Tag: fatigue

SoCS: JC’s Confessions #35

reading difficulties

While this post will be stream of consciousness for Linda’s Stream of Consciousness Saturday on the prompt “easy/hard,” it is also part of my occasional series JC’s Confessions, so I will open with the usual non-SoC opening for that series.

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.

Reading, which is something that was usually easy for me, is now often hard to do.

As someone who loves reading and who is trying to be a writer and poet, that’s a hard thing to admit.

This change is mostly related to what has recently been diagnosed as hypermobile Ehlers-Danlos syndrome (hEDS), an inherited connective tissue disorder that affects collagen. Because we have connective tissue throughout our bodies, many different body parts and systems are affected and the symptoms and their locations vary over time.

For these last couple of years, I’ve been having a lot of problems with my brain and with fatigue.

I often have brain fog, which makes it difficult to concentrate. This makes it hard to read anything that is long, like books. I do better with short things, so I do a lot of my reading these days in the forms of emails, so, given what is going on, I read commentary on political topics and environmental problems and some Catholic church/social justice news that lands in my inbox.

You would think that poems would be perfect for my length limitations, but, sadly, this isn’t the case. I’ve largely lost contact with the creative side of my thinking, making it hard for me to read poetry most of the time, as I am not able to really appreciate the art of the poet. I hadn’t realized how much of my own creativity is wrapped up in reading someone else’s work. I do still manage to do a bit of reading of poems, especially my poet-friends’ work, but it’s frustrating and sad for me, knowing that I can’t fully appreciate their artistry.

I also have severe limits on how long I can read, write, or concentrate. I’m writing this in the morning and hope to draft one other practical letter I need to write, but that will probably be about it for the day because I will be very tired afterward. In order to have energy to go to vigil mass at 4:00, I’ll most likely spend the early afternoon lying down and resting.

It’s really hard to deal with these limitations on my brain power and energy.

There are also some other problems caused by my hEDS that interfere with my reading. I’m having a couple of problems with my eyes. I have some level of visual disturbance going on, especially with my left eye, which causes some blurring that isn’t able to be corrected with glasses. The problem isn’t with the eye itself but with the brain in processing it – at least that is the current theory. It may be related to dysautonomia, where the regulation of all those things that our bodies ordinarily do without our thinking about them goes a bit haywire. On rare occasions, I can concentrate hard enough on what I am looking at that I can get the blurriness to clear, although only for a short amount of time and at risk of ramping up the fatigue.

The other connective tissue-related eye problem is dry eye, which I treat with prescription drops, artificial tears, and taking flaxseed oil. These help but don’t eliminate the problem, which, on top of everything else, makes reading, especially onscreen, more tiring.

Now that we know about the hEDS, we may be better able to address some of the problems underlying this struggle I’m having with reading.

Or not.

I have a bunch of referrals to new specialists pending. I’m most anxious to find help for the brain fog/fatigue symptoms so that I can think and feel like myself again.

Meanwhile, I feel sad – and, sometimes, guilty – that I can’t manage to read my friends’ work or keep up with the torrent of news and commentary that I would like to do.

I try to give myself grace, but it’s hard.

*****
You are invited to join us for Linda’s Stream of Consciousness Saturdays. Find out more here: https://lindaghill.com/2026/03/20/the-friday-reminder-and-prompt-for-socs-march-21-2026/

tired

I’m so tired today.

It’s been a week with a lot of medical stuff going on. I have some news that I hope to share but it will be complicated and I don’t have the energy to do it today.

Maybe tomorrow.

Or over the weekend.

Or next week.

Hoping it will make it into Just Jot It January, at least…

Join us for Linda’s Just Jot It January! Find out more here: https://lindaghill.com/2026/01/15/daily-prompt-jusjojan-the-15th-2026/

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.