At all. Just found out that the agency that sends me a homemaker has stopped carrying me as a client, since Traci left. Never mentioned it when we were discussing the new person’s days and hours. Never hinted that there wasn’t going to be a new person. Apparently, my caseworker from the overseeing agency was supposed to call and tell me this last week, but my caseworker is, well, no one called if that tells you anything. Meanwhile, I have trash to go out, I need groceries, etc. Well, that’s just my tough luck, I guess. Called my caseworker, but of course only got voicemail. I indicated that I am not happy, but I doubt that counts for anything. They say a measure of a society is how well it treats it’s neediest members. Ours is sadly lacking, and generally treats the poor, the ill, the least fortunate, as people who need to be punished for not being rich, or something. I’m just really, really angry, and feel like I really don’t matter if you can’t even be bothered to mention to me something that is really very important to my being able to get by.
Seems like an oxymoron, doesn’t it? Not just a day for beer and barbecues.
On the homefront, my new homemaker did not show Friday, did not show again today, although I really wasn’t expecting her today. Traci worked most holidays, only because some of her clients were Personal Care, and you kind of have to show up for that. So I’ve been alone for five days now, and it is starting to show. How did I do this all those years without going stark raving mad? Or maybe I did, and just no one noticed, including me. Haven’t gone out because was having a lot of pain, and then the more I am alone, the harder it is to motivate myself to go out, reach out, whatever. It sucks. I need to figure out how to work this so I don’t get back to the miserableness I had been in for so long. Join something? Something that you can just not show up for when having a bad day. Does anything like that exist? Miss my Traci. Miss her showing up when I expected her to, and just miss her in general, although we have been texting a bit, and I hope to see her on the weekend. Okay, done whining…for now.
As an example, I posted this on Tumblr first. What? What about this blog? Well, some of it references Tumblr, but also, I get more feedback on Tumblr, it seems, and I’ve learned to love feedback, although when I first started blogging, that wasn’t my main reason or goal. Here’s mine:
1. John Barrowman. Sometimes he seems so annoying and bizarre and yet, how can you not love and admire a man who is so mischievous, so cheerful, so kind, so caring, a man who makes you smile just to see his face on your screen. Honestly, he never fails to make me smile. Ever. When I first saw him on Doctor Who, I resented having an American on my fav Brit show (I’m an American), but by the time he got left on the space station, I was in love. Then there’s Janto, of course. Janto is my life, in so many ways.
2. It’s so great that instead of post after post of who this celebrity was with, or who they cheated on, or what drugs they were on when whatever happened, we are seeing so many celebrities use their position to support important causes, whether it’s save the rhino or the ice bucket challenge or whatever. This makes me happy, and gives me hope.
3. This quote is why I love the internet. I love that you can jump into a discussion with someone without first having to go through the whole judging on looks, accent, clothing, skin color, place of origin, etc. Nothing is complicated by those unconscious judgements we automatically make when we first meet someone.
“Nothing I do on Tumblr is complicated by gender bias, racial bias, anything like that,” she said.
4. Just discovered there is a thing called ‘dyscalculia’, which I seem to have. This, Asperger’s, OCD. I am a mental health banquet.
Am getting kind of manic, so called pharmacist who said stop taking Trazodone because it’s working exactly the opposite to how it should. So have to call doctor tomorrow to discuss alternatives. It was fun while it lasted, though. LOL
It is a stunningly gorgeous day. Mid fifties, windy, sunny blue sky
with clouds floating here and there. I am energized and have loads of mental energy, a rarity with fibro. If this is what Trazodone does, why didn’t anyone give it to me before now? If feels so great to be able to Get Things Done. Yes!
Now, for the bad news. My homemaker, my Traci, is leaving. Two more visits and done. On the bright side, for her anyway, she got a much better job with benefits and vacation and sick and personal days, so I am very happy for her. Not so happy for me. She’s been my homemaker for eight years. Eight. I think that’s a record in the ‘lasting in a shit job’ category. Cleaning other people’s toilets, doing other people’s laundry, all for barely above minimum wage pay with NO benefits and no pay for mileage or travel time. I hope we’ll be able to keep up the friendship part, but it’s never the same to come back to a place that used to be a job, as anything other than a worker. Like a friend.
You have to adapt. Part of zen is learning that it’s the wanting things to stay the same that causes suffering, because life is change, and if you can’t adapt and come to terms with that, you are screwed. I choose happy, so adapting is something I work on. Ah, well. My Traci:
Found this on Spoon Shortage Sue Facebook page. It pretty much sums up my philosophy of life:
Then there’s this one, that just made me laugh, because it’s so apt:
Been getting things done, in spite of pain. I seem to have loads of energy, relatively speaking. Last night, I was tired from not sleeping much lately. Fell asleep at 1am, awake sometime after 2am, read, got up, cleared off and rearranged desk and side table that is part of my office setup, cleaned out and rearranged the middle desk drawer, cleaned out my basket of rocks, shells, and teeny ceramic animals. Tired again, by 6am, slept til alarm went off at 11am. So happy I thought to reset it, or I would probably have still been sleeping when my homemaker came at 1pm. Never a dull moment around here. LOL
Taken Wednesday. No reason to post both pictures, but they make me smile, so there.
It got cold today. Over the course of a few hours I closed one window, added a sweater, closed another, then another, changed to a heavier shirt, closed another. Then turned on the fireplace. Been organizing my desk and cubbies and such, but it is slow going because I am still in a lot of pain and it’s a lot easier to mess about on the laptop. But I’m making progress.
I cooked a couple of days ago. Make a sweet and sour chicken thing that wasn’t very tasty at all, but edible. Just finished it off today. Added some mango chutney, which helped with taste. I love mango chutney. I have a recipe (I hope) that I made long ago that, like this one was meant to be, was actually like sweet and sour chicken, not that horrid pink sticky glop you get when you order in. Who thought that up?
It’s so nice to be cold and need a fireplace, than to be hot and sticky and need…well, there’s nothing that really helps when it’s hot and sticky. Even the a/c fights a losing battle. That’s it for now.
For just one second, look at your life and see how perfect it is. Stop looking for the next secret door that is going to lead you to your real life. Stop waiting. This is it: there’s nothing else. It’s here, and you’d better decide to enjoy it or you’re going to be miserable wherever you go, for the rest of your life, forever.
— Lev Grossman
Giant strawberries. So large they actually have cores. Unpleasant cores that need to be removed. That seems the only size available anymore. Smaller strawberries taste better, growers and sellers, and cores are just no.
Also, has anyone noticed that the tube in the roll of toilet paper is twice as big as it used to be? And now, all the tp I’ve seen in the stores is narrower, and the roll is about half as thick. I know grocery shrinkage has been around for some time, but come on. I don’t know how to combat this, does anyone. I read sometime ago about an olive canner who realized that if he left one olive out of every jar, his profit would increase dramatically. I think this is where the whole thing started. You pay the same or even more for less, and what recourse is there?
Yay, done ranting.
Came across an article. Here’s what I learned from it. Bought the book mentioned in it and am reading on Kindle Cloud Reader. I love Amazon. Really, I do. Anyway:
“Research on fibromyalgia has lagged far behind other diseases, bogged down by controversy and a century of arguments about whether it’s a “real” illness.
This changed in 2002, when a groundbreaking study showed abnormalities in how the brain processes pain in fibromyalgia.
A much bigger factor is a stress (or danger) response that has gone haywire and is constantly on “red alert,” leading to a chain reaction that results in fatigue, brain fog, and muscle pain.
fibromyalgia is in many ways a sleep disorder, a state of chronic deep sleep deprivation. Studies have demonstrated over and over that patients experience inadequate deep sleep that is frequently interrupted by “wakeful” brain waves. This deep-sleep starvation contributes to the fatigue, muscle pain, and foggy thinking characteristic of the condition.
Treating sleep is the key to treating fibromyalgia, and it’s where I see the most benefit in reducing pain, fatigue, and brain fog. Sleep must always be improved before any other treatment will work, so it’s vital to address this with your health care provider to treat hidden sleep problems like obstructive sleep apnea and then add medications and supplements to help restore normal deep sleep.”
The sleep thing. I am dramatically better when I get enough unbroken sleep. Fewer hours or more broken sleep means more pain the next day. I’ve also finally connected weather to pain, because it got noticeably more humid the last two or three days, and I have been in a LOT of pain that pain meds aren’t helping with. In spite of rainy and showery days recently, the humidity stayed below 50%, and as soon as it went above that, ow. Major ow.
I so far am not nearly as fatigued as I was before the surgery, as well as a great deal of the time since I first got this eighteen years ago. Feeling hopeful that when the trazadone really kicks in I will sleep even more and better and have less pain. We’ll see how that goes. I try not to look ahead ever, but sometimes that little spark of hope starts burning.
That’s it for now. Just got started into the book, so if I learn any good stuff, I’ll post it here.
“We cannot tell what may happen to us in the strange medley of life. But we can decide what happens in us, how we take it, what we do with it – and that is what really counts in the end.” ~ Joseph Fort Newton Words I live by, actually. The only person you have control over is yourself.
Surround yourself with people who make you happy. People who make you laugh, who help you when you’re in need. People who genuinely care. They are the ones worth keeping in your life. Everyone else is just passing through.
— Karl Marx
Karl Marx? Really? Good advice anyway.
Hey, world, I have fibromyalgia. Don’t worry, I don’t need anything from you. No one knows what causes it, or what to do about it, so those of us who have it just have to learn how to live with it. Some days are good, some days are awful, and there’s no way to tell in advance which will come up next. I’ve learned to not think ahead, not plan ahead, just live in the moment, which is something I learned from Zen Buddhism* before I ever came down with this lovely…syndrome?. (Syndrome: a collection of symptoms that are characteristic of a disease or other disorder.) Living in the moment is really freeing. My friends have come to terms over the years with me not being able to commit to anything more that a couple hours ahead. Ask me on the day, not even the day before, because I cannot predict how I’m going to feel or what I’ll be capable of doing any further ahead than that.** I tire easily and quickly (pain is very wearing), I have to take short rest breaks in the middle of everything, I may have to just lie down at some point, one never knows in advance. I take various pills, some of which actually help, but only for a certain period of time, after which they quit working and never work again, even after years of not taking them. I took Atavan for a while probably eighteen years ago. I took it an hour before bed, and when that hour was up, I was asleep. It worked for a blissful month, and then never again. I recently tried it again after getting a scrip for anxiety, just in case I had some about the knee surgery. I didn’t, but I tried it for sleep after, and no. Ran out of percocet from the surgery, which one pill worked for sleep, then I needed two. When it was gone, so was sleep. Doctor prescribed Trazodone, which is not helping at all. I can sleep for two or three hours sometime in the early morning. Functioning does not happen, more pain does, when I don’t get enough sleep. Not sure what I’m going to do now. This is a long ramble, isn’t it? And all one paragraph. Not sleeping is not good for writing, either. Apparently.
One thing about me is that I don’t want to be known as a person with fibro. I don’t want to be identified, or identify myself, as that. I am not my illness. It does not define me. I am a smart, funny, annoying-as-hell person who happens to have fibro, and who, as a result, has certain limitations in what I am able to do. But it is not who I am. I don’t tell everyone I meet, I don’t keep track of symptoms, I don’t focus on what is wrong with me like some people I’ve known. I make an effort to have fun, something to laugh about, every single day. I don’t bemoan what I can’t do, but try to remember to do what I CAN do. Not to say I don’t have whiny days, or moan and groan to a friend, but I don’t let that be all there is of me. I want to enjoy my life, and have as much fun as I possibly have given my physical limitations. And I do. I’ve never been a ‘why me’, ‘if only’, type of person. I am a pragmatist (straightforward, matter-of-fact), a realist. This is the way things are, and that’s what I have to live with; not how I wish things were, or how they used to be, but the way they are right now. Living in the moment helps with that, too
I was in a support group when I first became ill, and I found it very depressing. I thought it would be how to live with this, how to manage daily things, etc., but instead it was just people complaining about how miserable their lives were, and how many doctors they’d seen, trying to find somebody to ‘fix’ them. The way things stand, there is no ‘fix’, and I have come to terms with that, and worked to accept that this is how I am now, and get over it and figure out how to live with this new reality. I used to say, “I used to….”, until I realized that living in the past like that was detrimental to living, really living and enjoying this life, now. This is now my reality, and I’d better make the best of it, or I won’t have any life worth mentioning.
On a positive note, saw knee surgeon yesterday, and he says I am doing very well with healing and physical therapy. There’s only one thing I still can’t do, and that’s lift my leg straight out. Like sit and straighten your leg in front of you. Only goes so far, hurts like crazy. I can make it raise higher by pulling it up with something, or the PT lifts it, but cannot do in on my own. Still have pain, but not constant or severe. It’s only been a couple of months, though. In house PT guy said it takes three or four months to get back to normal, but new PT guy says it can take up to a year. I think having fibro, which means weird pain responses, has a definite effect on it, too.
So that’s my “It’s Fibro Awareness Day’ rant. I have PT later, not looking forward to the pain involved, but I’m always better after so I guess it’s worth it. I know it’s worth it. And PT guy is funny and nice, as are most people I’ve dealt with since the surgery. It’s a coolish, sunny day, and I need to get a move on.
Here’s a quote I just came across. I love it.
‘Buddhism promises nothing and delivers exactly that.’
*If you want to read about Zen, a couple of authors I started with and really learned a lot from, are Jon Kabat Zinn, Professor of Medicine Emeritus and creator of the Stress Reduction Clinic and the Center for Mindfulness in Medicine, Health Care, and Society at the University of Massachusetts Medical School, and Thich Nhat Hahn, Vietnamese Buddhist monk. Google, there are tons of good books about Zen and Mindfulness Meditation, etc. I recommend any that don’t focus on the ‘religion’ aspect, but on the ‘way to live’ side. You can be any religion (I am an atheist), and also be Buddhist.
**This was hard the first few years, before I got through to people. I remember once being invited to something that I just couldn’t do when the time came. Later, seeing the same people, one was giving me a hard time about not coming to the event. I remember saying, “I already feel bad enough about having to miss the fun, and now you want me to feel guilty as well?” That seemed to be the thing that finally, finally got through to them, that I wasn’t rude or a loser, I really have no control over what I can or cannot do, or when I can or cannot do it, whatever it may be.
####I proof-read this, but wonky fibro-brain does not always work as well as I’d like, so if I missed anything, oh well. 🙂
You can’t start the next chapter of your life if you keep rereading the last one.