Pain conditions are hard enough for those living with them to understand, let alone those fortunate enough to neither have a pain condition themselves nor to be living with someone who has one. Government statistics from 2013 show that approximately 15 million people in England alone are living with a long-term health condition. Many of those people will be experiencing pain of some description; in fact, several years ago the British Pain Society estimated that 10 million people across Britain were living with pain. If we choose to look at that purely from a financial point of view this means that millions of working days each year in Britain are lost due to pain. That alone should be cause enough for pain to be openly discussed, yet it remains one of the most taboo health issues around.
There are a huge variety of reasons that someone may be suffering from pain, ranging from an acute form such as a sprain or broken bone which will be fully healed in a matter of weeks through to chronic forms which may remain for the rest of a person's life. People may experience regular flare-ups of pain every four to six weeks due to painful periods, for example, or have neuropathic pain which is present all the time. It is individual and will vary person to person, even where the cause is the same. The only real way of knowing just how someone's life is impacted by pain is to talk to them about it. Yet here in Britain we tend to shy away from actually discussing such matters. Oh, we will casually ask if someone is alright, but what most people really want to hear in response is "I'm fine, how are you?" There is often some rather obvious discomfort if a person living with a pain condition answers truthfully and begins to enthusiastically discuss their pain.
Possibly because we have so many wonderful medical treatments around now - thank goodness - it is often assumed that pain can be completely controlled by medication. People can be forgiven for believing that someone living with pain is guilty of exaggeration, because surely with all the medication available nowadays, pain can be controlled?
The sad truth of the matter is that many pain patients continue to suffer awful and debilitating levels of pain, some of which remains a mystery to doctors. For people like me who have a combination of several different pain conditions and take a variety of medication, the pain remains a very frustrating symptom.
So why is talking about pain such a taboo?
In all honesty that is a question that I cannot answer without a serious amount of research. I suspect though that there is an element of embarrassment there, a feeling of not knowing whether or not people are 'supposed' to ask personal questions about an individual's pain and perhaps plain discomfort at seeing someone else in pain. Certainly I know that my mom hates to see me in pain, as does my husband who is my full-time carer. His way of dealing with it is to be as proactive as possible by doing things such as learning to administer IM injections of pain reliever for those times when the pain become really unbearable, which has definitely made a big difference.
I would like to talk to someone else though; not just about the pain and how it impacts on my life, but also just about the world as a whole. That would be pretty spiffy actually, if someone came to visit me and just chatted.
Does anyone have any other ideas why pain is such a taboo discussion topic?
Monday 8 December 2014
Monday 24 November 2014
Summer and winter
For the past ten years I have been living with numerous symptoms related to chronic illness. I suppose that although getting a diagnosis was - and is - important to me, it is the symptoms that really count. Those are what decide what I can and cannot do. I was diagnosed with fibromyalgia in 2006, though not all my symptoms stem from that or fit into the medical model for that condition. Also listed on my diagnosis list are endometriosis, migraine, pain amplification syndrome, asthma and neurological issues including numbness, tingling and cognitive and speech impairment. Yeah, I know, I sound rotten to the core!
Pain amplification or centralised sensitivity are fairly common in fibromyalgia; I found quite an interesting article on it here pain amplification. Basically for me there are times when even my clothing feels like a sander being moved over my skin, a touch on the arm can feel like a punch. Pain is probably the biggest symptom that I have, but surprisingly it isn't the one that I find most difficult to manage. There are things I can do to limit or manage my pain, such as wearing certain types of clothing or adjusting my (very limited) activity levels.
The symptom I struggle with most is fatigue. There are hundreds, thousands, of articles and pages of information on the subject of fatigue. For me it isn't just exhaustion but also muscular fatigue - I feel as though I have just finished running a marathon with lactic acid surging through my muscles, when in reality I have perhaps done as little as turn over in bed. It isn't always just that, obviously because it is a variable condition sometimes I am a little better and can maybe make it out of bed and into the living room (thank goodness everything is on one level!) There are some rare occasions when I actually make it out of the flat, although that is mostly when I have medical appointments.
Yet last summer I found that when we had a couple of weeks away in Wales I was able to be out of bed almost every day and sit in one position for longer periods of time. I still couldn't walk more than a few metres even with both elbow crutches, but being out of bed that often, that's a big deal for me. Anyway I deteriorated rapidly when I came home again and had a really very bad, very painful winter where I seemed to need injections of additional pain relief on a more regular basis; something I had been trying to avoid. I had a pretty rough time of it and was feeling incredibly fed up come Spring.
We decided that it would be interesting to perhaps spend a little longer in Wales and see whether there was an improvement over a longer period of time than a couple of weeks. I wasn't well enough to go to Wales until the latter half of the year. However when I did go I found that I improved again. Once more I was able to sit for longer periods of time and was able to be out of bed most days. My asthma was far less significant, though I still found that I had quite bad reactions to things as silly-seeming as the smell of clothes washing products, spending a good fortnight having to use the inhaler far more frequently again.
My improvement this time wasn't as much as last time, though that could just be because I've deteriorated further again. I didn't have asthma this time last year, yet this year I have reacted to so many things. The improvement that I did have did last however and I felt much, much better just being able to breathe fresh air.
Back here and I once again deteriorated significantly. In an ideal world I would move to Wales and at least have a little bit of a better quality of life. Although I feel like I have worked hard at trying not to let medical conditions rule my life over the past decade, the reality is that things are getting worse. I have achieved a lot - two degrees, both 2:1, a diploma and graduate level certificate, as well as volunteering (though I haven't been able to do that for around 2 years now). I would love to do a Masters in Children's Literature that I have seen, as I achieved a distinction in that particular module of my latest degree, however just completing that final module was a serious struggle. My tutor kept contacting the University on my behalf trying to find more support for me and more alternative ways of allowing me to study but by the end of the module I was in serious trouble. It was a huge relief in many ways to reach the end of studying.
Right now I don't have anything to focus on, which is something that I think I need. On the other hand I have deteriorated so much that I just don't think I can manage anything else. It is going to be interesting to see how I am over the coming winter and whether I remain at my current state or whether I get worse still. I am crossing my fingers that I stay where I am. I suspect that getting any worse is going to start to impact my mental health as well as my physical health.
Pain amplification or centralised sensitivity are fairly common in fibromyalgia; I found quite an interesting article on it here pain amplification. Basically for me there are times when even my clothing feels like a sander being moved over my skin, a touch on the arm can feel like a punch. Pain is probably the biggest symptom that I have, but surprisingly it isn't the one that I find most difficult to manage. There are things I can do to limit or manage my pain, such as wearing certain types of clothing or adjusting my (very limited) activity levels.
The symptom I struggle with most is fatigue. There are hundreds, thousands, of articles and pages of information on the subject of fatigue. For me it isn't just exhaustion but also muscular fatigue - I feel as though I have just finished running a marathon with lactic acid surging through my muscles, when in reality I have perhaps done as little as turn over in bed. It isn't always just that, obviously because it is a variable condition sometimes I am a little better and can maybe make it out of bed and into the living room (thank goodness everything is on one level!) There are some rare occasions when I actually make it out of the flat, although that is mostly when I have medical appointments.
Yet last summer I found that when we had a couple of weeks away in Wales I was able to be out of bed almost every day and sit in one position for longer periods of time. I still couldn't walk more than a few metres even with both elbow crutches, but being out of bed that often, that's a big deal for me. Anyway I deteriorated rapidly when I came home again and had a really very bad, very painful winter where I seemed to need injections of additional pain relief on a more regular basis; something I had been trying to avoid. I had a pretty rough time of it and was feeling incredibly fed up come Spring.
We decided that it would be interesting to perhaps spend a little longer in Wales and see whether there was an improvement over a longer period of time than a couple of weeks. I wasn't well enough to go to Wales until the latter half of the year. However when I did go I found that I improved again. Once more I was able to sit for longer periods of time and was able to be out of bed most days. My asthma was far less significant, though I still found that I had quite bad reactions to things as silly-seeming as the smell of clothes washing products, spending a good fortnight having to use the inhaler far more frequently again.
My improvement this time wasn't as much as last time, though that could just be because I've deteriorated further again. I didn't have asthma this time last year, yet this year I have reacted to so many things. The improvement that I did have did last however and I felt much, much better just being able to breathe fresh air.
Back here and I once again deteriorated significantly. In an ideal world I would move to Wales and at least have a little bit of a better quality of life. Although I feel like I have worked hard at trying not to let medical conditions rule my life over the past decade, the reality is that things are getting worse. I have achieved a lot - two degrees, both 2:1, a diploma and graduate level certificate, as well as volunteering (though I haven't been able to do that for around 2 years now). I would love to do a Masters in Children's Literature that I have seen, as I achieved a distinction in that particular module of my latest degree, however just completing that final module was a serious struggle. My tutor kept contacting the University on my behalf trying to find more support for me and more alternative ways of allowing me to study but by the end of the module I was in serious trouble. It was a huge relief in many ways to reach the end of studying.
Right now I don't have anything to focus on, which is something that I think I need. On the other hand I have deteriorated so much that I just don't think I can manage anything else. It is going to be interesting to see how I am over the coming winter and whether I remain at my current state or whether I get worse still. I am crossing my fingers that I stay where I am. I suspect that getting any worse is going to start to impact my mental health as well as my physical health.
Monday 17 March 2014
Yours sincerely, Disabled from Dudley...
This is not the most important thing that Dudley Council
will ever fail on, it is not even the most important thing that will happen
locally today. But if the council can fail a disabled resident on something as
simple as this, what else are Dudley's disabled residents being forced to waste
time and energy repeatedly chasing up?
When the bin wagons rolled past in February delivering the
new wheelie bins it never occurred to us that while all our neighbours would
receive their delivery, we would not. It wasn't until an hour later, when my
husband decided to double-check, that we realised that we had been missed out
yet again, along with three out of our four upstairs neighbours. We telephoned
within the hour, as the bin wagons continued to deliver in our neighbourhood.
A week later we phoned again. Then again and again. With the
new collections starting today and refuse sacks no longer being collected, we
still have nothing to show for our six phone calls but empty promises and
repeated fob-offs. In the two phone calls made last week we were repeatedly
promised "By the end of Friday at the latest". Prior to that we had
been told that the waste management department would contact us and that they
should have done so within two days. We were told that particular issue had
been escalated way back in phone call number two. We still haven't heard from
them and frankly don't expect to.
Today I was forced to
get creative; nothing else had worked - so I shouted. I let my frustration and
anger show through and demanded a call back from a supervisor within the hour. That,
at least, worked. I have just received my call back from the duty manager on
the Dudley Council Plus helpline, who is going to speak to the waste management
supervisor and phone me back again. I have told her that I will keep my local
council updated with progress.
Yet, right now I am still sitting here, a disabled bed-bound
resident in a Borough that can't seem to manage something as simple as delivering
a wheelie bin. As I wonder what on earth I am supposed to do with the refuse on
collection day tomorrow, I am also wondering what is happening to other
disabled residents within the Borough and just how badly they are being failed
by the council.
I have been encouraged to contact local councillors and/or the Express and Star local newspaper. What do you think?
Saturday 4 January 2014
The turning of the wheel...
Firstly I want to wish someone well. I wish them peace and healing from the anger and pain they hold inside them. I hope and wish that they are able to find peace in their lives, I hope and wish that they are able to find a balance, to find peace before the anger pushes away everyone who cares about them. More than anything I hope that doesn't happen, because this person is desperately in need of support and love.
It has been an interesting week to say the least. I have lost a friend whom I have known for six years now, someone I met through the Open University and the wonderful community of disabled and chronically ill students there. I was extremely shocked and hurt by something this person said and I responded in a way that, in another time, I may not have.
But in all honesty I have not been in the greatest frame of mind; one of my mom's best friends passed away on Christmas eve, a lady I have known my whole life. Although we knew she was extremely poorly it was still a shock. Thinking about her had lead me to thinking about my gran, who passed away a few months back, my nan whose birthday it was the day that Jan passed away, my father in law, the multiple terminally ill people I have tutored who are no longer with us and so on. I was also thinking about not being able to have children. In short I was feeling rather low and a little sorry for myself.
Still, I had been discussing population with other friends. I had been doing some research and was quite startled to see just how high the population density was in Birmingham in 2011. To me 4000 people per square kilometre is just mind blowing. How on earth can that be sustainable? How on earth can we grow sufficient food for population figures like that to be sustainable long term? Another friend put that into context by telling me that the figures for Kazakhstan is 4 per square kilometre. Wow. Now that is one heck of a difference!
Someone then mentioned the current world-wide population figure of 7 billion and the projected figure of 10 billion by 2050. I responded with shock to that "Wow. We are so fucked. We need to slow the breeding down..." (went on to mention finite resources). The response I received hurt me more than any online response to a discussion that I can remember:
"So which of my children do you want me to get rid of, or is the one that someone else killed enough for now?"
I did not think I deserved that. I still don't think I deserved that. I understand that the person is still hurting these many years after losing a child, that is something that I would imagine is always going to remain with them. I cannot imagine anything worse happening to a parent than losing a child. But...it is not fair to lash out at other people in that fashion, particularly when a completely non-personal conversation is taking place. To suggest to someone that they want people's children to be murdered? Particularly someone who cannot have children and is trying to come to terms with the fact that they never will, someone who has just lost someone; not a child, but someone who has featured throughout a lifetime. It isn't the same, of course it isn't. How could anything ever possibly be like that? But that was neither a fair nor acceptable thing to say.
In response I replied that I had not, nor would I ever say such a despicable thing. That I felt awful about what had happened to their own family.
I did however go on to say that I still feel - unrelated to the person's own family - that the rate that the world's population was increasing at was a problem. That with finite resources available it was unsustainable. We have so many people starving in the world as it is and this is only going to get worse.
The response I received was another angry, hurtful comment. I think that I probably would have simply ignored it, even feeling as low - and now hurt and angry - as I did, but for one particular sentence:
"I don't appreciate being blamed for all the ills in the world because I have a large family."
Um, I don't remember saying that. In fact, I had specifically pointed out that the discussion was unrelated to personal circumstances, that it was talking about population growth - not existing population and certainly not someone's personal situation.
As I say, on another day I may not have lost my temper at that point. Then again, I might. I'm still quite angry and very, very hurt by someone suggesting that I wanted their children killed or that I would be pleased that one had been.
I do have a copy of what I said and, if you remove the swear words, it was perfectly polite up to part way through. The swear words make it less so. I acknowledged that the person was/is hurting, again said that it was an awful thing that happened. However I pointed out that I had not deserved to be attacked in such a way, that I had not said anything to this person to prompt such a response, that I was having a discussion with someone else over the planetary population figures and that surely I was entitled to say what the fuck I wanted on my fucking wall without being accused of wanting to fucking well murder people's children. I said that while it was different (isn't it for everyone?) other people were grieving too at this time of year, myself included.
The person promptly 'un-friended' me after 6 years. Another time I would not have reacted how I did. I shouldn't have - what I should have done is remove the offensive post and sent a message explaining why I had removed it - in fact I did do this afterwards reiterating yet again how terrible the situation is and how much I feel for this person. That I have supported, backed, listened to this person time after time over the years; that I had considered them a good friend and still did. I haven't had a response and doubt that I will. This person did post a rather angry - and inaccurate - post as to why they had un-friended me on their wall - someone very generously sent me a copy via email...
This person has a tendency to react in a very angry and often negative way to posts that are not aimed at them. They have blocked people in the past, frequently make remarks about others aiming posts at them (when they aren't) and generally over-react to inconsequential things.
I am sad. I am. But - right now my biggest emotion is one of pity. I feel so sorry for this person. There is such a lot of anger, pain and fear that just spills out so often. I genuinely believe that this person is in trouble psychologically speaking, stuck in that terrible, terrible moment and unable to move past it. I cannot imagine how awful it was (and is) and I am worried for them. I can only hope that they find some balance in the future and wish them well.
It has been an interesting week to say the least. I have lost a friend whom I have known for six years now, someone I met through the Open University and the wonderful community of disabled and chronically ill students there. I was extremely shocked and hurt by something this person said and I responded in a way that, in another time, I may not have.
But in all honesty I have not been in the greatest frame of mind; one of my mom's best friends passed away on Christmas eve, a lady I have known my whole life. Although we knew she was extremely poorly it was still a shock. Thinking about her had lead me to thinking about my gran, who passed away a few months back, my nan whose birthday it was the day that Jan passed away, my father in law, the multiple terminally ill people I have tutored who are no longer with us and so on. I was also thinking about not being able to have children. In short I was feeling rather low and a little sorry for myself.
Still, I had been discussing population with other friends. I had been doing some research and was quite startled to see just how high the population density was in Birmingham in 2011. To me 4000 people per square kilometre is just mind blowing. How on earth can that be sustainable? How on earth can we grow sufficient food for population figures like that to be sustainable long term? Another friend put that into context by telling me that the figures for Kazakhstan is 4 per square kilometre. Wow. Now that is one heck of a difference!
Someone then mentioned the current world-wide population figure of 7 billion and the projected figure of 10 billion by 2050. I responded with shock to that "Wow. We are so fucked. We need to slow the breeding down..." (went on to mention finite resources). The response I received hurt me more than any online response to a discussion that I can remember:
"So which of my children do you want me to get rid of, or is the one that someone else killed enough for now?"
I did not think I deserved that. I still don't think I deserved that. I understand that the person is still hurting these many years after losing a child, that is something that I would imagine is always going to remain with them. I cannot imagine anything worse happening to a parent than losing a child. But...it is not fair to lash out at other people in that fashion, particularly when a completely non-personal conversation is taking place. To suggest to someone that they want people's children to be murdered? Particularly someone who cannot have children and is trying to come to terms with the fact that they never will, someone who has just lost someone; not a child, but someone who has featured throughout a lifetime. It isn't the same, of course it isn't. How could anything ever possibly be like that? But that was neither a fair nor acceptable thing to say.
In response I replied that I had not, nor would I ever say such a despicable thing. That I felt awful about what had happened to their own family.
I did however go on to say that I still feel - unrelated to the person's own family - that the rate that the world's population was increasing at was a problem. That with finite resources available it was unsustainable. We have so many people starving in the world as it is and this is only going to get worse.
The response I received was another angry, hurtful comment. I think that I probably would have simply ignored it, even feeling as low - and now hurt and angry - as I did, but for one particular sentence:
"I don't appreciate being blamed for all the ills in the world because I have a large family."
Um, I don't remember saying that. In fact, I had specifically pointed out that the discussion was unrelated to personal circumstances, that it was talking about population growth - not existing population and certainly not someone's personal situation.
As I say, on another day I may not have lost my temper at that point. Then again, I might. I'm still quite angry and very, very hurt by someone suggesting that I wanted their children killed or that I would be pleased that one had been.
I do have a copy of what I said and, if you remove the swear words, it was perfectly polite up to part way through. The swear words make it less so. I acknowledged that the person was/is hurting, again said that it was an awful thing that happened. However I pointed out that I had not deserved to be attacked in such a way, that I had not said anything to this person to prompt such a response, that I was having a discussion with someone else over the planetary population figures and that surely I was entitled to say what the fuck I wanted on my fucking wall without being accused of wanting to fucking well murder people's children. I said that while it was different (isn't it for everyone?) other people were grieving too at this time of year, myself included.
The person promptly 'un-friended' me after 6 years. Another time I would not have reacted how I did. I shouldn't have - what I should have done is remove the offensive post and sent a message explaining why I had removed it - in fact I did do this afterwards reiterating yet again how terrible the situation is and how much I feel for this person. That I have supported, backed, listened to this person time after time over the years; that I had considered them a good friend and still did. I haven't had a response and doubt that I will. This person did post a rather angry - and inaccurate - post as to why they had un-friended me on their wall - someone very generously sent me a copy via email...
This person has a tendency to react in a very angry and often negative way to posts that are not aimed at them. They have blocked people in the past, frequently make remarks about others aiming posts at them (when they aren't) and generally over-react to inconsequential things.
I am sad. I am. But - right now my biggest emotion is one of pity. I feel so sorry for this person. There is such a lot of anger, pain and fear that just spills out so often. I genuinely believe that this person is in trouble psychologically speaking, stuck in that terrible, terrible moment and unable to move past it. I cannot imagine how awful it was (and is) and I am worried for them. I can only hope that they find some balance in the future and wish them well.
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