I know I feel this way and I’m slightly astounded that the percentage isn’t higher. I suspect others have more support than most.
Pain
Soothing The Beast
Thank you to those that inquired about my health on Tuesday. I genuinely appreciate that. I was 100% better yesterday. Apart from a little achiness, it was surreal to physically feel nothing. These are very rare days indeed, but all I felt able to handle on an emotional level was some paperwork and phone calls, and submitting a proposal for another developmental editing job, something short to keep my brain active. There was something about an impending thunderstorm that was calming to me in some way.
The storm itself was lackluster, to say the least. A few rumbles of non-threatening thunder and a small amount of rain. Pssh! They call that a storm worthy of alarms going off on my phone?! I reached a point where I muted everything on the phone and spent hours listening to it buzz occasionally. I don’t know about all of you, but when the rain is overhead, it’s a safe bet I already know it’s there and I don’t require an alert that can seemingly pierce its way three houses down. Technology.
Today is a brand new day with a whole other set of issues. The pain came roaring back. I thought I was sleeping, but kitten was here, multiple times, to inform me that my presence was requested in the kitchen. She learned how to open the kitchen cabinets about two weeks ago, but apparently in her learning efforts, cans was not on the list. I fed her and walked over to cat, because she’s been acting strangely and I will not open a can of food for her until she’s standing in front of me to truly let me know she wants it. She walks away a lot and it has become wasteful, and tiresome. No, the little espresso bean was content to sit in front of the patio door and watch the birds and bunnies, she wasn’t interested in food or attention. She’ll come looking for me when she needs one or the other. This is the problem with having a picky animal that only wants to eat when she decides it’s time. Precisely who is in charge around here??
I have scoured the forecast and decided that tomorrow afternoon is better to run errands, it’s going to be too hot to think today. Granted, errands on a Friday aren’t the best idea in the world, that’s when almost everyone else has the same plan, but it’s the only idea I’ve got. Once the temperature drops tomorrow, it won’t be 90 degrees, it’ll be in the low 70’s and that’s something I can handle for a few hours.
The fact that Monday takes us into June is quite disturbing to me. This year is going by a lot quicker than expected… I supposed they always do, to some extent, but it’s still weird. I’m sure I’ll feel that way a year from now too.
Okay. I am off in search of breakfast and then I am committing myself to an hour or so with the manuscript from hell. I want it DONE, GONE, DELIVERED. If I look at it any longer, I am certain insanity will set in. Wish me good luck with the final 200 pages (I swear, it keeps growing!). The fact that 30 pages of notes, if not more, have been added, should tell you exactly what I’m working with here. Note to self: Raise your prices. Enough with this fairness bullshit!
Talk to you all soon. 🙂
copyright © 2015 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.
It Doesn’t Get Easier
Fibromyalgia Pain. Chronic Pain. Migraines. They are just a few of the evils that millions suffer from. Some suffer loudly, but many more suffer in dark rooms, alone, in silence. You’re screaming on the inside, but you don’t make a sound.
There is something about the temperature shifting drastically that changes my “Pain Game” to new levels of insanity. I’ve had a migraine on and off for three days, and after last week, I’d hoped it was just a passing tornado, so to speak. This morning I reached that “insane from pain” stage that is quite scary. You hear yourself saying crazy things, but you truly cannot stop your mouth from moving. You’ve been strong for too long and now you’re venting.
I’m usually up pretty early and by early, I mean still dark. Suffering from migraines last week into this week has meant that I’m finding justified reasons to A) Go back to sleep or B) Take naps. This morning I woke up at 7:24. I’d been up an hour before and truly saw no reason to make a bigger effort, so back to bed I went. Unfortunately, when you have animals and/or young children, you don’t get “the morning off”. I suspect if I bled out of my eyeballs, maybe. The girls were being particularly aggressive this morning, so I fed them at exactly 7:25 and then stomped back up the stairs like an insane person. Once they’re fed, they usually leave me alone. In true form, they had no interest in bothering me whatsoever once they’d been fed. But once I officially woke up, I had a little stalker doing all sorts of wrong to draw my attention. I’ve reached that pain point where saying “No.” or “Get down from there!” isn’t even worth it. If I spritz them with water, they stop doing it. However, they’re fearless and like to lick the water off right in front of me, as if to say “Really Mommy, that’s all you’ve got?” I’m not in the mood to be challenged by anything with four legs and fur, and I don’t negotiate with terrorists that look like children. 😛
Migraines that affect your neck, shoulder(s), face, and spine are fucking scary. There is always someone telling me a wild story about how “so and so had a migraine, and thus thought nothing of it, until they ended up in emergency surgery.” Yeah, that’s what I need to hear. That is totally going to make me feel better, thanks for sharing! I have no idea why so many people use the “this one has it worse” crap on you, as if that is somehow going to magically stop your suffering (and not just with a migraine, but with ALL things in life). FYI: It doesn’t curb your suffering at all, but it does piss you off, which isn’t good because that raises your blood pressure and damn near guarantees that this migraine isn’t going anywhere any time soon.
My biggest problem with this particular migraine is that I also hurt from my spine down to my calves. If it’s not severe pain, it’s a horrific ache or serious soreness. There is a 50% chance of rain and honestly, I’d like to see it rain a bit because that would explain the sudden increase in pain from my daily 8-9 to DEFCON 1. Historically we have never reached such a level of “readiness”, but I’m betting that a vast majority of pain patients HAVE reached that threshold. It is pain that is so bad, you’d rather feel ANYTHING ELSE but that pain. It applies to more than just the physical.
Doctors have often told me “It gets better as you get older.” That’s what they told my mother when I had horrible growing pains and constantly felt like my muscles and bones were going to pop off. Now, doctors ask whether or not you can remember if you had bad growing pains as a child, because that often signifies whether or not you might suffer from a form of chronic pain later on in life. They ask about your long-dead relatives medical histories, as if you know all about your “dead before I was born” Grandparents and Great-Grandparents. Unfortunately, I remember those growing pains the same way I will remember my current pain a month from now, with 100% muscle memory.
I fully intended to get some serious editing done today. I have a client crawling up my butt (I have more to say on this subject, but it’s unprofessional, so I’m going to shut my mouth) asking for a timeline for delivery. We’ve never discussed one before, but as I go through pages and pages of work that requires severe corrections with every sentence, I had to be honest (I chose professional honesty as opposed to niceness because I don’t have niceness in me at the moment.) and tell exactly her how much work is involved. The cleaner the manuscript, the less work there is for me, but as a developmental editor, I fact check and do way more than I’m being paid for, and yet from a writer’s perspective, I cannot tell if it’s just excitement at the prospect of having never been edited before, or anxiety that a professional is dissecting your work. I don’t know, I suspect it could be a lot of both, but I’m also in too much pain and under too much stress to sit and psycho-analyze it. I also hesitate to ask because I’m about .1 seconds from losing it on just about anyone. I’ve never failed a client before; it’ll get done, but work stops when I’m in agony and being nagged.
Right now, today is turning into another “Must Take Care Of Me” day. I truly don’t feel there are enough days like this because I often turn my attention to helping someone with a problem, or doing something else to shift my internal focus off the pain. Focusing solely on my own needs is slightly unnatural to me, but for now, it MUST be a priority.
Here’s hoping that none of my readers are hurting like this today. 😦 This is the kind of pain only Hitler deserves!
copyright © 2015 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.
Mondays…The Bane Of My Existence
Maybe it is lack of quality sleep or the fact that I woke up stressed, but this particular Monday is making me ill. The eerie quietness was giving off a lovely early Sunday morning vibe, which was helping calm my nerves…until the mowing and trimming started, AGAIN. I’ve had a migraine since last night, so the sound is like a never-ending sickness within me. I didn’t realize it until just now, but the smell is also murdering my sinuses. Spring allergies on top of all this physical pain AND a migraine? It’s unbelievably cruel.
The migraine is never truly gone. It will lull me into a false sense of security and then come slamming back, making me feel like my brain is being rattled. Has anyone received successful Botox treatment for their migraines? If so, please share your experiences with me.
Originally, I had some semblance of a plan for today. I had ideas laid out for work and I will definitely begin the process of writing certain things, but I’m realizing right now that some serious self-care is also in order. Today is going to be one of the hottest days that I’ve seen in quite some time, topping out at either under 90 degrees or over, so I think my first order of business before it kicks into high gear is to start hydrating, and to refill the Brita pitcher as a precautionary measure. Heat and I don’t mix well. In my mind’s eyes, it’s a “Wicked Witch melting” moment.
Something about the heat always makes me sick. It affects my entire body (pain, stress, stomach issues) and it exhausts me to the point where I will close my eyes and wake up five hours later. Like many things, the heat does Fibromyalgia no favors. It irks me that a person can’t spend five minutes educating themselves about Fibromyalgia, or any chronic illness, but when you explain that you’re sick, their response is selfish and self-centered, with claims of also having it. And yet, when they describe the pain they experience, you know their journey has yet to even take place because, while it may have been diagnosed, it is the utmost of mild for them. They don’t have to spend a week in bed after two days of serious activity. The only thing they do experience is widespread pain, but it’s not constant. Well, unless you’re on a morphine drip, Fibro is a constant. There are over 100 symptoms and side effects, but if you’ve only got one or two of them, I have a hard time relating because I score over 85 on the list, and that’s extremely disturbing to me. This disease is robbing me of my youth and energy in ugly ways.
So, if I don’t do or say something today that you expected, please forgive me. I’m waging war, both physically and mentally. I don’t have time for frivolous nonsense.
copyright © 2015 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.
These Days
When you suffer from any form of chronic illness, and I can only speak from experience with Fibromyalgia/Chronic Pain, there are days when you cannot fathom getting out of bed, leave alone getting out of the house. The pain is just that great in its magnitude that functioning is taken out of the equation. You reach a point where you merely exist.
When I push myself, I make everything worse. It often takes me 5-6 hours just to get my mind right in order to get ready and leave. I have to factor in so many things in these decisions. My big motivator isn’t about myself though, it’s usually about making sure the girls have all that they need. If they don’t, I have no choice but to get shit done, even if it means not being able to walk at all for several days.
I woke up in a dark head space. Despite going to bed early last night, I accidentally left the air on instead of the heat. That’s how crazy the weather has been. By the time I reached the “everything hurts and I can’t move because everything is stiff” stage, it was 62 degrees inside. In this house, that’s like 45 degrees with a bitter wind chill. So, the heat went on and I went back to sleep for a few hours. When I officially woke up, it was “too hot” at 66 degrees, which just goes to show you that Fibro is no joke. There are days I am wrapped in a blanket when everyone else is in shorts and tank tops. There are also days when I’ve got two layers on and people are saying “You’re not hot?” When I’m really cold, I’m even wearing socks inside. I never know which way my internal temperature will slide or what the external will make me feel. There are days when 70 degrees makes me want to pass out and die, but if there’s a cooler breeze within the temperature, I’m okay. These days, even my hair hurts, and that’s never a good sign.
I am slowly pulling myself together today to hit two stores. If I don’t go, no one eats, including me. The last thing I want to do today is go anywhere, but for now, it’s just about calming the pain and stress levels down a few notches and hoping that a cool shower will wake me up enough later on so that I can run these two errands and come home.
I won’t lie: My first option was to have everything delivered or ready to pick up, thus minimizing my actual need to force myself out. Alas, two different stores were “out of stock”, so I have no choice but to go there myself and figure out what their deal is. Unless you’re having some kind of epic sale, there’s no way you’re completely “out of stock”, not unless you want to screw with me or there’s something wrong with your on-line system. It’s all very frustrating. It’s even more pathetic that I thought “Wow, that’ll be a breeze. I can just go in, pick up the order, and come straight home. I don’t even NEED to wear make-up!” Of course now, pride determines that I do not leave the house without looking like a human-being. Think Corpse Bride, with a lot of curves.
I admit, I have become moody due to the limitations from pain. If I don’t cook dinner by a certain time each night, which is the right time to allow me to be in bed in a timely fashion, then it’s simply not happening. And if I don’t eat a balanced diet, I will be deathly ill. One of my best friends joked that I’m damn near a vegetarian these days, which isn’t true, but can seem that way at times from the outside looking in. I don’t share in the vegetarian or vegan belief systems, so it’s really not possible for me to be either. It’s not about achieving some kind of goal or physical look, it’s merely about eating to live and getting proper amounts of rest. I hurt too damn much to get into semantics with people.
As the sun begins its rise above all the clouds, I keep wondering exactly when the “perfect” time is to get the hell out of here. Truth is, by the time I clean my bathtub (which I do several times a week because it annoys me), get ready, put up a load of laundry, and leave the house, it might very well be 4:00 PM. Trust me, the clothes are already in the dryer by the time I’m leaving, if not already dry, so there’s also that time in the “getting ready” process. Waste not.
It would be SO NICE to have someone to rely on in times like these. Someone dependable to say “I’ve got this, you go rest.” Not everyone is blessed with people in their lives who are willing to physically assist with errands and chores that have to get done. It’s not that I don’t want to do these things for myself, this isn’t about laziness, it’s about illness. I promised myself I’d learn how to ask for help this year, and accept the help that comes my way, but so far, I’ve hit a lot of brick walls and it’s disturbing to me. I loathe people who say one thing and do another, in all aspects of life. Don’t open your mouth unless you can follow through.
I’m sitting here with my tiny list, but all it does is stress me out. Normally I love grocery shopping and taking care of others, but in this moment, I’d really like someone to take care of me. I physically feel too broken to do it myself.
copyright © 2015 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.
There Are Wounds…
“There are wounds that never show on the body that are deeper and more hurtful than anything that bleeds.”
―Laurell K. Hamilton
Don’t Use…
Originally, I had something funny planned for today. Then I saw this, and it made me realize that the message behind this is far more important than my being humorous.
I cried the last time someone told me they’d lost a baby, so if you’re a parent and your child/children drive you crazy, take a moment to realize how blessed you are.
Behind Every Beautiful Thing…
“Behind every beautiful thing, there’s some kind of pain.” ―Bob Dylan
Hard To Define
I am currently in one of those moods that is hard to define. Lack of sleep and a full body flare-up haven’t helped matters much. You either allow yourself to feel all of the pain, or you mentally allow yourself to be dulled. I’m not talking about drugs or alcohol. I’m simply saying that after a period of time, you shut your mind off because all of the pain is too much.
Not being able to sit for very long, walk the way I used to, or turn my head and neck properly, was something I focused on for a very long time. All I could think about was what Fibromyalgia was taking away from me. Being able to fully take care of myself being high on the list. Other things start becoming afterthoughts because without dulling the mind, the intensity of everything I think and the pain I feel comes rushing back. No one deserves to live like that and call it a “life”.
By all accounts, my life would be considered full to the eyes of many. I know differently. I know that just getting out of bed is a struggle, especially if I haven’t gotten any real rest. Nights spent tossing and turning are equally as exhausting as the pain itself.
There are days when I truly need a nap. Sometimes I fight it, other times I give in. Sometimes a 2-4 hour nap is the best sleep I’ve had in weeks. It upsets me that I cannot make definitive plans because of the pain. When I do make definitive plans, I do my level best not to back out at the last-minute, unless it is something that is truly easy to re-schedule. People, it turns out, aren’t very understanding. Over time, you lose people in your life, but you hold on to those that are quality. A real friend doesn’t turn their back on you, period.
I think it’s important to support others through any form of Chronic Pain and Fibromyalgia. I don’t think it’s acceptable to walk away from someone who is really suffering or turn your back on someone without just cause. Essentially, many people want things they are not willing to give in kind. Hard times help you to see other people’s true colors.
I’m the same person I always was: Inappropriate, funny, honest, direct, loyal, and real. Pain has not minimized my personality or the lengths I will go to for others. It has slowed me down, yes. It has made me focus on other things at times, but it has not changed the core of who I am.
Love, loyalty, and friendship mean different things to different people. I know what it means to me, and I honor that. I will not stand for those that cannot honor any aspect of it. Apologize when you are wrong, fuck off if you’re not genuine, and basically, don’t waste my time; it’s valuable. Pain might limit certain things, but it’s not a lobotomy.
There are a lot of false people in this world. Don’t allow yourself to be fooled by them. See people clearly, for exactly what they are. Stop looking for the good in people (Despite what some people believe, there is NOT good in “everyone”.) and start looking at what’s right in front of you. Trust is not something to be given away freely, it is something to be earned.
copyright © 2015 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.
Tell Me The Truth; Was I Run Over By A Truck?!
Sleep issues, for now, seem to be on their way to looking up. I was in bed so early last night, I’m certain every 80+ year old Grandmother was still awake when my head hit the pillow. When sleeping is difficult, it’s good to go to bed the second you can no longer keep your eyes open. Mission accomplished. It was after 4:00 a.m. when I realized that I never bothered to turn the clocks ahead an hour, but in the grand scheme of things; no harm, no foul.
Somehow the downside of a full night’s rest is that I woke up feeling like a Mack Truck had run over me, backed up, and proceeded to go at it a second time. Everything from my neck down to about mid-thigh feels broken, bruised, damaged, and whatever words are worse than “sore” and “achy”. By Fibro flare standards, this is pretty standard. It was twenty degrees colder yesterday, and yet today, while the temperature is slightly under a balmy 50 degrees, my body is working against me. Even my hair hurts…that’s not okay.
Weekends are never as long as they should be. For at least a year, I’d like one continuous weekend. There are weekends where you get a lot of writing/editing done (read: work) , and others where you get to enjoy things that you might not normally get to do (Minds out of the gutter.).
I’m extremely displeased with where this weekend went, but considering how much I have on my mind and on my plate, figuratively speaking, I just have to do better this week in terms of properly managing time.
In the meantime, I’ve got a ton of work and research ahead of me this week. I look forward to none of it. I’m having a hard time being passionate about what I do because the daily pain is just too much. Normally I am speedy and efficient. Right now, I am slow and I find fault with every other word. No matter how much positivity I can manage, at the beginning and end of each day I am still in excruciating pain and it’s hard not to take issue with that.
Here’s hoping everyone’s week is bright, and full of potential. I’ll be okay with significant progress, love, support, and a lot less pain.
copyright © 2015 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.












