Hanging onto your health with both hands

 

Springlight wrote:

From personal experience of ME, I'd second the magnesium as important – I was horribly deficient initially. And I'd add a metabolically active folate to the B vitamins and LOTS of B12. Again, only my personal experience.

Something else that's helped is taking a long hard look at my life & deciding that I get too stressed over relatively minor matters. . . . I was continuously draining my batteries by over-reacting to situations, mainly because I believed I couldn't manage them due to the ME. . . .

But I am improving! For a topical example, last month, I managed a visit to the local-ish bell foundry. Two years ago I couldn't have done that. Six years ago, anything over 50yards away necessitated the use of a wheelchair. 

Big ugly ugh on the wheelchair and YAAY for improvement.  (And for the visit to the bell foundry.  Loughborough, I assume.)  I've never been to wheelchair stage—on the other hand, I had a caretaking husband.  That first eighteen months of acute ME . . . I got up, got dressed, often in stages . . . went downstairs, also in stages . . . and spent the rest of the day on the sofa.  But I had to get dressed—otherwise I was an invalid.  It seems a really dumb thing to choose to spend what energy you had on, but it was totally a morale thing, and that's what I needed then.  Dressed I could, for example, ask my husband to bring the books and journals I wanted and eventually, word by word by sentence by sentence, began to learn about what was wrong with me.  I discovered magnesium lying on the sofa.  But I wouldn't have if I hadn't gotten dressed first.  This is the woman who used to get up and put her dressing gown on and go straight to her desk till lunch (taking an apple and a cup of tea with her).

And yeah, stress, totally.  I should leave my adrenal glands to science, they have probably mutated into a hitherto unknown substance which does not belong to this universe.  I'm pretty sure I'm volatile anyway, and I then got put through a variety of insalubrious experiences when I was younger which accentuated this tendency.  This makes my situation now both more and less endurable;  if you're born volatile I figure you're also born to deal with it.  So the essential framework is there, you might say, but it's like pouring the Atlantic Ocean into a two-inch storm drain.  Oops.  But at least you have the idea of channelling even if the practical details are a little inadequate.  And this blog, while a very energy-expensive means, is a daily reminder that my best aid is silly humour.*  I'm less over-reactive than I used to be, believe it or not.  Hannah says so, and she should know.  

theplotchickens writes:

I have fibromyalgia and Systemic Lupus. I supplement with magnesium, B vitamins, etc., but what changed my life and made me able to walk from one end of the (tiny) house to the other, and perform such miracles as . . ."combing all my hair in one sitting" was removing gluten from my diet. . . . My holistic doc's stance is that modern wheat and other gluten-containing grains are much stronger than our bodies evolved to deal with. The gluten causes inflammation.  Now, however, having been largely gluten-free for some time, I have observed . . . My body responds to gluten proteins as though I have the flu (minus the runny nose; just the massive body aches that are the body's response to inflammation.)

Sometimes people ask me if it isn't hard to eat a gluten-free diet … my response is that it's a lot easier than lying in bed unable to make it to the bathroom unaided.

Other of my friends with fibromyalgia and other inflammatory or immune response illnesses (including shingles) have tried the gluten-free diet with similar results. . . . It's simple . . .  go gluten free for 4 weeks, then spend a day in which you indulge in your favorite wheat-based treats, and see what happens the next day. You may not notice the difference in the gluten-free days, as the adjustments are so gradual . . . But then, WHAM, when they come back full-force after a couple of buttered scones, it's pretty hard to deny the evidence. . . .

Gluten is not my problem;  I've gone off it two or three times, once for nearly a year** and while some things certainly changed, they didn't improve.  I kept thinking it ought to be an issue . . . but apparently not.  Post-menopause when every calorie is an enemy I have more than once thought that I might rather be gluten-intolerant and be able to eat tomatoes,*** but hey. 

            It's interesting about the mock flu though.  For years after I went off dairy I used to permit myself an ice cream blow-out about once a year.  For a long time I could do this.  And then about five years ago—I think shortly before I stopped eating tomatoes, so it may all be to do with Getting Old and Losing Your Tolerances rather than just ME—I couldn't any more.  Wild, over-the-top inflammatory response.  Yeep!  Okay!  I'll be good!  Really I will! 

            One of the biggest ratbags is how long it takes you to get used to your major life change.  When I went off dairy I thought life was no longer going to be worth living.  No ice cream?  No cheese?†   And I missed it terribly for years.  The pizza-face thing kept me honest—most changes you make, as you say, are felt gradually, however dramatic the conscious experience.  But twice in my life it's been a startling ZAP.  Going off dairy was the first one:  I watched the stuff on my face and back disappear.  It was live time-lapse photography.  The second occasion was going off the tomato family.  I went from wondering how much longer I could type, walk or ring bells to Wait, remind me,†† was there a problem? in about a week.   The smell of a good spaghetti sauce still makes me whimper.  But by the time I stopped eating spaghetti sauce††† I'd become so accustomed to viewing myself as a (cranky) work in progress or a Heath Robinson contraption it was almost like well, okay, let's see what happens if we press this button and yank on this strut. . . . 

Blogmom wrote 

Now, however, having been largely gluten-free for some time, I have observed that . . . eating that lovely muffin . . . will give me aches and pains profusely the next day.

Yup. This is also seen in gluten-sensitive people with various forms of arthritis. It can be an issue even if you're simply wheat-sensitive absent other health problems.

Besides having a higher glycemic index than a Snickers bar, modern wheat is also chockful of proteins that can confuse and confound the body by escaping the gut and entering the bloodstream where they confuse and confound the immune system. . . .

There is a range of gluten intolerance, of course, as there is a range of almost anything to do with the human critter.  Spelt tends to be the wheat of choice for the mildly gluten-sensitive;  it's a much older, less overbred type of wheat, and people who can't deal with modern commercial bread and bready things may be fine with home-made spelt bread.‡  There's also rye, which has far less gluten than wheat;  and various other gluten-free cereal grains which clever people have contrived remarkably excellent bread-substitute recipes out of.  My last gluten-free stretch, Penelope used to make a quick 'bread' out of ground seed—a commercial (organic) mix of sunflower, flax and pumpkin seeds.  Well worth eating even if you can digest gluten. 

Blogmom also wrote: 

Chocolate is a very good source of magnesium. Chocolate cravings become evident when magnesium intake is low. That's my story and I'm sticking to it. 

And a very good story it is.  I don't know if magnesium is a common craving-blocking mineral or whether it plugs into my molecules particularly well, but I find it helps food-cravings generally.  I have recently raised my own magnesium intake and find that the gnawing, post-menopausal zero-metabolism-and-don't-want-to-buy-whole-new-wardrobe comprehensive desire for FOOD is significantly abated. 

Jacky wrote:

Modern medicine has a hard time with diseases that aren't straightforward and consistently quantifiable. They have a bigger problem with the psyche/body interface diseases and treating them well. 

Which includes ME, you realise.  Not unlike depression, we are regularly told that it's all in our heads (the brain-fog certainly is) and if we'd just get a grip and stop whining we'd be fine.  Even now, when both ME/CFS and clinical depression are official medical conditions which need to be treated as such and their victims handled respectfully if kindness is beyond the medic in question, you can still feel the 'malingerer' waves coming off the get-a-grip types in great drowning billows.  And as I keep saying, the last thing you need when you're ill is to get into some kind of confrontation with some bozo with a lot of fancy paper degrees and a totally closed mind. 

I have suffered from clinical depression in the past, and the problems ME sufferers have are similar to the problems faced by people with mental illness.  We aren't attractive people to be around. It's hard to live with us. Especially for us, and there is only one way to get away from ourselves – and no, I don't recommend it. 

I've been to the edge of that cliff and peered over it too.  Not a pretty sight.  And that popular myth that menopause makes you look at the stuff you've been sweeping under the rug all your life?  Not a myth.  I keep thinking that one of these days I will write a blog on some of the books on depression I've found helpful over the years, but I never quite get around to it.  It would be a high-energy blog and frivolous is a lot less demanding.

One of the most important lessons I learned about dealing with illness, is don't be so hard on yourself . . . keep chugging when you are going through a rough patch. 

Yes.  That's the bottom line of bottom lines, I think. 

holmes44 wrote:

my husband takes magnesium for leg cramps  

Yes.  It's crucial for me for this too.  I twigged that I'd stopped taking magnesium that time when I didn't replace the empty bottle not because of the increasing ouch level but because I was blasting out of bed two and three times a night because of the leg cramps.  This is even less ideal for someone prone to insomnia anyway. 

Blogmom:

Speaking of mood issues, we have had much less trouble with what we unfondly call "Seasonal Affective Doodah" since bringing our Vitamin D levels up*. Vitamin D has a wide range of other health benefits as well, particularly for people with inflammatory disorders.

Vitamin D is another very common insufficiency**. . . .

* One rat can do footnotes: Vitamin D vs broad spectrum phototherapy in the treatment of seasonal affective disorder. http://www.ncbi.nlm.nih.gov/pubmed/10888476

** Demographic differences and trends of vitamin D insufficiency in the US population, 1988-2004. http://www.ncbi.nlm.nih.gov/pubmed/1930752

Absolutely.  Take your vitamin D and smile.     

* * *

* I reserve the right to melt down about things like aggressive off-lead dogs and the misuse of 'lie' and 'lay'. 

** I think that was when I developed my intense dependence on Green & Black's, when chocolate chip cookies temporarily ceased to be an option. 

*** The rheumatism diet:  no tomatoes, potatoes, eggplant, peppers and mushrooms (except Shiitake, apparently).  And I know I've just been whinging about missing the opera on Saturday because I can't sit still that long, but before I went off tomatoes and their cousins I had got to the point that I couldn't close my hands when I got up in the morning.  It's made a huge difference. 

† As I get older the order has changed.  It's now:  No cheese?  No ice cream?  I keep thinking I'll try goats' or sheep's milk cheese some day—the parameters of dairy intolerance are also pretty varied.^  And then I think, yes, I will . . . but not today.  If it turns out all cheese makes me react—the pain, exhaustion and digestive hysteria are so boring.  

^ I can eat butter, for example.  

†† Unfortunately it has done nothing for Menopause Brain. 

††† And if I'm moaning, I miss fried aubergine worse. 

‡ It's worth getting your hands on somebody's properly homemade bread to find out if it's not the wheat at all but the 'flour improvers' you're reacting to.