Tag: fatigue

JC’s Confessions #33

being high-maintenance

In the first few seasons of The Late Show, Stephen Colbert did a recurring skit, then a best-selling book, called Midnight Confessions, in which he “confesses” to his audience with the disclaimer that he isn’t sure these things are really sins but that he does “feel bad about them.” While Stephen and his writers are famously funny, I am not, so my JC’s Confessions will be somewhat more serious reflections, but they will be things that I feel bad about. Stephen’s audience always forgives him at the end of the segment; I’m not expecting that – and these aren’t really sins – but comments are always welcome.

In recent months, I’ve become very high-maintenance.

Not a fan.

My style for years has been no-muss, no-fuss. My hairstyle doesn’t require blowdrying and products. I don’t wear make-up. My clothing style is simple. I can get ready to go out in five minutes or less.

I could spend most of my time and brainpower on more creative endeavors and helping others.

Now, it seems that taking care of myself has become a full-time job.

In attempts to improve my current state of health, there are physical therapy exercises daily and near-constant attention to my posture and head/neck position. Needed rest periods. An increasing complicated array of medications, including one that needs to be mixed in a full glass of water and drunk immediately – four times a day – which makes it a bit tricky if I have to be away from home for several hours. Trying to figure out what to eat and drink when a food recommended for dealing with one of my syndromes is excluded by another to the extent where I sometimes don’t know what to eat. Dealing with my AutoPAP machine. Fussing with dental care and retainers. Going to appointments and tests with so many specialists that I’ve lost track of them all and trying to get information coordinated among them and with my primary care doctor, because, of course, the practices, despite all the electronic records systems, can’t seem to do it. Doing research on the various symptoms and diagnoses and trying to piece everything together.

It’s time-consuming and frustrating and doens’t leave much energy or brainpower for the thousand things I’d rather be doing.

There is some hope.

Lately, my brain fog and fatigue have diminished and it seems that we are finally getting closer to a more comprehensive diagnosis and clinical outlook.

Maybe that will translate into an easier daily regimen.

I don’t think I will ever be low-maintenance again, but maybe medium?

JC’s Confessions #31

In the first few seasons of The Late Show, Stephen Colbert did a recurring skit, then a best-selling book, called Midnight Confessions, in which he “confesses” to his audience with the disclaimer that he isn’t sure these things are really sins but that he does “feel bad about them.” While Stephen and his writers are famously funny, I am not, so my JC’s Confessions will be somewhat more serious reflections, but they will be things that I feel bad about. Stephen’s audience always forgives him at the end of the segment; I’m not expecting that – and these aren’t really sins – but comments are always welcome.

On April 6, 2025, Pope Francis appeared in public for the first time after returning home from his long hospitalization. It was at the end of a special Jubilee liturgy for the sick and health care workers and others who care for them. He had written the homily and a special blessing for the mass, although they were read by others. Francis wrote:

In this moment of my life I share a lot: the experience of infirmity, feeling weak, depending on the others for many things, needing support. It is not easy, but it is a school in which we learn every day to love and to let ourselves be loved, without demanding and without rejecting, without regretting, without despairing, grateful to God and to our brothers for the good that we receieve, trusting for what is still to come.

I am currently entering the second year of dealing with a complex medical situation that has not yet been fully diagnosed. I don’t know if I will be able to be adequately treated or if I will continue to see progression in my symptoms.

It’s hard.

I confess that I am not always gracious in this situation. I manage to let others do things for me and to ask for accommodations if I need them, but I find it difficult to set aside regret and to trust in the future.

This is especially hard for me in regard to my future as a poet. I don’t know if I will regain the creativity I’ve lost to brain fog and fatigue. I’m even losing the concentration and attention to detail needed to do submissions for my already existing poems and manuscripts.

I’m trying not to get to the point of despair.

These next few weeks are important in that I have a new batch of tests and specialist visits coming up.

Maybe having some more information about what is happening will help me to be better with being sick.

Maybe not.

I’ll try.

(I realized when I went back in my blog to find the number confession this was that this confession is, in a way, a continuation of #30.)

SoCS: crumpled?

I remember reading Linda’s prompt for Stream of Consciousness Saturday yesterday and thinking that I would pass this week because absolutely nothing came into my head, but, this morning, as I lay crumpled on my bed because taking a shower was too tiring and I’m trying to rest so I can participate in a poetry reading this afternoon, I thought I should post because I thought the prompt word was crumple but it was actually crackle, so never mind.

Yeah.

Brain fog.
*****
Please join us for Linda’s Stream of Consciousness Saturday! Details at the link above.

SoCS: my year

My year has been a mess.

(It’s probably dangerous to write about it in stream of consciousness but here goes…)

2024 has been largely spent trying to untangle personal and family health situations. In March, I developed a constellation of symptoms, including left side tinnitus and visual blurring, left side neck pain and stiffness, numbness/tingling most prominently on the left side of my head, balance problems, and brain fog and fatigue.

There has followed a bunch of tests, specialists, and physical therapy – with weeks and months of waiting – and a lot of ruling out of diagnoses, but no answers yet.

Given family history and my own research and trying to pull together all the scraps of information I get from my care team, I think I have a decent guess on diagnosis but it doesn’t really matter unless I can find a doctor willing to look at the whole situation instead of their own specialized body part.

Meanwhile, I’ve lost almost a whole year of poetry work. My creative brain isn’t functioning most days. Sometimes, I get a window first thing in the morning but often not. I’m spending most afternoons in bed because of the fatigue and because it is difficult to hold my head up without support for extended periods. If I push through and do too much on a day, I’m likely to pay for it by being largely non-functional for a day or two or three or a week afterward.

I’m also lacking in my ability to remember and keep track of things. My critical thinking skills are slowed down, too. I try to do tasks that involve a lot of thought early in the day to have the best chance of remembering and piecing things together.

It’s sad and terrifying and frustrating.

I feel like a lot of who I know myself to be is missing and I don’t know if or when it will be back.

A recent test seems to show poor blood flow in one of the arteries that supplies my brain. I’m hoping that this might give us a treatable thing to work on but I’m currently waiting for the appointment with the specialist who can interpret the test. There will probably be more tests before we get to the diagnosis/treatment part.

I don’t know if 2025 will bring my brain back or if I will be facing further deterioration.

I’ll try to let you know…
*****
Linda’s prompt for Stream of Consciousness Saturday this week is “my year.” Join us! Find out more here: https://lindaghill.com/2024/12/27/the-friday-reminder-and-prompt-for-socs-dec-28-2024/

SoCS: security blanket

I don’t remember if I had a security blanket when I was little but I could sure use one now…

Linda’s prompt for Stream of Consciousness Saturday this week is “blanket.” Join us! Find out more here: https://lindaghill.com/2024/11/15/the-friday-reminder-and-prompt-for-socs-nov-16-2024/ (Admittedly, this is a very brief excursion in stream of consciousness, but I am really struggling with brain fog and fatigue lately and I figured a short post was better than no post.)

health update

I thought I’d do a brief update on my health status, despite still being in the middle of the diagnostic swamp.

When I wrote my last update, I had not yet started vestibular therapy or had my hearing test. The hearing test ruled out hearing loss as a cause for the tinnitus. I’ve been making progress with vestibular therapy and my balance is improving, although fatigue or being out in the summer weather aggravates things considerably.

It’s looking increasingly like the basic problem may be in my neck, so I have just begun physical therapy on my neck and we are looking into referrals to specialists who might be able to arrive at a diagnosis.

Meanwhile, I’m continuing to operate at diminished capacity. The tinnitus remains constant. There is still a lot of fatigue and brain fog and some periods of fuzzy vision. The neck pain, headache, and tingling come and go. I have to be careful not to do too much on any particular day and sometimes need naps. I am cutting back on my responsibilities and activities, which is frustrating.

Stay tuned…

Energy, exercise, mitochondria, long COVID, ME/CFS, etc.

I almost started to cry when I heard this piece on National Public Radio’s Morning Edition. (The audio clip is at the link, as well as a written transcript which may offer a bit more information than the audio in addition to links to the studies cited and to people providing commentary.)

The piece discusses that people with long COVID have physical changes in their tissues that showed cause for their exhaustion or “post-exertional malaise.” The mitochondria in the muscle cells were not functioning properly, so the muscles could not get the oxygen and energy they needed. It appears that this mechanism is also at work in people diagnosed with ME/CFS and other similar, poorly understood syndromes that exhibit these symptoms.

A member of my family was diagnosed with ME/CFS, then called fibromyalgia/chronic fatigue syndrome in the United States, as a young adult, although she had been having symptoms since early adolescence. She was told that she needed to exercise to build her strength, which was common advice at the time but which proved to be detrimental to her. If she tried to push herself physically at all, she would wind up in so much pain and with so much fatigue that she could barely move for a week or more. As I was listening to the radio piece, I was thinking back to those days, when she was so debilitated that we would strategize when or if she could join the family from her upstairs bedroom because she could only manage the fourteen stairs between the levels once a day, at most.

What made a terrible situation worse was that the doctors would think she “wasn’t trying to get better,” essentially blaming her for her condition when the root of the problem was their lack of understanding of ME/CFS. Effort or mental attitude is not going to repair one’s mitochondria.

I appreciate that research money going to study long COVID is also increasing understanding of ME/CFS and other conditions with similar symptoms. (You can read some of my prior posts referencing long COVID and its commonalities with ME/CFS here and here.) I’m hoping that increased understanding will bring more effective treatments and, at least, an end to blaming patients for “not trying hard enough” to get better.

Compassion is needed in these situations, not judgmentalism.

Compassion is always needed. 
*****
Join us for Linda’s Just Jot It January! Find out more here: https://lindaghill.com/2024/01/12/daily-prompt-jusjojan-the-12th-2024/

High/Low

Yesterday was Pentecost Sunday, which began with 8 AM Mass. I knew that daughter E would be cantoring, but found out on arrival that her spouse L was singing with her and that the handbell choir was ringing for the last time before their summer break. It was heartwarming and joyful to hear E and L sing together in public in the weeks before their first child arrives. Our friend music director Nancy said that she could feel L’s breath supporting E, although I think that even into her ninth month of pregnancy, E’s breath control is better than mine.

Unfortunately, the rest of the day was more subdued. We wound up needing to take Nana to the walk-in medical clinic and then to the emergency room for some tests. She had made some gains and started outpatient physical therapy instead of having in-home therapy, but, in the last week, she has gotten weaker and more fatigued. This morning, we have a follow-up appointment with her primary care physician.

Sometimes, it is two steps forward, one – or more – back.

Middle of the night to middle of the night

I started my writing day on  Sunday at 3 AM, drafting the “Meanwhile in Tibet” poem that has been sloshing about in my brain intermittently since last November in my journal, so as not to expose myself to the blue light of my Chromebook. (Point of information, or, perhaps, warning : I am writing this now at quarter of two Monday morning on my Chromebook, hoping that the blue light won’t keep me from catching a few hours of sleep later on. Many “night’s sleep” for me lately resemble a couple of naps, instead of a single expanse of sleep. So, back to the story of yesterday…)

After a few more hours of sleep, I breakfasted on an excellent apple crumb cake that I had bought on Saturday from the Clarksburg Bread Company at the farmers’ market and went to my studio to write. I began a Fall Foliage Parade poem, recollecting my memories of the parade as a child, and I typed in and revised the Tibet poem. By then, lunch was approaching, so I decided to go down early to make some notes for a planned poem on local supporters of the museum.

We lunched and visited and, while the other poets started a workshopping session, I excused myself to attend the parade. I walked over Hadley Overpass and settled myself on the rail only feet away from where we used to watch the parade in front of my grandparents’ home on State Street. The building is no longer there, replaced by greenspace and a path into Heritage Park. The crowds were thin and the parade resembled more Fourth of July or Old Home Days in the small towns than the Fall Foliage Parades of forty-five years ago. It was also strikingly quiet for a parade, to the the extent that a couple of marchers actually asked what I was doing scrawling in my notebook as they passed. Telling a stranger you are making notes for a poem can result in some rather quizzical looks. I definitely have material to contrast the two eras, although the actual writing may have to wait until I am back home. I am acutely aware of how much I still want to do and see here and how little time there is. I have not even visited any of the new MoCA exhibits yet.

With the parade being barely an hour, I arrived back in time to catch the second half of the workshop period. I workshopped my Boiler House poem and received lots of good feedback for revisions. I continue to contend with the issue of how to address writing about art installations in a way that is engaging as poetry and not dependent on having experienced the art on which the poem is based.

We decided to have supper at the Freightyard Pub and to walk there rather than drive. As the local, albeit several decades removed, I was the designated tour guide, so I went for a walk to decide on the best route. It isn’t far but there are both railroad track and river crossings with which to contend and I wanted to check out conditions of walkways and such. I am happy to report that I successfully guided the group to dinner and back with no turned ankles.

Kyle proposed an additional workshopping session, so we headed back to the Studios. I decided to present The Octagon Room draft by just reading it from my google docs, thus saving paper. The basic question is whether it is worth working on as it is basically at the moment a very, very long list poem. The basic answer is “yes, but…” Everyone was helpful with ideas to approach revision. The $64 question is whether or not I have the skill to pull it off. It needs to percolate a bit, so I will set it aside and pick it up later after I am back home.

By the end of the session, I was too tired to work on this post. (I was probably too tired during the session to be as effective as I ought to have been; fortunately, everyone else was more with it than I.) I collapsed into bed and really, Mom, I did sleep for a while before writing this. It’s almost three o’clock now, so back to bed…

waiting is hard work

I haven’t been posting much this week because I have been busy helping my dad, known here as Paco, and my mom, aka Nana.

Paco’s doctors had been keeping an eye on a partial blockage in one of his carotid arteries and his last ultrasound revealed that it had reached 70%, which is considered time to intervene.

So, on Wednesday, I brought my parents to the hospital for Paco to have carotid angioplasty with possible stenting.

After a morning of doing bloodwork, starting IVs, and asking more questions than you would think possible, the team was ready to begin.

Nana and I waited in the coronary care waiting room because Paco’s procedure was taking place in the same kind of catheterization lab that is used for heart vessel procedures.

It was the same room in which I sat alone in July 2014 when Nana was in the cath lab while Paco was in surgery.

Not my particular favorite place to be.

After an hour, a nurse came out to tell us that a stent would be needed, which would take another hour.

So, we waited some more…

I was using the hospital’s wi fi to read email and such to keep occupied. A rejection notice came through from a submission that I had sent for expedited review. I should have heard back over two weeks ago and had been anxiously awaiting hearing from the journal. Under other circumstances, I might have been upset by the rejection, but, current priorities and perspective definitely put my reaction in its proper place.

We waited for the second hour we expected – and for most of the next hour, too. Nana was very anxious that something had gone wrong. I tried to be reassuring, knowing that things often take more time than anticipated and that informing the family takes a back seat to caring for the patient, but I don’t think I was very successful.

Happily, a nurse came out and said that he was all set and doing well. We got to see him for a moment in the hall before they took him to his room in the ICU, which is best equipped to monitor the heart and other vital signs after these kinds of procedures. They were supposed to come get us after they got him settled.

After a few more minutes, the doctor came out to speak to us and explain some details.

Then, we waited and waited and waited some more.

When we could finally visit in his room, we waited for his nurse to get back to go over more paperwork and for other practicalities like ordering Paco some dinner.

When Nana and I finally left after having been at the hospital almost eight hours, we were both exhausted.

Waiting is hard work.

Postscript:  Paco stayed overnight and was released around 1 PM the next day. We are all still tired and trying to get back on track. And we have to change the clocks for daylight savings time tonight. Goody.