I have by no means kept my multiple sclerosis a secret. What I normally do not talk about is all the curve balls it has thrown my way over the years. After talking with several newly diagnosed with Multiple Sclerosis I feel that maybe it is time I openly talk about my life with MS.
Please remember that MS affects us all differently and no one will have the same complications. What I would like to do is tell you how MS has affected me and what I have done to help overcome these trials and tribulations.
I am one of those that poses a problem to the medical profession. I have had an allergic reaction to the MS drugs and then my body is immune to the pain pills. Taking vicadin and oxy is the same as popping a tic tac.
Sleep is something that I no longer can even remember. I no longer can sleep all night which is why I am able to write as much as I do. I try to take naps during the day but that is almost impossible because of the pain. I have a ten year old daughter and most days I need my wits (what I have left) about me. There have been days though where as soon as I put her on the bus I take half a dose and sleep through the morning. That seems to happen a lot lately but by the time she comes home from school I am ready to tackle homework and any after school function she has that day.
So I have already touched on the subject of pain but didn’t really go in depth about it. There are some days that the pain is so bad I literally cant walk. I have found that at night (thanks to a fellow MS’er) that a fan blowing on your feet helps. As corny as it may sound it really does help. I have a pedestal fan at the foot of our bed. Also for some reason a bar of soap under the covers by my feet also helps.
Let’s not forget about the dreaded headaches. They can bring you to your knees at times. There have been times when it takes days before I can find some relief. Botox helps with the ice pick headaches. Also, I’m not sure what the name is but it is the patches you use on children to help with high fevers but they are my best friend. I rip those open and stick then on my forehead and neck. They stay cool for a good length of time.
I am one of the lucky patients (note heavy sarcasm) that has a 7mm lesion right on the occipital horn. As there aren’t many known patients with a lesion where mine is the neurologist isn’t sure what all we can expect. I do know that my latest complication they are blaming on the lesion is a completely numb tongue as well as loss of taste. Now with my cooking the way that it is loss of taste isn’t so bad. My family probably wishes they had the same problem at times.
The worst problem about a numb tongue is I can no longer tell if something is hot until it hits my throat. I have scalded myself enough times to where I use a meat thermometer to test my coffee and make sure I won’t burn my throat any more.
One of the first sensations MS took from me is my hands and the ability to feel. It has taken me a while to get used to typing all over again but I have finally gotten the hang of it with the touch screens, etc. It also helps that I know where all the letters are at on the keyboard. I like to lay back in the bed and let all my characters talk to me while I write. My husband still finds it strange how I can type and not look at the screen. Now I cant promise that there wont be a whole bunch of errors when I am done, but those are correctable.
I have become good friends with another MS sufferer and she asked about complete loss of feeling in my legs. I have ebb dealing with this for at least 2 years now. I know I am walking because my legs are moving but I can’t feel my feet. This is one of the main reasons I can no longer where my heels. I basically live in flip flops and tennis shoes. One of these days though I will be one styling woman in a wheelchair (if it ever does come to that).
I no longer walk anywhere barefoot. Since I can’t feel on the bottom of my soles I no longer can tell if I stepped on something. Walking barefoot wouldn’t be a problem if I didn’t drop just about everything I put in my hands. I have found out the hard way you can actually shatter a plastic cup.
I have however found one brand of shoes that I can wear without great difficulty. Aerosoles has a pair of boots with a soft (low) heel that I can walk in. They also have a semi high heel pump that has a wider bottom that helps me keep my balance.
Just the other day one of my neighbors from down the road stopped by and asked why I hadn’t been decorating my yard lately. I had to explain to him that Mat and the ER doctor both felt that it was safer to take away my ladder and staple gun. They even took away my Dremel tool. 😦
Two years ago I was putting up lights around the yard and tripped. Unfortunately I fell on the lights. It took the ER doctor a while to dig out all the glass and stitch it up. Before the stitches could come out I had another minor mishap with the lights. That was also the year a small tornado came through and picked up most of the decorations. I was kindly informed they didn’t need to be replaced. I do miss decorating for the holidays but hate when it comes to picking up the decorations.
I will stop here for tonight but will continue this conversation. If anyone has a question they want to ask you can send me a private email through my website http://www.maryreasontheriot.com.