For this post I want to focus on the unexpected gifts I have received as a result of becoming ill and having everything turned upside down. To clarify, I think it's important to continue to find things we can be grateful for in life but this is something quite different. What I refer to here are positive things that have happened purely as a result of dealing with being unwell.
I had a very traumatic childhood and lived amongst some quite horrific day-to-day events. I had to witness things that no child should be subjected to and I was forced to give up the normal care-free childhood and grow up too quickly. And yet, although I wouldn't in a million years want to repeat those experiences, I have always been aware that they brought their own unexpected gifts. I gained a level of maturity and sensitivity much earlier than my peers, I came to appreciate the immense importance of a home environment that is secure and full of love. I realised the damage alcohol abuse can cause and therefore greatly reduced my likelihood of ever having a drinking problem. And I developed a hatred of violence that made me someone who didn't see my fists as ways of resolving anything.
In the same way, getting sick recently has allowed me to receive positive insights that will also hopefully stay with me throughout my life. I have gained an appreciation of the simple pleasures that can lift my spirits. None of those things are related to how much money I have, what type of car I own or whether I have the latest gadgets or designer clothes. My cat wrapping her big bushy tail around me when I'm in pain or feeling down. The sound of raindrops on the window. Being able to walk across the room without being breathless. There are countless other examples but what links them all is that they are essentially free and often taken for granted.
This also extends to my body. The old truism "at least you have your health" really cannot be argued with. I know that now, although I never did before. Now that all those 'automatic' functions we all take for granted have gone haywire in my body I can finally appreciate what a wonderful instrument the human body truly is. For years it served me well, even if I taxed it with various toxins or unhealthy additions. Just think about it for a minute - our temperature, heart beat, breathing, energy supply, brain function, blood flow ... they all just 'work' ... until they don't. Never again will I be so dismissive of good health.
And then there are others in my life. I have always been very comfortable being in my own company, sometimes too much so, and I've been very cautious about allowing people into my world or offering my friendship. I've also always been a little too aware of how I might portray myself to others. Now, my dignity is hanging by a thread. Thankfully, I can still carry out all my 'personal care' needs but it's touch and go sometimes. And so, I am starting to discover the joy of surrounding myself with people who accept me for me. People who don't need me to impress or entertain them. This is also allowing me to develop more compassion for humanity. I have been quite hard and cynical over the years, probably as a result of what I learnt about how unreliable and selfish people could be when I was a child. Now I am beginning to appreciate the beauty in certain individuals much more and to give them, and myself, more of a break. The standards I've set for myself and those around me have always been far too high and now I can be much more forgiving.
The other side of that though is that I have an acceptance that there are people who have been in my life who will naturally drift out of it now I'm not able to partake in socialising etc. I was sad about that at first but now I'm accepting and calm about it. There will also be people who I come to realise are not helpful to my wellbeing now that I have so little energy to spare. Another gift of getting ill is that I no longer feel the need to try to work out and solve everyone's problems for them. I used to do that even if they never asked or wanted me to!
Finally, I have been given the gift of just being who I am. It's ironic that I worked on trying to uncover the real me for years without success and now that I've been struck down the real me has come to the fore naturally. I realise this may all sound rather 'new age' but I don't care. I'll end with a gift that all of us have but don't take advantage of ... the joy of doing and thinking nothing. Sometimes I have no choice but to just disconnect from any type of activity and remove all thoughts. Those periods of staring into space with a glazed expression and a slack jaw are wonderful - try it ;)
Showing posts with label independence. Show all posts
Showing posts with label independence. Show all posts
Thursday, 18 November 2010
Wednesday, 3 November 2010
This and That
There is no central theme to this post. It's more of a hodge-podge collection of everything significant that has happened lately.
Some good news to begin. My fasting glucose levels were normal this time so it seems I am out of the woods, for the time being, with regard to diabetes. That's a relief as it would just have been one more health problem to manage!
I'm currently weighing up how best to manage the whole doctor-patient relationship with my GP. I think I'm still minded to keep control of my treatment plan but I am also acknowledging that I can be a little 'full-on' and hard-headed sometimes and no doctor likes a patient who tries to tell them their job! I've worked through the whole 300+ pages of the NHS NICE guidelines and now have a better idea of what I can and can't ask for. Realistically it is just going to be about symptom management rather than anything that will allow me to return to a normal life but I've already accepted that's how things are now.
One thing I'm wanting to ask him is whether he'd sanction Modafinil/Modalert on prescription. It seems to scare a lot of doctors as it can be equated with amphetamines (speed) but it works in a completely different way and doesn't seem to have the risks of raising heart rates or encouraging dependence. I think it has been used 'off-label' for M.E. patients but not widely. Anybody out there had any experiences of this drug?
Another decision i'm chewing over is whether to get a wheelchair. I have a feeling it would make a huge difference to my quality of life as I could get out and about again but I'm constrained by being too worried about the reactions of others. I know I should get over that and I'll try to - it's just that I don't have the energy or inclination to deal with other people's bullshit. There are still so many cases of people with disabled badges on their vehicles being abused for 'being perfectly fine' or people being told they are only using a wheelchair due to being unhealthy or lazy. I mean, I can walk - it's not that I've lost the ability ... but more than a few steps and my heart rate is racing, my muscles are going into spasm and I feel like I'm going to faint. A wheelchair would mean I could try to start doing normal stuff again and have the occasional day out or whatever. I think I will ask for an Occupational Therapist from the local council to come out and assess ways my everyday life could be made easier.
Oh, and I have a new favourite thing. Magnesium. I never realised how beneficial it could be for so many things. I'm now using a magnesium-oil spray on my skin and I have a big sack of Epsom Salts lined up for baths. I'm already seeing benefits in terms of headaches and muscle pain etc. There's apparently a great book called The Magnesium Miracle that gives a lot of detail of the various benefits of the mineral but I haven't got around to checking that out. All I know is that it seems to be having a positive impact so far.
Finally, I'm immensely relieved to have found a support group that I have such a good feeling about. It has been set up by the production company behind the "What about ME?" documentary and group members post their individual stories, and subsequent updates, in the form of videos. I've really struggled with the isolation this illness has caused and with the fact that, with the best will in the world, most people don't understand what life has become for me. Now I have a place where I feel understood and accepted and that's worth such a lot. I might even start posting video updates here instead of writing, haha.
The group can be found here: Vimeo
That's enough for now, I think. Thanks for listening to my ramblings - take care!
Barry
Some good news to begin. My fasting glucose levels were normal this time so it seems I am out of the woods, for the time being, with regard to diabetes. That's a relief as it would just have been one more health problem to manage!
I'm currently weighing up how best to manage the whole doctor-patient relationship with my GP. I think I'm still minded to keep control of my treatment plan but I am also acknowledging that I can be a little 'full-on' and hard-headed sometimes and no doctor likes a patient who tries to tell them their job! I've worked through the whole 300+ pages of the NHS NICE guidelines and now have a better idea of what I can and can't ask for. Realistically it is just going to be about symptom management rather than anything that will allow me to return to a normal life but I've already accepted that's how things are now.
One thing I'm wanting to ask him is whether he'd sanction Modafinil/Modalert on prescription. It seems to scare a lot of doctors as it can be equated with amphetamines (speed) but it works in a completely different way and doesn't seem to have the risks of raising heart rates or encouraging dependence. I think it has been used 'off-label' for M.E. patients but not widely. Anybody out there had any experiences of this drug?
Another decision i'm chewing over is whether to get a wheelchair. I have a feeling it would make a huge difference to my quality of life as I could get out and about again but I'm constrained by being too worried about the reactions of others. I know I should get over that and I'll try to - it's just that I don't have the energy or inclination to deal with other people's bullshit. There are still so many cases of people with disabled badges on their vehicles being abused for 'being perfectly fine' or people being told they are only using a wheelchair due to being unhealthy or lazy. I mean, I can walk - it's not that I've lost the ability ... but more than a few steps and my heart rate is racing, my muscles are going into spasm and I feel like I'm going to faint. A wheelchair would mean I could try to start doing normal stuff again and have the occasional day out or whatever. I think I will ask for an Occupational Therapist from the local council to come out and assess ways my everyday life could be made easier.
Oh, and I have a new favourite thing. Magnesium. I never realised how beneficial it could be for so many things. I'm now using a magnesium-oil spray on my skin and I have a big sack of Epsom Salts lined up for baths. I'm already seeing benefits in terms of headaches and muscle pain etc. There's apparently a great book called The Magnesium Miracle that gives a lot of detail of the various benefits of the mineral but I haven't got around to checking that out. All I know is that it seems to be having a positive impact so far.
Finally, I'm immensely relieved to have found a support group that I have such a good feeling about. It has been set up by the production company behind the "What about ME?" documentary and group members post their individual stories, and subsequent updates, in the form of videos. I've really struggled with the isolation this illness has caused and with the fact that, with the best will in the world, most people don't understand what life has become for me. Now I have a place where I feel understood and accepted and that's worth such a lot. I might even start posting video updates here instead of writing, haha.
The group can be found here: Vimeo
That's enough for now, I think. Thanks for listening to my ramblings - take care!
Barry
Thursday, 21 October 2010
Confusion & Unpredictability
It's unfortunately been a while since I've been up to adding a new post. My intention was to start getting into some detail about how I was planning to treat my illness but my health has taken another downturn lately.
Before all this started, I had some problems with face and head pain in the form of TMJ (tempero-mandibular joint ... the joint that holds our bottom jaw to our skulls) inflammation and cluster headaches. Alas the cluster headaches seem to have returned. This isn't entirely surprising as, by their very definition, cluster headaches come in...well...clusters. You get them everyday for a while and then they go for a while. They are also known as 'suicide headaches' and, now that I've experienced them, I can vouch for that description not being too dramatic. I can completely understand why sufferers kill themselves, or maim themselves, to get rid of the constant and extreme pain. Best description I can give is a hot poker being stuck through the eye. Not nice. It actually creates a strong desire to gouge out whichever part of the head/face is currently painful and sufferers have been known to cut chunks out of themselves in an attempt to stop the pain. Thankfully I'm mostly too weak to go in search of sharp objects ;)
Anyway, all this means that my plans have had to change slightly. I didn't want to put any other prescribed medication into my body but I'm reluctantly going to have to start taking beta blockers again as they seem to be the thing that gives me some relief. Apparently something to do with constricting blood vessels and quietening down pain receptors. I got a bit spooked when the headaches started up again as they did so at the same time as my new supplement regime. So, I temporarily stopped taking anything else for a few days until I worked out it was the return of cluster headaches. Now I'm gradually working back up to full dosage of the supplements and I'll post details of what I'm taking in due course.
Which leads nicely onto what I want to talk about next. I thought I was being so very smart by reading up on every supplement and drug under the sun to see what the latest research findings were and what might benefit me. Unfortunately it hasn't quite worked out as planned though. The more I learn, the more confused I become. For example, imagine you never did any research ever and your doctor said to you: "take these pills, they will make you better" ... all nice and simple, right? Now imagine you decided to do a bit of research on those pills and found lots of documents pointing out they were dangerous and ineffective and then lots of other documents saying they were the best thing ever. Who to believe?
With a few exceptions, I can now make convincing arguments about why something is beneficial, pointless or potentially damaging. Very frustrating for someone like me who works with absolutes and needs black and white answers. However, I need to take something rather than just letting nature take its course so I have to weigh up all the conflicting evidence and bite the bullet. I will and I have. More on that in a future update.
Finally, my symptoms now include light sensitivity and noise sensitivity. The sound of my cat cleaning itself or the washing machine has actually become painful to me and the light is a problem too, even at low levels. All this means I am now having to use sunglasses and ear plugs indoors and will probably have to move into the spare room where I can avoid the everyday noises and activities of the household. I really don't want to cut myself off from what's going on in my own house but I think I'm going to have to take notice of these symptoms and act accordingly. Sorry I don't have anything more positive to report for now but at least the unpredictability of this illness keeps things interesting!
take care,
Barry
Before all this started, I had some problems with face and head pain in the form of TMJ (tempero-mandibular joint ... the joint that holds our bottom jaw to our skulls) inflammation and cluster headaches. Alas the cluster headaches seem to have returned. This isn't entirely surprising as, by their very definition, cluster headaches come in...well...clusters. You get them everyday for a while and then they go for a while. They are also known as 'suicide headaches' and, now that I've experienced them, I can vouch for that description not being too dramatic. I can completely understand why sufferers kill themselves, or maim themselves, to get rid of the constant and extreme pain. Best description I can give is a hot poker being stuck through the eye. Not nice. It actually creates a strong desire to gouge out whichever part of the head/face is currently painful and sufferers have been known to cut chunks out of themselves in an attempt to stop the pain. Thankfully I'm mostly too weak to go in search of sharp objects ;)
Anyway, all this means that my plans have had to change slightly. I didn't want to put any other prescribed medication into my body but I'm reluctantly going to have to start taking beta blockers again as they seem to be the thing that gives me some relief. Apparently something to do with constricting blood vessels and quietening down pain receptors. I got a bit spooked when the headaches started up again as they did so at the same time as my new supplement regime. So, I temporarily stopped taking anything else for a few days until I worked out it was the return of cluster headaches. Now I'm gradually working back up to full dosage of the supplements and I'll post details of what I'm taking in due course.
Which leads nicely onto what I want to talk about next. I thought I was being so very smart by reading up on every supplement and drug under the sun to see what the latest research findings were and what might benefit me. Unfortunately it hasn't quite worked out as planned though. The more I learn, the more confused I become. For example, imagine you never did any research ever and your doctor said to you: "take these pills, they will make you better" ... all nice and simple, right? Now imagine you decided to do a bit of research on those pills and found lots of documents pointing out they were dangerous and ineffective and then lots of other documents saying they were the best thing ever. Who to believe?
With a few exceptions, I can now make convincing arguments about why something is beneficial, pointless or potentially damaging. Very frustrating for someone like me who works with absolutes and needs black and white answers. However, I need to take something rather than just letting nature take its course so I have to weigh up all the conflicting evidence and bite the bullet. I will and I have. More on that in a future update.
Finally, my symptoms now include light sensitivity and noise sensitivity. The sound of my cat cleaning itself or the washing machine has actually become painful to me and the light is a problem too, even at low levels. All this means I am now having to use sunglasses and ear plugs indoors and will probably have to move into the spare room where I can avoid the everyday noises and activities of the household. I really don't want to cut myself off from what's going on in my own house but I think I'm going to have to take notice of these symptoms and act accordingly. Sorry I don't have anything more positive to report for now but at least the unpredictability of this illness keeps things interesting!
take care,
Barry
Wednesday, 6 October 2010
Simple Pleaures
It's around 8am here and I have been out of bed for an hour or more. I've dressed and I've taken all my pills and supplements etc. Big deal, right? Well, I've come to appreciate the simple little things that I always took for granted. Despite the fact that I will probably fall apart again before lunchtime, being able to get up early and do all the 'normal' morning stuff gives me an incredible boost and a glimpse again of how life used to be. More days like this please!
I'm surprised I have started the day so well, to be honest. Yesterday I really overdid it and had a couple of hours where my body showed its displeasure in no uncertain terms! The morning had involved a visit to the doctor for a chat about my latest blood tests and my referral to the M.E. clinic. Turns out I am in the 're-test' zone for diabetes so more blood tests are necessary. I'm trying to avoid thinking about the consequences of having diabetes on top of all the other stuff that is falling apart though and I'll cross that bridge if it comes. Stressing and worrying definitely makes my illness worse so I'm getting better at avoidance of anxious thoughts.
The visit to the doctor also allowed me to talk to him about how I'm going to manage my own treatment plan but that I'd really value consulting him once a month or so to summarise what I'm trying out and get his professional opinion on it all. I'm really lucky to have a GP that is honest with me and treats me like an intelligent human being. He was really positive about the monthly updates and hopes he can learn more about the lifecycle of the illness etc so it's all good.
I decided to try to stay out of bed once I got back home yesterday and I even pushed myself to fix a cup of tea and some sandwiches for lunch. I know that probably sounds like not much at all but my elevated heart rate and shaking muscles when I stand or sit have meant little chores like that have been mostly beyond me. Anyway, I then decided to push my luck further and sit and read after lunch. That was a bit silly really, now I know how much rest my body needs and how little it can achieve physically at the minute. Needless to say I had a really bad end to the afternoon with a migraine and a feeling that different parts of my body were shutting down. Sometimes it sounds dramatic when an M.E. sufferer says they feel like they are dying but there are times when that strange feeling does arise. It's like you can feel all your vital organs slowly giving up. Probably sounds bonkers but that's the best way I can explain it.
Thankfully, I had some dinner with my girlfriend and brightened up a little again. I managed to watch a bit of telly before falling asleep and grabbing a decent 7 hours or so rest. All in all, it was an interesting day in terms of studying how my body reacts to various things. I won't be as silly as to push myself quite as far today though. Plus I'm concious that the effects of over-exertion are often not felt for 48 or 72 hours so fingers crossed I don't crash and burn before the weekend!
Take care,
Barry
I'm surprised I have started the day so well, to be honest. Yesterday I really overdid it and had a couple of hours where my body showed its displeasure in no uncertain terms! The morning had involved a visit to the doctor for a chat about my latest blood tests and my referral to the M.E. clinic. Turns out I am in the 're-test' zone for diabetes so more blood tests are necessary. I'm trying to avoid thinking about the consequences of having diabetes on top of all the other stuff that is falling apart though and I'll cross that bridge if it comes. Stressing and worrying definitely makes my illness worse so I'm getting better at avoidance of anxious thoughts.
The visit to the doctor also allowed me to talk to him about how I'm going to manage my own treatment plan but that I'd really value consulting him once a month or so to summarise what I'm trying out and get his professional opinion on it all. I'm really lucky to have a GP that is honest with me and treats me like an intelligent human being. He was really positive about the monthly updates and hopes he can learn more about the lifecycle of the illness etc so it's all good.
I decided to try to stay out of bed once I got back home yesterday and I even pushed myself to fix a cup of tea and some sandwiches for lunch. I know that probably sounds like not much at all but my elevated heart rate and shaking muscles when I stand or sit have meant little chores like that have been mostly beyond me. Anyway, I then decided to push my luck further and sit and read after lunch. That was a bit silly really, now I know how much rest my body needs and how little it can achieve physically at the minute. Needless to say I had a really bad end to the afternoon with a migraine and a feeling that different parts of my body were shutting down. Sometimes it sounds dramatic when an M.E. sufferer says they feel like they are dying but there are times when that strange feeling does arise. It's like you can feel all your vital organs slowly giving up. Probably sounds bonkers but that's the best way I can explain it.
Thankfully, I had some dinner with my girlfriend and brightened up a little again. I managed to watch a bit of telly before falling asleep and grabbing a decent 7 hours or so rest. All in all, it was an interesting day in terms of studying how my body reacts to various things. I won't be as silly as to push myself quite as far today though. Plus I'm concious that the effects of over-exertion are often not felt for 48 or 72 hours so fingers crossed I don't crash and burn before the weekend!
Take care,
Barry
Monday, 13 September 2010
Decisions
I should begin my reassuring any readers that I'm not going to be wallowing in self-pity this time around. My previous update showed a very unattractive aspect of how I'm coping with being ill and I know it didn't paint me in a very good light. However, I wanted to acknowledge that there are days when I feel exceptionally sorry for myself and get angry with 'fate' for bestowing this on me. Writing about how unfair life is becomes a pointless task and it helps nobody to read it so I will be avoiding such posts in future.
Today I want to focus on some great work being done on M.E./CFS in the form of an upcoming documentary. Please visit this link for more information. Part of the pre-production work is asking those impacted by the illness to post their personal stories in the form of videos. Seeing an intelligent, determined woman be reduced to only being able to speak in a whisper and hearing a story of a child with the condition who wasn't believed and was taken away from his parents by social services then thrown in a swimming pool to force him to swim allows me to once again be thankful that I am not in the grasp of something much worse than my current condition. I will try to post more information on this documentary as progress continues.
Also, over the past week or so, I've made decisions about my future and taken action. I have now contacted my University to confirm I am unable to attend this year. And, I have sold my car. I was avoiding making both of these decisions as they are confirmation of my current loss of independence but it was unrealistic for me to hope against hope that I would make a miracle recovery and I actually feel inwardly calm now the decisions have been made.
I had a period recently where I was achieving sustained bursts of feeling mentally alert (although obviously not too alert as I managed to scald myself with hot tea and knock my laptop over, busting the hard drive!). I was having period of 4 or 5 hours at a time when my mind felt light and clear and I was able to concentrate on tasks. This was bliss and I mistakenly took it as a signal I was recovering after 4 months or so of illness. Needless to say, it was only a temporary thing and I am back to being zonked again and having long period of having to stare into space or sleep. It's disappointing to feel back at square one again but I think that is just the nature of the illness and I will in future just be grateful for those brief periods of lucidity.
Take care,
Barry
Today I want to focus on some great work being done on M.E./CFS in the form of an upcoming documentary. Please visit this link for more information. Part of the pre-production work is asking those impacted by the illness to post their personal stories in the form of videos. Seeing an intelligent, determined woman be reduced to only being able to speak in a whisper and hearing a story of a child with the condition who wasn't believed and was taken away from his parents by social services then thrown in a swimming pool to force him to swim allows me to once again be thankful that I am not in the grasp of something much worse than my current condition. I will try to post more information on this documentary as progress continues.
Also, over the past week or so, I've made decisions about my future and taken action. I have now contacted my University to confirm I am unable to attend this year. And, I have sold my car. I was avoiding making both of these decisions as they are confirmation of my current loss of independence but it was unrealistic for me to hope against hope that I would make a miracle recovery and I actually feel inwardly calm now the decisions have been made.
I had a period recently where I was achieving sustained bursts of feeling mentally alert (although obviously not too alert as I managed to scald myself with hot tea and knock my laptop over, busting the hard drive!). I was having period of 4 or 5 hours at a time when my mind felt light and clear and I was able to concentrate on tasks. This was bliss and I mistakenly took it as a signal I was recovering after 4 months or so of illness. Needless to say, it was only a temporary thing and I am back to being zonked again and having long period of having to stare into space or sleep. It's disappointing to feel back at square one again but I think that is just the nature of the illness and I will in future just be grateful for those brief periods of lucidity.
Take care,
Barry
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