I still haven’t started the vitamin A. It took forever to find one to the specifications the doctor wanted and then I had to order it online, so really the supplement program hasn’t even started in earnest and I’ve already broken the bank. Today, at the medical center, the sleep study doctor said the same thing my Dad said, “Stop wasting money on all the supplements” and, damn, they ARE expensive. $160 I spent yesterday to replenish my stock. That can’t last too long with no income.
You know what else is expensive? Food that doesn’t have dairy or wheat or anything that tastes good in it. Another $160 (coincidentally) at the grocery store today. But I was actually kind of proud I made it to the store. I hate grocery shopping. It wipes me out and all the label-reading gets me frustrated and it is SO FREEZING ALWAYS. I must have been feeling particularly vulnerable and deprived because I bought 4 bars of chocolate (all 70% cocoa with no dairy) and 2 tubs of ice cream (dairy-free, sugar-free, gluten-free, fun-free), 2 bags of chips (taro and carrot/ sweet potato, the latter which I can pick around), and 2 bags of gluten-free oats (to make granola and breakfast oat bars). I also bought some frozen fruit for smoothies and some guacamole and ….turkey bacon! I’ve never tried turkey bacon, but anything resembling bacon — even without the eggs and toast — will make me happy. It occurred to me that, since I can have oats, maybe I can have black pudding!! Oh, that would make me so happy (I don’t think most Americans understand this)… But it probably has way too much fat to justify it as a “lean meat”, eh?
It just occurred to me that I pretty much missed the vegetable aisle. Oh well. I’m pretty sick of salads. I’ve fallen into a routine of a smoothie and a bit of granola for breakfast, something salady for lunch and dinner has been fish with veg or chicken broth with veg for a homemade “soup”. My Dad made us bouillabaisse while he was here — from scratch with fresh seafood. It was fantastic! The next night we grilled a whole salmon. But, honestly, I think I’d give a limb — or at least a toe — for a baguette smothered in Brie with a burger dripping fat on the side and some popcorn for dessert.
Rag and Bone Shop of the Heart 
I don’t know if you are familiar with the eating habits of Americans on disabitly but we sort of starve. I mean no disrespect.
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I absolutely understand that and, even worse, most people with ME/CFS can’t get disability, so they are in an even scarier situation. No job, no health insurance, no disability ~ many of the people I am in contact with feel like there is nowhere to turn and they have been left to starve or die. And then there are those who are not reaching out on the internet because they probably have lost everything and don’t even have access to family or healthcare support, let alone online support.
I am extremely fearful that I may soon have zero choice in what I eat because I won’t be able to afford the choice. I’m trying very hard to focus on getting better and not on the fact that I have no income and won’t be able to get disability. I am only at the beginning of a journey that could get much, much worse. I live in terror of losing everything for which I have worked all these years and not being able to get any help from the government that I have paid into. Food could be a luxury, internet could be a luxury (in fact, at one stage in my life they were), healthcare already IS a luxury.
And I am acutely aware that there are people worse off than I am right now. I think about those less fortunate every day. It keeps me motivated to not wallow in my situation, to dream about making change in this world, to do the very little that I can to be kind and spread joy… or at least share in the collective experience.
I can only try to do everything to reclaim my health ~ or part of it. Because nothing is more important. If you or people you love are on disability and close to starving, it makes me feel angry and helpless and sad. But know that there are a lot of us out here sending what support we can ~ even if it can’t buy food or pay the bills.
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