Sunday, January 25, 2015

right now the disease has me

Living with chronic illness, until a person finds a treatment plan that actually begins to work for them, can easily become all-consuming. Pain that never ends and deep, unrelenting fatigue can be incredible motivators, while at the same time sapping a person of all their strength and abilities, making everything take exponentially longer than it would for an able-bodied person.

An example of this in my own life is the RV. We decided to redo the interior, which for us meant stripping the carpets out, painting the cabinets and walls, redoing the sofa, installing new floors, and adding our own decorative touches. We want it to feel like a home, since we may well be living in it for an undetermined amount of time. These projects would have taken two healthy able-bodied adults about a month of weekends, two at the most.

We bought the RV back in April - mid April to be exact. J immediately got to work ripping out the carpets and taking everything off and out - and that went quickly. It was also done in April. So then we just needed to paint, lay the flooring, redo the sofas, get a bed in there, and decorate. But then the mold happened.  That was back in July. It actually took months to get that sorted out - I never updated about that, but short story is we had the mold remediated back in August. There was a lot of back and forth with the RV place we were also working with, but it eventually got done, and we were pleased with the results. This more thanks to Mold Eaters than anything, they really worked to make it happen despite all the roadblocks put up by the RV place.

So J has been working in the RV on the weekends, in between the times he is cooking food for us, or running errands, or playing with our son, or taking care of our son and the dog when I literally cannot move from the sofa from pain and/or fatigue - since August. Also in there he had to maintain our 1.5 acre property (which we do to a minimal standard, obviously) and our 2600 sf home. We are what I like to call house wealthy but cash poor - we cannot afford to pay anyone to do this work for us - we had NO idea when we bought this place what it would take to maintain it, because we had never had such a situation before. And also, we expected me to get better and be able to help.

It is now almost the end of January, and because of all of the other things on his plate, including the most relaxing of his jobs - his full time job outside our home - he has only just now finished the priming and painting of the cabinets. (Note that this included taking out all of the drawers and taking off the cabinet faces, taking off the hardware, and also returning them and putting the hardware back on.) I'm not saying this to complain or seem pitiful or get attention - this is just the fact of our lives right now - a task that seemed so easy and doable several months ago, because we just didn't know what it would mean....has taken 6 months to even begin to complete.

THAT is how chronic illness works.

I read an article in The NewYorker (online, obviously) that until the last five paragraphs, is a well-written account of what people with chronic illness go through. Actually, if you just omit those last five paragraphs altogether, it reads perfectly to me. Because those last five paragraphs are NOT my experience, and I am still desperately trying to find some semblance of functional. I don't have the privilege of 80% functionality, like the author of that piece does. If I were to put a percentage on it, I'd say on good days I'm at about 30%. On bad days it's more like 10%. On my very best days, I'd call it 45%. But in general, with the fatigue, reactivity and pain, I average about 20 - 25% of the person I used to be. I don't recognize myself most of the time.

I suppose by those standards, the disease has me.

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