stay off of the gravy train

I just read that the MS gravy train is worth over $8 billion a year to the pharmaceutical industry! 8 billion dollars to make a bunch of people more comfortable, but not better! I really don't see them coming up with an effective cure any time in the near future!!

It doubles my resolve to do everything in MY power to stay well, and reinforces my choice to stay away from the drugs. It also pleases me to know I'm doing my tiny little bit to not line their overstuffed pockets any more than they are already. It galls me that one day I might end up desperate enough to say yes to them. I'm not saying it would be weak of me if I choose the drugs in the future, for example,if I was in pain I'd probably take any damn thing to make it stop. But I'll not dwell on that. I'm not in pain.
x

happy anniversary! :/

it has now been a full year since my current relapse began. It is also my son's 16th birthday (that's how it is so easy for me to remember the exact date my relapse started!)
I'm completely at peace with my MS now. No more dark ad scary nights wondering what will become of me. It's like this - we all get old and sick and immobile at some point in our lives. My life is no more or less predictable than it was before my MS became apparent. So I'm not going to waste time and energy any more on what might be, or indeed, what might have been...

What it has done is to force me to rethink things about myself, and to relearn certain ways of living my life (still an ongoing process). It has helped me to see the value of the "right now". I'm not sure I'm much less of a time waster yet, but I think I am better than I was. I certainly do not take for granted what mobility I have right now. I really appreciate it when my legs are co-operating, and often it's quite funny when they are not! The fact that I have not been left with any really uncomfortable symptoms is a real blessing, I know it could easily have been the case, quite randomly, that I coul have been left with nerve damage that would cause permanent pain. That, I think, would be very difficult to maintain a positive outlook with.

So I'm now looking at what symptoms I still have as likely to be permanent (though there might still be improvement over the next 6 months)...this is what I'e been told to expect.


Oh, and I had my appointment with the MS nurse a few days ago and told her I didn't intend to start on the drugs. She completely had my number! She said she didn't think I would go for it, and was completely respectful and supportive of my decision. I was really grateful for that. I know the decision I have arrived at is the right one for me. It was like a weight lifting off me when I finally committed to the decision.

Had a lovely meal this evening for aforementioned son's birthday. We went to a tapas bar, and I could eat enough from the menu not to go hungry...hooray for Mediterranean restaurants who insist on using extra virgin olive oil! :D

x

just say no!

ok, I have made my decision about whether to embark upon a course of pharmaceutical drugs to modify the course of my MS. I'm off to see the MS nurse on Friday to tell her....

......and the winner is
.......I am NOT going to take them, at least not for now, and maybe not ever.

The reasons are many and various, and arriving at this decision has taken a whole lot of research, soul searching and agonising. I really considered the drug thing. I read all the pamphlets, I researched often primary sources to really make an informed decision. I even had decided to have a blood test for Tysabri (the monthly 3 hour trek for a blood infusion), and had agreed to start a course of Copaxone (the least offensive/effective in their armoury).
....But then I allowed gut instinct to change my mind. I'm not ready to start on this course of meds, but if I don't start now I will fall out of the stringent N.I.C.E criteria, and no longer be eligible for the meds on the NHS.
So my reasoning was to give the meds a go whilst I can. But I was feeling really unhappy about it, it just didn't feel right for me. Then I read a forum about the MS drugs and people's experiences, and there was good and bad stuff said about them in probably equal amounts, but seeing the pros ad cons argued out was enough for me to have an overwhelming certainty of what I wanted to do.
To be honest, although the nurses and doc were keen to reassure me it was my choice, I felt under pressure to start on these meds now, even though I didn't want to. I think that it a really negative reason for doing something I really have misgivings about.
I am prepared to accept the consequences of my decision, but hey, if it is my Wyrd to end up in a wheelchair then so shall it be whatever I do, and believe me I am doing everything I believe will actually help me cure myself - not just quieten the symptoms....so in doing this, I am throwing myself into dedicating my lifestyle to getting well, and staying well.

So far so good though - about 1 1/2 stone lighter than I was, and feeling really healthy (not counting the MS!). Even if I don't manage to change enough to eat myself well, it's doing me so much good.....now I have to get more on it with the exercising..it's lapsed a little over the winter months, but I'm ready to go...just waiting for my tattoo to properly heal before I jump into a swimming pool (grubby little things lurk in pools dont ya know!)

so now I need to find a pic of my tattoo (mine is the smaller of the two feet!)

x

raisin hell!

they sneak oil into raisins and they don't even tell you about it.....aaaaaargh!
I usually buy raisins from my health food shop. The ingredients are listed (in order of highest quantity first).. "raisins". Nothing else. This is a good thing, fat-free, sweet and nutritious, what's not to like about raisins?

Well, hidden oil content, as it turns out! Often it's palm oil too (forbidden fruits for me)...

I was in the local supermarket, getting some supermarkety things. We'd run out of raisins, so rather than getting them from the health food shop, I grabbed a packet off the shelf. Because I was in "supermarket mode" at the time, I flipped over the packet and read the ingredients..."raisins, vegetable oil"! Glad that I'd bothered to check, I put the packet back and looked at another type - same thing, then another...all of the packets of raisins, sultanas and currants had oil listed as an ingredient, sometimes specifying it as palm oil!
I asked at the health food shop and they couldn't even tell me about the raisins they were selling (gave me the "nutter alert - let's just smile sweetly at her" look).

This has really got me ruffled, it has implications for many foods I can still have! - such as my beloved Spiced Apple Crimble cake!
So far, I've trawled the iternet, and all I can find, in terms of suppliers, is in USA (there's a surprise!)I also found a recipe for making your own raisins in a dehydrator (which I don't own).


This is very depressing...and it's so far the biggest challenge to my resolve to stick to my diet in a kosher way. It's much harder to avoid raisins than resist something delicious like chocolate! All the "healthy" stuff you can buy, all the sugar free desserts!


x

the Christmas challenge....

I've found Christmas dinner.....
x

http://blog.fatfreevegan.com/2010/11/thanksgiving-meatless-loaf

where I need to be is exactly where I am

Eight months since the relapse started. Feeling fairly ok... I've been enjoying sleeping lots over the summer break (I'm a note-taker at university, so have very long summer holidays (unpaid, unfortunately!)...I think that's a good thing. Plenty of downtime for me to set to healing myself. I'm getting snatched moments of nearly-normal, just here and there...every now and then, for about five minutes at a time, my legs feel almost normal. It's a lovely thing! My big toes are still fuzzy throughout, and little patches on my legs remain fuzzy too, but it's an encouraging development. The MS nurses said it was likely to plateau at some stage and then very slowly heal for the last bit. They also said I shouldn't give up on getting back to normal for up to 12-18 months after the relapse...so I'm feeling really encouraged. It's also been quite a while since I became a Jelinek Swanker! Maybe, possibly, some of the many positive changes that I've embarked on are beginning to help a little... My energy levels are still pretty crap, but I'm coping ok..trying to remain well hydrated, as this helps fatigue levels apparently.... I am learning so much about the desecrated temple that is my body! I've never taken so much interest in human bodies before (well not the insides anyway!) It's all good stuff though, and although I still get bluesy mood swings sometimes (possibly a symptom of the MS, or perhaps its just being a mardy cow!) I'm feeling like I'm winning.....not being cocky about it, I know I've got a long and tricky stretch ahead, but at least now I feel like I have a toolkit and a roadmap to get me where I need to be (which, cryptically, is exactly where I am!) I had my vitamin D levels tested at the GP (who looked a little bemused and said he wasn't sure I'd get it on the NHS). When I got the results back, it showed my levels to be at 55mg/l. This is only just within normal range, and very much lower than the level recommended by the recovery program I'm following (Jelinek), and this is not even a base level, as I'd already started on high dose vitamin D....so probably was deficient, especially as it's summer now, and although not a scorcher, I have been consciously getting as much sun as possible, on top of the vitamin D supplements. Starting back at work soon, possibly by the end of the week (not sure of my timetable yet). I'm going to go for the maximum number of hours I can get this term. I think I'll be ok for working now. I'll be quite glad to get some structure back in my week to be honest. I think I've slept enough now...need to invigorate myself with work and exercise... x

bring me sunshine...

In a much better place than my previous post! Not finished my kitchen yet...stopped beating myself up about it and got out and partied more! It was my birthday at the weekend, and was playing a gig at a wedding/festi style party on Saturday..had a great night and a lot of dancing (I found a hay bale to recline on whilst dancing to save my poor tired legs!). My birthday week had started with a gig at a friends party/ barbeque followed by a sunny outdoor jacuzzi with friends the next morning. I have to say now, outdoor jacuzzis in the sunshine should be a prescribed therapy for people with ms! it was pure bliss! I could have stayed in there until I dissolved clean away!
I also had a meal at the sushi bar with a group of friends...splendid stuff! loads I could eat - even my vegan friends seemed to be heartily catered for. I bit the bullet and tried some raw fish sushi - it was really nice. I'll be more adventurous next time...in fact me and my son have decided to take up the challenge of trying everything on the menu (within restrictions of my diet!)..these includes things with tentacles! eek! Every time we visit the sushi bar, we'll share the next thing on our menu tick-list (to avoid trying to woose out of the scarier ones!)
So basically I took my own advice and got out and got a life! I guess I needed a few weeks of cloistering just to get to grips with my life-changing programme that I'm embarking upon.
I think at this point I should just recap briefly what my programme is, as it's the most positive thing I've come across since diagnosis, and I am launching myself wholeheartedly into it..
these are the changes I've so far achieved...

diet:
* no red meat or dairy (including goat's milk etc)
* occasional bit of skinless chicken breast as a treat
* virtually no saturated fats, including coconut, palm oil and egg yolk
* only extra-virgin olive oil for cooking

supplements: 20 x 1000mg fish oil capsules, just over 5000IU vitamin D3 (13 capsules), and 1 capsule of Glucosamine capsule (can't remember the strength offhand)

exercise: I've been making a start with organised exercise - ridden my bike round the block (It's quite a big block, with hills!), gone swimming, danced, used my son's weights (little dumb bells) as well as doing the exercises given to me by the physiotherapist

meditation: I'm starting to get the hang of it, but not doing the prescribed amount yet even when I remember to do it

sun exposure - I'm supposed to have 1/2 hour full sun exposure on bare skin each day...I live in Wales! fat chance, so I'm overdosing on vit D as a replacement (avoiding the capsules that have added calcium)

....all I need to do now is throw myself into making these things a routine. It's hard going! The diet was my first objective, then supplementation...both of these are kinda sorted now - though re-learning to cook is an ongoing voyage of discovery all on it's own!...but I'm not beating myself up about how long it's taking me to make all the changes I'm committing myself to.

So..getting healthier, feeling much happier....I think I might possibly have had a little relapse - my left thigh was really burning for a couple of days, and my legs feel quite numb-skinned (can't feel pricking of self administered pointy thing). It could just be that I've been overdoing it, mixed with it being my period - seems pretty likely, but if it is the beginning of another relapse, then hopefully it'll be a little bit easier on my body now I'm super-charging my cells with all the right fuel - for the first time in my life!...we shall see, though I'm not really expecting to see any real benefit for at least 9 months- 1 year...it's a long-haul journey!


x