My So-Called Life

The following is a glimpse into some of the ways my life has changed since ME became my constant companion.

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Vitamins, supplements and electrolytes, oh my! The only supplement that passed my lips pre-ME was an Emergen-C every once in a while. Now this. I just started taking B vitamins again after a 3-month pill hiatus. Every once in a while, I just need to get “clean”.

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My drug stash. I hoard them, but don’t take them. Call it preparedness or call it paranoia, I don’t mind. After winding up in the emergency room a dozen times, I like the security of having meds on hand. What if there’s an earthquake and we need immediate painkillers? Nuff said.

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This is an example of how I test drugs. That dot in my palm is 1/8 of a Xanax…which had no effect but a hive on my throat…which means I probably won’t try it again.

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Cramps, spasms, aches, sprains. I never knew you could have muscle pain like this. After bartending three 12-hour shifts in a row or after being on my feet for 15 hours during a restaurant opening, I never came close to the un-ignorable myalgia that exists in this disease.

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Yes, all these clothes are clean and, yes, they have been in this pile for a month. Folding involves a lot of arm action and I’m not willing to give up, say, loving on my dogs because I used up my arm movement quota to get neat clothes.

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Thank god we (he) built the walk-in shower when we first moved into this house. It makes it easy to wash 110-pound dogs and it gives a flat surface for a chair for me to sit on. Yes, this is a crappy metal folding chair ~ I ordered the fancy shower stool and it was large, cumbersome and unstable. I toppled off it within two minutes and I’m only wee; I can’t imagine a bigger person having to use one of those things.

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I took this picture in August. These are my “sun slippers” ~ because, even when it is so hot out that I have to lie in the shade with minimal clothes on, the ice blocks at the end of my legs need to be covered and in the sun.

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Shocking, isn’t it? Welcome to peaceful sleep. Zeo headband, amber-lensed glasses for blocking the blue light in my phone, cpap nasal mask and tape over my mouth. Haha! No wonder I’m exhausted. ;)

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Bedroom in the siting room. My husband moved to the basement room last year because he kept waking me up at night, but, this summer our bedroom got too hot for my sensitive system, so we swapped and I went to the basement. But, every teensy squeak of the floor boards above would wake me (and I don’t go back to sleep), so my husband moved to the living room where I couldn’t hear him. Poor guy.

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BUT, the basement bedroom has no window shades and even the light from the moon wakes me, so, as a temporary measure, we (he) covered the windows with tin foil. My own sensory-deprivation chamber. Luckily, we don’t have many guests. :)

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My crazy numbers: High heart rate because I dared to carry some stuff upstairs and low blood sugar because I dared to eat breakfast (I have reactive hypoglycemia).

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What my hair used to look like a few years ago and what it looks like now ~ lank, brown, going grey, unwashed, and always in a ponytail. I miss feeling pretty!

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My crazy skin. This makes me look so gnarly! My only constant skin issue is acne (which has been worse than ever since I came off the birth control pill 11 months ago), but, every once in a while, my autoimmune urticaria, sensitivities and rashes rear their ugly heads.

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Blood pooling. *No filters were used in the making of these pictures (although they were taken at different times of day and in different seasons). Thanks to Jackie at LethargicSmiles for the blood pooling photo inspiration.

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Some of the products I’ve purchased in the last year to try to help my IBS, my ANS, my allergies and my insomnia. I really miss the days when I didn’t read the ingredients of mouthwash!

Thanks for taking the tour! And thanks to Patrick at Quixotic for giving me this idea.

Over to you: What has changed in your life since you became sick?

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10 thoughts on “My So-Called Life

  1. Reading this I’ve just entered a C.S Lewis book, falling down a rabbit hole to a strange world, yet its a world that is in fact turning with the rest of the globe. You are one brave lady to have to endure all this, my life changes and limitations are nothing compared to yours. May our worlds continue to turn and may our bodies return to their zen states one day soon. xx

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  2. dawnhosking says:

    I have noticed changes in my hands and feet.

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  3. WOW! So much has changed for me – and I can really relate to the supplement picture!

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  4. Christine says:

    So much awesome stuff in this post! I look grey and washed out ALL of the time, and it’s gotten so bad that no amount of makeup helps. It makes me so damn sad.

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  5. Curiosity says:

    So much of this looks so familiar…

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  6. Claire says:

    I miss looking pretty too!!! I don’t have the energy to wax my legs or apply makeup. I rarely wash my hair. I don’t fit most of my old clothes and I don’t have the energy to shop for new ones.

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  7. bertieandme says:

    Wow, there are some serious histamine issues there! Dermographism, hives, oedema, drug reactions and some serious POTS. I’m looking forward to hearing through your blog posts if you’re going down the mast cell route (I know you’re trying the diet, but just wondering if you’re considering being tested) x

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  8. Lindsay says:

    wow, i can relate to a lot of things in this post! one additional change i’ve noticed since becoming sick is i have constant bags under my eyes – even when i actually get a good night’s sleep.

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    • E. Milo says:

      My eyes have changed so much! I look at the colour of the whites every day just to see if I’m getting better – when I became sick, they changed from white to grey-yellow. It’s amazing, the cleanest diet of my life, no make up, more sleep than ever and my eyes look so sickly. Deep dark purple circles and hooded lids, too, but the off-colour white is the most astonishing to me. They really are the windows to our souls!

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