Friday, June 30, 2017

In a day, it will be ten years since I lost my soulmate and one true love. I still miss him every day but I have also adjusted to living alone. I don't like it. I'm lonely, even when talking to J for an hour or more every day. His visits are precious but can't compare to having company daily. He waits on me hand and foot when he's here, when normally getting up for a glass of tea would be a major effort.

I've been struggling lately and I don't know which of my various ailments is dragging me down the worst. I'm not depressed as much as worn out. I am extremely tired all the time and even the simplest activities wear me down to the point where I either can't get out of bed or I just sit and stare. I broke my left shoulder on Easter weekend and that was the most painful thing I think I've experienced. I fell opening the fridge door and landed right on the point of my shoulder. They say bone pain is worst and I can agree. I was in a sling for about a month and am now working on range of motion. That hurt like hell to begin with but now isn't too bad. Tuesday I get more physio with no doubt more painful exercises. The pain went all the way down my arm (I broke my humerus in two places) and into my forearm, wrist and hand. The left hand and wrist are where the worst arthritis is. Not having a left arm made my balance even worse. I had to hold onto everything I could. I've fallen repeatedly and the ambos are very nice even if I get a horrendous bill for it (covered by insurance). With weak knees and shoulders there's no way I can haul myself up. I wear a medic alert button and the service also calls D who gets here quickly enough to get the door open and the lights on for the ambos. It's been better for my balance to be out of the sling but the left arm is still weak and sore, so I can't rely on it for holding me up. I can still walk short distances but the moment I stop, I'm very unsteady. I went back to my neurologist to ask him why I have seen no improvement in my symptoms since February. I still can't move my toes, for example. He wants me to finish this last round of IVIG (only two more left) and then go off it for three months to see what happens. This is sound treatment from what I read. (BTW, the Facebook CIDP group is a great source of information for any of you Facebook haters. If you have a rare disease, how can you contact others like you?) He also said there is a possibility that this is as good as it gets. It's all in those toes that I need for balance. I read about "improvement" for patients but "cure" is another matter. I am trying to get my head around being in a wheelchair for going out. (I've bought one but it hasn't been delivered yet.) I can walk, but the instant I stop, I'm in real danger of falling which would mean calling an ambulance. I haven't been out to shop anywhere except going to the chemist in a year. My knees are always weak and I've also buckled under and ordered an electric lift chair/recliner. I have a 2-seater recliner but my legs are too weak to push the recliner extension back into place.

Right now, my unsteadiness makes everything an obstacle to overcome. Getting laundry out of the washer, feeding the cats, microwaving dinner and getting it to the table. I get groceries delivered. I am currently unable to spin or knit because I can't hold my left arm up for long periods of time, but I'm improving. Even typing is hard (one time when predictive text is a godsend).  I sleep a lot, read a fair bit, geek over Rush, watch TV (either DVDs, Foxtel, or Netflix). My fur babies are a source of affection, annoyance and beauty. The Imp loves to sleep on my shoulder as much as she can. Max has learned the pleasures of sitting in my lap, although the Imp boots him off if she wants it. Max still squeaks a lot or howls when he's feeling lonely.

J is due to return in September. His earlier planned visit got postponed due to work but he got here right after I broke my shoulder which is when I needed it the most. As usual I would love company but the house is a mess. I keep it clean through my cleaner angel but clutter is hard to manage when moving around the house is dangerous. The garden is a shambles but maybe by next summer I'll be able to stick a few plants in the ground. Thank goodness I got all major renovations done before this.

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