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.

Friday, March 03, 2017

While it's been a while since my last posts, not a lot has changed. I am walking without my walker, both around the house and out and about. I cannot stand in one place without holding on to something or leaning against something. That situation hasn't changed much in the past month. My neurologist decided I should have six more months of immunoglobulin infusions after I finished in February. No big deal, just got to get to The Canberra Hospital once a month to sit in a recliner for 2 hours while trying to keep my blood pressure from bottoming out. Other than that, my arthritis is getting worse, especially my hands and my right shoulder. I have to be careful not to overdo. My eyes also give me fits and frequent headaches. No cure for them except unfocusing my eyes or closing them. I went through a bit of a black spell in January which coincided with record heat, reaching 41C for a few days and in general being damn hot for weeks. I hate being bottled up in the house with the a/c on for days (or weeks) at a time.  Even though I'm housebound I like the fresh breeze blowing through the house. I haven't attempted driving yet although I think I can. I get so tired just going out on necessary jaunts that adding driving to the mix would be too much.

J came over in December for a couple of weeks and we had a nice visit. We didn't do as much as I wanted to, but my body didn't want to go out exploring as much as my head did. And I do get tired pretty easily. He's due to come over again shortly.

In the meantime I've also revived another musical interest, namely the Canadian band Rush. I loved them in the 80's and lost track when I came to Australia, since they never were big here, and never toured here.  I saw a documentary about them and then started listening to all their albums including the ones I missed in the intervening years, then watched live performances and now am off chasing trivia, looking for bootlegs and talking to other Rush fans. Unfortunately this all coincided with the band deciding to stop touring completely and perhaps retiring. They've been at it for 40+ years so I can't blame them but I am kicking myself that I never made the effort to see them play while living in Ohio in the 80's. We made a big effort to see Clapton live during those years but not much else. It's kept my interest up and got me out of my head. Their music is complicated both lyrically and musically and gives one a lot to think about. Even though they play loud and heavy rock, the songs are around concepts like free will, world politics, loss and life. I thank them for many hours of happiness.

I'm still doing fibre-y stuff. I'm still spinning that wool that I said earlier seemed to go on forever. It does, it seems. I'm also washing a 17-micron merino fleece that is seriously beautiful but seriously dirty. Getting the gunk out of it takes either a lot of pre-washing attention or post-washing combing. Also hard on the hands. I'm planning on working on a quilt if my hands and eyes cooperate. I've got one that I want to piece together after I disassembled it when the colour ran. I may even attempt to do some plain weaving since I have potentially found a way to tie up the treadles on my loom without getting on the floor. Other days I lie in bed reading or working on jigsaw puzzles on my iPad. And listening to Rush....