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.