Multiple Sclerosis: Advice for Someone Just Diagnosed with MS. You are not defined by MS.
girlpower on a good day
Recently Diagnosed With Mutliple Sclerosis
After you get your MS diagnosis you should just sit back and breathe and know that you are going to be the same person you have always been. Each person with MS is unique, your MS symptoms and progression will be individual so read only the relevant information about the type of MS that you have. Such as whether you have progressive MS or the relapsing or remitting kind since either has way different symptoms and treatments.
The internet and your doctor can give you information about the type of MS that you have and for right now don't worry about the other types of MS. The first thing you will find out is that stress will make your MS worse. So.you must try to de-stress your life, stress acts like an eater up of your energy. You should also avoid toxic people and situations that can drag you down. You only have so much energy to spend every day and you must pace yourself
Realize that you may have to cut back on work and adapt your surroundings. If you have balance problems or problems with drop foot you should get the assisted devices you need such as a cane, walker or wheelchair. I had a custom made a prostetic brace that keeps my foot up so I don't trip over it. Don't be afraid of how you will look; if you fall down and break bones just think of how that will change your life.
Another bit of advice is to avoid the heat. People with MS can not process heat like other people. Limit situations where you get overheated, Remember you may feel fine at the moment when out in the heat but the next day you will feel it by getting fatigued or in my case getting vertigo. I had it for 19 days and had to go get infusions of steroids for three days. If you are going to be out in the heat bring a cooler filled with drinks and water and several ice packs that you can put in your clothing, I use a small thin towel and cover the ice pack and put it down my shirt in front or in the back. This will cool you but if it is in the 90's I wouldn't spend more than 3 hours out in it even if you are in the shade. As your day goes by realizing you may feel just fine, but MS fatigue is delayed and you will feel it the next day if you overdo. I eventually asked the MS Foundation and received a cooling vest which looks like a fisherman's vest with areas stitched in so you can put in frozen gel pouches that keep your temperature low.
Next, find a neurologist that you trust and is able to understand you. You will know if your Dr is the one you want, this Dr will be a lifetime team member with your family and friends. Realize your MS diagnosis will affect everyone you are close to. Some people close to you will be on board right away and some of them will be upset and unable to be on board for awhile. Some will have a total negative reaction and you should try to educate them if they continue to be negative or in denial you may have to limit your contact with them.
I describe my life with MS and the fatigue it brings me like having a bucket of water that represents my energy for the day. And I have about twelve ladles full of water or energy to use every day, so pick your activities and one by one use that energy through out the day. So if you use all twelve ladles full of water by noon then the rest of the day you will be tired and need to rest.
The Eve Chronciles by Diane DeVillers (girlpower)
Novel about a self-reliant woman forester who lives in a tent out in the Wallow Whitman Mts in Eastern Oregon called: "From the Waters of Coyote Springs" Author
Understanding Multiple Sclerosis
The weakness in my leg comes from the nerve signal in my brain that is being interrupted by the scars on the myelin which prevents the signal from getting through down to my leg. Myelin is like the plastic insulation around the wires like in a telephone wire. When the myelin scars it prevents the signal from sending impulses down the nerve to my leg to make it move.
I take a nap every day at about 3pm-5pm so I can re-coop energy so I can have an evening. of having energy. Without the nap, I tire easily and find myself getting grumpy. Realize that at the end of the day is when you will be the most tired.
Relax, people with MS don't die from it usually, they usually live to the same age as you would have without having MS. (actually I found out that you live seven years less, so what) You can overcome anything. You are still you.
Try to see if your insurance covers the assisted devices you need, wheelchair, canes or walkers and try to put up bars in the shower or by toilet. Avoiding falling down if you have gait problems is your first priority.
I have the progressive kind of MS, so I don't have to get any injections that people have to when they have the remitting kind of MS. My kind of MS does what it wants, my progression is what I call willy nilly, it will progress on its own, if and when it wants to. So far over the 10 yrs, I have had MS it went from my foot being numb to then the lower leg getting numb and losing some strength, and now parts of my whole right leg is weak and has lost the use of some of the muscles. I also require a foot brace that keeps my foot from making me trip
I use the cane in house, but when going out I use a manual wheelchair. If you see yourself not being able to work, apply for social security disability it may take a few attempts. I was lucky that I applied once and got it. Your neurologist must write a complete letter and I also wrote a letter myself. Have all your info from specialists and doctors all ready to go before placing a social security claim.
Exercise is critical to keep yourself in shape and to provide range of motion on the limbs affected by MS. Swimming is my favorite way of exercising and I use lap swim and walking in the pool to work out especially my right leg. Watsu which is water massage is a great way to get relaxed. I also get massages that take my pain away for days. I bought an incumbent bike that I ride 8 miles twice a day. I read books or listen to a tv program while working out. I also do a bed workout and lift weights. I end with Yoga.
Exercise is also another way to prevent depression which many people with MS find themselves faced with. Keeping involved with your family and friends is another way.
Getting MS has given me a chance to retire early and now I am writing short stories and just finished my first novel called "The Eve Chronicles". I also write emails to my Representatives and Senators in Washington DC and to Oregon legislature.about issues that affect people with disabilities.
What you do with your life after finding out you have MS is all up to you. Be thankful that you are still alive and find a way to take care of yourself and just relax and know that you have many people in your life who care for you. And learn how to ask for help, you would be surprised how many of your family and friends are willing to help, and they will feel good at being able to help you.
It is time to take care of you now.