The “Firsts” of Living with the Dying

I started an HSA (health savings account) last month. While at the credit union filling out paperwork, the agent asked me who I wanted as the beneficiary on my account. I sat frozen for a few minutes. She said, “Do you just want to add your husband or…you don’t have to!” I stuttered for a second then said, “My husband is dying. I guess I better put my son down as the beneficiary.”

It was a weird moment. It was one of those “firsts” that I had never thought about before. I knew, of course, about all the first holidays and death days and anniversaries, but while someone is ill and you know they won’t live a long time, there are other things to consider. Especially when it’s your life partner.

We’ve discussed what to do with his retirement accounts. We’re always talking about how to fix things in the house or what I’ll need to do in the future. But there are also “firsts” in caregiving. Like when he permanently started to sleep in a recliner in the living room. Or the first time I helped him get dressed, or now having to sleep on the couch a few times a month when he’s having a rough night. The first time we discussed hospice, and if his new healthcare provider will actually tell us when he’s ready or will WE have to tell the doctor. (The healthcare system and its providers are horrible at letting you make your own decisions and allowing you to have a good death. Period. Which is why we know we have to be our own advocates for not just our health, but our death.)

This past weekend, we drove to our son’s dorm to give him a few things he needed. I knew that we wouldn’t stay because there is no handicapped accessible entrance to his dorm building and there’s a minimum of 10 stairs to walk up. Those stairs have become insurmountable for my husband. When he climbs the 6 steps to get into our home, it takes all the effort he has. So when we got to the boy’s dorm, our son came out and I handed him the bag of stuff he needed. He invited us in and was surprised to realize that we wouldn’t stay. For a moment, he forgot that his father would not be able to climb those stairs and would never be able to see his dorm room in person again. It was another first. I mistakenly told Wal that our kid was sad that we weren’t going to stay for a bit. I wish I hadn’t said that, no matter if it was true or not. I tried to take it back and said he was just surprised or maybe disappointed, but nothing sounded good. The truth often doesn’t.

As much as I try to prepare for what will come one day, I know things are going to suck. My sister, who is my new neighbor, and I were looking out my living room window one day last week, watching the amazing sky as the sun set. I got all verklempt and whispered, “It’s weird to think that someday it’ll only be us here.”

Today I woke up and could feel this large mass of anxiety in my chest. I haven’t been able to shake it all day. I did get a text from my husband’s new provider to say he had to postpone our telehealth appointment on Saturday–which just irritated me to no end and certainly didn’t calm my anxiety. I feel…untethered. We’re just floating along with no direction, and wondering if he’ll just have a heart attack in his sleep (which would be the best outcome) or if he’ll keep filling up with fluid or his oxygen will dip so low and we’ll have to go to the ER where he doesn’t want to be. We know there are other options but we can’t seem to get a clear picture of what they are. If we can just get that first fucking appointment under our belt. We know what the lab work says, and we have our own interpretations of it (and what the nurse said), but Jesus Christ just talk to us so we can figure out where to go from here!

Sorry.

That last bit was my rant regarding the horrible healthcare system we have in this country. And when you live in a rural area and nearly every healthcare service is owned by a corporation that does NOT care about you, things are even shittier.

Anywho! With any luck, we’ll finally get to talk to a healthcare provider next week (it’s been 2 months since he’s been able to talk to one) and they can either tell him, “Here are a few things to make you comfortable,” or “We can cure you!” We know the latter is not true and if the dude says that to my husband, Wal will laugh and hang up on him.

So once again, we wait. This part isn’t a first for sure. 😉 In the meantime, we’ll plod along, chart his “numbers” like the freak I am (blood pressure, oxygen level, heart rate), and find little glimmers that bring us happiness and laughter.

Bean & Lima snoozing

Soul Weary

“All change is not growth, as all movement is not forward.” –Ellen Glasgow

I talked with a library patron yesterday, whose partner died a while back. She asked me how my husband was doing and I replied honestly. “Not great.” She said, “I know what it’s like to watch someone die, inch by inch. It’s wearing, isn’t it?” We went on to talk about the exhaustion our bodies can feel in times like this, as well as how frustrated or angry we can be. I feel really fortunate that I’ve let my anger go regarding Wal’s illnesses. I’ve found I have much more compassion and patience than I ever had before. But the weariness can be tough to handle some days.

It’s not just the body that is tired, but the soul. I use the term “soul” very loosely, because I have no idea what I believe regarding spirituality. But I know that my brain and my heart feel that exhaustion. This doesn’t feel like the distant anticipatory grief I’ve experienced over the past few years, but a more intense sense of loss. I’m feeling more loss of control than before. Now that Wal has moved to palliative care, I feel…untethered. I felt good when he made that choice, but due to our insurance company’s conflict with with our local hospital, Wal has no primary care physician. We’re trying to get the palliative care folks made his PCP, but I just discovered they don’t take our insurance.

This is really becoming an absolute shit show. I truly feel like no one cares about us anymore. The hospitals, the insurance companies, many of the doctors, the government–NO ONE CARES. We could all live or die and it means absolutely nothing to them, as long as they get paid. Rural communities have always gotten the worst end of the stick, but it feels so much worse than before. No…it doesn’t feel worse, it IS WORSE.

Meanwhile, the changes in my husband’s body makes both of us…sad. Besides not being able to sleep in our bed any longer or drive at night, he can’t sit on his tractor. His tractor is a John Deere lawn mower in the summer and a snow blower in the winter. Last week he went to move it from our front lawn to the garage. It had been on our front lawn for at least three weeks, maybe a month. But within that time, his legs had weakened enough that he could no longer push himself from the ground up to the tractor’s seat.

When did this happen? Was it two weeks ago? Was it the day after he parked the tractor? Fuck! It happened so quickly. We were both pretty upset. It was life changing for him, and I suppose for me. He showed my sister how to run the tractor and she drove it into the garage for us. (I’m capable, but I honestly hate the thing.) Since then, I feel like every day has been a bad day for Wal. On Sunday, I checked him four times to make sure he was still alive. He’s spent lots of days sleeping, some days not breathing well, tooth pain, high blood pressure, low oxygen levels, unsteadiness, dizziness, and on and on.

We know what most of the symptoms stem from and some can be resolved. But since we’re in this weird limbo, I’m frustrated and worried that he’ll remain tremendously uncomfortable until we can get a care plan in place. I’m glad he’s not in a ton of pain, but when he can’t breathe well? I find myself taking deep breaths, like I’m trying to take on extra oxygen for him. I can feel my anxiety increase when he’s feeling so awful, especially since I’m helpless. I try to keep it to myself, but every once in a while it’ll come out in a frustrated whisper, “I just don’t know what to do, Wal.” That’s when he’ll typically comfort me and tell me not to worry or that it’ll work itself out.

But we both know that someday, it’ll work itself out by his body wearing out. And maybe it’ll still be a few more years yet. But weeks like this? How can he possibly go that long? How can we?

The Lies Doctors Tell Us

I know it’s been a while since I’ve posted. I wrote much of the following piece months ago but decided to wait to see how it turned out before finishing. I missed y’all.

Each time my husband takes a shower, I stay in our bedroom next to the bathroom. If he’s having a particularly unsteady day, I hover in the doorway. I started doing this sometime last year because he asked me to. Now I do it for both of us.

Will this really help if he falls? No. He’ll still fall, and it will still be scary. But being there gives us both peace of mind. Well…it gives him some peace and me anxiety along with a deep sense of responsibility and obligation.  But I have no desire to stop. If having me nearby makes him feel more secure, then I’ll do it.

This past summer, I received a raise on my 2-year anniversary. When I looked at my paycheck, I started doing a bit of what I call “widow’s math.” I looked at our bills and thought about the life insurance my husband has and what debts I could pay if he died tomorrow. Then, with what I take home for pay, could I do it on my own? Could I pay the bills and not have to eat cat food?

Yes. For the very first time, yes. Things would be tight, especially since I just  got a loan to help the kid pay for college, but it would be doable.

I have never felt so relieved and ecstatic in the weirdest way. I told my husband and said I hoped this wasn’t too morbid, but he, too, was relieved. “That gives me such peace of mind,” he said.

We both kept saying those words, “peace of mind.” It’s really gotten me thinking about our levels of anxiety we’ve endured over these past 20 months (and truly much longer). Walter’s health became bad enough 20 months ago that he could no longer work. In my eyes, that was the beginning of his decline. He’s had so many good days and occasionally a good week–although it’s been some time since that has happened. We’re now looking at good days and/or nights. At some point, we’ll be grateful for good hours or moments. Some days I feel like that time is rapidly approaching.

We’ve been discussing palliative care over the last few months. If you’re not aware, palliative care is all about supporting folks with a long-term illness. Congestive heart failure combined with Type 2 diabetes is typically terminal. In my husband’s case, it is absolutely fatal. He no longer wants many kinds of treatments due to some of the side effects. And as angry as I used to be about it, I now just want him to be happy and comfortable.

Every person has the right to refuse certain treatments, no matter the outcome. You can live your life on YOUR own terms. This is the conversation my husband finally had to have with his doctor.

The problem with death being such a taboo topic in this country, is that it ends up causing communication problems and skews the healthcare decisions people make. If Wal had felt more comfortable with his doctor or maybe if the doctor was much more realistic and offered options that were not curative but comforting, then this experience would have been so much better. Instead, we have a doctor saying things like, “I know people with CHF that got so much better they felt 20 years younger!”

Thank you, Effin Birds!

Oh my god. Shut the hell up, man. My husband could barely walk into the doctor’s office, he can’t work, he does very little now.

But doctors are in the business of curing, right? Even when there is no cure. Which is why more doctors should read books like, “Being Mortal” by Dr. Atul Gawande. Think about your patient, the torture you will put them through when you know they won’t survive whatever treatment you’re prescribing.

After the doctor finally referred Wal to palliative care, that palliative care office had to refuse him due to budget cuts. And how did he finally find out? Because he called them to see why it had been a few weeks. The doctor never passed this communication on. Instead, they wiped their hands of my husband and his health care.

THANKFULLY, a local health care organization is taking Wal on as a patient and recently came to our house. Soon he’ll meet the doctor from that office, and we’re hopeful this will be the end of this particular drama and absolute lack of both courtesy and respect. We’re finding our way to peace of mind once again.

The nurse we met was a joy and just gets it. She understands that Wal is in charge of his body, his health care, and his life. “My body, my choice,” right? THAT’S how it should be.

Thanks for listening, everyone. I really hope you have all been well, or as well as you can be in this dumpster fire of a world.

Hugs, y’all. 💜

May is Mental

Every month is mental health awareness month in our house. How about yours?

Each member of our household is on an antidepressant, two of us are in therapy (although it REALLY should be three) and lately we’ve all been doing our best to take care of ourselves. My son and I joined the gym. (I sell my blood plasma to make a little extra cash, and that cash goes to the gym and the occasional treat or incidental. I know it might sound odd, but it’s kinda cool.) My husband and I have gone on two short walks together, plus he’s actually worked on lowering his blood sugar. I’ve added a few more counseling sessions this month to try and shed the negativity I’ve been feeling about life and the world. Plus I had lunch or a walk with various friends and that always lifts my spirits.

As of two weeks ago, my weight had increased 14 pounds since coming home from Belize. That’s over a pound a week. Of course, our lives were imploding–between my husband having to stop working, trying to figure out how to pay for our lives, watching my kid’s mental health swing up and down and all around, and having the relationship between my husband and I change a bit with the extra caregiver role I need to take on. So…of course I gained a pound a week! I ate every fucking thing I felt–anger, resentment, joy, sadness, frustration. And in case you were wondering, those emotions tasted like peanut butter, chocolate, and margaritas.

But then, finally, warm weather came to Maine. It was staying lighter later. My walks increased, I was still only running once or twice a week, but I was moving more and feeling…hopeful. So I started physical therapy for my hip and leg hoping to stop feeling like I’m 70. I continue to walk or run 5-6 times a week, while listening to a playlist that either reflects what I’m feeling or inspires me to be something or someone I wish I could be.

“Happy” by Pharrell Williams has been a long time favorite of mine. The tune, the lyrics AND the music video, all make me smile and make me move my body. Essentially, it makes me happy for those four minutes. Although it’s not really possible for me, it’s still what I aspire to be much of the day.

“Love Myself” by Hailee Steinfeld and “Rebel Girl” by Bikini Kill represent the women I want to be.

“I’m Still Standing” by Elton John reminds me that through all the challenges in life, I’m still here and doing my best to keep placing one foot in front of the other.

And then there are the songs like “Not OK” by Robert Grace that reflect how I sometimes feel.

But peppered throughout the playlist are songs like “Don’t You Worry” by Black Eyed Peas, Shakira & David Guetta and “It’s Alright” by Mother, Mother. They remind me that more often than not, I’m gonna be ok. I will make mistakes, I will grieve new and old losses, I will be angry at my circumstances, but I will make it through. Because that’s what we do.

Your support and generosity have been the motivation to get my shit together. When so many people love me and have faith that my family can get through this wacky time, then how can I not believe it myself?

So thank you, friends, for cheering me on. You are the absolute best.

GROUP HUG!

Shame

I write this blog because it helps me sort out my feelings, my thoughts about my life, and to share my experiences with some folks who either can relate or those who care about me. I do not ask for anything but a few minutes of your time if you are so inclined. But my last post brought gifts from some of you. You read my piece and felt for me and my family’s current situation. Your generosity and kindness was and is appreciated, and I am honored to call many of you my friends. I know you did what you did because you love me and the thought of me hurting in any way made you want to help. And I love you for it. I truly do.

But to be honest? I felt tremendously embarrassed and ashamed afterwards. I didn’t share to “get stuff.” I shared just to show this new thing I was experiencing and how frustrating (and humbling) it can be to eat from a food pantry. After the influx of gifts, I was kind of a mess for a few days until I had therapy. When I explained my dilemma to my therapist, she said something pretty dang profound. “Sometimes, Holly, it is our job to receive.”

*mic drop*

That one sentence changed my perspective on these gifts. I ended up using two gift cards for a trip my son and I had planned from last year. (We drove to Washington, D.C. to look at colleges and we needed snacks, friends.) I did refuse a few offers when I was able to, and others? I put some of the gifts aside for a little later when I know we’ll be more desperate than now.

Do you know what’s really disturbing about all of this? When my son and I went to D.C., we stayed with some old friends, who have become part of my family. My dear friend, a woman I’ve known for 30 years, had asked me about these cassava flour brownies that I made. I said that I got the flour from someone, but I could not say the words out loud, “I got it from the food pantry.” (Which, btw, that’s pretty great to get anything gluten-free from a food bank, and this was from our local high school’s food pantry.) I know for a fact that she would never judge me. Not for a second. Yet I was too ashamed and embarrassed to say that I got it from a food pantry. That shame is so deeply ingrained into me. I just want to starting yelling, “I have a good job, a fucking master’s degree, so don’t look down on me!”

But who is actually turning their nose up at me? Is it you? I don’t think so.

I think it’s me.

I shouldn’t be in this situation. I should be helping people that need an extra hand.

I should be you.

But I’m not. And I’m angry about it.

Then today, I brought this walker up from the basement. When my husband was on a respirator and in a coma back in 2020, this was given to him once he was able to leave the hospital. It was necessary then, so we kept it, hoping we wouldn’t need it for years to come. This morning, my husband’s knee was swollen, his neuropathic feet were hurting, and he was having problems standing up from his living room chair. Before I left for work, he asked me to get the walker from the basement. So I did.

On the drive to work, I couldn’t take a deep breath. I knew I was having an anxiety attack. I was thinking about my husband, my son was home sick, I was missing some friends I haven’t been able to talk to, I was feeling alone and scared…but I just needed to get to work. Once there, I pretended all was good until I couldn’t any more. I asked a colleague if they ever had anxiety attacks (I was pretty sure they had) and asked what they did. They sometimes would just go into the bookstacks and center themselves. So before we opened the library, I went to a section of the stacks, sat on the floor, and sobbed. I couldn’t think. I couldn’t speak. I just sobbed and rocked myself. After a few minutes I was able to stand up and go back to work. A different colleague checked on me and we talked for a few minutes and they let me vent and cry some more, and that was the end of it.

When I was a Trevor Project volunteer, I helped many teens get through anxiety or panic attacks. Often I used the 54321 grounding exercise (name 5 things you see, 4 things you can touch, 3 things you can hear, 2 things you can smell, and 1 thing you can taste–the taste thing is always odd). But while my brain is freaking out, I could not name anything I was seeing because everything was a massive blur. Hell, I couldn’t remember the order of seeing, touching, hearing, etc. But today I learned that sometimes being alone to cry, drinking water, taking a brief walk or finding a place nearby to get a good snack, are all good things to help calm me down to a place where I can function again.

Did I feel a bit embarrassed and ashamed for having this mini breakdown? Oh yeah. I see people every day who have no home, who keep every possession they have in a shopping cart, who only eat what is given to them. And I’m crying over a husband who can’t work and a life that I wasn’t expecting?

Well…yes. I am. Do I wish I could suck it up and just get on with whatever life I have? Yes, yes I do. And somedays I do a great job at it.

But today wasn’t one of those days.

You know what, though? Tomorrow is a new day. So there’s always hope that I’ll function tomorrow, that I’ll be able to get up on time, exercise, eat well, and smile more often than not.

That’s my goal.

How about you? Are you ok? No matter what I’m going through, I’m still here to listen. It’s the least I can do for you, like you’ve done for me. ❤

Prep Time

My distal pancreatectomy is in two weeks. In the past month I’ve had scans and blood work and so many phone calls about anesthesia and what to do the night before and the morning of. But I’m also prepping my staff and my family and trying to do everything I can to make this absence be as smooth as possible. I’ve ordered extra supplies for work and have made a crazy-ass schedule with part-time staff and substitutes galore and volunteers. I’m training some of those people next week, but like I’ve said before, I do have confidence in everyone. I’m just trying not to stress anyone out more than absolutely necessary. Except myself, of course.

It’s been hard to focus on one thing lately. As I typed that last paragraph? I actually stopped and emailed one of the new subs to update them on their schedule. Why? Because I’m afraid if I don’t do things as soon as I think of them, they’ll be gone from my brain and by the time I remember, it’ll be too late.

Here at home I’ve also been prepping, but more like prepping for my death. I pay the bills in this family and although we have a password notebook anyone can consult to pay said bills, it’s kind of a mess. I know most of the passwords by heart, but if my husband would have to pay a bill, he’d have no idea where to pay or how. We do have a budget and bill payment schedule on our refrigerator, but he doesn’t know which things are automatically paid and which you have to pay online or that one thing we actually have to send a check to or pay in person. So I’m in the process of re-writing our password notebook and have re-done the budget with AUTOMATIC written on certain things. I’ve added all of our passwords to various streaming services to the notebook along with bank info that he probably doesn’t know. I’ve dug out my living will to bring to the hospital and to send a copy to a friend because I want to make sure several folks have it.

When I started doing this a few weeks ago, it made me feel good. I like to be prepared. Remember that post about preparing myself and my home if my husband were to die tomorrow? That shit just helps me cope. But this week? Oi. So not good.

The stress at work felt insurmountable yesterday. Like a child, I actually closed my eyes and put my hands over my ears at one point and told a co-worker to please stop talking. I could feel a full-fledged anxiety attack coming on and I just couldn’t answer one more question. It scared me. Their questions were valid and they should be asking them, but I just COULD NOT deal with them at that moment. I took a few minutes to breathe and we talked and then I was able to answer them again. But that anxiety lingered into the evening and I ended up eating three brownies trying to make myself feel better. Instead I nearly hyperventilated when it came time to go to bed. I put my head between my knees and tried to breathe. I was finally able to lay down, but it took effort to not think. (One of my cats snuggled in on my shoulder and purred away, so that helped.)

Today was a bit more of the same, but not at that same level. I still don’t feel like I’m breathing normally, but I am able to take a deep breath. There’s definitely this level of worry and concern of the unknown–as in how my surgery will go and what my recovery will be like–but also anxiety of the incomplete tasks that still need to be done.

And did I tell you I’m turning 49 next week? The same age of my brother when he died? And that he died at the hospital I’m having my surgery at?

Yeah. I’m freaked. I’m scared and sad and angry and worried and all the damn things.

So…I told my husband last week that I want a session at a local sensory deprivation tank. I have been doing all the things I can to try and relieve stress. First I did the bad things–drink alcohol (which I can’t do anymore until sometime after my surgery or never again) and eat junk food or just eat non-stop. Then I did my usual schtick–run, read with mellow music or nature sounds, walk near the woods (there are so many ticks right now that walking in the woods stresses me out), take my usual anti-anxiety med, chat with friends. But sometimes all of the good things are just not enough.

My husband is the worst gift giver in the world, even when I tell him exactly what I want. And trust me when I say I don’t ask for a lot. I don’t have particularly expensive tastes, and I’m not into jewelry or flowers. Yet typically, even after 25 years of marriage, the old man sometimes just doesn’t quite get it. But this time? This time he came through.

In a few days I’m going to give this thing a try. I’ll float in a tub of water with 1200 pounds of salt. I may have lights and music, or I’ll skip all of that and just be. I have no idea how this will make me feel, but I’m looking forward to giving it a shot, to trying something new, to try and find a little peace.

May you find your own bit of peace this weekend, too. ❤ Hugs to you, my friends.

I Think It’s Getting Better?

Just a few days ago I wrote to y’all about my anxiety, my frustration and my helplessness. Since I began therapy a year ago, I’ve been trying to not compartmentalize my emotions as much and instead attempt to actually feel them and deal with them at the moment they happen. Well that turned out to be a mess! As I told a friend today, it’s like I’m trying to stop a waterfall with my hands. Every feeling and thought overwhelms me until I feel like I’m drowning.

So I began my extra anti-anxiety/depressant med a few days ago. I truly felt like a zombie the next day and ate a lot of sugar and salt throughout the day just to function (and comfort). But Thursday was a little better. I got to talk with my sister and a few friends and it was doable.

And today? Today was pretty ok. I didn’t go to work but had a meeting via Zoom. I got to laugh with some of my colleagues, ask questions, offer a little assistance, and generally felt good when it was over. I felt…worthy, competent, maybe appreciated in a weird way? Then I had to race to my appointments at the hospital, tests to have done before my distal pancreatectomy in June. The tests were not horribly unpleasant, but I wasn’t able to drink coffee or eat until 3pm, so I was a little fuzzy. It did remind me of what it feels like to have pancreatitis again, though, and not being able to eat or drink coffee and having your brain be foggy and just wanting to eat absolutely anything. I started to think about the upcoming surgery (and knowing I won’t be able to eat for several days then) and decided I just couldn’t. Back to stuffing shit into my brain boxes so I don’t have to deal with it!

As soon as my CT scan was done, I decided to go directly to the hospital cafeteria for coffee and a gluten-free blueberry muffin (which are especially delicious when you haven’t eaten in 20 hours). Normally I immediately leave the hospital after any kind of appointment. I’ve been there so much in the past few years for myself and my family that I don’t like to linger. I always have this feeling like if I stay for a bit, Fate will think I should stick around and something will happen to someone I love. I know. That makes no sense but my brain often doesn’t.

But…Dad died in this hospital. I’ve been thinking of him so much this past week, missing him SO much, desperately wanting to talk to him and be hugged by him again. I needed him. He’s not here. The last time I heard his voice and said he loved me was in this hospital. So today….today I lingered. I got my coffee and muffin and sat down in the eating area. I didn’t read my book or look at my phone. I just tore my muffin into bits, popped them into my mouth and washed it all down with Snickerdoodle coffee. I didn’t think of anything in particular. I didn’t think about the fact that this hospital was the last place I had a conversation with my brother, the last place I saw and touched my father, but also the place where my son was born and the place that saved my husband’s life. There is so much grief and joy for me associated with this hospital that it’s difficult to even know what I’m feeling.

So instead of trying to identify what I was feeling or thinking, I just sat. I watched a few people, but mostly I enjoyed what I was eating and drinking and concentrated on the tastes and textures. I lived in the moment. It’s something I wish I could do more.

There’s always tomorrow I suppose.

Here’s wishing all of you more times of living in the moment. ❤ Hugs to you, friends.

Worry, Concern, Apprehension

Anxiety: “The state of feeling nervous or worried that something bad is going to happen.”–Oxford Learner’s Dictionary. The Mayo Clinic defines anxiety as an “intense, excessive, and persistent worry and fear about everyday situations. Fast heart rate, rapid breathing, sweating, and feeling tired may occur.”

Have you ever had an anxiety attack? Not a panic attack–where you truly feel like you’re dying–but a sudden feeling of anxiousness and worry and maybe have trouble breathing? For the past few days, since we came back from our “vacation,” I’ve had a few of these attacks. This “vacation” was time away from home, but not nearly enough relaxing. There was a LOT of stress between the actual traveling (slept in an airport, spent 7 hours in another one) and visiting family and honestly…me being me. Trying to make everyone happy at least some of the time is what I tend to do in ALL situations–family, friends, work. And this was a visit to some family we haven’t seen in a while and I knew it was bound to be stressful but…was it really any worse than any other visit?

After arriving home (10 hours later than we were supposed to) and enjoying sleeping in my own bed again, I felt a bit off. Again, that’s to be expected. Post vacation blues are a real thing, hence my large brownie for breakfast that next morning. I spent several hours doing laundry, emptying suitcases, vacuuming, and feeling productive. Then I headed to my scheduled therapy appointment…and completely lost it.

I’ve been told that sometimes when you completely relax, emotions and memories and pain can all rise to the surface because your body and mind are no longer going at top speed. And although I didn’t get a lot of that relaxing time, I did have at least a few hours where I just swam in the sun or dozed in a dark, cool room or walked along a secluded lakeside path. But I thought about so little during those times nor did I think of much again until I sat in my therapist’s office. And even then I just FELT everything. I was completely overwhelmed with grief and confusion and loss and maybe wishing for something I can’t have?

I don’t know.

All I know is that I couldn’t leave my therapist’s office. I could not stand up. I did not know how to leave, how to take one step in front of the other and walk out her door. I was sobbing and asked her to give me an assignment because I knew if I had one thing to focus on, I could at least leave her office and get to my car. So she did, and somehow I left the building.

The next afternoon I was on my way to drop my son off at the mall when all of a sudden the noises I could hear were literally taking my breath away. The radio was on, my son was talking, his phone might have been playing something, we just passed a bunch of kids on bikes…it all became too much. I had to pull over, shut off the radio and asked him to just stop for a minute so I could breathe. I closed my eyes, took a few breaths, and I was better. He asked if I was ok, and I said not really, but would be. I cried a few miles later and we talked about how this trip, this “vacation” affected us both. The horrible traveling really got to my son, as well as the heat and possibly a bit too much visiting. 🙂 He then played us some 80s music as we continued on to the mall and we both felt immensely better.

On Sunday I had planned to run and boost up my endorphins. But a friend called and needed my husband and I, and honestly, I was glad he did. Focusing on someone else’s problems and/or pain is a great way to distract you from your own! It also resolved some issues that have lingered for nearly 30 years, so I’m grateful for that and the fact we were able to help and be there for our friend.

But today, as I drove my son to school, anxiety overwhelmed me once again. There was no music, no noise, no talking even. I didn’t need to pull over this time, but I did need to take many deep breaths and try to just focus on the road. Once I dropped my son off, I called my doctor and asked to double my antianxiety meds. (I’m currently on the lowest dose possible and have been for nearly two years.) He said I could, so tonight I’ll give it a shot and see how the next few weeks go.

I started to write this tonight to try and figure out what is going on in my brain. I don’t know if I’m much closer to any answer, but it felt good to get something out on “paper.” Although my therapy can be tremendously helpful, my secondary form of therapy, aka blogging, can also clarify situations, problems, ideas or emotions enough for me to at least carry on until I can figure things out.

So…as always…thank you for listening. If you ever feel this high level of anxiety, please reach out to get some help, ok? Even if it’s just to talk to someone for a little bit. You can always reach out to me, too. You don’t have to know me but know I can listen. I’m not a professional so please reach out to a counselor or therapist if that’s what you need, but if you need a sounding board, I’m happy to help.

Take care, all. ❤

Doing ok?

I seem to ask that question a lot these days. I ask it of my family, my staff, my friends. I am asked the same question nearly every day, too. I think we’re all just trying to hold on and keep connected and check in to see if others are feeling as bad as you are.

How I feel most days…

Like you, there are good days and bad days, or rather good moments and bad days. Last week seemed particularly bad, at least at the end of the week. My son had a meltdown on Friday night, my husband snapped at me and his mother (over the phone) multiple times. (I had my screaming fits the week before so it was their turn.) Many folks here in Maine at least, seemed to have a similar reaction. It’s like we reached some breaking point of too many Zoom meetings or too much time alone or too much time with our families. Or maybe it’s because there’s talk of the “Stay at Home” order being lifted and we’re scared and we think it’s too soon.

I feel lost with little to no guidance. Nobody has definitive answers about much of anything. At my work there needs to be so many things put into place. Even if we can do some things like curbside service for library patrons, we are not ready to do so on May 1st. I feel like we put our pandemic plan into place in minutes, but we will not re-open as quickly. There are not enough supplies around to make us safe–masks, gloves, cleaning supplies–and then there’s the marking up of the library to stay 6 feet apart or counting people as they come in to make sure we’re not over the limit and do we install plexiglass or plastic sheeting at the desks? It’s all overwhelming and scary yet also seems necessary if we are ever to reopen.

And then there’s home. After being disabled, my husband is due to go back to work in a week. He’s already been warned that he may be furloughed. We already know our son will not be going back to school, so the online classes continue and the arguments getting him to do some of his work continue. Of course, then there’s just the uncertainty of it all. What will the future hold? What will our lives look like? Will the kids even be able to go back to school in the fall? Will the library be able to hold any kind of event this year? Will we all still have our jobs?

I try to not think of those last questions. I can’t. It’s a day by day world now, and I try so hard to live like that. As I’ve said many times, I’m not great at it, but my dad always tried to teach me to be patient. It’s ok to have plans, but know that they could all be shot to hell in an instant.


And just a little question for y’all. Have you gained any weight recently? I certainly have. At the beginning of March, I had pancreatitis for over 2 weeks and lost 11 pounds. (That was part of the 20 I gained last year and was trying to lose.) The day we closed the library was the first day I could start eating again. By the next week I had wholeheartedly begun stress eating. Fortunately I’m now running 4 times a week but the 11 pounds came right back anyway. And it’s kind of ok. I’ll continue to wear my fat clothes and occasionally munch on baby carrots, but a cookie or two a day is currently a must. The binging has finally stopped, but a little treat each day is my medicine–along with my antidepressant. 🙂

Stay as well as you can, everyone. Still looking forward to the days when I can hug you tight. ❤

Suddenly

I know. You want to sing it, don’t you? It’s ok. You can.

This morning started out as a typical Sunday morning. I slept a little late, watched a bit of tv with my boy, baked breakfast cookies for the week and started laundry. After a while, I decided I didn’t want to go out and walk on this dreary day, so I started to move furniture in the living room so I could work out there. I had to move my body but nothing too strenuous. As I was moving the hassock, my  husband asked me a question. I started to answer, then stopped. I tried to take a breath then apologized to my husband and started to sob.  He ran over to me and hugged me and just let me cry.

I had this sudden feeling of powerlessness and loss and sorrow. My mom is about to go through a pretty intense operation on Tuesday to help her circulation in her left leg. It’s a tough thing for anyone to go through, but a 71-year-old woman with a frail body and mind? It’s even tougher. I’m scared for her. I’m scared for us. I think she’ll make it through the surgery, but her mind might not. Will she know my sister and I when she wakes up? Will she know her son is gone? I don’t know.

I was missing my brother this morning, too. In the fall and winter, nearly every other Sunday my brother stopped by my house to have tea while I baked something. He would tease my son or chat with him while I washed dishes. I’d lean on one side of the counter while he sat on the other and we’d munch on goodies and talk about our week. Eventually we’d head into the living room and continue our conversation. It was a part of my week I always looked forward to.

I miss him so fucking much.

I wish he’d be at the hospital with us while we wait for Mom’s surgery to be over. He’d make us laugh and just be there. His presence just made me feel better. He’s part of my home.

After crying in my husband’s arms for a few minutes, I walked about the house and realized I just needed to be outside. So I slipped my headphones on, told my family I was going for a run and left. This is only the third run I’ve been on in the past month, but it felt ok. It was really difficult and I trudged more than I ran, but I refused to walk. I needed to sweat out some of this anxiety and sadness and just plant one foot in front of the other. So I did. And it was ok. I felt better than I had when I left my house. So that’s something.

On a side note, if you read my last post, you know I’m trying to get a counselor/therapist/someone to talk to. It hasn’t happened yet. I did make a few calls, finally got an appointment, but then cancelled it. Our electricity (like many in Maine) had been out for a few days last week and I couldn’t deal with doing one more thing. And no, I didn’t reschedule yet. I need to get Mom through her surgery and then we need to take life day by day after that. Am I making excuses? Probably. But the thought of adding one more thing to my life at this moment makes me want to pull my hair out. And I like my hair. So this will have to wait. For now.

If you’re feeling particularly generous or positive or hopeful on Tuesday morning, try to send a little of that my mom’s way, ok? I know she’s a tough ol’ bird, but a little extra optimism wouldn’t hurt.