Why would I want to?

I hate days that start with “I’m waiting”, but that’s exactly how yesterday started, waiting for the doctor to call. Actually, if I am being honest, it wasn’t quite the start of the day. At the start of the day, I found myself in excruciating pain. It was terrible, but I knew that for once, it was a productive pain as within half an hour of getting up, I was heading to the loo as fast as I could. Unlike last week, firstly I wasn’t having to resort to a suppository and secondly, I managed to pass a really good amount. Somewhere in my stupid little head, I found a logic, a logic that said that maybe, that was what had been, behind the worst of the pain. It was the same logic, that stopped me picking up the phone earlier, despite the fact I had had 3 hours of pain, before getting out of bed. Yes, I know that reading that makes no sense what so ever, but you have to remember one thing. I am the owner of a human brain, as such, I will try to kid myself, over and over every few seconds, for as long as it takes, that’s the problem with being human, we’re basically stupid. So now I am waiting, again.

The longer that you are ill, the more that it appears, we become stupid. Personally, I think it’s because we quite simply have had enough to deal, with when it comes to our everyday health. When something else comes along, well, the stupid factor comes into play. For me, the stupid factor is easy to find and even easier to name, the hospital, or rather, having to go to the hospital. There isn’t one aspect of that situation, that isn’t problematic, for me. Yes, I know that sounds stupid, but it’s just the way it is. From the very moment, my GP says to me, that he is referring me to this clinic or that one, it starts. All these barriers start to appear, barriers that cause me stress and it just grows and grows. The first in line is asking Adam to take more time off his work, to accompany me there. It doesn’t matter that he is entitled to take time off to go with me, he stresses, quite rightly, about taking too much time off. So much so, that it isn’t unusual for him to actually either take it as a holiday or without asking or being told, he will make the time up. It doesn’t matter what the law says, or the fact that he himself works for the NHS, he worries about the whole thing. As an ex-manager, I fully understand his worries. I have in the past myself had to manage staff taking time off for such things, and despite the law is technically on their side, they can still be given official warnings about their attendance. The idea that I might be the reason, he might be put in that position, is only my first hurdle, but it’s a big one. Yet, I have to have him with me, as the very idea of heading out on my own terrifies me.

The stress of having to deal with all those people, starts long before the Ambulance arrives, it starts the second, I know it’s going to happen. Take me out of my comfort zone, and I can’t cope. I quickly start to feel agitated. The outside world is a daunting place to be when, your are forced, to sit in a wheelchair that you have no control over. That tiny element, of being out of control of where I am going, is hard to deal with alone. Add in that people want to talk to me, and I have to answer them, freaks me out. I can talk without stress to people I know. To my family, my doctor and so on, but strangers don’t always allow for my stuttering, my inability to find words and you never know which sort you will meet, that knowledge alone, makes it even harder. I get more and more agitated the longer I am away from the house, as I know it’s only a matter of time before I have to speak to someone.

Just getting ready to go, is one of the things that has always told me, that even if we lived in a ground floor flat, I still wouldn’t be able to go out. Every day, I sort of dress. Pyjamas and a dressing gown, getting dressed to go out is a totally different ball game. By the time I have worked my way through the whole process of clothes, make-up and hair, all before 8 am, I quite simply want to go back to my bed. Even when on my last appointment, I trimmed it all down, I didn’t feel any better. Being dressed, making myself look that touch more human than normal is enough, to exhaust me, so no, I don’t have the energy for the rest of the day, before it even arrives. Even without the stress of going to the hospital, I know without a doubt, if we lived in a ground floor flat, I would still never leave the house.

The Ambulance service do their best, but they too are part of the problem. All appointments are made for the morning, so you have a window from 8 am on, that they will pick you up. Often, they actually arrive, later than your appointment was made for. Granted, you are always seen, but for me to be late by even a second, I find unacceptable and always have. My arriving half an hour late for an appointment is mortifying. Then there is the stair-climber. The contraption from hell, that bumps you around like an out of control fairground ride. I defy anyone, not to feel sick after one flight of stairs, never mind six. I hate it with a passion, but it is the only way out of and back into my home. Occasionally, the ambulance doesn’t have one. Then you’re held up even more, as they have to call a second crew, so they have the safety standard of four people to carry me. I already have the experience of them not being able to find one ambulance to take me home at all, we have then had to sit waiting. Not just for an hour or so, but hours, the latest I have been brought home, was just after 7 pm. The stress wrapped up in all of that, is enormous, and I haven’t even mentioned the actual appointment.

Any appointment with a consultant is because something is wrong. You don’t just pop by for a chat, there is always a reason, even if it’s a return visit. The core of stress is always going to be there, and you don’t have the slightest idea, if you’re leaving with more trips for tests and so on, or immediately with a new condition and new medications, or waiting for an operation. One way or another, something will be there at the end of that day, even if you leave with no conclusion, you’re leaving with the problem you entered with, and that believe me, that, can be far worse. Whatever the conclusion, you leave that room still faced with the process of going home, followed by the process of trying to return to normal, something that doesn’t happen quickly. This is probably the biggest thing that says to me, no matter where we lived, I still wouldn’t be able to go out. That single day, even if it runs totally smoothly, which occasionally it does, it will still take me days to recover. Going out, just isn’t worth it. Going out to the hospital, is unavoidable, and often lands up feeling like some kind of punishment for being ill.

While I was writing, the phone rang. I am waiting, as I expected, my GP is sending once again, back to the hospital, so I’m waiting, for yet another appointment. My GP is putting me onto some stronger antispasmodics, to take on the days when things are bad, to see if they make any difference. So now, I’m waiting for one prescription and three appointments. Two later this month, and another, well who know when I just have to wait and see, when it arrives. Waiting seems to be another symptom of chronic illness, as at times, it’s all we ever seem to do.

 

Please read my blog from 2 years ago today – 01/03/2014 – On my own two feet

I remember watching an interview with some celebrity, forgive me but well names aren’t exactly my strong point, not just now but forever, her sister had been ill for years and no one had the slightest idea what was wrong with her, despite endless tests. As her health had deteriorated she had expressed an interest in going to India and an opportunity arose for them both to go there. The celeb was there……

 

 

 

 

 

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……

 

 

 

 

 

 

 

Avoidance issues

I just spoke to my Doctor and it was a phone call that has left me rather angry. It appears that he miss read the letter from the pain clinic and their suggestions of how to change my pain meds. Right now I am taking 900mg of Gabapentin three times a day. When I phoned the doctor last week, it was to see if I could get this raised, as I was sure that there was still room to increase it. I had this vague memory that when I was at the pain clinic, that they said this was one of the options that I had. I was rather confused when the doctor said that I was already on a dose that is above the recommended and that I clearly couldn’t have any more than that. It appears that the clinic recommended that it was raised to 1200mg three times a day, that was 18 months ago. So as of lunchtime today, I will be taking the new dose for a period of two weeks to see if it is enough to bring my pain under control. If it doesn’t, apparently, they also suggested that we try changing it to Pregabalin if that fails. I’m angry because the way he told me this today, it sounds as though I should have had the raised dose of Gabapentin ages ago, after all, I went to the pain clinic because my pain was rising. My GP, at the time, wanted to raise my Morphine, by I chose to stick to using the booster pills, as they gave me greater personal control. It has worked fine until the last six months, when I have struggled, not wanting to mention it, because of my fear of having to take even more Morphine. Normally, he is a great doctor and I have no problem with his care of me, but this, well this has angered me. I really wish that when a consultant writes to a GP, that they also sent a copy of the letter, to the patient, that way, I would have known all this and not relied on his memory. It’s totally unfair to ask a GP to remember every detail, of every patient that they have.

Over the last few years, all the old-fashioned paper notes have been transferred to computer systems. Understandably, but unfortunately, the GP system is totally separate from the hospitals one. For a very long time now we have had the right to see our notes on request, which means that you have to go to them, to be able to look through our notes. Being housebound, means that despite having the right, I can’t carry that right out. With it all being computerised, I personally believe that we should all be issued with log-ins, and be able to look at our notes whenever we choose. For someone, like me, who has a complex array of conditions, it would mean that I could keep track of all notes added, all suggestions, and what has already been tried. Consultant only writes to GP’s, either if they have prescribed a new drug, or when they have signed you back into the care of you own GP. Of course, GP’s only ever write to Consultants, when they have a patient they want them to see. The result is, that much is missed by both sides. I wouldn’t have missed these suggestions and I could have spent my time, assessing what might work best for me, plus I would be armed with all the details, that I have long since forgotten. I have forgotten so much, that different doctors ask me about, like the names of the drugs I have already tried, when and what one doctor said about something and so on. I have the time to arm myself with the info, that might make my future treatment, just that bit better. Although I have great faith in my doctors, both my GP and those I see at the hospital, the gap between the two is becoming, more and more visible as time goes on. It’s a gap that I feel I could fill, as could many with multiple conditions.

Clearly, from what I have just written there, I have removed the Duloxetine from medicine list and returned to my normal dose of Amitriptyline. Last night, for the first time since I took that first horrid little capsule, I slept right through the night until at 7:30, when I had to get up to go to the loo. I know I could have gone back to bed, but I decided to stay up, as not only had I slept through the night, but I also actually felt more awake than I had for days. The last four nights supplied only half the night in a deep sleep, and the other half, in a fitful half world, as unpleasant as the days that followed. Today, I feel like me, and that is a really good feeling. To me, I have just wasted 4 days of my life, because of my doctors mistake, as when I spoke to him last week, my request was for an increase in my Gabapentin, not a new drug, that would shred me into pieces. Mistakes happen, but that doesn’t make them any more pleasant.

Those who read my post from two days ago will know, that I had one of those horrid light bulb moments. The words “palliative care” appeared and I was hit between the eyes, by the fact I knew that the day I went onto Morphine, all though they didn’t say it, that I was at the end of the road. It’s amazing how when promoted to think of our care in one way, rather than another, that we happily carry on kidding ourselves. I remember at the time, briefly thinking this is the end, but my doctor waffled on about how there were still options and possibilities, although they didn’t name them. Clearly, their waffle was intended to pull me away from thinking I had reached the point when palliative care, something which is normally linked with the end of life care, was needed, and it worked, partially. Yesterday, that wall crumbled and I spotted the unspoken truth. Oddly, rather than pulling me down, it has left me in a very calm and subdued state, almost as though it removed not just a wall, but one that had spikes on its top. I feel as though the confusion of questions that didn’t quite make sense, are starting to solidify and showing the roots I need to go down, to put them to rest.

I have also been given a few pointers by several different very kind people, I know it’s not like I can make a list, this is an organic process, one that I will, of course, share here. I have also realised, that whether Adam wants to talk about it or not, he will have too at some point, just as I am going to have to get involved with groups like social workers, who I have body swerved at every turn. I’m getting ahead of myself, they aren’t top of my list, but they are on it, yes, I’m still avoiding them, but just like death, there are something’s in life, we can’t avoid forever.

 

Please read my blog from 2 years ago today – 13/01/2014 – Spasms are not what you think

I woke this morning on a bed that didn’t have the upper mattress hanging 3 inches over the edge of the lower and an elevator that lifted both sided of the mattresses at the same time. Adam and I pulled the webbing…..

Healthcare minus the true care

Weekends are the strangest animals and by far the biggest oddity of illness, when it comes to the day of the week. I know that my own personal, skewed view of them, is outside of the norm, I know this, from what I’ve gleaned from others. Most see them as important, a party time for families and friends, to be enjoyed as one, but without a doubt, it was family and their impact on my as a child, that set my view. My childhood was extremely regimented. There didn’t feel as though, there was a moment of my time, on any day of the week, when I wasn’t doing something, usually something I didn’t want to do. School, obviously; followed by either piano, lessons and/or practice; working in my grandfather’s shop, both before school and on Saturday; doing chores; art classes; visiting relatives, always boring; Sunday school, church and walking the family dog. I never had an afternoon, far less a day, even at the weekend, when life wasn’t totally regimented. Time with friends, actually, what friends, at least not until I was a teenager, and even then, none were allowed to come home. From 14 to 16, I had a brief window of freedom, when weekends were as close to what I thought they should be. Then they vanished again. It wasn’t enough for me to work all week, so I had my first stint as a nightclub DJ, which brought weekend fun and then all too soon, my first husband into my life. With him being a Royal Naval Officer, life was once again regimented and weekends, what on earth was one of them, they were all once again, just days, especially when we had two small children. When we split, I first worked in a bar. No weekends off there either, then I went back to years of working as a DJ, enough said, followed by working for British Telecom, who’s lines never close, so no weekends again. I was well into my 30’s when at last, I was an Operations Manager for a normal Monday to Friday company. What did I do, I brought in weekend working. My PRMS, actually at first brought weekend, proper weekend. I was forced into taking time off, no work and better still, without anyone telling me what to do, but note I said at first.

As I said, people around the world, look forward to weekends, in one way, I do, it means Adam is at home, but there is now something that hangs over them, that takes that shine away, especially if I’ve had a tough week. Like anyone with chronic illness, I have done my fair share of time in hospitals. There is one thing about being an inpatient that strikes you quite quickly, weekends are completely different from weekdays, but not in a good way. There is no comparisons, the cleaners who usually annoy you by keeping you awake using noisy machines, are gone; anyone who could be, has been sent home; not just are there fewer patients, there are fewer nurses; and the snap to attention visit from the gods, otherwise known as consultants, have gone too. There are no consultants, often no registrars either, just junior doctors, all rushed off their feet, as they try to cover whatever ward needs them right then. Well spotted, I’m not in the hospital right now, so why is this of any importance. It’s that nagging knowledge; there in the back of your mind; that statistic you heard from the evening news; about how your more likely to die, if you’re admitted to a hospital, at the weekend, than any other time. Every weekend holds those threats, the knowledge that if an ambulance needs to be called, and that should the Accident and Emergency staff decide you need admitting, you’re just going to lie on a ward, waiting for Monday, not fully treated, just watched for the gods to return.

The working practise of our hospital system never bothered me that much until recently. It was my COPD exacerbation back in June that first put it in my head, where it has been festering ever since. I am not sure how I would do it, but without a doubt, I would find a way of not leaving the house before Monday, even if I thought I was dying. In fact, if I thought I was dying, I would wait until I was sure, as my chances are higher of living, while in the care of the ambulance crew and the A&E staff, than on any ward. I never felt this way until recently; yes, I have always known that nothing happens in any hospital over the weekend; no surgery; no consultations; nothing major; but I did always believe that it was the place to be, if you are truly ill. A ghostland or not, I have always believed that you were always taken care off and there was always the right people called if needed, yet now, I have my doubts. I don’t know what the stats were in the past, but the ones bandied about now, sound horrific. Then when I heard a doctor saying that it was the parents faults for not coming in during the week, I really began to wonder. Apparently, people don’t want to take time off work, get too ill, and then die at the weekend in the hospital. Really? Personally, I would have thought most don’t want to waste their weekends, waiting for none existent Doctors.

I am usually a reasonably level headed person, yes, hospital staff need their time off with friends and family like everyone else but is this practice, of virtually closing down at weekends, really safe, or in line with the rest of our 24/7 world. As I laid out in the first paragraph, there are loads of reasons why weekends don’t exist, surely medicine should be one of them. I don’t understand, how anyone would enter the medical profession at any level, expecting to have Christmas day or New Years off, any more than I did, when I started working in a bar or as a DJ. When I was DJing, the second time around, I didn’t even have a day off at one point, for a whole 3 years and not a single holiday for 7, it goes with the job. You take the money where ever it comes from, whenever it’s offered. Neither of those roles is exactly life-saving, or vital, medicine is. I’m not saying our hospital staff should work that way, but I’m saying for the umpteenth time, that the system needs changing. Any system, that leaves people actually worried about becoming even more ill than normal, on certain days of the week, has to be wrong. It doesn’t matter if it is the hospital, or my normal pitfall, a GP surgery that has a half day mid week, isn’t working for their customers, the patients. The greatest problem with the NHS is the very thing that we all love about it, it’s free. If all hospitals and GP’s were commercial enterprises, rather than funded through government, they would be very different. It isn’t always about throwing out what is there and starting again, but in the case of those who are managing the NHS, I don’t think that would be a bad thing. If they brought in several of the CEO’s from big business to run and restructure it, along the line of good practise and good business, ultimately, it would become a safer and better place for both patients and importantly, the staff.

Any medical system, where ever it is in this world, if it leaves it’s patient fearing the days of the week because they can’t get the care they may need, is failing. From documentaries, social media and personal experience and feelings, that is exactly what is happening in the UK. I dread every weekend. I never used to look forward to them, but until now, I never dreaded them either. In June, I remember all too clearly, literally lying in my bed on Friday morning, trying to work out, if I should give in there and then and call an ambulance, or could I make it to Monday, that’s wrong. Right now, I am not that ill, but I still look at the weekends as a danger zone, somewhere to not enjoy myself, but to take extra care of myself, simply because I know, the care I might need, just isn’t there. That can’t be right.

Please read my blog from 2 years ago today – 08/11/2013 – Where to next

I swear this house is dropping 10 degrees daily. Despite giving in and putting on the heating a last weekend, I have been forced to tweak it up slightly each day in the hope of finding the point where it can…..

Changing our health thinking

My pulse rate and oxygen monitor arrived yesterday and so far it has been an eye-opener. The maker says that it can be accurate within a 2% plus or minus range but even allowing for that, I have been rather surprised. A normal oxygen level is seen as anything between 95% and 100%, for one brief measurement I did hit 98% for a few seconds, but it didn’t last. I have been putting it on and off my finger at different points throughout yesterday and this morning and it appears my normal is between 90% and 94%. This morning I have been checking every 15 mins since I sat down here at my PC, it is solidly at 90%. The highest it has been and stayed there for a few minutes was 95%, but again that didn’t last for more than about 10 minutes then it dropped again. The best results have always been just after I have been up and about. The muscles in my chest often seem to be less tense during and after what is the closest I ever get to exercise, walking back and forwards through the flat. Every result that I have achieved over 95% were all straight after I had been on my feet. The longer I have been sat, the worse the muscles seem to get and down goes my oxygen levels in line with it.

Lying down is a great trigger for my chest muscles going into spasm and just before I go to sleep, I often feel really odd. I also have odd sensation in my face, hands, and feet. Basically, it is an intense tingling. What’s odd is that I get what feels like a twitch at the end of my nose and the triangle formed by my nose and mouth is the most intense area and often feels somewhat cold as well. There is often a buzz in my head and I sometimes even feel sick. I took the monitor to bed with me when I went for my afternoon nap and luckily, my body co-operated. My diaphragm and intercostal muscles started to tighten, the sensations quickly followed. Although it is on the edge of sleep I pulled myself back and looked at the monitor I had placed on my finger when I first lay down. The reading was 82%. I know that a one-off means nothing, so I settled down to repeat it last night. Nothing happened. I had to give up after 20 mins as I needed to go to sleep, but it was the first thing I checked when I woke to find it was at 89%. Those are not good results in anyone’s book. Although the opportunity hasn’t appeared yet, I often feel sick during the day. I know that it is one of the symptoms that goes hand in hand with my MS, but I think it might be worthwhile testing during the next spell that occurs.

I have less than 24 hours of checks, but even if it isn’t as accurate as hospital monitors are, it still shows that what I believed is true, my oxygen levels are low and all over the place depending on the tightness coming from my spasms. It does though cause me one of those quandaries, do I tell the consultant what I have been doing, or do I just tell him how I have been feeling, as that is what prompted me to buy it? I know from experience some doctors really don’t like us doing things like this. They seem to see it as their job and not something we should even be thinking about trying to do at home. Mind you, I am sure that they are more than aware of the fact that these monitors are now available and at a price most people can afford. That though doesn’t make the answer any easier.

The monitor of course also shows my heart rate, not that I think there is anything wrong with my heart, but it has been just as interesting seeing what it’s results have been. So OK the results could have been better, everyone’s could be better, but taking into account that I have spent the majority of my life sitting down for the last 10 years, a resting heart rate of 84 – 88 doesn’t seem too bad. What I was impressed by though was how much I could make it fall by just using my relaxation techniques for a couple of minutes. I have brought it as low as 78, but it jumps back up almost as soon as I stop, it’s not as though I really needed any proof that it’s works, as I knew that anyway, but there is the evidence if it was needed by any doubters. I think it could be quite interesting to test that one on a longer time scale as I really wasn’t looking at it when I was lying down. As you might have guessed, I am rather taken by my new toy. I really do love anything that measures, quantifies and proves anything. It could be why I so loved my last job, working with stats and building computer programs that made getting those results fast and efficiently, was right up my street. My analytical nature has been limited to my body for the last few years, so having a tool that helps, just makes things more interesting. I wonder what I could find out there if I looked?

I am sure if you asked a doctor that they would say that none of these monitors that you can now buy online, nor any of those health kits, are a good buy for anyone. I understand their concerns, as without the knowledge and research behind what the results can really mean, could cause a lot of distress for some people. I see things like the monitor as actually totally the opposite. When you know, I mean really know, once you have a diagnosis and you have spent time reading and absorbing medical sites as well as those intended for patients and their blogs. I believe gadgets actually put your mind at rest. That was what drove me into buying it in the first place. I have been feeling so ill and so wrong at times and my worry levels, which, of course, lead to stress, were high. I needed to know. Strangely, like most people, I don’t have a pet doctor in my cupboard. Not so strangely, doctors don’t like you calling ever thirty minutes to talk about your symptoms, especially in at three in the morning. If there are gadgets that can actually show you how whatever part of your body is worrying you, is working fine, how can that be bad. And if it shows you that you have something wrong that needs more investigation, well again that has to be good, as you are not blindly putting up with something that needs treating. I do understand their fears that we start self-diagnosing and then self-prescribing incorrectly. but that is a long way from what I am talking about.

I know that there are a lot of things that the conditions I have can cause problems with other areas and organs in my body. For example, COPD can actually cause huge problems with your kidneys. If there was a simple test that I could do, that would show if there was a problem forming and that I needed help, rather than my blindly going on until the damage is done, I could call the doctor. To me that is perfect sense, I think it would be to most people in this world who have COPD. By the way, my oedema isn’t even bad enough just now for me to bother taking my Furosemide. I am not a doctor or a nurse, but I am also not stupid, show me and I learn. With the medical system under such strain these days, I would have thought that any testing or even just monitoring, that those of us with chronic illness could carry out at home, that would mean we didn’t keep returning to our doctors, would sound like a good idea to everyone. I am sure that most of us are capable of taking our own pulse and blood pressure supplied with the correct and what are now cheap tools. I don’t know what the cost of a visit to our GP or even practice nurse is to the NHS, but I bet the amount of visits that many seem to have, would pay for them quickly. Rather than visiting the practice weekly, their visits could be reduced to monthly, or even reduced to just a phone call. On top of that, being in control of your own health, is empowering and that always makes you feel more positive about the whole thing.

I think the time is coming where we all have to start thinking about what we can actually do for ourselves, rather than what our doctors have to do for us. Yes, there will always be things we can’t do, but we are more capable than many of us think. It is not just us that has to accept the changes that technology has brought to our fingertips, doctors do as well. It is a matter of just getting used to it and accepting it as part of normal life. We and Doctors have done this in the past and we can all do it again. Think about it, when did you ever hear a doctor complaining that we aren’t capable of using and understand a thermometer, most other health monitors are no more complicated.

P.S. I have just been reminded that not everyone who reads is from the UK. I should have added this, an answer I left to a comment….

“In the UK we have the problem just now that our doctors are over whelmed. In some place you can’t get an appointment for up to a month. It has meant people presenting a the emergency department and overwhelming hospitals. Frequently some have had to close their doors for several hours to all emergencies. It is a huge issue in the UK.

The NHS can’t even find enough GP’s to cover some areas in the country at all. Reducing their work load is needed quickly as too many are leaving the profession as they simply can’t cope working 70 plus hours a week. Not to mention that the government now want’s surgery to be open 7 days a week instead of just 5. Something is needed and needed now.”

Please read my blog from 2 years ago – 06/09/2013 – Accept the mess

I really hope that I am not speaking in advance of something else going madly wrong, but my PC is now working, updated and back even better than it has been for months. I suppose all of us have that one item in their home that if it wasn’t there, they simply wouldn’t know what to do with themselves, well as you may have guessed this baby is mine. It really is total madness that as sentient……