Being chronically ill for many years, severely for the last two, most people in my life eventually stopped with the “Feel Better Soon” sentiments a while ago. Took them some getting used to and it still happens sometimes, but for the most part it’s known that doesn’t apply. Recently, a loved one said to me “I hope you feel better.” To which my quick sarcastic reply was “than what?!” She quietly replied “better than right now.”
<Insert tire squeal, stepping on brakes sound>
Oh, okay, well yeah, that would be good. So, being left to my own thoughts as is normal, I was thinking what is better? We’re taught that better is superior and in fact that is part of the actual definition. It’s ingrained that when someone says “I feel better” they’re all good and 100%. Looking up the definition online, here is what comes up first:
1.of a more excellent or effective type or quality:“hoping for better weather”synonyms:superior, finer, of higher quality, preferable, a cut above, … moreantonyms:worse, inferior
2.partly or fully recovered from illness, injury, or mental stress; less unwell:“she’s much better today”synonyms:healthier, fitter, stronger, well, cured, … moreantonyms:worse, sicker
1.the better one; that which is better:“the Natural History Museum book is by far the better of the two”
2.one’s superiors in social class or ability:“amusing themselves by imitating their betters”
Well look at 2… PARTLY recovered; LESS unwell. Yes, I can feel better! Not well, not healthy, not great, but better. Better than sleeping for days straight. Better than when I can’t get out of bed. Better than when I can only get to the bathroom and back. Better than… Am I going to feel better every day? That’s the dream but no, I’m not. Just as I once had to redefine ‘good’ I’ll now do the same with better. Today I was able to do this, that’s better! 🙂
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My bedroom has become the place I spend most of my time (no surprise), and my friends and I have been joking about making it an oasis. We’ve already done that with my bed – oh how I am in love with my bed… But since this is where I normally am now, and it’s very plain and bleak, oh and bright – something needed to change. Having headaches and migraines since childhood I’m used to light sensitivity – or rather, I thought I was. The last few months none of my tricks have worked and I’ve just suffered with the affects. Having no income, I couldn’t just buy things to make changes. But you know how parents are – I wouldn’t be surviving currently without mine – anyway, I live in a condo my Dad owns, and with the financial burden this illness has created for my family it’s been difficult for my Dad to add or change things. Well, thermal room darkening curtains have been on the “list” for a while. This week Dad is on vacation. He checked to see if I was having an okay day and then came over to put up the curtains! He also surprised me with getting them for the living room as well, knowing my daily goal is to make it to the couch for a bit! Oh the difference it has made – in just a day!! I really can’t explain, but I know fellow pwme’s will understand… And, they’re pretty 🙂 A little bonus while he had his tools here – pictures that I’ve had sitting in a box for more than a year got hung and now I can see my favorite picture of my furbaby I miss so much all the time.
I have the weirdest cravings coming out of a crash. I guess when not eating for a few days (this time about 4 days) it’s natural for the body to want sustenance. But me, I want various things that rarely are good for me or even cooperate with my body. This time waking up – it was french fries with ketchup, and I’m not a ketchup person! That rolled into wanting cheesesteak, pizza, pumpkin cheesecake ice cream, fresh baked chocolate chip cookies and sushi. Of course, I first ate rice crackers, then salmon when my stomach was ready. Yay…
I spend a lot of time alone these days. For a while now since my illness has been ruling my days. It was suggested for me to write, blog, share – so here we are. A little about myself…
I’ve been unofficially sick since January 2000. Well actually, since 1992 but doctors really didn’t consider endometriosis that serious or chronic then. I was given a chronic diagnosis in 2003 – Fibromyalgia. Testing was always inconclusive for Lupus and through this day they won’t officially say that. I went against my Doctors in 2006 when I refused to just be drugged to get “relief”. I was great for a few years with a considered recovery, moving forward in my career, being a productive member of society. There were a few flares through the years, but short in duration and I usually bounced back quickly. Hidradenitis Suppurativa showed up in 2010. Very mild then, the dermatologist pretty much dismissed it saying it’ll be there but shouldn’t really affect me. (HA!) Then in the summer of 2013 I started having more flares and weird episodes of sleeping for days. Each time was worse, usually after doing something big, traveling, working a lot or a lot of stress. My doctors were baffled, of course tests showed nothing. Because of the hypersomnia, went through a sleep study and those doctors were mystified by my tonsils. MUST be sleep apnea! So, went through surgery, had my throat reconstructed, and… nope, no change. Well actually, I got worse. I took ME/CFS to my doctor and was told yea, that’s most likely it but we can’t help you… And I’ve now been housebound since June 2015, many of those weeks bedridden.
Ok, so there’s a little information. More to come, I think. My hands aren’t really cooperating with me to do more now.