Well, it's been awhile, I know. Things have just been, well, hectic. Really, really, hectic.
As good an imagination I have, and as many times as I imagined it, well, winning my benefits hasn't solved everything or made everything painless or simple. Simpler , yes , thank goodness, because I don't think I could have taken much more, mentally or physically if things had continued along the lines that they were going much longer, but I've been tired, of course, still sick, and very overwhelmed! It's not easy catching up on several years of wants, needs, and obligations. As much as I've had to learn to use my limited energy and brainpower as wisely and efficiently as possible the last several years, by the grace of lists, prioritizing, and even, technology at my disposal, the last few months have been rough! But better by far, than any in many, many, years. For that, I am so grateful.
Slowly, I have started to feel like I'm becoming whole again, a "real" person again. My identity re-forming, you could say, because I think, it's hard to have one when all that matters is surviving. Between what I have learned about myself, and life, post-illness, and through the hard times, and the freedom that financial security brings, I am starting feel the jagged edges of my spirit smooth over, the holes fill in, finally, like a Phoenix rising from the ashes, I can rise and spread my wings again. But like a butterfly coming out of a cocoon, they've needed some time to dry before I could spread them.
So many things, large and small. Being able to afford salon tresses, and rediscover my passion for fashion, to eat out, to eat healthily and conveniently (because when I don't it just causes major regret, as many of my fellow weird chronic disease suffering readers well know, haha) to be able to hire people to do things I can't do for myself... I feel a little more like the woman I somehow became while I was waiting to live again. I still can't quite grasp my age, I still sometimes have to remind myself that college guys are way too young for me, for example, haha. I still feel surprised and amused when I hear myself say my age aloud. But I do feel more comfortable in my own skin. I don't feel like I owe the world an apology for not having life they think I ought to anymore. My life is what it is, I accept it, it's not my problem if anyone else doesn't.
Being able to buy things I want, just because I want them (to a certain extent of course!) is amazing. Not having to go without my medications or supplements because I can't afford them, a huge gift. I love my home...it's comfortable, convenient, and best of all, it's ME. I seriously feel like a princess in my bed, it's like a puffy white cloud, with my rouched, white duvet-covered-down comforter, gel pillows, blue sateen sheets, and wool mattress liner (heat is a problem for me while sleeping so being comfy in bed was a big deal...) The only thing I want for lately is, ENERGY, and well being of my body. There is so much to be done, there has been so much I wanted to get done, and I couldn't wait...partly because I so desperately wanted to be able to rest, just rest, so I felt like I had to hurry up and get it ALL done. It's been a challenge to keep sane...still running on will power, and dealing with other people's stresses along with my own. But I'm learning to take things in stride, and stop letting panic rule me.
Thankfully, my POTS has stayed pretty stable. It still limits me in that I can't be upright a normal amount without consequences. But the random flare ups of tachycardia and near-fainting are mostly under control. (It's recently dawned on me that my stomach issues would probably be a lot better if I took my Mestinon around dinnertime...my Cardiologist had said she wanted me to take it twice a day, in the evening if need be...but either she or we or didn't or I didn't get the connection between the timing and it helping my stomach work normally. Now to make myself a reminder so I remember to implement this on a more regular basis!)
Other nervous system issues (or possibly hormonal?) are still there...tinging hands & feet (and even an occasional numb thumb?!?) have given way to random burning on the sole of one foot. Copious perspiration, which was an issue back in December, was improving, until this crazy skin itching drove me to my PCP and he gave me Prednisone in case it didn't improve, and against my better judgment, a week later I took the first two only to feel it wreak havoc on my body within a couple of hours. Back was the pouring sweat with the slightest exertion, along with hot flashes, nervousness, anxiety, sugar intolerance...I see it all pointing towards an exacerbation of what Alternative medicine calls Adrenal Fatigue, I'm just too lazy right now to fully research it.
But amongst the toughest are still the lack of energy/stamina, and the ease with which my brain power gets drained. (I started a new supplement to hopefully help that, will post something on that soon.) I never get everything done that I need, though I must confess, I probably had my priorities a bit skewed, and am still working on that. For example, I'm supposed to have someone come help me with things like cleaning, grocery shopping, laundry, and cooking if I need it, but instead of getting that all set up, and starting to get organized (I still haven't finished unpacking, and I need to go through a ton of paperwork, file, and get rid of the rest) I've been using up my energy on more wants or items of slightly lesser importance (from getting my car fixed, to getting the best deal possible on a TV) plus I've been pulling Mom duty solo the last few months...We may have had our differences in the past, but I'll be darned if I have a second parent end up, well, like the first one, and she's been having her own health challenges, plus her cognitive function is about where mine was at it's very worst so that's been another challenge to my energy and brain power as well... I even took us on a mini-vacation, a cruise for 4 days, to keep us both from having nervous breakdowns (oh yes, it's been that tough) which was lovely...but too short! We'd just started to relax when we had to come home! But yes, I highly recommend a Cruise for my disabled friends. It's wonderful to be fed well, have your room tended to, have all kinds of entertainment (from staring dumbly at the waves, to sunbathing, spas, slot machines, shows to shopping) and have your bed nearby if you should feel sick or tired at any time. Yes, the walking was a bit rough sometimes, but you can bring a scooter on board with you if you need to. I'd recommend a bottle of meclazine, too! One day I hope to do it again, and this time, go a little further from home.
Along with extensive supplement regiment (which I am now cutting back on to check for allergens that may be causing the relentless itching affliction) I have been seeing my regular doctors, along with a new one or two, and doing some spiritual work, which is helping, probably most of all...It's been a tough road, still being sick, and I've had a lot of anxiety about time and money running out...I never want my life going back to the place it was, but I think I've begun to strike the right balance. I feel more grounded. I'm starting to see my precious few friends again and not feel so horrible because I have so much to deal with I can't give them the time they deserve. (Though I'm still having to hold off on having people over for a get-together or dinner, like I so want to, until I'm a bit more organized and have a little more stamina.) Up until last week, I wanted to run off to another country, ASAP, but suddenly, I realize, it's probably not the smartest idea, healthwise, and also, if I get organized here, I will be able to finally get that rest...Just a week or two of tranquility and peace, at home, would go so far, I think...
Today, something silly went wrong, and I found myself muttering that I hated my life...then I stopped, and realized, no, no, I actualy really DON'T! Life is...well...not bad these days! :)