Saturday, August 29, 2015

Coping with Serious Illness and Disability

I am finding I need more sleep now than before and that my muscles are less uncomfortable when I just let myself sleep during the day as much as necessary. Last week a part of me still felt as though I'd wake up one day and this disease would be better and that I would just get up and go for a walk around the neighborhood. The stark reality of the situation started to really sink in toward the end of the week when I tried walking a little more inside the house and landed back in the same stiffness and constant droning ache as I felt on Monday when leaving the pulmonologist's office. 

My Sarcoidosis caused some mobility problems but mostly just when I was on my feet or walking longer distances. This experience of seizing up and losing strength when I walk to another room in the house is new to me and is requiring alot of adjustment. I had to get the power chair that I got donated from a non-profit organization fixed, and at first the repair company thought it was just the batteries needing to be replaced, but now they think it's the motor. These used ones are good to have in a pinch but are kind of precarious because you never know how long they were used and how much longer they'll last. If it's the motor that could be quite expensive, and they say it might end up being so expensive I might as well get a new power chair. They brought me a loaner while they're doing a diagnostic on mine at their shop. This loaner is a Hoveround 

which drives a little differently because it has front wheel drive and that gives it somewhat of a drift that I have to compensate for. I was doing pretty well maneuvering, considering; getting back and forth to the kitchen to get food and drink, to and from the mailbox, etc. and then tonight I ripped a chunk of veneer off the door to the kitchen as I was coming out into the other room (because there is really only 2 inches clearance in that doorway) and the same is true of a few other doorways in the house; both bathrooms' doorways are actually too narrow. For those I need to transfer to a small rolling chair normally used as an office chair to get through them. I managed to take some of the epoxy I use for jewelry-making and splint the piece back onto the inside of the kitchen door by binding it tightly together with two of the cords I use as pull cords for my doors. These doors are hollow so will probably need to be replaced eventually, but hopefully this will hold together until I can have all the necessary modifications made.

I'm becoming increasingly aware of everything in my house that needs modification. It's a ranch style house and is not bad in terms of accessibility, but the doorways and cupboards are the main deficits, and I'll probably need a ramp leading to the garage and top of the driveway where vehicles usually pick me up and some modification to the area where that door is so it's not such a tight space to turn around in. The non-profit agency that had the ramp installed at my front door was going to help with doorway and other modifications but never got back to me. I'm going to have to get back in touch with them to see whether they can still do the rest. I'm not sure if the man I was dealing with is still working there or not but he was very good because he himself was in a wheelchair and understood these problems.

If I do need a new wheelchair then I might be able to get it through Medicare now that I also need to use it indoors but apparently that won't help me right now because there's about a 6 month waiting period (I guess because of all the claims to be processed because so many people need them).

I put these pull cords on some of the doors so that I can close them behind me.

Talk about DIY, LOL, these were originally supposed to be Brock Strings for a contract I had hoped to get with a vision rehabilitation clinic several years ago, but fell through. It's a good thing I'm hesitant to throw things away because they are really coming in handy right now at a very crucial time.

Tonight while getting some ice from the freezer I found that my left arm has gotten quite a bit weaker. I could barely hold the glass full of ice and had to transfer it to my right hand. This is worrisome because right now I have to rely almost entirely upon upper body strength. I know there must be assistive things that people use who cannot use both lower and upper body, but I don't yet know what they are or whether I can get them due to cost or availability. I am determined to stay in my own home no matter what. I will have to do a search for companies that sell such devices and items to help people with mobility problems. One thing I have been needing for awhile is a C table on wheels for my laptop and as a work surface over the bed. I find that it intensifies the muscle tension if I rest it on my legs, so I need it to be high enough (or adjustable to be high enough) so that it puts no pressure on my legs.

Also, I want to make some more hoop earrings for my Etsy shop since they seemed to be the most consistent sellers before, and I need to do this soon before I no longer have the arm strength. Right now my right arm is still in pretty good shape, but I don't know how long that will last. Both hips are involved, the left more than the right, so positioning can be difficult so as not to trigger the tensing that's been going on and ends up as pain even from the pressure on my butt when sitting. It's a long time until October 8th when I see the neurologist, but this disease process isn't waiting, so I need to be prepared for whatever comes.

It's been more difficult for awhile now for me to do things like thread a needle for beadweaving. Although I can do it, it takes much longer. At first I thought it was my vision but doing it with magnification didn't make it better and I realized it was my fine motor coordination.

Carmella was a little nervous the first few days I had to use the wheelchair indoors, but is gradually adjusting, learning not to take advantage of when I open the door by galloping out uninvited. She senses that something is wrong, sniffing and licking my legs and sort of hovering around me when I'm in the kitchen.

Before my old laptop went on the fritz I had bought a program called Kindle Publishing Pro in order to write a book (and maybe some shorter things) that I could market on Amazon, but that got corrupted and wiped out the first chapter and part of chapter 2. I am not sure how to download the program again, but I think what I will do this time is write it in Microsoft Word and then try to get the Kindle program downloaded again and copy and paste it from Word into Kindle Publishing Pro, so it will autoformat for Kindle. Once I get this completed this is something I can sell to help with out of pocket expenses and (if it generates enough income) maybe also to help my son after his surgery. I hope that my experience will be helpful to others going through similar challenges.

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