I'm very happy to say that I am still more or less on a plateau with my health. I'm still managing to stick to the dietary changes fairly well. I have been a bit slack on the dietary supplements since my gallstones started playing up, though I'm trying to get back into the habit, especially with the vitamin D (as we are deep in the throws of winter at the moment).
I spend a few weeks each year invigilating in the exams at my local university. As I have individual requirements of my own (pacing up and down an exam hall kills me!), I tend to be put in the Individual Exam Requirements (IER) room. There are usually only a handful of students there, so you don't need to pace the room, and it's ok to read some of the time. Well, for my reading material I decided to revisit Jelinek's book ("Overcoming Multiple Sclerosis"), to refresh on some of the science behind it. After reading the section about meditation, I thought it was about time I took the next step in my self treatment challenge and address the thorny topic of meditation. I am not a natural mystic, and have resisted the notion of meditation, but now I have decided to look into it with as open a mind as I can. I have bought some of the books referred to by Jelinek in his book, so I can at least see where he is coming from, and maybe I will see something there for myself...an ongoing investigation!
By way of interest, the books I have recently bought, and that are sitting next to me largely waiting to be read are:
Quantum Healing, by Deepak Chopra: I've read most of this one now, and despite him referring to human cell membranes as cell walls (a cardinal sin...he is an endocrinologist and ought to know better!), he has some very inspiring ideas, and refers a lot to Ayervedic teachings, of which, as an uncultured and uncosmic oik, I knew nothing about before!
It has some very beautiful and deeply appealing notions of who we are and how we can change our reality, but I think he makes rather too many "cancer cure" claims for me to entirely hang on his every word.
Journey Into Healing, also by Deepak Chopra: a condensed book of notable bits of his other books - plus a beginners meditation guide, which is what I will initially follow (I tried it today, but instead of getting up after 15 mins of meditation, I slept through the gentle alarm and slept for 3 hours solid! oops!)
Tuesdays with Morrie, by Mitch Albom: this is a short little book which Jelinek said he found very inspiring. It is a true tale of an old don with a terminal neurological disease, and his parting words of wisdom to his young student,..I am a little apprehensive about reading this one. Jelinek said it was difficult to read when he was first diagnosed but found it inspiring when he re-read it. I'm over the first flush of fear that diagnosis brings, but I'm a soft old git and I know it's going to make me blub!
Anatomy of the Spirit, by Caroline Myss: I think Jelinek might have recommended to start by reading this one..but I didn't..
I will post an update on my spiritual sojourns...if I can get my bodymind to stay awake long enough to actually master a 15 minute meditation!
x
Thursday, 22 January 2015
Thursday, 28 November 2013
hanging in there!
well there we are then! it's been quite a while since my last post..February I think was my last entry, and it's now nearly the end of November - I've deliberately not read any previous entries - I want to have a clear snapshot of where I am in my twisted tango with my comfortable nemesis!
Physically, it's been a bit of a rough ride, what with one thing and another, mostly it's the unrelated to MS stuff that's been giving me grief. I had a very painful episode of gall bladder meltdown that landed me in hospital for the night and sore as hell for a week or so. Thats itself is a curious thing - gallstones are associated with people who are quite overweight, so less commonly with people who have had very sudden and dramatic weight loss....well...I'm now gone down 3 dress sizes since my diet changed, but that has been over the period of a couple of years, so not exactly dramatic sudden weight loss, and I now am not overweight so wouldn't expect to be bothered by such things...and here's the bit that I think is relevant to my whole dietary self-experiment.....the only source of fat \I really take in any quantity is oily fish. I supposed to take 20g a day f fish oil, which I've done as capsules initially, but later went on to eating salmon (mainly) by the shed load! I mean almost daily!..my guess is that for me, 20g of fish oil daily is more than my shrinking system can process, and the fats were swishing about with nothing better to do than make me some gall stones.......so a cautionary tale to anyone who is following the Jelinek thing...since my painful lesson in fishy overdosing, I've not been trying to keep up with the 20g/day regime for fear of further episodes like that (which was akin to my memory of childbirth in terms of extremity of pain - felt like I was going to push an alien out through my chest!).
Emotionally, I'm doing ok. Still have, as we all do, those blue moments. for me it's the feeling that I suddenly aged, like a perverse sleeping beauty, where I went to sleep one night and woke up the next morning 40 years older - that is a tough one, even now, so long since my relapse, for me to always accept with good grace. And I still haven't really adjusted to "my new normal" - I take on too much and burn out, I still don't get out and socialise enough cos I'm always worn out. Well, hell! it's getting to that time of year where we start thinking about resolutions and fresh starts. I think that there's going to be a few fresh starts on the horizon, all good and positive, so just focussing on getting through the gloom and chill then push on with some bright new adventures....watch this space :)
Physically, aside exploding internal organs, my MS has been pretty stable. I can't say it's got any better, in fact overall it's been a bit challenging at times, like leaden legs cos of bugs and things - it always goes to my legs when I'm run down. I'm still as tired as ever, but I deal with it by assuming a sloth-like habit, and mostly hibernating when it's cold cos that goes to me legs as well! ...basically your average 80 year old!
So that's about where I am with it right now
x
Physically, it's been a bit of a rough ride, what with one thing and another, mostly it's the unrelated to MS stuff that's been giving me grief. I had a very painful episode of gall bladder meltdown that landed me in hospital for the night and sore as hell for a week or so. Thats itself is a curious thing - gallstones are associated with people who are quite overweight, so less commonly with people who have had very sudden and dramatic weight loss....well...I'm now gone down 3 dress sizes since my diet changed, but that has been over the period of a couple of years, so not exactly dramatic sudden weight loss, and I now am not overweight so wouldn't expect to be bothered by such things...and here's the bit that I think is relevant to my whole dietary self-experiment.....the only source of fat \I really take in any quantity is oily fish. I supposed to take 20g a day f fish oil, which I've done as capsules initially, but later went on to eating salmon (mainly) by the shed load! I mean almost daily!..my guess is that for me, 20g of fish oil daily is more than my shrinking system can process, and the fats were swishing about with nothing better to do than make me some gall stones.......so a cautionary tale to anyone who is following the Jelinek thing...since my painful lesson in fishy overdosing, I've not been trying to keep up with the 20g/day regime for fear of further episodes like that (which was akin to my memory of childbirth in terms of extremity of pain - felt like I was going to push an alien out through my chest!).
Emotionally, I'm doing ok. Still have, as we all do, those blue moments. for me it's the feeling that I suddenly aged, like a perverse sleeping beauty, where I went to sleep one night and woke up the next morning 40 years older - that is a tough one, even now, so long since my relapse, for me to always accept with good grace. And I still haven't really adjusted to "my new normal" - I take on too much and burn out, I still don't get out and socialise enough cos I'm always worn out. Well, hell! it's getting to that time of year where we start thinking about resolutions and fresh starts. I think that there's going to be a few fresh starts on the horizon, all good and positive, so just focussing on getting through the gloom and chill then push on with some bright new adventures....watch this space :)
Physically, aside exploding internal organs, my MS has been pretty stable. I can't say it's got any better, in fact overall it's been a bit challenging at times, like leaden legs cos of bugs and things - it always goes to my legs when I'm run down. I'm still as tired as ever, but I deal with it by assuming a sloth-like habit, and mostly hibernating when it's cold cos that goes to me legs as well! ...basically your average 80 year old!
So that's about where I am with it right now
x
Wednesday, 13 February 2013
flu-proof cavewoman!
I've been pretty well over the last few months. I've been fighting back the flu, which seems to be all around me, but perhaps it's a beast my T Cells remember, cos I've just had a very small version of it (sniffles, headaches, wheeziness)...thankfully! I decided against the flu vaccine this year, although I'm on the "at risk" list of people who get invited to get jabbed. The more I have educated myself about pharmaceutical drugs, the less I have been willing to subject my already messed up system. I'm not completely anti-medication, sure some of it saves lives and brings quality of life for many people. But for some people, myself included, the whole regime of synthetic drugs and heavily processed food seem to have unpredictable, and unwelcome side effects. I sometimes think that my cave-woman's body just can't run on 21st century fuel - it breaks down! I am still working on resolving a 21st century palette with an obsolete digestive system built for eating fish, nuts and berries!
I had my annual neuro MOT a week or so ago. I just got the written report in the post today. I have gained a point on my disability scale! I think that is just due to the fact that I use a stick for walking, as I'm not much different to last year really....it was a bit sobering though when I inevitably looked up what the numbers mean. I am now 2 points away from being wheelchair bound! That sounds quite serious when you look at it like that! - I still have issues with describing myself as disabled. But hopefully my extra point might mean I can get hold of a precious blue badge, and save my poor legs!
x
I had my annual neuro MOT a week or so ago. I just got the written report in the post today. I have gained a point on my disability scale! I think that is just due to the fact that I use a stick for walking, as I'm not much different to last year really....it was a bit sobering though when I inevitably looked up what the numbers mean. I am now 2 points away from being wheelchair bound! That sounds quite serious when you look at it like that! - I still have issues with describing myself as disabled. But hopefully my extra point might mean I can get hold of a precious blue badge, and save my poor legs!
x
Monday, 17 December 2012
guilt and forgiveness...peace regained in the ravaged brain
This fecking disease!
It sometimes makes me feel like I'm just being crap ((lazy and forgetful, more specifically), and making excuses! ... that nagging feeling that I'm freeloading! Rationally, I forgive myself for being lazy and forgetful, and I am aware they are symptoms of my disease.
I think the real knuckle of what it boils down to, is there's no visible signs of my MS, aside my wobbly legs. My speech doesn't slur or mangle too much..I appear, in a Pulp Fiction kind of way, "normal"! I sometimes think it'd be easier to deal with if it were more obvious. Like it would validate my symptoms somehow. Like having a decent bruise to show after a small but painful accident! I'm not saying I suffer from people thinking I'm just lazy, that's not the case at all, but the inner nagging voice is far less forgiving sometimes! You can't help but sometimes hear it whisper, when at a low ebb, telling you that your being lazy, or wilfully forgetful etc, etc! ...but I think when your self destructive side starts playing Chinese whispers with you, it's a good idea to end that game by repeating what it whispers to you out loud, and then try to deal with it! ....So there it is... I'm fatigued and forgetful, and I forgive myself!....(mantra of the day!)
x
It sometimes makes me feel like I'm just being crap ((lazy and forgetful, more specifically), and making excuses! ... that nagging feeling that I'm freeloading! Rationally, I forgive myself for being lazy and forgetful, and I am aware they are symptoms of my disease.
I think the real knuckle of what it boils down to, is there's no visible signs of my MS, aside my wobbly legs. My speech doesn't slur or mangle too much..I appear, in a Pulp Fiction kind of way, "normal"! I sometimes think it'd be easier to deal with if it were more obvious. Like it would validate my symptoms somehow. Like having a decent bruise to show after a small but painful accident! I'm not saying I suffer from people thinking I'm just lazy, that's not the case at all, but the inner nagging voice is far less forgiving sometimes! You can't help but sometimes hear it whisper, when at a low ebb, telling you that your being lazy, or wilfully forgetful etc, etc! ...but I think when your self destructive side starts playing Chinese whispers with you, it's a good idea to end that game by repeating what it whispers to you out loud, and then try to deal with it! ....So there it is... I'm fatigued and forgetful, and I forgive myself!....(mantra of the day!)
x
Wednesday, 5 December 2012
mardy arse!
I am not as self-pitying and mardy as my blog might suggest! I've just looked over a couple of old posts and all I seem to do is moan!...I just felt an urge to counterbalance this by pointing out that I DO have up-days!...plenty of them!... I just don't generally blog about them!
:)
x
:)
x
Monday, 3 December 2012
Toothache in my Toes
Another curious new symptom....for the last week or two I've had unhappy feet! Not the whole appendages, just the tips of my toes (after the first little knuckle)! Weird and not very nice. They range from feeling slightly bruised like I've stubbed them, right through to being woken in the middle of the night with severe pain, though that intensity seems to only last for 5 minutes or so before it calms down to something more manageable.
The best I've been able to describe this intense feeling is "toothache in my toes"!...it brought to mind that scene from "Shrek" where the princess turns from human to ogre, and she has light bursting from every appendage. I know that sound a bit odd, but that's how it felt, except I was radiating toothy toe ache rather than golden light!
You gotta love this crazy-arsed disease for its' sheer novelty value! It still does me in if I dwell on the fact that the pain I feel is not real, but a construct of my knackered CNS. I sometimes find myself telling my brain off for sending me garbled messages, but I guess you can't kill the messenger and all that!
I was laying in bed last night pondering if you can, with a strong enough will, instruct your brain to bypass the dodgy pain signals. So I lay there, and focussed on my toes, which weren't hurting at the time. I really focussed on what the pain sensation actually felt like and imagined my toes really throbbing. I don't know if it was connected or coincidence, but my toes did start to twinge whilst I was focussing on them....then I stopped trying cos I really don't want to induce toothy toe ache! But it was intriguing, and supports the notion that pain and other body sensations can, to a certain degree, be controlled by the power of our own thinking. A friend was saying that there is an established technique of focussing on a part of the body which doesn't hurt and really thinking about how it feels, to detract from the painful bit. This sounds like a very similar technique to what I was trying, albeit a more sensible approach (reducing not inducing pain)! Next time, if there is a next time, I have a Shrek princess moment, then I will put my brain to work thinking about my happy hands and how good they feel...
Just a small aside...I came across an interesting website - I've not fully delved into it yet, but it looks like some practical stuff about diet and exercise specifically for women with MS...
http://www.msdietforwomen.com
x
The best I've been able to describe this intense feeling is "toothache in my toes"!...it brought to mind that scene from "Shrek" where the princess turns from human to ogre, and she has light bursting from every appendage. I know that sound a bit odd, but that's how it felt, except I was radiating toothy toe ache rather than golden light!
You gotta love this crazy-arsed disease for its' sheer novelty value! It still does me in if I dwell on the fact that the pain I feel is not real, but a construct of my knackered CNS. I sometimes find myself telling my brain off for sending me garbled messages, but I guess you can't kill the messenger and all that!
I was laying in bed last night pondering if you can, with a strong enough will, instruct your brain to bypass the dodgy pain signals. So I lay there, and focussed on my toes, which weren't hurting at the time. I really focussed on what the pain sensation actually felt like and imagined my toes really throbbing. I don't know if it was connected or coincidence, but my toes did start to twinge whilst I was focussing on them....then I stopped trying cos I really don't want to induce toothy toe ache! But it was intriguing, and supports the notion that pain and other body sensations can, to a certain degree, be controlled by the power of our own thinking. A friend was saying that there is an established technique of focussing on a part of the body which doesn't hurt and really thinking about how it feels, to detract from the painful bit. This sounds like a very similar technique to what I was trying, albeit a more sensible approach (reducing not inducing pain)! Next time, if there is a next time, I have a Shrek princess moment, then I will put my brain to work thinking about my happy hands and how good they feel...
Just a small aside...I came across an interesting website - I've not fully delved into it yet, but it looks like some practical stuff about diet and exercise specifically for women with MS...
http://www.msdietforwomen.com
x
Tuesday, 6 November 2012
on cog fog...
I've just read an article on cognitive problems in MS. I think cog fog, for me, is an issue I struggle with. I think I've already mentioned that it's probably hard for friends and family to see this problem, and consequently to really understand it, as I have always been a bit on the ditzy side!
so I've put a link to this article at the bottom of the blog, and I want you, the reader (and therefore quite likely to know me) to bear in mind that this article really resonated with me in many ways.
I have also been struggling with the emotional aspect of the disease, with reactive depression (ooh! Now I have a word for it!) being something that really hits me sometimes. It is sort of a comfort to know that it's as much a symptom as fuzzy legs and forgetfulness, not just me being a mardy-arse, but generally not at the time that I'm feeling it...in the same way that knowing you have PMT does not make you feel any less angry/sad/psychotic!...and reactive depression is triggered by things which are real and probably quite challenging anyway. But I know, in myself, that I am generally quite a positive thinking person, and to be bogged down with things isn't generally my style!
So this leaves me with a thought that there must be coping strategies I can use to chase the blues away.....so back to researching all there is to be gleaned on the internet about helping myself out of any mires I find myself stuck in.
This disease surely keeps you on your toes!
x
cognitive problems in MS
so I've put a link to this article at the bottom of the blog, and I want you, the reader (and therefore quite likely to know me) to bear in mind that this article really resonated with me in many ways.
I have also been struggling with the emotional aspect of the disease, with reactive depression (ooh! Now I have a word for it!) being something that really hits me sometimes. It is sort of a comfort to know that it's as much a symptom as fuzzy legs and forgetfulness, not just me being a mardy-arse, but generally not at the time that I'm feeling it...in the same way that knowing you have PMT does not make you feel any less angry/sad/psychotic!...and reactive depression is triggered by things which are real and probably quite challenging anyway. But I know, in myself, that I am generally quite a positive thinking person, and to be bogged down with things isn't generally my style!
So this leaves me with a thought that there must be coping strategies I can use to chase the blues away.....so back to researching all there is to be gleaned on the internet about helping myself out of any mires I find myself stuck in.
This disease surely keeps you on your toes!
x
cognitive problems in MS
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