Nerve block round 2

Today I went in for an appointment to repeat my nerve block.  The doctor and medical staff were all lovely.  But I arrived at about 2:35 and didn’t leave until 5 pm for a short appointment.  I was a bit early but got into a room right away.  Did the intake paperwork and questions.  Then sat to wait, and wait, and wait.  I tried to read my book but felt too tired.  I put my head on my hand, leaned on the desk, and fell asleep.

The very kind medical assistant came back in an apologized, and offered me hot chocolate or coffee, which I accepted.  Then I saw the doctor.  She thanked me for waiting and we proceeded.

I had a vasovagal reaction to the injection.  This means your blood pressure drops, you feel queasy and hot, and you better not stand up because you could faint or throw up.  Faiting is mainly a concern because you could hit your head or otherwise injure yourself.  This has happened to me a few times before, including once when I gave blood.  They lowered the table flat, gave me some cold washcloths, and made me lie still for an hour, monitoring my blood pressure and heart rate.  Even after I was feeling better, my heart rate refused to rise until I got up and walked around with the nurse.  By this time it was nearly 5 pm and my doctor had gone home.

The doctor asked if I’d had enough to eat today.  I said, probably not.  In part I had not planned to sit in the waiting room for an hour; I’d expected to be in and out.  Luckily I had a granola bar, some hard candy, and a water bottle in my bag.

If this goes like last time, I expect to get a bad headache tonight, so I bought popsicles and made sure my ice packs are in the freezer.

Health care can take a lot of time and be a lot of work.

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Small activism for people with limited energy or resources

What can we do, as chronically ill people? We are often not people who can plan and lead marches. We generally cannot work long hours. Many of us have trouble with phone calls due to anxiety. Many of us are poor and cannot donate or purchase supplies.

Here’s what we can do.
Link sharing of important information, research and fact-checking.
Emotional labor, such as telling people we care for them, leaving supportive comments, linking to cute animal pictures and music.
Listening to people’s troubles. Using Skype and calling our friends. Sometimes you understand something so much better when you describe it to someone else; you can think through a problem when you talk to someone.
Sending packages or notes in the mail.
Producing fanfic, fanworks, art, etc. Journaling. Creating. Letting our voices be heard. Reminding the world that we exist.
Wearing buttons– making ourselves and our positions visible to the world.
Starting conversations. Being allies as best we can.
Sharing what resources and skills we have. For instance cooking, proof reading, pet sitting.
Taking care of ourselves and each other, because survival is essential. Reminding others to do self-care. Affix your own oxygen mask before assisting others.

Health Work

I’m at the stage of having new glasses where they keep slipping down my nose, and I keep pushing them back up, in a futile attempt to make them stay were they ought to be.  I’ll have to go back to the store and get them adjusted.  This always happens, and it’s irritating.  I don’t understand why the store opticians can’t fit them to me right the first time; they are professionals after all.  I’m irritated at myself for not noticing and insisting on a better fit while I was still at the store.

I find myself irritated in this way a lot lately, and I know it’s because I’m always tired and always in pain.  I remind myself of this, and also that I’m doing important work that not always rewarding.  Other people with fatiguing, chronic health conditions like mine sometimes use a term called “health work”.  This is satisfying, empowering language creation; I’d like to know who came up with it so I can credit them.  For example, for an abled, healthy person, going back to the store to get their glasses adjusted might be a simple errand that costs them basically nothing other than time.  For me, it’s about a third of a day’s energy.  Besides the physical energy expenditure, this errand is yet another in a long line of tasks of things I have to do to take care of my health.  For the chronically ill, this list is never ending, often frustrating, and will never actually make us healthy.

This term is similar to Second Shift for the Sick but is more flexible.  Health work is not confined to a shift; it’s often constant and on-going.  There is no off times or vacations.

Health work can include remembering to take medications, remembering to schedule and go to appointments, refilling prescriptions, getting medical tests, the emotional work of dealing with illness, cleaning and maintaining assistive technology, doing exercises, cooking, and eating.  In short, in can be in all areas of our lives.

This term honors the work that disabled people do to take care of ourselves.

Second Shift for the Sick

I love language. One of the benefits of reading blogs is that I’ve learned words and phrases that have opened up my world and helped me understand my own life. I’ve learned how language can be empowering or disempowering. One such empowering phrase: The second shift for the sick.

This phrase refers to all the work one does when one has a chronic illness. Self-care can be a full time job; this applies whether one works a traditional job or not.

Some examples of things that take up time and energy in this second shift:
Multiple trips to doctor’s appointments, including specialists and physical therapy, and any alternative therapies such as acupuncture.
Trips to the pharmacy.
Filling up pill keepers and setting pill alarms.
Phone calls to arrange appointments and transportation.
All the waiting in reception rooms, on hold, and in line.

Resting. This is its own category. You might be saying, what is so hard about resting? Isn’t that a good thing? Well, for me anyway, resting so much is inconvenient. Sometimes the need for sleep or the need to sit down hits me like a brick, I need to do it now, even if I’m in the middle of a work day or out running errands. The need for rest can lead to frequently cancelled social plans. Rest can also be boring, especially when one is laid low by pain, because concentration is difficult.

Each chronically ill person probably has their own example of other “second shift” work. If you are on a restricted diet, that diet most likely involves a massive amount of work to plan and prepare, for instance. Keeping a journal of symptoms, something which is recommended for people with migraines, IBS, and other chronic illnesses, is often daily work.  You might need to do specific physical therapy exercises, maintain a CPAP machine, or check your blood sugar.

All of this work takes time and energy, and for the chronically ill, energy is often in extremely limited supply.

Amandadaw at FWD described it this way:

Resistance — truly the best word for it — it is as though “normal,” “healthy” folk are able to move throughout the world uninhibited, like pushing your hand into thin air — but sick people, disabled people must move through a world which is set up to prohibit their full participation — like pushing your hand into a thick heavy bog.

All of this logistical work is uncompensated; indeed, it is expensive. While chronic illness may reduce one’s earning power due to pain, fatigue, and other impairments, the financial costs of being ill are sometimes hidden. In addition to co-pays for medical expenses, chronically ill people may have to pay for things such as:
-transportation to and from appointments
-over the counter medications
-assistive technology such as braces, canes, mouth guards, special shoes, etc
-ice packs
-Special foods such as gluten-free items

Some will say that it’s only fair that those who are using medical services more should be paying the increased cost in the form of co-pays, etc. But it seems to me that this is a disability tax, a fee for being ill.

Discovering the phrase “second shift for the sick” was empowering for me because it gave me a way to recognize all the little things I’m doing as work, work that other people don’t have to do, work that is costing me money and energy.  Learning about women’s work and emotional work were similar processes.  I have high expectations for myself, many of which are expectations I had for myself as an able-bodied person.  Adjusting my expectations as an ill person has been a difficult process, and something that has helped has been learning about the value of different kinds of work.