If you are struggling today (or any day)…reach out for help.
And also, this article is helpful:
I was watching television and a character said he became a doctor because it was always his way to try to control things. Being a doctor made him feel he was in control of his life and his patients’ lives.
I was sitting there watching and it was like one of those AHA! moments. I started wondering if my fiction writing (which I’d been doing since I was a pre-teen) was my way of controlling things in my life. Or finding a way to have control in a world where I really had no control, especially when I first became sick…which is when I started intensely on my writing career and when I was first published.
When I talked about this with T, it also made sense as to why I haven’t been able to write very much in the last few years. I’ve worked so hard to release my idea of controlling everything, and so my default way of writing–and seeing my writing–is no longer the same. T said she could see exactly what I was dealing with, and she felt the discovery was a very interesting and insightful one. I’m not sure how I will be able to write again, but T thinks I’ll find a way. I certainly don’t want to go backward in order to find my ability to write again, but as I am now, I feel like my solace in writing is gone. I used to be able to disappear into my books and create lives and worlds where everything was the way I wanted it to be. But now, where I see that control really is an illusion–even though I’m still working on that in my own life–I’m not sure how to create stories the way I used to.
At the moment, I even feel like I’m struggling to get my ideas across in this post. I feel jumbled and like the words I want are not here. It’s sad and disappointing right now. The thing that I always went to feels like it’s well and truly gone. I mean, I know I haven’t worked on any of my books in recent years, nor have I really started anything new of note, but I guess I thought it would still be there to save me.
It sounds dramatic, but really my writing did save me when I got sick. There were days I never made it out of bed except to go to the bathroom, and yet those were the days where I wrote my books. Those were the most productive days of my writing career. Through pain and vertigo and fatigue…I wrote my books. I wrote deep into the night, hours and hours at a time, and slept through until noon. I would eat lunch and then go back to my writing. It kept me sane, it gave me a life to live when I couldn’t live my own life. My hands would cramp, my arms would ache (I wrote my books in longhand), my neck would hurt…but I kept writing. That was the first time I ever wrote a full-length book, and it was the first time I persisted in finding a publisher for that book.
And here I am, in need of that solace, and unable to find it.
I’m not the same person I was, no question about it. I just don’t know how to be the person I am and still have the purpose I had then.
I wasn’t sure what to do this year about mother’s day. Last year I sent Hub off to his mother’s house without me, and I spent part of the day with my brother and his then wife (now ex-wife). I talked with T about this on Friday, because I feel some guilt about not going to my mother-in-law’s to be with her, but I just am not ready yet this year. I know she understands–as does Hub–but I am at heart a people-pleaser, and so the guilt sat heavy with me. In the end, though, I couldn’t make myself go.
My father had mentioned to me Friday evening that he was going to go to the cemetery to visit my mother’s grave and he asked if I wanted to go. I didn’t answer him at that point, but Sunday morning when I saw him, he brought it up again. He said he knew it made me feel “uncomfortable”, but he wanted to make the offer for me to join him. I tried to be gentle in responding when I said to him, “I don’t feel uncomfortable about going, but the truth is, I don’t feel a connection to Mom there. I don’t feel it to Nana and Papa, either…it doesn’t work that way for me.” (my grandparents are buried in the plots next to my mother). For real, I feel more of a connection to my mother in her “den” closet, where she had a bunch of books stashed on a bookshelf…gardening, trees, cookbooks…I stumbled on them at one point and ended up crying. Because that’s my mother. The cemetery is just a marker for her physical body’s last resting place, but it has no history for me with her. My father only said OK and that he was okay to go alone, which I had to trust was true.
Somewhere around ten a.m., I texted my brother (the one with the ex-wife) to see what he was doing that afternoon. He said “nothing”, so I asked if he wanted to do something. What I really wanted to do was go back to the nursery where Mom and I used to go all the time, and where he and I went after she died. I also offered up the opportunity for him to come to my house to help me bake peanut butter cookies, which he (and my other brother) scarf up as fast as I can make them. His response was a preference to go to the garden center, so in some corner of my mind I knew it was the right thing to do. Even Hub said as much when I told him my plans for the afternoon while he was with his mother…he said my mom would be happy to know I was spending time there with my brother.
So after lunch, my brother and I set out for the nursery, which is about 20 minutes away. We talked a lot in the car about how he’s been doing with his depression and his medication, as well as some other health issues he’s dealing with. But once at the nursery, we talked about plants. We walked around the big place for about two hours–which leaves me exhausted and in pain today unfortunately–just chattering and touching plants and gagging over the high prices. We bought absolutely nothing, but it was worth the time and energy and pain, because it felt right. This brother and I, we have always been the closest of the siblings–with the exception of his married life where he withdrew from the whole family…and even then I tried to stay in touch with him as much as it was possible–so this connection felt good to renew. I know he’s struggling with his depression and his newly single life and his desire for a partner and…well, lots of stuff. And part of today was to remind him that he’s not alone. Doing that for my mom and for him made the day work for me.
I miss my mother so terribly. Every day. I feel like my identity without her has been lost. I don’t know how to get it back…yet. I’m still searching, and maybe someday I’ll find my purpose again.
I described (to T and a friend) the run-up to mother’s day as “being poked with a cattle prod when you’re already on fire”…and it’s true. That’s so much how I felt with all the television commercials and the holiday displays in all the stores and the radio commercials and facebook and instagram and on and on. I worry that it will always feel this way, this painful, this sad, this lost. Living without my mom has changed my life and changed me at my core. I don’t know how to adjust to that, or that adjustment is even possible. Somehow, I have to find a way forward. Last night I watched Bad Moms on television while Hub was still at his mother’s. There’s a point in the movie where Mila Kunis is talking to her movie daughter and she basically says, “I know you can make it through this because I’m your mother and I know what you’re made of.” It was such a dumb, funny, stupid, crazy movie, but that scene and those words (which I can’t remember exactly) really hit me hard. I know my mother believed in me and believed in my strength and my ability to persist. I hope I can find a way to continue to make her proud in that aspect as I try to find my way.
As a minor update, I finished all my bactrim pills successfully. I don’t know how much I feel better, but so far it seems the smell is gone, so I take that as success. I wasn’t too much more itchy the last day and half, so that was good. My stomach isn’t entirely back to normal yet, but I know the bactrim stays in your system for several days following the last pill. So hopefully another couple of days and my stomach will be better.
I was really concerned about my surgical menopause, after having my ovaries removed in the second surgery. Everyone talks about hot flashes and night sweats (which are apparently hot flashes but at night) and moodiness. Among other things, of course, but those are top issues that women report. I wasn’t sure how soon I’d be feeling the effects of the surgical menopause, as anecdotal reports varied, depending on the individual. I figured mine would be slightly delayed, because of my weight–fat around your waist especially is full of estrogen, and that would likely keep me from falling into the surgical menopause immediately. But even women who are overweight often have menopause symptoms immediately after surgery, so you just never know.
I had one hot flash (so far), I think. I’m not sure if it was because I was getting a fever from an infection, but it felt like what I’ve heard a hot flash feels like. But beyond that, I haven’t had hot flashes, per se. I just…get hot. And then I get cold. And then I got hot again. Especially at night, I go through this cycle of having the ceiling fan on and an oscillating tower fan right next to the bed, and I start with my sheet and comforter on top of me. Then I get hot, so I throw off the comforter, then I throw off the sheet. Then I get cold, so I pull the sheet over me, but that’s not enough because the oscillating fan is blowing RIGHT ON ME, so I have to pull the comforter over me to get rid of the chills. But then I got hot, so I get rid of the comforter, but I’m too hot for the sheet, so I throw that off again. Then I’m cold, because FAN BLOWING ON ME, so I yank the sheet over me again, and then the comforter. And then I repeat this cycle. At some point, I know I fall asleep, though I don’t think there’s been a pattern of whether I have the sheet and/or comforter on or off me. I just know that repeatedly through the night I wake up and go through the cycle of hot cold hot cold sheet comforter sheet comforter hot cold hot cold. And no matter how many times I wake up and go through the cycle, it keeps me awake for about an hour as I cycle through the hot cold sheet comforter routine. I don’t really SWEAT like a lot of women talk about (sweating through their night clothing and/or sheets), my internal thermostat is just messed up. But really, I don’t sweat too much anymore unless it’s really humid out and I’m working my ass off at something, then it’s like face sweat and, well, boob sweat, but not all over sweat. So maybe I just don’t sweat enough to have night sweats. Either way, this hot cold cycle is annoying and unfortunately affects my sleep, but it’s manageable. Because I don’t sleep well most of the time anyway, so this is nothing new.
I thought for a while I was having dry mouth from the SM, but that went away about a week after my last round of antibiotics (from the incision infection). I am having some headaches, which could be the SM or it could be allergies. I’m pretty new to these spring and summer allergies, so I’m still trying to figure out what is an allergy symptom and what isn’t. My hair isn’t falling out, yet, and I’ve had no moodiness. None, zip, zero, nada, zilch. I thought that would be a big thing for me, because I do trend to moodiness, but nope. No crying jags, no anger, no swing from happy to sad. I’ve been pretty okay–moderate–and I keep wondering when it’s going to hit me. More than the hot flashes, even, I thought it was going to be moodiness. I warned Hub, and apologized before I even went into surgery. My fingernails, though, are bad. I’ve always had issues with my fingernails, but over the last ten years or so, they’ve been pretty good. They would grow fast, and if I kept them trimmed to a certain length, they weren’t too prone to breaking. And they grew at a pretty good pace. Now they’re breaking all over the place, and not growing back very quickly.
What is most distressing for me at this point is the fact that I’m losing words. Or not being able to find the words I want. Hub has found himself jumping in to try to finish sentences for me when I stop to try to find the words I want. The words that might be just out of reach, or totally out of reach. I find myself pausing a lot, searching for words when I speak, searching for words when I’m writing something (an email, a blog post…doesn’t seem to matter). I feel like something is wrong with me. I mentioned it to Hub who suggested it might be the hormone shifts, and I think I read that somewhere, but I’m not 100% certain. Whatever it is, and I hope it’s SM, it’s scary and frustrating and distressing. I’ve always been someone who thinks thoroughly before I speak, but I’ve never had this much loss for words.
I have had much more muscle pain, which can also be a SM symptom. I saw the massage therapist last week and she beat the hell out of me. I was actually hurting for three or four days before it started to recede. But again, I do have myofascial pain syndrome, which is a muscle disorder, so it could be that I’m in a flare because of all the hormonal changes (and the physical stresses I’ve been under because of the surgeries and because of the care I’ve had to give to Butthead after HER surgery). It’s so hard to tell what is SM and what might be something else.
I’m having lots of dreams and nightmares…much more than before. Prior, the dreams would generally happen in the morning, after Hub got up but before I would get out of bed. Now they’re happening all night, and when I wake up and go back to sleep, I fall back into the dream/nightmare again. They’re vivid and uncomfortable dreams, and they generally leave me feel unhappy and distressed.
Oh, and the hormonal acne shit is driving me a bit batty. I thought with the lack of hormones, the monthly acne would go away. Nope, instead it has gotten worse. It’s all along my jawline, my chin, along the sides of my nose and nostrils, and around my mouth. Prior to the surgery, I would have one or two pimples per month, but now I’ll have several at a time. It’s frustrating because I don’t know what to do for it. Before I would wait it out because, well, hormones. Now, if I don’t really have hormones, when will the damn things go away? Bleh.
It’s still possible for other symptoms to crop up at any point. I have my fingers crossed that nothing gets worse and everything gets better, but I’ll do my best to cope no matter what comes.
I’m doing that just fine all on my own. Bleh.
Seriously, this is the first day I’ve been able to concentrate even a little bit. Prior, I was feeling very foggy and dizzy, and like my eyes wouldn’t focus. It was pretty horrible. Thursday I was trying to be a good girl and eat protein, so we had some deli turkey in the house in preparation. Turns out there’s something on there in the gluten range (maybe the seasoning? we don’t think we’ve bought this meat before, it was fresh-made at the store) that was affecting me and I spent most of Thursday suffering from hot-face, which made me miserable. It wasn’t until after I’d had some for dinner that I realized it was probably the turkey and I had to just wait it out. I didn’t start feeling that going away until sometime Friday mid-morning. Meanwhile, my sleep has been close to nil. That has been kind of horrible because it aggravates anxiety big-time, as all us anxiety sufferers know. My PVCs remain annoying…
I’m in some mild pain, but taking ibuprofen twice a day, just to help speed healing, I hope. Friday the doctor’s office called to check on me and the nurses warned me to be very aware of blood clot symptoms, especially with the weekend coming. She told me to not wait and go to the ER if I felt I had symptoms. So now I’m spending the majority of my time worrying about a blood clot. Fan-fucking-tastic. And apparently this is an issue for MONTHS after a surgery. So my leg is bothering me and it’s kind of freaking me out, but I am trying to remind myself that it’s probably a muscle ache and maybe must my knee hurting (which is normal for me). I’m afraid…there’s so much going on in my body, I have no idea how to identify what is normal and what is not. My heartburn is pretty bad (with accompany nausea!…yay), even though I’ve gone back on my regular digestive enzymes and probiotics…they haven’t really taken over yet. So that means I’ve got pain in my chest which radiates to my arms and back. And I have to decipher that as being different from being short of breath and in pain which could be a clot my lung (versus in the leg, of course). This has not been a good experience for me…I’m sure T is thinking “Ooooh, exposure therapy” but I’m thinking OMG how am I going to get through this?
I feel very split up about all this…trying to realize I had major surgery and still feeling like I’m supposed to be active to help heal. They’re all telling me to listen to my body, but my body LIES to me. So how am I supposed to know how much to rest and how much to do? I had major surgery and yet they sent me home five hours after. Which is it? Major surgery and rest, or get up and move? I’m FINALLY able to stand up and sit down without groaning from the pain and stretch, but it’s still uncomfortable.
Eating is difficult because of the nausea and the heartburn. I have no appetite, but I know without food I won’t gain stamina or energy. I’m trying to drink but I’m NEVER a good drinker so I’m sucking with that, too. Which apparently could lead to more potential blood clot issues. So much fear in my body at the moment. I told T when I had my phone appointment on Friday (which I could only talk for half an hour, I was so out of it) that I feel like I’m in the midst of anxiety even though I didn’t feel ANXIOUS. She said it’s my body responding to the trauma of the surgery…and to just try to use my tools even though it’s not really “anxiety”.
My head feels full and pressured. I have a headache (while I’m taking 800mg of ibuprofen…wtf is up with that?) and I’m so tired all the time. I want to be past all this NOW.
On top of all that, Hub has a really bad cold that came on Tuesday night. I’m SO lucky that I haven’t gotten sick yet, even though he’s feeding me and getting me drinks. It’s really really sucky, though, because he’s not touching me. No hugging, no kisses, no rubbing my back or my hands or my arms. No comfort. It’s a really big loss for me… I want so much to be soothed and because we’re trying to keep me from getting the cold, I feel bereft and alone.
Like I said, I’m doing a find job of pitying myself. And now the eye floaters are back, so I’m done here.