Helping Me Help Myself
Due to my on going progression of my Dystonia it has become more then evident that if I am to retain my independance of living alone and caring for myself without the aide of a care taker in some of the most basic needs that changes were going to have to made to my home.
About 4 years ago when my shoulders and arms became involved, infact the frist day I ever spasmed in those areas was in the middle of the summer, I was so hot and couldn't cool down, I was sweating profusely from the spasming muscles. I got up to get some water and realized I couldn't reach the cabinets to get a glass down so I then thought; well ok then I'll just drink straight out of the milk jug ... not so brilliant of an idea because as I soon found out, I couldn't reach the top shelve of the frig either. My arms were digging into my rib cage at the elbows with a force beyond belief. I ended up calling a friend, crying my eyes out I asked him if he would come help me get something to drink. When my friend arrived he asked what was wrong, laughing and crying at the same time I said "I don't know, my flappers are broken" as I waved my now shorten arms about.
From this day forward, even now I keep a mug down low at all times. I can laugh about it now, but at the time it was devasting to me, I was scared and I so desperately needed water. I even tried to drink directly out of the faucet even though I know our water is not meant for human consumption but couldn't reach my mouth to that either with the totality of my spasms involved, my ST was also in full force this particular day.
Last summer I took on the task of removing all my dishes from the cabinets and made "dish drawers" out of an old 3 drawer unit that I cleaned and spruced up with a fresh coat of paint. The drawers are deep and can hold an entire set of dishes in one drawer, all my glasses and mugs in another and tubberware etc in the third. I replaced my microwave stand with this drawer unit so now my microwave also sits on top.
Recently with the help of my sister, I've had to remove all my food from the cabinets if I am to continue to feed myself ... they are now stored on a wire shelve unit.
My next project is to have someone install shut off valves on the facing of my kitchen sink cabinet so I can leave the faucet in the on postion at all times and use the shut off valves to turn on and off the water. Currently during bad shoulder and arm days my only option of rinsing my dishes is to rinse them in the bathroom sink.
Where there is a will, there is a way. Fighting to overcome the obsticles and hardships I now face in life not only keeps me strong but it keeps me going. Each and everytime I figure out a new way to overcome something I gain yet another victory under my belt. Feeling victorious is a great moral booster no matter how menial the victory is because with Dystonia even the menial victories are monumental
About 4 years ago when my shoulders and arms became involved, infact the frist day I ever spasmed in those areas was in the middle of the summer, I was so hot and couldn't cool down, I was sweating profusely from the spasming muscles. I got up to get some water and realized I couldn't reach the cabinets to get a glass down so I then thought; well ok then I'll just drink straight out of the milk jug ... not so brilliant of an idea because as I soon found out, I couldn't reach the top shelve of the frig either. My arms were digging into my rib cage at the elbows with a force beyond belief. I ended up calling a friend, crying my eyes out I asked him if he would come help me get something to drink. When my friend arrived he asked what was wrong, laughing and crying at the same time I said "I don't know, my flappers are broken" as I waved my now shorten arms about.
From this day forward, even now I keep a mug down low at all times. I can laugh about it now, but at the time it was devasting to me, I was scared and I so desperately needed water. I even tried to drink directly out of the faucet even though I know our water is not meant for human consumption but couldn't reach my mouth to that either with the totality of my spasms involved, my ST was also in full force this particular day.
Last summer I took on the task of removing all my dishes from the cabinets and made "dish drawers" out of an old 3 drawer unit that I cleaned and spruced up with a fresh coat of paint. The drawers are deep and can hold an entire set of dishes in one drawer, all my glasses and mugs in another and tubberware etc in the third. I replaced my microwave stand with this drawer unit so now my microwave also sits on top.
Recently with the help of my sister, I've had to remove all my food from the cabinets if I am to continue to feed myself ... they are now stored on a wire shelve unit.
My next project is to have someone install shut off valves on the facing of my kitchen sink cabinet so I can leave the faucet in the on postion at all times and use the shut off valves to turn on and off the water. Currently during bad shoulder and arm days my only option of rinsing my dishes is to rinse them in the bathroom sink.
Where there is a will, there is a way. Fighting to overcome the obsticles and hardships I now face in life not only keeps me strong but it keeps me going. Each and everytime I figure out a new way to overcome something I gain yet another victory under my belt. Feeling victorious is a great moral booster no matter how menial the victory is because with Dystonia even the menial victories are monumental
Tags: obsticles, overcoming
Add a Comment
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Comment by Rosemary on August 31, 2009 at 8:00pm - Yeah-- just have to keep adapting and being creative with handling the latest symptoms and circumstances. Sometimes it is more than a little scary but just go one day at a time.
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Comment by Deanna on April 18, 2009 at 9:47pm -
Robin,
Thanks for sharing. I so appreciate your openess and depth of sharing. It scares me for my own futrure, but also strengthens me when it does come to that point. Thank you for sharing with us your blog.
As my refrigerator magnet says,"Those who laugh at themselves will never cease to be amused'. Sometimes if don't we will cry, and that is ok too.
Keep moving ladies...like we have any other choice.
Deanna
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Comment by Robin Wood on July 3, 2008 at 7:26am -
Thank You Grace :)
Laughter is also contagious. It is also the only emotion my Dystonia will allow me to feel. For if I am sad, angry, perplexed etc Dystonia rears it's ugly head; it stops me in my tracks, literally and I hate being a prisoner in my own body which is why I do everything in my power to keep my Dystonia happy.
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Comment by TWISTEDJAM on July 2, 2008 at 4:38pm -
I would like to thank you for making me laugh today!
I applaud your sense of humour Robin!
When times are hard for those of us who think how can we possibly go on and in the process get so miserable and frustrated there is always someone who we can learn from.
I have been so miserable because my jerking movements are back and the pain is unbearable at times.
Upon reading your comment I realize that we have to stop taking things so seriously and try and find a sense of wit about things. I do believe that no matter how we each percieve how devasting our disorders are there is always a worse scenario.
Even in my most miserable states I do thank God that I can still walk!!!
Laughter is the best medicine and it's priceless!!!
Take good care Robin!
Hugs...
Grace:)
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Comment by Robin Wood on July 2, 2008 at 8:04am
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Thanks Trudy .... Laughter and humor just seems to put everybody at ease. I for one am very light hearted about my condition. If I run across someone that I sense is uncomfortable in my presence, specially when sitting in a doctors office and my tremors are just going to town, I just tell people "don't mind me, I have ants in my pants and can't sit still" .... it's an ice breaker and before You know it they are sitting there talking to me as if nothing was wrong.
I have tremor big time in my glutes, if You don't know anything about dystonic tremor they are rythmic in nature, meaning they go back and forth and to and fro. When these tremor start in they come in the form of what appears to be pelvic thrusts. The boys think I'm flirting with them and most just don't know what to think or look at me as if to say: "boy she needs to get a room". I get a kick out the facial expressions of others and often times wish I had a camera to capture them. This is actually one of funniest things I go thru, it takes but one person to crack some wise guy comment and soon the entire room is laughing.
Laughter is by far the best medicine, some people just don't get that and wonder how I can laugh in the face of such a horrific disorder.
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Comment by Trudy on July 1, 2008 at 12:42am -
Robin,
First let me say that I am inspired by your perseverence. I am still relatively independent compared to other's stories however, the recent loss of my car put it in a whole new perspective for me. I may one day be able to drive again but for now, I needed the money and doubt that I could have continued to drive a 5 speed since my left side is primarily effected.
On a humorous note, the day my body decided it was going to become permamently twisted before I was hospitalized and went through tests; I called my sister to come get me because I needed to get to the hospital. She arrived and by that time I looked like I had Cerebral Palsy. This was completely opposite to how I 'normally' looked and we were obviously confused. By the time we reached the hospital the spasms started. I would spasm severely for about 20 minutes with 5 minute rests between the next one started. While waiting in the lobby to be called to talk with ER, an aide offered me a drink of water. I was so tired and thirsty I couldn't wait for the water to reach my lips. No sooner did I take a sip and a spasm hit causing me to spirt the water out like a fountain. My sister and I laughed so hard. I turned to her and said, 'don't even think of wheeling me to your house to be a fountain!'
Humor that day, like most days in our life, kept my sister and I from being too afraid while also providing the much needed bond to endure the unknowns.
I thank you for your candor and the wonderful ideas you share of how to remain as independent as you live alone. I can't express how I appreciate your insights. I for now am able to get to, reach for and provide for myself however I recognize some minor changes and fear the day I may not be as able as I currently am.
Peace to you -- Trudy
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