One of the most difficult things for me is to relinquish control of the intimate parts of my life to others – even others that love me.

Because of the extent of my disability and how the apartment laundry is set up, someone else washes my underthings. I don’t like that. Where is my privacy? I need to feel like I have personal boundaries, but I don’t. I feel I lost those and privacy during the hospitalization. I never got them back. Because people need to help so much, it feels like there is no longer a boundary between me and the rest of the world. That feels unsafe.

I am still physically limited due to my lungs and complex nerve damage, among other things, but I can do more for myself than I could about 5 years ago. I had to learn to scoot, then relearn to walk only to figure out I’m not able to. I’ve talked about how much of a shock that is and how it deeply grieves me. I asked the question – is this what I survived for? Even still, I sometimes feel hopeful especially with each new hurdle overcome, when I regain a measure of independence, or when I find a way to give myself a little more privacy. Two years ago I couldn’t put my own socks on. A year ago I required help putting my shoes on. I can tell you, my feelings of helplessness are quite strong.

Recently I ordered a cordless vacuum stick so I can vacuum spills when I’m the only one here. I got the cordless vacuum because it’s light and I can use it while in the wheelchair. I have issues with dexterity which means stuff ends up on the floor quite often. Several weeks ago I was using a reacher for a 2lb container of oatmeal on the 3rd shelf in the cabinet. Long story short, it fell and oatmeal went everywhere, including on top of my head. My hair was still wet from washing. Well, I had to call someone to come help. That’s not been my only disaster. There was a rice fiasco, too. LOL.

At least with a cordless hand option or using it full size, I can better clean up after incidents like that. I was thinking of being able to also clean up soil from when I’m replanting or working in the frog tanks. It never fails, when I work with the frogs I get leaves or whatever on the floor.

I was trying to schedule potentially messy projects close to when a caregiver was coming. Now I can schedule certain things according to my time not that of others. I even wait to eat a real meal because if I drop a jar and it breaks or a bowl of something, I’m screwed. I constantly worry about making a mess that has to stay there until I’m rescued by a caregiver.

I chose to have care 3 days a week with daily prompts because I need the other days for healing and rest. I can’t heal emotionally with someone in my face all the time. Leroy and Snow call me every morning to take meds. I text them 2 other times during the day to say I took meds and the shot. There are ADL prompts, hydration prompts as well as a few others that primarily take place on care days when they are physically present. The new care arrangement has worked well. Now, I actually have time to heal.

I’m looking forward to the bit of independence a little cordless stick vac will bring. A little blue vac has given me a little bit of hope.



How I love this thing. It’s so helpful and easy to use with one hand while in a sitting position. My O”Cedar mop is easy for me to handle, too. Honestly, I like cleaning my own home.

No need to feel nervous, comment if you'd like.