding? Its the same sinus/chest infection I first contracted christmas a year and a half ago, and has never fully 100% gone away. And I haven't had a day completly free from it. But its on an upswing since a cold came into the house about a month ago which of course I caught. Yesterday morning was the turning point where I started hacking up thick green phlem from deep in my chest and having stop-me-in-my-tracks wheezing bouts rather than carry-on-with-what-I'm-doing kind of ones.
So yesterday I headed to work (traumatic in its own right, but thats another story). Got home, and had 20 mins rest in the house before heading to the doctors. But the BAD thing is, the surgery is just down the road. Why is that bad? Becasue it means I have to walk there - and I CAN'T FUCKING WALK. I can just manage the train or bus stop beside my house as my maximum distance for walking. but there is no bus that goes down that road, and its only 5 minutes walk away for a normal walker. I gave myslef 30 minutes, and took all of that time, and every step-and-stop was agony as knives went through my body from the wrenched sholder on one side, and up through my chest from the chest infection from the other, meeting as a well of red pain in the middle. But I fought. it. every. painful. step - as is just about the only option with this illness, and got there, in a state of almost collapse. I couldn't even stand with the crutches by the time I got to the reception desk - a high counter of course, not somewhere you could sit at. And I had to que behind someone taking forever. And there are no seats to sit and que on. None of this namby-pambying to the sick and infirm in OUR doctors surgery, thank you very much. I had no cloice but to fully grip the counter for support - which clearly anoyed the person in front of me, who threw nasty glances as if I was invading her space - but it was that or lie on the gound as I waited. Then a huge coughing spasm hit, and it was actually funny to watch everyone move instinctivly away from me. Ugh, the plague! Speaking and making myslef understood to the receptionist was hard, becasue I was by that point having a major post-cough wheezing attack. But, she said, I Didn't Have An Appointment! And therefore she demanded I leave.
I didn't argue. I didn't squablle, or stand up for myslef, or ask to see the nurse instead, or ask to get an emergency appointment. I just felt the tears rise to my eyes, and so, to preserve what little dignity I had left, I turned, and walked away. As fast as it is possible to do on crutches, with a wrenched sholder, while having an accute asthma attack. It took me almost an hour to walk the 5 minute walk home.
And I was in despair.
But the endless question was - WHY, when I had booked an appointment using the online booking system that they pressure you into using, and got final, full confirmation that my appointment had been booked, was there none there on the day for me when I went down? THAT is the million dollar question.
The simple explaination is this. Techo-fail. Which is of course a huge problem. I booked, now I think of it, at the begining of a bank holiday weekend. Could my booking have fallen off the end of a page by the time the Tuesday came and some human somewhere processed the weekend bookings? Is some explanation like that possible? I don't know enough to know how precisely an online booking system would be processed, or where the pit falls within it might be - but I do know two things. Technology IS falable, and when idiots claim that it is utterly infalable and that I'm lying about having made an appointment when I did - just ARRRRRRGGGGGGG
The other possible explanation is far more pernisious. Someone cancelled my booking, someone, somewhere, decided that I shouldn't see a doctor. It sounds crazy, doesn't it. Why would anyone do that? Maybe, because the Kings Hospital neurologists come to the conclusion that I don't have a real illness. And there is a protocol around dealing with patients with 'functional illnesses' - most clearly laid out in relation to patients with ME which in the UK is still treated under guidlines as a psyciatric illness, despite the WHO clearly listing it as a physically based neurological illness (incedentally, I don't think I have ME, and this hasn't been suggested by anyone, becasue what I have is very similar, but all rationality points to a genetic route due to shared family experiences. But my main problems do overlap a lot with what someone with moderate severity ME would have, from what I have read. Also, my totally un-named illness and ME share the common conection of being treated as functional illnesses, when they are clearly physical ones.)
And the current UK guidlines issued to GPs by the psyciatric 'experts' recomend not carrying out any medical testing to rule out other illnesses once ME is suspected, as it only 'encourages' the patient to think of themsleves as ill, and, in addition 'excessive' booking of medical appointments is to be 'strongly discouraged'.
The final possibility is that I somehow did something wrong when I booked the appointment - but I got a proper confirmation message, and kept it up on screen for ages, as I tripple checked that I was translating 24 hour clock time accuratly into normal clock time. I wrote 'twenty past 4' very carefully in my diary, and clearly remember looking over and over again at that confirmation screen. Correct day, check, correct month, check, correct GP check. 16.20 - yes, that means twenty minutes past four. Check. There is no dount in my mind that the booking did initially go through. It just got cancelled somewhere between the Saturday that I made it, and the monday that it fell on 9 days later. For good reason or bad. Becasue of techno-fail, or to 'strongly discourage' me from making 'excessive' GP appointments (it would have been my fourth of 2011. Is that excessive? Quite seperatly form this debate, I've always found these things hard to judge. How often do others visit thier GP?)
What to do now. Well, there is no point seeing any other GP in that practice - as they will inisst that I see Dr. Adayeye, as she has been following my neuro illness. She's got no more bookable appointments until after I move - and that was of 2 weeks ago, so certainly none now. so, I'll simply move, and have no actual reason to ever be in contact with that GP surgery again.
if the chest infection lingers, or hits my nose badly, I'll have to go to a walk in clinic for an anti-biotic. But I'm not running a feaver so I may be able to avoid that.
Once I move I'll have a think about what to do about a new doctor. Like so many people I know nowadays I might just short-cut the beaurocratic nightmare of having a GP and only use walk in clinics. They are the only places where you can get to see a doctor *when you actually need one* anyway. But could I get my B12's through a walk in clinic? i'll look into that, and if the answer is yes, I don't see any purpose in signing up for a new GP. But speaking of which, I'm due another one this week or next - so I suppose I'll just have to head down to the nightmare that is Honour Oak Medical Clinic one last time, and make an appointment to see the nurse. Becasue if I move first and don't know how to go about getting one in the new place, I know myslef too well. I'll let it ride, and let it ride, and not deal until it reaches a crisis, and thats probably not for the best.
This triggered a spiral of paranoid thought about my doctors appoinments being cancelled on me, linked of course to the instant realisation that my thoughts were turning in a rather paranoid direction, which carries the risk of somehow becoming oh-my-god-I'm-even-being-paranoid-now!-see-what-that-doctors-surgery-are-responsible-for. That depth of non-logic isn't a happy place.
Now the thing is, I wasn't happy about the date or time of the appointment when I orriginally booked it. On the same day as a big work meeting wasn't great, but the next availible slot with that doctor was over a month away. Maybe she's off on holidays or something, I don't know - but quite excluding the fact that (at the time of booking) six weeks was too long a wait, I will have moved house by then, and trecking back over here will be well nigh impossible. I'll be looking for a new GP by then anyway. But I really, really wanted to see *my* doctor one last time before I left.
But as small as it seems, booking that appointment had been a *big deal* for me, and I was happy I'd done it, and somehow proud of myself. I left the hospital back in mid-April. 4 days short of 2 months ago. With a letter in hand for work, confirming a verbal promise of immediate and extensive follow-up in the community including a host of outpatient appointments, occupational therapy and physio (that last being, in my mind, by far the most important). Then what followed was diddlysquat. nada, nothing, zip, zilch. Fuck-off-and-die-please. We don't know whats wrong with you, so we don't want to know you.
And as I lie here, with no follow ups, I am not getting any better. I'm not even plateauing. I'm slowly, insidiously, but noticably, getting worse. 12 weeks ago I was falling constantly. 4 to 6 weeks ago I reached the point where I really noticed I wasn't having falls any more, and was *really pleased with myself*. But it wasn't getting better, it was learning to cope, learning new skills about staying on my feet against the weakness, managing the crutches better, learning to grip that bit harder at the first hint of the weakness in my knees that can drop me to the ground. Swinging through on them instead of even trying 'normal' steps. Now, that isn't helping so much any more. Becasue I'm falling again. And they are different falls - its hard to explain, but I'm not just plopping to the ground becasue my knees buckle - when that happens its not really all that bad (in context) - when it was a regular occurance I went around with permanently skinned hands and knees like a toddler learning to walk, but just as a toddler learning to walk doesn't actually injure themsleves, nor was I. Now, I don't know what the difference is, maybe its becasue I *am* fighting the falls but when I've hit the ground the last few times I've really hurt myself. I was acutley worried I'd have to go to the A&E with a sprained sholder 2 days ago, but gave it time and decided that its only a badly wrenched mussle, but it has still been horribly painful. Carrying your body weight on a pair of crutches with a wrenched sholder is an excruiciating pain level that no one should have to know about. At this rate, in another 4 to 6 weeks, will I be risking broken bones ever time I wobble to my feet?
So, I wanted to see my GP - becasue I was in limbo, with no follow ups from the hospital, with an illness that is still progressing, and I didn't know what to do about it. I contemplated sending letters, making phone calls, lodging complaints on my own behalf - but that has not ended well in the past, and has only hindered me from getting care or treatment, not helped. I've learned the hard way NOT to do that. So going to the GP, who I haven't actually seen since she refered me to the hospital back in February, seemed like a sensible thing to do. She could advise me, she would know what to do. And I fought the terrible atrophy that was threatening to grip me about it all. And Took A Positive Decision (tm) and then Followed Throught With Action(tm). that actually took effort, and willpower, and I was pleased with myself. I anticipating getting some guidance as to where to go for the supports I need for this ever increasing disability, and a little bit to also just say goodbye and thanks for the help they have given me over the last 2 years - close a door positively so as to be able to open one positivly with a new GP.
Only on the day, it became so much more - becasue as it so happens for the last month I've been fighting infection. Who am I kidding? Its the same sinus/chest infection I first contracted christmas a year and a half ago, and has never fully 100% gone away. And I haven't had a day completly free from it. But its on an upswing since a cold came into the house about a month ago which of course I caught. Yesterday morning was the turning point where I started hacking up thick green phlem from deep in my chest and having stop-me-in-my-tracks wheezing bouts rather than carry-on-with-what-I'm-doing kind of ones.
So yesterday I headed to work (traumatic in its own right, but thats another story). Got home, and had 20 mins rest in the house before heading to the doctors. But the BAD thing is, the surgery is just down the road. Why is that bad? Becasue it means I have to walk there - and I CAN'T FUCKING WALK. I can just manage the train or bus stop beside my house as my maximum distance for walking. but there is no bus that goes down that road, and its only 5 minutes walk away for a normal walker. I gave myslef 30 minutes, and took all of that time, and every step-and-stop was agony as knives went through my body from the wrenched sholder on one side, and up through my chest from the chest infection from the other, meeting as a well of red pain in the middle. But I fought. it. every. painful. step - as is just about the only option with this illness, and got there, in a state of almost collapse. I couldn't even stand with the crutches by the time I got to the reception desk - a high counter of course, not somewhere you could sit at. And I had to que behind someone taking forever. And there are no seats to sit and que on. None of this namby-pambying to the sick and infirm in OUR doctors surgery, thank you very much. I had no cloice but to fully grip the counter for support - which clearly anoyed the person in front of me, who threw nasty glances as if I was invading her space - but it was that or lie on the gound as I waited. Then a huge coughing spasm hit, and it was actually funny to watch everyone move instinctivly away from me. Ugh, the plague! Speaking and making myslef understood to the receptionist was hard, becasue I was by that point having a major post-cough wheezing attack. But, she said, I Didn't Have An Appointment! And therefore she demanded I leave.
I didn't argue. I didn't squablle, or stand up for myslef, or ask to see the nurse instead, or ask to get an emergency appointment. I just felt the tears rise to my eyes, and so, to preserve what little dignity I had left, I turned, and walked away. As fast as it is possible to do on crutches, with a wrenched sholder, while having an accute asthma attack. It took me almost an hour to walk the 5 minute walk home.
And I was in despair.
But the endless question was - WHY, when I had booked an appointment using the online booking system that they pressure you into using, and got final, full confirmation that my appointment had been booked, was there none there on the day for me when I went down? THAT is the million dollar question.
The simple explaination is this. Techo-fail. Which is of course a huge problem. I booked, now I think of it, at the begining of a bank holiday weekend. Could my booking have fallen off the end of a page by the time the Tuesday came and some human somewhere processed the weekend bookings? Is some explanation like that possible? I don't know enough to know how precisely an online booking system would be processed, or where the pit falls within it might be - but I do know two things. Technology IS falable, and when idiots claim that it is utterly infalable and that I'm lying about having made an appointment when I did - just ARRRRRRGGGGGGG
The other possible explanation is far more pernisious. Someone cancelled my booking, someone, somewhere, decided that I shouldn't see a doctor. It sounds crazy, doesn't it. Why would anyone do that? Maybe, because the Kings Hospital neurologists come to the conclusion that I don't have a real illness. And there is a protocol around dealing with patients with 'functional illnesses' - most clearly laid out in relation to patients with ME which in the UK is still treated under guidlines as a psyciatric illness, despite the WHO clearly listing it as a physically based neurological illness (incedentally, I don't think I have ME, and this hasn't been suggested by anyone, becasue what I have is very similar, but all rationality points to a genetic route due to shared family experiences. But my main problems do overlap a lot with what someone with moderate severity ME would have, from what I have read. Also, my totally un-named illness and ME share the common conection of being treated as functional illnesses, when they are clearly physical ones.)
And the current UK guidlines issued to GPs by the psyciatric 'experts' recomend not carrying out any medical testing to rule out other illnesses once ME is suspected, as it only 'encourages' the patient to think of themsleves as ill, and, in addition 'excessive' booking of medical appointments is to be 'strongly discouraged'.
The final possibility is that I somehow did something wrong when I booked the appointment - but I got a proper confirmation message, and kept it up on screen for ages, as I tripple checked that I was translating 24 hour clock time accuratly into normal clock time. I wrote 'twenty past 4' very carefully in my diary, and clearly remember looking over and over again at that confirmation screen. Correct day, check, correct month, check, correct GP check. 16.20 - yes, that means twenty minutes past four. Check. There is no dount in my mind that the booking did initially go through. It just got cancelled somewhere between the Saturday that I made it, and the monday that it fell on 9 days later. For good reason or bad. Becasue of techno-fail, or to 'strongly discourage' me from making 'excessive' GP appointments (it would have been my fourth of 2011. Is that excessive? Quite seperatly form this debate, I've always found these things hard to judge. How often do others visit thier GP?)
What to do now. Well, there is no point seeing any other GP in that practice - as they will inisst that I see Dr. Adayeye, as she has been following my neuro illness. She's got no more bookable appointments until after I move - and that was of 2 weeks ago, so certainly none now. so, I'll simply move, and have no actual reason to ever be in contact with that GP surgery again.
if the chest infection lingers, or hits my nose badly, I'll have to go to a walk in clinic for an anti-biotic. But I'm not running a feaver so I may be able to avoid that.
Once I move I'll have a think about what to do about a new doctor. Like so many people I know nowadays I might just short-cut the beaurocratic nightmare of having a GP and only use walk in clinics. They are the only places where you can get to see a doctor *when you actually need one* anyway. But could I get my B12's through a walk in clinic? i'll look into that, and if the answer is yes, I don't see any purpose in signing up for a new GP. But speaking of which, I'm due another one this week or next - so I suppose I'll just have to head down to the nightmare that is Honour Oak Medical Clinic one last time, and make an appointment to see the nurse. Becasue if I move first and don't know how to go about getting one in the new place, I know myslef too well. I'll let it ride, and let it ride, and not deal until it reaches a crisis, and thats probably not for the best.