Most days I can force myself to ignore my arthritis. The problem is that arthritis doesn’t like being ignored. I’ll take aspirin or ibuprofen during the day and before going to bed. Usually I can count on at least a couple hours of sleep before I wake up again. On bad nights I will wake up and the joints feel like they are going to burst into flames. After a bad night I can guarantee that the next day I’ll barely be able to move because of the pain. “Arthur” and I have a definite adversarial relationship. I refuse to be slowed down completely and it refuses to be ignored. This is the story of our battle.
KosAbility is a community diary series posted at 5 PM ET every Sunday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Arthritis was prevalent on both sides of my family. I was caregiver for my Mom and towards the end of her life her joints were so deformed from the arthritis that she had trouble opening things or using a pen. One of her hips was constantly swollen and she had trouble walking. I first noticed the stiffness in my joints during my twenties. I ignored the stiffness for the most part or took a couple aspirin if it got too irritating. I went ahead and jogged and exercised going for the burn. I skied. There was nothing like the sensation of zipping down the pristine snow with the cold stinging your face. I got interested in yoga. My Mom was amazed at the positions that I could get myself into.
From the moment my second grade teacher wrote on my report card “take a look at her art” I was an artist. I was always fascinated by pen and ink drawings and once was asked to do the cover of a book on dahlias to benefit the United Way campaign at the bank where I was working. That type of intricate drawing could take up to 20 hours of work or sometimes more for a single piece. I also loved working with pastels and acrylics and often gave paintings as Christmas gifts. I hand made my Christmas cards with pen and ink drawings. I got interested in jewelry making and mother frequently had me make jewelry as gifts for her friends. She also had me make beaded sculptures and stitchery for herself and her friends.
I love to cook and am writing a cookbook. I am formatting and editing my cookbook now and it has over 300 original recipes. We didn’t have fancy equipment when I was growing up and when cooking at home much of what I used was cheap knife sets and heavy Pyrex bowls. It didn’t matter to me because the joy was in creating new dishes.
I always hit the floor running and I was on the go from morning until the early hours of the next morning. I worked and eventually ran science fiction conventions. I was part of role-playing detective games that were physically very active. I walked and ran and skied. My hectic active lifestyle started to takes its toll. Eventually doctors confirmed that I had arthritis in every joint in my body and all up and down my spine. I had pushed my body to its limit and the sports and constant use of my hands caught up with me. I could no longer do everything that I did when I was younger. I couldn’t hold a pen and do intricate drawings for hours on end. I couldn’t sit down and write for hours using my favorite pen and yellow tablets. I couldn’t run. My hands cramped up when I was cutting vegetables. My sleep became disturbed because the pain would wake me up several times a night.
Once I got the arthritis diagnosis I became determined to see what I could do to live with it and not give up what I loved doing. I studied arthritis. I found out that there are many different types of arthritis and that it can hit at any age. I also found out that being stubborn was a good trait to have with arthritis because I was determined to continue to live my life doing the things I loved.
Since holding a pen or paintbrush wasn’t a real option any more I determined to explore the growing field of computer art. I started doing computer art in 1998. The original models were clunky at best but I was still able to do award winning pictures. They sold well at conventions. Lately the state of the art has increased dramatically and I am redoing all my old art. I have continued doing computer generated art to this day because I can use an ergonomic mouse to create it with. I was not ever going to give up my art. I had been an artist all my life and I had to continue doing my art. It is a part of my soul.
In the kitchen I discovered a company called Oxo. Their motto is “tools you can hold onto.” I replaced most of my kitchen knives, spoons, etc. with their products. They have thick and cushioned handles that I can grip easily. I have a food processor and stand mixer. These help me mix and even knead bread. I have a mandolin to slice and julienne vegetables. I learned to use tools to make cooking easier. The long handled tongs Oxo makes get a double use as I can use them to pick up things that have fallen on the floor behind my bookcases. I have small collectibles and an overly curious and not always graceful Pixie cat. Rather then pulling a heavy bookcase out I use the tongs to reach behind and get the items.
I discovered the ease of using the computer for my writing. I have an ergonomic keyboard and beaded wrist rests for my keyboard and mouse that makes it easier to type. I transferred all my writings, recipes, and poetry to the computer. The computer has been a life, wrist and hand saver.
I used to make all my own clothes. I did countless hours of craftwork. I did stitchery, knitting, crocheting, needlepoint, bead work, etc. I got myself a Brother sewing machine and still sew. I made my niece’s wedding dress. She had always wanted a Princess Bride dress and that is what I made her along with the veil and the silk flower bouquets. I made her an Arwen dress for Halloween the year they did Lord of the Rings. They do a theme each year and the photos went on ties for her Dad and mugs for me. I knit a six-foot long scarf for the year they did Doctor Who. I use a needle threader to thread my needles now. I use slightly larger needles that are easier to hold. If I pace myself I can still do stitchery.
I have expanded my jewelry making and make good use of precision pliers and tweezers. I use the nylon thread instead of the cotton thread since I can put the beads directly on it rather then trying to thread a needle.
I don’t ski or run any more but I walk a great deal. I take my camera with me and use those walks to photograph nature. I had always been fond of taking pictures but with a new lightweight digital camera I have turned into a real photographer. I don’t have to thread film in the camera and can just plug the camera into my computer and get my pictures that way.
I do the more gentle exercises now like Tai Chi. The gentle exercise plus walking helps to keep the joints as flexible as they can be. I’ll use warm wraps when the joints get sore. I have the nature filled kind that can be warmed in the microwave and wrapped around whatever part is hurting. I use Tiger Balm on the sore parts and it really helps.
I remain a tomboy to this day and my clothes now that I have retired have reverted to leggings and t-shirts, many of them with Marvin the Martian, geek images, or cats on them. I generally wear moccasins when I go out. Around the house I rarely wear shoes and prefer to walk around in my stocking feet.
So Arthur and I are not exactly friends but we coexist with each other. I use tools to help open things. I walk instead of run. I gently stretch instead of going for the burn. I use the computer for everything. I may not be able to move as fast as my teenage grandniece and grandnephews but they are good at slowing down to accommodate my slower movements. Most important of all I refuse to give up doing the things I love. I was born an artist and I will always be one. I love crafts and for Christmas I made sock monkeys and yarn octopi for my family. I bake up a storm every Christmas. I frequently have the family over for meals. I did a St. Patrick’s Day Irish themed meal for the last two years. I do my niece’s birthday because it is the only way she can get Bulgogi.
The most important thing to remember about arthritis is that there are things that can make life easier. Don’t be ashamed to use them. Use the thicker pens and pencils to write. Use something that attaches to your keys so it is easier to hold them. Sit on a stool to cook. Use the convenience appliances to make it easier to cook. Use the luggage with wheels. Get a wheeled cart and put things on it to move them from room to room. Use long handled brooms and mops so you don’t have to bend. Do gentle exercises. Realize you won’t have the strength you used to and be aware when you are starting to get fatigued. It is okay to rest. Most important of all don’t be ashamed to ask for help.
Severe arthritis like mine can cause depression. You need to be aware of that. Yes there are days when I get angry that I can no longer do everything I used to be able to do. It is hard to not be able to go from morning to night like I used to do. There are times when I want to scream “why me?” I get weary of the pain. I hate waking up and knowing that I’ll be dealing with pain the entire day. I hate that my sleep gets interrupted because the medicine wears off and I hurt. It is okay to take antidepressants. It is okay to find a therapist to talk to about depression. I try to keep a positive mental attitude. I have two sets of pictures with sayings on my refrigerator that helps me keep going. One is “You can climb any mountain if you take it one step at a time.” The other is “There will be good days and bad days. Be gentle with yourself on the bad days.”
In spite of the arthritis I refuse to give up everything I love. That is the most important thing I want to emphasize. Don’t give up. There are ways to work around arthritis. You can learn to deal with the constant pain. When I am really busy the pain recedes into the background. Do things for you. Get an MP3 player and put on your favorite music. Lose yourself in a good book. Watch a movie or TV show. You must take care of you. It is okay to ask for help. You are still you in spite of the arthritis. I may sound like a bowl of Rice Krispies when I move but hey I can still snap, crackle, and pop with the best of them.
You can climb any mountain if you take it one step at a time.
There will be good days and bad day. Be gentle with yourself on bad days.
Berni in her Arwen dress.
Berni on her wedding day in her Princess Bride dress with her late Dad.
Tristen is wearing the six foot long scarf knitted from an authentic pattern for the scarf worn by Tom Baker on the show Doctor Who.
The family’s sock monkeys.
The dahlia etching.
The major reason I refuse to give into arthritis. I cannot give up my art. Playing Catch.
postmodernista is the moderator of the KosAbility series, and keeps the schedule. If you'd like to volunteer to write a diary, please message me or let us know in the comments. At this time, April 14 will be Jane in Maine writing about disabilities and relationships. All other April dates are open. I've been unexpectedly detained away from my internet connection by a travel delay; I'll check in as soon as possible to fill up the calendar with all you folks who'd like to share your story!