girlpower lives in the Pacific Northwest. She's an author, a blogger and lives with a man that builds cigar box guitars.
GIrlpower on a Good day
Living with Multiple Sclerosis
The worst part of MS for me is the fatigue and how common activities can make you very tired. I must take a 2 hr nap every day or I get frustrated and then I'm not a happy camper. Having positive people around you is a must. Get rid of anyone in your life that is negative or toxic, as they will drag you down. You have to be your top priority now. And for many women who have always put other people first and have been the caretaker to children or parents, you have to adjust your activities and the amount of psychic energy you give to other people. You have to save enough of your energy for yourself.
Eating right is of course part of keeping your body and spirit well, and getting exercise is a must. No matter how you feel in the morning you have to get up and get active. For me the time I feel most tired is in the morning before I get up. Have lists of things, pleasant things that you will do each day to give yourself something to look forward to.
I find swimming is the best way to stretch and relax, but remember heat is not your friend so no hot tub. People with MS can not process heat like regular people so when its hot outside limit your outside time to 1 hour. I bring a cooler filled with cold water, drinks, cloths i can wet and wipe myself down, and ice packs that i postion inside my clothing. They actually make vests in which you place ice packs, much like fishing vests with tiny pockets.Some of them have a tiny cooler that attaches to a vest with tiny tubing throughout that circulates cool water around to your whole trunk.
Having MS is not a death sentence, people with MS have normal life expectancies. So just chill out and try to find how you can live with it. If your MS is limiting your ability to work the first thing you should do is apply for social security. The process of getting all the documents you need, like letters from your doctor, and health records is very important as many people get denied once or twice or even three times before getting it. I think in my case I got mine the first try because I had a high level of pay in , in my work record. Perhaps it made it easier for them to give me social security disability as I had worked since I was 15 and my work fund was full.
Find yourself positive people to hang out with, find a good neurologist as you will have a long relationship with them. And breathe, breathe and know that you are not alone. Go online and find websites like MS WORLD, or MS society national and state offices. There are chat rooms and message boards. If you don't want to use your real name when you sign up, get creative and pick a new identity for yourself. Keep aware of the numerous research agencies and institutions that are discovering cutting edge treatments and medications for MS every day.
You are a child of the universe, a one and only spirit who is unique as the stars above us.
Girlpower on a Rest Day
'Lean on Me" by Nancy Davis a Great Book to have
This is the first book you should buy called "Lean on Me" by Nancy Davis.
The author, the founder of the Center Without Walls (a medical research foundation), has written an inspirational book for anyone with multiple sclerosis (MS). When she was a mother of three small children, she was diagnosed with MS at the age of 33. Her neurologist told her to go home and "go to bed... forever." Determined to have an active life, Davis developed a program to live as fully as possible. First, she ditched a troubled marriage and surrounded herself only with people who would support her emotionally. She learned as much as she could about MS, working her way through the maze of medical information and misinformation to find which physicians and treatments would be the most help. In order to remain positive, avoid stress and commit to a healthy diet, she explored alternative approaches (among others, Davis has found homeopathy, acupuncture, and osteopathy to be useful for her condition). Davis provides readers with an informed overview of how to negotiate the health-care system as well as Web resources. Today, remarried with two more children, the author, an MS activist, has devised a thoughtful plan for dealing with a devastating illness that should motivate others.
New to Multiple Sclerosis?
So you just were told you have Multiple Sclerosis, first thing is to take a big breath. MS is something you can live with and by changing a few things you can resume your life. After the initial shock of finding out you have MS, you should feel relief as I did in finding out what is wrong with you. All the weird body sensations, the balance problems or the tripping or repeatedly spraining your ankle will finally be given an explanation.
Every person who has multiple sclerosis is their own unique case. Everyone experiences different symptoms and there are may types of MS progressive or relapsing or remitting to name a few. Each person will experience their own set of symptoms. Some people have problems with their vision. Most of us feel unexplained fatigue. Welcome to the world of MS. But you have a chance to learn about your specific type of MS and learn how to work around it and continue your life as before.
You will remain the person you are, you just have to make a few adjustments. Hopefully your neurologist did an MRI of your head, spine and back to see where the MS has settled. Most people have areas of their brain that show scarring in areas of your brain that affect the movement in parts of your body. Your neurologist will be able to confirm for sure that you have MS by giving you a spinal tap that will show if the MS is in your spinal fluid.
The area where you are affected will show up as white scars where the myelin (the part that surrounds the nerve, much like an electric wire that has plastic covering it) This scarring is what causes the signal to be impaired which causes numbness, tingling and some weakness in that area. My area showed the scarring in my leg area and lower abdomen, so I have partial weakness in my ankle, lower leg and upper leg.
I started out by having a numb foot and I kept tripping and spraining my ankle and leg. I was given a custom fitted foot brace that really helped me keep my foot from dragging and making me fall. In the 10 yrs I have had this numbness it started with my ankle, then my lower leg and a few years ago it extended up to my upper leg.
I have the progressive kind of MS so the disease will progress on its own. People with remitting or relapsing types have more medication options, some of which are given in shot form. Some of these repress the immune system. You see MS people have hyper immune systems where their immune systems attack the myelin for no reason.
With a few adaptions in my house, like a railing going up my driveway, and a railing in my shower and by my toilet. I also got a manual wheelchair for traveling out in the community, which makes it easier on my fatigue and back pain. My back pain is nerve pain which is the hardest to overcome but getting on the right medications for muscle tightness and pain makes a world of difference.
If you have pain with your MS you must get the proper medication to help you get out of the cycle of pain. You have to keep advocating for yourself with your doctor and even go to a pain doctor to get the medications you need to be not in pain all the time. That only causes depression and many people with MS get that, especially when they do not have their pain under control. Some people only have numbness and muscle weakness so consider yourself lucky.
"The Eve Chronicles" by Diane DeVillers will take you a world away.
ria on November 03, 2014:
Thanks for sharing your story. I have relapsing remitting M.S. I was diagnosed at age 24. My worst symptom, although I have many, is fatigue.
Yvonne Decelis from Boston, Massachusetts on October 02, 2014:
Great hub - I voted you useful and interesting for this. Come check out my hubs if you have time and let me know what you think. BTW: thank you for saying that MS is not a death sentence. I have been given some grief for my book title ("It's Not as Bad as it Sounds (my life with MS & Fibro)") which is probably more positive than I am but I chose my title to convey a sense of hope. I must have typed "MS is not a death sentence" over a hundred times now!
Pollyannalana from US on December 08, 2013:
YW hope you will!
girlpower on December 08, 2013:
you are not the first person that had suggested bee sting therapy, i will research the subject. My muscle weakness in my right leg is caused not from the muscle itself but fr0m my brain where there are scars in the area in my brain that control my leg, the nerve that is supposed to transmit the signal to move, has been interupted by scar tissue, much like an electrical wire, the outer plastic covering has been compromised so the scar there prevents the signal. Its a shame as my leg muscle has not atrophied, i ride a stationery bike, hoping for a cure that will heal those scars and allow the signal. If bee stings could do that i will give it a try thanks
Pollyannalana from US on December 08, 2013:
Have you considered bee sting therapy? I have personal knowledge about its powers myself, although I do not have MS. I did have a friend pass away with MS though, I have the story here and I would have begged her to go for the therapy or find someone but I did not know of her condition til afterwards. Please check it out anyway.
Teresa Coppens from Ontario, Canada on February 03, 2012:
Another awesome hub!
Rastamermaid from Universe on December 13, 2010:
Thanks for sharing!
Renee S from Virginia on April 02, 2010:
Thank you for sharing with us. You are couragious and my prayers are with you.
Portamenteff from Western Colorado, USA on November 21, 2009:
I had a guitar student who went off to college, then got diagnosed with multiple sclerosis. His guitar skills were the first thing to go. I'll pray for you. It's not an easy road that your are on.
MentalDribbles on November 17, 2009:
Another great informative Post.You go,girl power