Self-Care Burnout

We here of caregivers burnout, but I think some of the care related to taking care of ourselves with a disability or an illness can be quite similar.

Outsiders often just focus on the symptoms that we may deal with. On top of that though, the care aspects can be difficult too. Medications, doctors appointments, making special arrangements, treatments, etc. There are also basic care items that people without a health condition or disability do too, but are more complicated, such as bathing but having to take special care when dealing with a wound, ostomy, port, etc.

For me some of the regular things involve just managing all my medications, keeping track of everything I need and their supplies, ordering and picking them all up, counting, dealing with all the mistakes, plus all of the doctors appointments, other appointments, testing and making sure things are correct (so many medical mistakes).

There are also situations that stand out as typical more caregiving types of things. Appointments specifically to learn to administer my medications - these training sessions went on for months. Showing up to a new doctor where they had no information on me, it got lost. They new I needed a referral to have an appointment in the first place, so it clearly wasn't my fault. They were just so relieved when I showed up and I was 'with it'. I knew why I was there, I knew my med list, I knew all of my (diagnosed) conditions. Their typical patient doesn't know this and the people who accopany them might only have a partial picture.

There's the advocacy I have to do when in the hospital. I have to teach the doctors about my condition, tell them what and how much of my medication I need, bring my medication, often mix the medication up myself as few seem to know how to do that appropriately and then administer it myself. Typically a doctor or nurse takes care of these things for others who show up in the emergency room with a true medical emergency.

When I got home nursing care I had a great deal of trouble when making the billing arrangements. For whatever reason, a bill never got sent. After waiting a reasonable amount of time I figured I better contact them so it didn't end up in collections or something. They kept asking for the patient's name. I kept responding with my name. They didn't believe me. I had to make it clear - it's my hand that the needle is going into I AM the patient.

People don't seem to get how self-care can be a huge drain. It can be though when it's the typical stuff a caregiver does for someone else that aren't just basic things that everyone needs. Add onto this the extra difficulties (a normal shower often exhausts me due to my fatigue, but it's much more difficult when I have a peripherial IV in) and it can be extremely hard.

We often don't have time, energy or capability for the 'self-care' outside of these things - the type of self-care that healthy people think of as being self-care. The fun self-care, the self-care that can brighten our spirit or cares for our mental health (or when mental illness is the big issue, things that support mental health that isn't the difficult psychotherapy stuff - while a relatively small part, I didn't consider the exposure therapy I did regarding injections as being something that brought me up). This can cause burnout for us too.

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