Adapting our home

This is a big topic. It's also one that every disabled person I know struggles with. How to make your home work with you rather than against you.

Come to think of it, this isn't just a problem disabled people have. Anyone with a new baby, new partner, new hobby or hell! Just a life change has this issue. Our homes are living things. They need to constantly change to work better for our needs. I know my home now looks nothing like it did when my son was young and in school. Our needs were completely different then.

I've personally always loved changing my house to fit me. My husband on the other hand doesn't just dislike it... he HATES it. Though he does almost always enjoy the results. His reluctance and my chronic impulsiveness have a beautiful way of meeting in the middle to create our unique, well loved home.

Smartly when we had our floors replaced the last time we went with a hardwood without threshold molding between rooms. Just smooth easy rolling. This was before I was even disabled. I just liked the look. I love it when things work out that way.

Unfortunately our home was built in 1957 and you can tell. The bathroom is a closet and the doorways into each room are miniscule. Our home is what my mom calls is "Not disabled friendly at all!" But we're working on that.

During 2021 we had a beautiful stone ramp put in the front of our house. It even has it's own light. We made the front of our house disabled friendly and beautiful. Sadly, it also cost a butt ton of money. As does any remodel. Currently we're doing another one on the cheap.

This time we're changing our dining room and living room. I'm planning for a future when I may no longer be able to walk through our house and might need to use my chair. It also works out that my husband has a bigger office space, given he still works from home almost all the time.

So phase 1 in this new project was to move my husband's tiny office out of the living room and into our old dining room. This would allow him to purchase an electric standing desk and have about double the amount of space he had before.

After that we had some shelving professionally installed. This became the future "disabled kitchen" where I could keep everything I need to help myself. My protein bars, some fruit, a coffee bar, mini fridge with my vitamin drinks, my cups with lids. All that kind of thing. For now it's a bit of a hybrid. But we can easily change what's on the shelves if need be. It also cleared up some counter space in our tiny galley kitchen.

That was Phase 1 and it's pretty much done. Phase 2 will be to re-arrange our livingroom to make it easier to get my chair in and out of the front door. Also I can use my chair in the livingroom if I want with the new arrangement.

All of this has caused a big purge for us. That's not a bad thing. We're making space for the things we love and need and letting go of possessions that no longer serve us. Something my husband finds more difficult than I do, but he's been a champion.

I'm excited to make our home work better for us. And for our family and company! 

Where's My Instruction Manual?

I wish I had an instruction manual that came with my illness. "When you start to feel so dizzy you might pass out, don't panic! It's just a migraine. Go to bed and it will pass." That kind of thing. Instead I feel like each thing my body does is new and scary and I have no idea what to expect from one moment to the next. Which in turn makes it incredibly challenging to plan my future.

Maybe the manual would say "In 5-8 years you will no longer be able to care for yourself, so prepare in advance for that mentally and financially." Or "In two years you will need assistance to bathe." That way I could plan for an ADA bathroom remodel.

Or how about "In 2 years you will require a feeding tube." So I would know to really enjoy every bit of food now. Or even "By fall 2020 your condition will be stable, expect no further deterioration of muscle use."

I wish the manual would have told me that I would only have my dream job for one year before my symptoms became too much for me to work. I also wish I would have known that I wouldn't qualify for any kind of financial help from the government because I'm married to a person with a good job. "You will be financially dependent on others due to your illness..." I wish I could have prepared for that.

The hardest thing about my chronic illness is having no idea what's around each corner. Or how long I'm doing something maybe for the last time.

This weekend I tried to change our porch light myself. Something I've done many times over in the past and I just couldn't. I asked my husband for help and of course he sweetly came out and did it. But trying and then not being able to do it was very upsetting to me. I think not knowing that something is the last time I am going to be able to do it makes the first time I can't that much harder. 

But life is just that way. For all of us. Nothing is permanent and the whole concept of permanence is an illusion. None of us ever really knows the last time we will do anything. 

That's also what makes life sweet. I must relish each moment as I'm in it rather than rush from one thing to the next. Savor each meal, each kiss, each time I can shower independently. Because I don't have a manual. I'm blindly stumbling through life just doing my best.