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
Thursday, 21 October 2010
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
Sunday, 3 October 2010
Treatment Plan - Part 1
In my last update I mentioned that I was now focusing upon managing my symptoms rather than seeking out some miracle cure. Today I am going to begin documenting the various things I will be using to help manage my illness.
There are two reasons why this is important now. Firstly, and most obviously, I have very little quality of life as a result of the symptoms I am currently 'enjoying'. If I can lessen the severity of those symptoms by as little as 20% I will significantly increase the range of activities I can take part in. Small things to most people but things that I've lost the ability to do for myself like fixing a meal or walking to the end of the street. Secondly, I need to be very mindful of the impact of my illness on my internal functioning. Statistically I am now likely to die of a heart attack at 58 (rather than 73 if I didn't have this illness) and I have a much higher likelihood of strokes, diabetes, organ failure and cancer. Cheery stuff huh?
So, it's important I do as much as I can to sway the odds of reaching a ripe old age in my favour. That is the long and short of my treatment plan. It is accepting I am unlikely to cure myself but it is making use of established clinical outcomes and robust scientific trials to give myself as many small advantages as I can. I mentioned previously about the dilemma of spending time, money and hope on treatments or just letting things take their course. I'm determined not to just give up and so the treatment option is the right one. However, I will apply a strict qualifying criteria to every potential treatment option. It has to be proven to have shown positive results and, just as importantly, it has to be free from excessive risks or side effects. Most prescribed medicines that attempt to treat many of my symptoms have other unwelcome impacts upon the way my body manages itself and those will not be considered by me.
For anyone following this who does not currently have the same illness as I do, I should also mention that 90% of what I end up doing or taking will apply just as much to general good health. Each part of the treatment plan plays a part in addressing basic imbalances within the body.
The first two elements I want to mention are both examples of what I previously considered to be champions of marketing rather than truly beneficial treatments. However, after a lot of reading and understanding the science behind them and how they change things within our bodies I am convinced both are vital.
Firstly, probiotics. I'm not going to cite individual studies as there are too many to mention but suffice to say that I am now satisfied that maintaining a healthy gut flora is definitely worth the effort and expense. We still don't fully understand all of the benefits of doing so but what is understood is impressive. A good probiotic can, amongst other things, regulate blood sugar levels (good for avoiding diabetes), boost our immune systems (good for fighting off viral infections - 80% of our immune strength is controlled via the gut), control yeast levels (good for breaking free of cravings for sugary processed foods etc) and can even help our waistlines! (sugars and starches are converted to short-chain fatty acids which are used for energy).
The emphasis has to be on a GOOD probiotic though. It is my belief that the heavily-marketed yoghurts are ineffective as the bacteria is unlikely to make it past our stomach acids. Similarly, the popular drinks are likely to be heavily processed and contain too many sugars and starches to have enough benefit. That leaves two choices - either grow your own bacteria and top it up with some sort of milk product (not as hard as it sounds, people have been making their own yoghurt for a long time and it's the same principle - a kefir starter kit can be bought for about 6 quid) or find a good probiotic in the form of gel tablets (they will make it past the stomach acids).
Secondly, I need to keep careful control of cholesterol. By that I mean keep levels of 'bad' cholesterol as low as possible and raise levels of 'good' cholesterol as much as I can. My heart is not working as efficiently as it should at the moment and is under more strain from minor exertion (standing or sitting in my case) so it's important I don't make matters worse. I don't want to mention brand names but I am introducing a well-known spread that is proven to improve cholesterol levels. I used to think this was another example of clever marketing as a means to sell expensive products but I have changed my mind. I have now read enough independent studies to suggest it not only works well but it works impressively quickly. In fact, more quickly than taking what is usually prescribed for high cholesterol levels (statins - they have lots of nasty side effects such as supressing some of our bodies' natural functions).
So, that's the first two parts of the treatment plan. Neither is very exotic or earth-shattering and both are widely available. The combined benefits are proven and significant enough to justify the cost and are especially important to someone like me whose natural functions are presently haywire. As I've said though, a GOOD probiotic and an effective plant-based cholesterol management food (such as a margarine) will also have huge positives for almost everyone.
Ok, that's long enough for now. Next time I'll start to go into some detail about some of the vitamins that are important and why most people waste their money on supplements!
Take care,
Barry
There are two reasons why this is important now. Firstly, and most obviously, I have very little quality of life as a result of the symptoms I am currently 'enjoying'. If I can lessen the severity of those symptoms by as little as 20% I will significantly increase the range of activities I can take part in. Small things to most people but things that I've lost the ability to do for myself like fixing a meal or walking to the end of the street. Secondly, I need to be very mindful of the impact of my illness on my internal functioning. Statistically I am now likely to die of a heart attack at 58 (rather than 73 if I didn't have this illness) and I have a much higher likelihood of strokes, diabetes, organ failure and cancer. Cheery stuff huh?
So, it's important I do as much as I can to sway the odds of reaching a ripe old age in my favour. That is the long and short of my treatment plan. It is accepting I am unlikely to cure myself but it is making use of established clinical outcomes and robust scientific trials to give myself as many small advantages as I can. I mentioned previously about the dilemma of spending time, money and hope on treatments or just letting things take their course. I'm determined not to just give up and so the treatment option is the right one. However, I will apply a strict qualifying criteria to every potential treatment option. It has to be proven to have shown positive results and, just as importantly, it has to be free from excessive risks or side effects. Most prescribed medicines that attempt to treat many of my symptoms have other unwelcome impacts upon the way my body manages itself and those will not be considered by me.
For anyone following this who does not currently have the same illness as I do, I should also mention that 90% of what I end up doing or taking will apply just as much to general good health. Each part of the treatment plan plays a part in addressing basic imbalances within the body.
The first two elements I want to mention are both examples of what I previously considered to be champions of marketing rather than truly beneficial treatments. However, after a lot of reading and understanding the science behind them and how they change things within our bodies I am convinced both are vital.
Firstly, probiotics. I'm not going to cite individual studies as there are too many to mention but suffice to say that I am now satisfied that maintaining a healthy gut flora is definitely worth the effort and expense. We still don't fully understand all of the benefits of doing so but what is understood is impressive. A good probiotic can, amongst other things, regulate blood sugar levels (good for avoiding diabetes), boost our immune systems (good for fighting off viral infections - 80% of our immune strength is controlled via the gut), control yeast levels (good for breaking free of cravings for sugary processed foods etc) and can even help our waistlines! (sugars and starches are converted to short-chain fatty acids which are used for energy).
The emphasis has to be on a GOOD probiotic though. It is my belief that the heavily-marketed yoghurts are ineffective as the bacteria is unlikely to make it past our stomach acids. Similarly, the popular drinks are likely to be heavily processed and contain too many sugars and starches to have enough benefit. That leaves two choices - either grow your own bacteria and top it up with some sort of milk product (not as hard as it sounds, people have been making their own yoghurt for a long time and it's the same principle - a kefir starter kit can be bought for about 6 quid) or find a good probiotic in the form of gel tablets (they will make it past the stomach acids).
Secondly, I need to keep careful control of cholesterol. By that I mean keep levels of 'bad' cholesterol as low as possible and raise levels of 'good' cholesterol as much as I can. My heart is not working as efficiently as it should at the moment and is under more strain from minor exertion (standing or sitting in my case) so it's important I don't make matters worse. I don't want to mention brand names but I am introducing a well-known spread that is proven to improve cholesterol levels. I used to think this was another example of clever marketing as a means to sell expensive products but I have changed my mind. I have now read enough independent studies to suggest it not only works well but it works impressively quickly. In fact, more quickly than taking what is usually prescribed for high cholesterol levels (statins - they have lots of nasty side effects such as supressing some of our bodies' natural functions).
So, that's the first two parts of the treatment plan. Neither is very exotic or earth-shattering and both are widely available. The combined benefits are proven and significant enough to justify the cost and are especially important to someone like me whose natural functions are presently haywire. As I've said though, a GOOD probiotic and an effective plant-based cholesterol management food (such as a margarine) will also have huge positives for almost everyone.
Ok, that's long enough for now. Next time I'll start to go into some detail about some of the vitamins that are important and why most people waste their money on supplements!
Take care,
Barry
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