Long MTHFRFlippin' Summer Daze

Yes, that is a play on words. For a number of reasons.

My Pug Mug. Always makes me feel like I have someone empathising with me as I fortify myself.

Firstly - and I will elaborate presently, these days are long. Looong. Mainly because (da-da-da-DAH!) I am not 100% (of my normal percentage anyway) again. There is a good (I *think*) reason for that.

Secondly - MTHFR. Yesss, we'll talk about that a bit today because I am working through this.

Thirdly - it is April and still 30-33˚C (86-91˚F). This is supposed to be autumn. ?? I mean, it is a lot nicer and cooler than summer (very pleasant, actually), but it just feels a bit weird. Having moved progressively further north over the last five years I am looking at my 'winter' wardrobe and wondering both why I packed it and brought it with us, and if I'll ever wear some of those lovely winter coats etc again. Which is strange really, because as a rule, I hate being cold. Then again, I am really not fussed on being hot. Once it hits 35˚ I can no longer function without air conditioning. Ok, well, I CAN, but not well. And probably not without complaining. I know I did it when I was younger (as with a lot of things!) but I cannot fathom how! But I do love 'rugging up', snuggling in bed and coming in from the cold. A nice walk along the beach in winter. I know, I need to learn to deal with that. But it's still very warm for April, right?

Lastly - Daze. That's what I've been in the past few days. I saw my doctor last week. And it was good. And things were looking up. What happened?

*for goodness sakes - this is not medical advice, this is me ruminating, masticating, and attempting to regurgitate what I am reading in a manner that makes sense to me. And it is mostly all personal to my particular genetic polymorphisms. If you think you need to look into it a bit further find a GP who specialises in nutritional and environmental medicine. 


I've spoken a little about MTHFR. It is confusing - to say the least! By no means do I profess to understand this, but I am constantly reading, pinning and searching for more 'simplified' explanations and diagrams. 

Because this is just nuts: (and note, it is the 'Simplified Pathway'!!)

From Dr Amy Yasko

I was searching for something to help explain "this week's problem." And that is a bit of an unfunny private joke between my husband and myself because for years it seemed that I always had 'something' wrong with me -  and it was never normal/typical/explainable. It was almost as if I had to outdo someone in being weirdly sicker than them - as if I was making these weird symptoms up. I only told my husband generally (and he did think I was looking for a sympathy vote sometimes - which is fair enough, this isn't how 'normal' people act), because I knew I'd get the hypochondriac look if I told anyone else. I was scared that maybe I was one. But these things sure impacted my life. So I kept pushing on trying to be everything I, or what I thought anyone else, thought I should be. Which turns out is exactly how people with my condition respond, and it makes things MUCH WORSE! So the whole 'being kind to yourself' idea - it's really important. Not easy to DO, but very important.  

Back to "this week's problem!" After feeling relatively well, one day I woke up exhausted. I overslept by nearly two hours and could still hardly move. I'm pretty sure my internal clock gave me a good shake because I was expecting a knock on the door early that morning! Then I had to sit down for a loooong time, try to drink something and take my pills.I was dragging myself around. Eventually I made it to a shower which I had hoped would reinvigorate me, but instead left me more tired, and I spent the afternoon in various states of consciousness on the sofa...again! And the pain was back. Bearable, but sore! I hadn't been that bad for about a month - so why now?

The only thing that had changed was that I had run out of SAMe supplement, for about a week. I have to order it from overseas - I knew I was low but I was hoping not to need it anymore. It takes about a week to arrive and should be here today (I hope!) and then perhaps, in a few days, I should be back on that road to recovery. I really hope!!

So why is it so important? SAMe is a methyl donor. When your body is not methylating effectively you will (among other things) accumulate abnormal levels of toxic heavy metals, be at risk for heart disease, stroke, dementia, some cancers, blood clots, memory loss, chronic inflammation and auto immune conditions. It is not a pretty list. It also restricts the body's ability to manufacture glutathione, which it requires for detoxification.

I found a few articles that I could understand (I am NOT a scientist, this is harder than learning Portuguese for me, it is a 'whole other language'!). I am just slogging through, trying to make sense - as are a great number of people. It is amazing to think this is really rather a common condition - just generally unheard of. I wonder what it will be like in 20 years time? I think everyone will be talking about their own particular polymorphisms and making better choices for their health. Well, that is another hope!

From the Article: Holy MTHFR! By Laura Matheos

The above link was very helpful for me. The point of this diagram is to show the cycles that happen billions of times per second in our bodies. MTHFR sits between two cycles, so its impact is quite far-reaching. Instantly 'serotonin' and 'dopamine' stand out. The connection between MTHFR and depression starts to sound a little more plausible, and also explains why antidepressants aren't always the most effective treatment.

The methylfolate and Methyl-B12 interaction, in a nutshell, is what propels your body’s ability to fuel every cell in your body with energy. If they don't interact, the red and green cogs don't turn properly either.  This is where the homocycteine levels get out of balance (increase risk of dementia, stroke, heart disease etc) and it also inhibits the production of glutathione, which means essentially: you don't detox properly - chemicals (cleaning, food additives, vaccines etc), metals, general stressors etc. (I remember very clearly doing a three day detox cleanse designed to flush toxins - it stirred them up but I couldn't get rid of them! I was very sick. A friend said to me that that wasn't normal, which started me thinking about the rest of my health.) The SAMe is needed in that last cycle on the end there. I can't explain exactly how, but it is supposed to be produced in all of these interactions and I'm not producing enough yet. So it makes sense to me that I crashed under the inability to deal with toxins/stress over a week. And I think that explains the joint/limb pains too. I am thinking of it a bit like having some sand in the gears, and need help cleaning it up. As I said before- not a scientist! Please don't quote me!

 And I am still trying to understand how to explain any further than that. 

I am anticipating the SAMe to arrive today, and with the addition of more TMG, I plan to have a better week next week. Especially as I looked at the calendar today and next week is making me feel a little weary in anticipation! I am going to have to be careful.

In efforts to look after myself, I am doing what I can. Yesterday I didn't physically have the energy to prepare anything for myself to eat. It's not helpful, but if you have an answer to preparing something gluten/sugar/preservative free from scratch when you can't even sit up on a chair, please let me know! I try to have something prepared just in case, but it caught me unawares. Today was a little better- in my Pug Mug (top photo) I have my magic elixir.... a ghee and cream sugar free dark hot chocolate. Lots of fats to fill me up and it feels like I am treating myself. I am a big fan of high fat, low carb. When I have the energy. Point being, (good) fat is good!

(I have gone a bit wild with the photo editing today. It was my whim)

I had the presence of mind (it must have been a good week, pre-crash) to make some broth this weekend. It was entirely too much work yesterday to heat some up, but today I managed broth and kombucha for brunch. Talk about spoilt! I have trouble with food in the morning (a zinc thing, I think) so it is often brunch, rather than breakfast. But I don't worry about that so much as I used to. So long as I am eating as well as I can, when I can. And also because I might have slept in a bit. Again... Interestingly, I said last time I had been sleeping better - and I had. But last night I was awake into the wee small hours again. Another sign of being out of balance. Interesting!

I also made this delicious loaf. I (heavily) adapted a recipe I have been meaning to try for ages- I can't even find where I sourced it. It became a chocolate, chia, pumpkin and walnut loaf. Slathered in ghee. I am thinking I will have to make a few of these and wrap slices in my freezer for those 'can't hardly move' mornings.

And I had it with a kefir-komboocha cocktail! Goodness me, who would want a 'typical' breakfast after that??

So I had really, really hoped to get some painting done this week. I am all up to date on my tutorials and classes I am following. Yesterday I managed to slump over my art table looking at my watercolours for twenty minutes, before accepting nothing was going to happen...and I fell asleep. Today I managed to set up a canvas on my easel and look at it for a bit. The only reason I got this blog post up was because I can sit in a chair better today, and I am a lazy typist- I only have to move my fingers (my wrists are collapsed on the desk, shamefully). But I can read and type, and feel like I have gotten a bit further into understanding my health and how it is affecting me - today! 

The kids have thrown themselves into movie making today, I can hardly believe how well they are working together it has been amazing. How nice it will be if they pick up tomorrow where they have reluctantly left off today. And I feel a little better and can lift my brushes! Then I might actually make some marks on that canvas...

Learning to Relax?

So it is an interesting kind of time. We have been flat out with co-ops and classes and visits and fairs and seem to have been out a great deal. Which ordinarily would necessitate a few days recovery after each outing... and it hasn't - this time. And I am sleeping better. Earlier. Still feeling tired, but not that complete exhaustion that is CFS.I have had to lie down once or twice when I didn't feel I could think let alone talk, but I haven't been wrung out to that level I am accustomed to. And it leaves me hopeful. It has only been a fortnight I have been noticing this - and I am anxious to believe it is a sign of healing - in case it isn't, but it has been great. I am not hugely energetic (I can't remember what that feels like - I remember a long time ago getting a lot done, but I can't remember for the life of me how it feels to want to get up and go for a run etc), but over Easter we went on two really big walks; one in the bush and one on the beach (how I miss the beach...) And though I literally fell into bed in those evenings, it felt good. A good kind of tired - like I'd earned it. Which may sound cray cray, but to muggins, that is a really big deal. Tired because of time and energy (well) spent - not exhaustion for no apparent reason. I didn't feel robbed.

As far as measurable achievements have gone, it has been a profitable fortnight. 

Probably top of my excitement list was bottling my first few bottles of 'booch'. Peach and ginger, raspberry and lime, and lemon and ginger. And I have to say - much much better than the stuff I've bought from the health food shops or cafes. Can't brew it fast enough to keep me happy. Thank goodness I have kefir to supplement it! My grains are doing well and I am pleased. There were a couple of days it wasn't looking so good, then I remembered we'd been out and I'd forgotten to feed them (I didn't have time to bottle any). So a bit more sugar etc and they are happy again. Just put down some lime and passion fruit bottles - looking forward to seeing how that one tastes... patience....!

And I was thrilled to be able to gift my first scoby baby :) 

Rollercoaster

 Up. Down. Really down. Life with chronic illness is like a box of chocolates. And so much unpredictable, unavoidable stress; I am not well enough to find a plan to help me cope yet, so until then, rest - rest -rest - if I can, and more waiting. So life is often a combination of small flurries of activity followed by long, frustrating stretches on the sofa. On a depression level this fortnight has been horrendous. And pain. Most of the time ok - certainly not as bad as many people, but it's there.

 Usually life is like this:

This week, there was some of this:

Always this:

And I am always beating myself up about 'complaining'. In a world that doesn't like to hear about the not-so-pleasant realities of life, I have to remind myself - and maybe share with some people who think others complain too much, we are entitled to grieve. Being honest is not being negative or complaining, we are trying to make sense of what we are going through. Yes everyone is going through stuff, but being constantly tired and feeling like you're about to lose the plot, or in pain - it's kinda not how you planned to be a 'productive member of society'. It is not wrong to mourn losing 'that person' that you were working to be. I still think that person is just around the corner, but what if they're not? Then you need to grieve a little more. There isn't a date stamp.

Not knowing when you're going to have energy to mop the floors again is good insentive to mop them while you can; but then you notice the dust, the oven, the washing pile... Before you know it that energy is gone. It is a lot like a video game - watching the 'energy bar' going down and trying to choose the 'most important' task out of the fifty you'd like to get done. Art doesn't usually make the cut unfortunately; it doesn't feed or clothe anyone (yet?) so it is not in the top ten.