Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Bizarre Symptoms, Mechanics, and Love
I have such a strange hodge-podge of different symptoms from my MS that I feel I need to share them. I know we all have weird things that are hard to explain or not "major" enough to contact our neurologists about, yet they are annoying just the same. There are the common things that most of us can relate to, then there are the things that seem like strange quirks. I'm having some strange quirks right now, so I want to share them in case someone else out there is having some of the same problems.
I have random itchy spots. I have itchy spots on both upper arms, a spot on my upper right chest, a few on my sides and on my mid thighs. They drive me crazy and make me itch and itch until the skin is torn up. I clipped off my nails so I could minimize the damage to my skin, but all I want to do is scratch myself bloody.
My right ear is twitchy and itchy, especially right behind it. I have to rub it every few minutes to make it calm down. I get these shocks around it and up into my hair line -- a twang and vibration that is hard to explain, yet really annoying. My little sister and I were shopping yesterday and I played with my right ear almost non-stop. Made me feel like I had a dirty ear that needed a finger in it at all times. And if I wear a hat it is worse. It intensifies the yucky feeling behind that ear and makes me dig up my hair until it looks like a tornado took off on the right side of my head.
I have facial tics that make me contort my face and make stupid faces. I know I've mentioned this before, but I find it really irritating and embarrassing. My forehead wrinkles than straightens out in quick succession, and around my nose is twitchy and likes to pinch in making me grimace (not to be confused with the guy who likes hamburgers). So I wander around in public grimacing and with my forehead working overtime -- not exactly the most attractive look.
I have trigeminal neuralgia that comes and goes. I will be good for most of the day and when I start getting tired my face starts to hurt. It is along the right side of my face into my jaw and teeth. When it is flaring up I don't want to move my face at all. I avoid talking, eating (too bad it isn't in full flare-up, I lost almost 10lbs the last time it was at full force) and anything that might touch my face, ie no makeup. Not sure if this is related to my TN or just MS in general, but I have decreased taste on the right side of my tongue. Does anyone else have that too? I wonder if it is more common than it seems -- I'm not sure I've ever read about decreased taste before. I might have and just forgot about it; my memory is not so hot some days.
I have a hard time getting my body into the correct positions in chairs. It seems like I can't remember how I am supposed to sit anymore. I shift and shift but can't find a comfortable position. I can't remember how I used to sit and it bothers me that in chairs I look like I have a poker up my wazoo. Sometimes in bed I will toss and toss trying to find the old way I used to sleep but can't find it. Somewhere along the line I lost the ability to figure out how my body used to be in repose and I'm not sure I'll ever find it again. I know that is not a major thing, but it is majorly irritating.
I could probably think of more things, but Princess had her cousin spend the night last night and they are wild and hyper this morning; distracting me with constant chatter and questions. This probably goes without saying but I'll say it anyway: I would love to hear about any strange symptoms that you have. After all misery does love company and I can't exactly send these wild girls to your house, which you should be very glad of -- they ate all the good food in the house.
I have seen a few picture galleries of close ups of electronic equipment and thought it would be neat to try some myself. They look like mini industrial cities or industrial parks. Of course I swiped, with permission, a dead motherboard from someone's laptop at work. Cool, eh?
I find the mechanical components quite fascinating, more so than the electronic parts for some reason. Perhaps because I seem to have a love/hate relationship with electricity and negative experiences with static (pun intended). Perhaps because I can never seem to remember Ohm's Law. Or perhaps because it's just one of those things I can't seem to wrap my mind around. Like time travel.
When I was first learning to drive, I was very frustrated because I just didn't "get" how cars work. And why did we only use one foot for two pedals instead of both feet?
Same thing with computers. Punch cards? Just one of those things out of place and I was destroyed for another 7 hours.
So anything more complex than a simple machine seems to be beyond my grasp. Give me a wheel, a pulley, an incline or a lever any day. They were good enough for Leonardo da Vinci. He came up with flying machines and submarines without knowledge of electricity or electronics.
Thank God that electrical things are of interest to other people and that wonderful things can come of that interest. Like lights in the night time. Radio. The internet.
Of course, electricity powers our bodies, though to a lesser degree. It is no less important. Without electricity in our bodies, we'd have no thoughts, heartbeats, or life as we know and enjoy it. For those of us with MS, we need stronger and more resistant insulation to cover the nerves that conduct that electricity.
Power companies have to spend money to maintain power lines, poles, transformers and the billions of other parts that keep us in the light. As MSers, we have to try to maintain our infrastructure as well, through diet, exercise, and mental stimulation. Some of us take medications that, like the power company linesmen, try to prevent power outages and maintain the system.
My dad is a retired electrical engineer. He understands all that electrical stuff that I don't. When I was five he took us for a drive to the construction site of a transformer to show us what he did for work. It wasn't until I was 16 or 17 that I finally understood what he did. I've been to a few of the other project sites that he worked on and while I found the experiences interesting, to be honest it was the mechanics of everything that I found most fascinating. Hydro-electric site? Never mind the electricity the water would generate, I wondered how the water tanks got full, how the dams opened and closed. Looking at the electrical plans for different buildings I wondered more about the blue ink used to print the plans or the different symbols on the paper. Sorry, Dad. I am amazed that human beings have figured out how to harness various sources and turn them into electricity; I just have a mental block when it comes to understanding how it works. I just know and trust that it does.
I also know and trust that there are people who understand the mechanics and electronics of the brain. They are the people we MSers are counting on to fix our power bumps.
Today would have been my grandfather's birthday. And though he's been dead a number of years, I think about him everyday - or at least every time I drive a car or open a locked door.
He was always free with advice and he often reminded his grandchildren to "not be a key turner."
My grandfather lived on the same street for most of the years I was growing up. He did his best to make sure I wasn't a key turner.
A key turner is a person who knows how to jump in the car, turn the key and go. A key turner does not know what to do when the oil light flashes, how to fill a gas tank, change a tire or what transmission fluid smells like. A key turner would never look at the drippings in the driveway and conclude something might be leaking.
You can bet I knew a lot about what was under the hood of my car when I first began driving. I knew that turning a key was just a tiny part of the process of making a car go from one place to another. I knew that knowledge and maintenance contributes to successful driving.
That key-turning business applies to more then cars, of course.
It applies to all things mechanical. I knew how to oil my sewing machine and keep my bike running. He made sure I could do minor repairs and maintenance on the washer, dryer, dishwasher, stove and lawnmower
The key-turner philosophy also applies to a person individually. It is up to you to know as much about you as possible and become your best advocate.
Just like your driving habits may mean your car never gets the miles per hour promised on a sticker label , your multiple sclerosis may differ from your neigbhor's MS. You may never need a wheelchair, you might need one a year after you are diagnosed. You may be able to keep working when someone else can't. You might only read, not experience, the Lhermitte's Sign's flash of electricity along your back..
Remembering that "your mileage may vary" helps me speak up when a doctor tries to prescribe a drug I know won't chase an infection away even if "it works for everyone else."
Being everybody else never was a goal in my family.
When it was diagnosed that Herrad had MS and as it became obvious it was going to be really shitty people started asking Herrad about me. “Is he going to leave you?”
Funny till that point it had not occurred to me that I could. I could not see why I should want to. Herrad and I are a partnership. MS was happening to us. At first I was a bit shocked. How dare people even think I would shit on the love of my life just because things get rough? I would expect Herrad to care for me in similar circumstances. My Dad didn’t get on his bike when my Mum got cancer. He nursed her through the painful last days of her life. He and I may not have always got on but that is something I love him for- he loved my Mum.
I started to read blogs and chat rooms about MS and then found the reason for the questions: lots of men run when it starts getting nasty.
I was a failed comedian with no job, house or visible means of support when we got together. I guess I didn’t fall into the “most eligible” category. Many of Herrad’s friends are middle class. Not every one thought Herrad was very wise to get involved with me. They have known men from their background who bottle it. Cut and run in the cruelest most selfish manner. “Good men”- lawyers, business men and the like. So OK it would not be too strange for a scruffy geezer like me to sneak off- I screwed most things up- why should this be different?
So I decided it was amusing when Herrad’s aunty Sigrid called from Canada every month and asked if I was leaving. She wanted to be re-assured because she had talked to people with experience of this disease and many of them were dumped by their partners.
I am going nowhere without my Herrad. Sigrid now thinks I am quite a guy. She sends me her love now and asks what I am cooking for dinner. If anyone else thinks I am not good enough for Herrad they can stick their opinion where the sun don’t shine. The rank is but the Guineas stamp, the mans the gold for all that.
It is not easy dealing with the hard stuff but I would not to hide. I chose right and I salute all you men and women who have made the same choice as me. Let love rule.
Let Love Rule!!! What a great philosophy.
This concludes the 30th edition of the
Carnival.
The next
Carnival of MS Bloggers will be hosted here on March 12, 2009. Please remember to submit a post (via
email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Monday, March 10, 2009.
Thank you.
Comments for this post.
On the positive side, we're going to Newport News, VA for two days. We are going to spend one entire day at the Mariner's Museum. This will be one of my highlights as I love sailing ships of any kind, especially the ones from the 1600's. We will be visiting a few other museums in the area...and there is a Trader Joe's in Newport News! I love Trader Joe's, but there isn't one anywhere near where we live. When we lived in Tucson, we went there at least once a month.
