Eight months of silence

Do you know how long it’s been since my last blog post?

EIGHT.
MONTHS.

If that doesn’t seem like a long time to you, let me remind you that it’s possible to grow a tiny human being in that amount of time!!! (Well, *I* can’t do that, but other woman who still have wombs can. Would you believe today marks a year since my hysterectomy?! Where did that time go?)

I wish I could tell you there was an exciting reason for my absence.

I won a trip to an exotic destination – so I’ve been away travelling…

A wrote a story and a big publisher loved it – so I’ve been busy doing the final editing before it hits the shelves…

MARVEL called, and told me they needed my big brown eyes to feature beside their next superhero – so I’ve been busy filming…

But, as is often the case with chronic illness, the reason is boring.

Fatigue has been kicking my butt.Screen Shot 2017-05-16 at 8.06.04 pm.jpg

I know, I know, I’ve talked about being tired before. Because I have both dysautonomia and CFS/ME, fatigue is a big part of my life.

But over the last year, I’ve noticed that I’ve been able to do less and less, because of the constant, crushing weight of exhaustion. The decrease was so gradual that at first I didn’t really think much of it; I just accepted it as part of my illnesses, and did my best to keep plodding along. It’s not abnormal for me to have a bad week, or a bad month or two, where my symptoms are worse for no particular reason at all. So just keep swimming, right?

Eight months of treading water later, I caught myself mid-sigh. It was the kind of sigh you do to prepare yourself before you pick up something heavy, or attempt something particularly taxing; a bracing kind of sigh. What was I mentally and physically preparing myself for? Stirring a glass of water with a teaspoon, to mix the medication in.

That’s when it hit me just how tired I was, and how long I had been that tired. There hadn’t been any ‘up’ to offset the ‘down’, which meant this wasn’t part of the normal ‘up’ and ‘down’ of a fluctuating chronic illness – it was something more. No matter how much I’ve rested, or how carefully I’ve rationed my ‘spoons’ (energy), most days I’ve been so exhausted that showering myself is a mammoth task – let alone accomplishing anything productive. Which means, for a while, most of my creative pursuits (like blogging, sketching, painting, digital drawing) have had to be shelved (and oh! how I’ve missed them!).

It’s possible that my illness has just progressed, and this level of exhaustion is now my new ‘normal’. (I hope not!) But I didn’t want to take that for granted, when it could just as easily be something fixable (like a simple deficiency). So I took myself off to a GP for some blood tests.

Almost everything came back normal – zinc, potassium, magnesium, thyroid hormones etc. The only thing that stood out was that my iron levels are quite low. That’s not new – it’s been quite low for several years (a result of heavy bleeding each month, and the inability to eat food for several years). I’ve tried taking iron supplements, but they made me incredibly nauseous (a known side effect). Iron water was a less nauseating alternative, but it wasn’t strong enough to boost my numbers by much. My GP decided it was time for an iron infusion.

I had the infusion a week ago, and it was a surprising non-event at the time. I had heard of people’s BP dropping so much that they had to be hospitalised; so when I just got cold and tired and had a bit of abdominal cramping (all normal reactions), I chalked it up as a win.

Until a few days later, when I broke out in hives.

*sigh*

I popped into my local ER, just to confirm that it was hives (and not something contagious). They confirmed my suspicions, but because I can’t take antihistamines (some of them give me hives, not to mention tachycardia, heart palpitations, and serious chest pain) they couldn’t offer anything to help. So I got through the weekend by smothering myself in calamine lotion (which means I had to attend both hubby’s birthday dinner and Church looking like I had leprosy!).

When that wasn’t enough to keep me from wanting to tear my own skin off, I went back to my GP, who prescribed a short course of corticosteroids to help my body calm its farm.

Now…we wait. It takes around two weeks before the iron really kicks in, so at this stage I still have no idea if all this was worth it. It’s very possible that it won’t make any difference at all (gulp!). But if it does help with my fatigue, I’d do it all again, because…

I’M SO SICK OF BEING A PERMANENTLY EXHAUSTED PIGEON! 

l-7580On the positive side, while I’ve been spending so much time cooped up in bed, I’ve found some really inspiring ‘arty’ channels on YouTube. They’ve been brightening my days, so I can’t wait to share them with you (when my energy / brain power is back on track)

In the meantime, I just wanted to pop back in here to assure you all that I’m not dead.

Just dead tired.

bear-1383980_1920.jpg

xx S.

 

5 thoughts on “Eight months of silence

    1. Aw, shucks! Thanks for the encouragement about my writing 🙂

      Unfortunately, it’s now been three weeks and the iron has done absolute diddly squat :-/

      But I haven’t given up hope! I’m just moving onto the next thing! (CoQ10 is next on my list to try!)

      xx S.

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      1. This research article found a connection between low CoQ10 levels and fatigue/memory issues in CFS: https://www.ncbi.nlm.nih.gov/pubmed/20010505

        If you’re considering CoQ10, you should look for a CoQ10 supplement that is both water and fat-soluble to be sure your body is actually absorbing it. Research shows that solubilized formulations of CoQ10 are absorbed better by the body and lead to higher plasma CoQ10 levels.

        Source: https://www.ncbi.nlm.nih.gov/pubmed/?term=Plasma+coenzyme+Q10+response+to+oral+ingestion+of+coenzyme+Q10+formulation

        Liked by 1 person

      2. Thanks for those links! I have CFS/ME in addition to dysautonomia, and I’m aware that CoQ10 has been shown to help some people with CFS/ME. I’m not sure how much (if any) research has been done into how CoQ10 helps those with dysautonomia – but I figure it’s an easy, fairly inexpensive thing to just try and see how it goes 🙂

        The form I’m planning on taking is this one here (starting with the 100mg, and working my way up to the 300mg).

        https://www.bioceuticals.com.au/product/preview/Ubiquinol-BioActive-100mg

        It’s an active form, which hopefully means my body can skip the process of breaking it down, and just get right to using it!

        xx S.

        Liked by 1 person

  1. CoQ10 supplements are usually found in two forms: ubiquinone (labeled CoQ10 or Coenzyme Q10) and ubiquinol.

    While it’s true that ubiquinol is the active form of CoQ10, our body is actually continuously converting between the two forms depending on our current need.

    Regular CoQ10 is a large molecules that does not dissolve in water and dissolve poorly in fat. Since regular CoQ10 dissolves poorly, our intestines have trouble absorbing it. The study I linked above showed that water and fat-soluble forms of ubiquinone and ubiquinol were better absorbed by the body and led to higher serum levels. Whether you choose to take ubiquinone or ubiquinol, make sure you look for a supplement that is both water and fat-soluble.

    We wrote an article about it here to help explain the absorption issue: https://www.qunol.com/best-coq10-water-soluble/

    Let us know if you have any questions!

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