Riding the Roller Coaster called MS
Life is About Living… Not Waiting Around to Die
There is no mistaking the fact that Multiple Sclerosis can be a roller coaster, and speaking from experience, it can be one hell of a ride! It is learning to accept the challenges and educate yourself on what works best for you as an individual, and not feel pressured to make choices based on the opinions of others. Remember that this journey in your life is yours to travel and that everyone else is just along for the ride.
Learning to “strap yourself in” on this roller coaster, means, you need to start educating yourself on how to make choices in your lifestyle and treatment that benefit the quality of your life. Although your family may want you to try all kinds of medications and therapies that are meant to benefit or prolong the progression of the disease, but for some, the adverse effects can be quite harsh. Good medical care can lead to creating a treatment plan personalized for your specific needs. Remember to focus on what is most important to you. Some medications have been shown to slow the progression, and some have side effects that can create other medical issues debilitating in themselves. Always take into consideration that sometimes the quantity of life is meaningless without quality. Let’s take a look at a few of the most important things you need to remember when first diagnosed or when considering treatment and care.
First and foremost, try to find a good primary care physician that you feel comfortable enough with that you can be open and honest. Sometimes we find it difficult to be open with our physicians when it comes to matters of a personal nature. There are a vast majority of symptoms related to MS, some you may experience and some you may not. With good communication, you should be able to share with your doctor concerns such as any complications or issues related to sexual function, bladder control, forgetfulness, depression and stress. If it weighs on your mind, it affects your health.
Medications, Vitamins, and healthy dietary choices play an important role in your future. Research has shown that some medications such as Avonex®, Betaseone®, Copaxone®, to name a few of the many out there, can be beneficial in slowing the progression of the disease. However, many have also tried the medications and found themselves requiring many other secondary medications to counteract the harsh effects or other underlying conditions they create.
Vitamins, minerals, good nutrition can play an important role as well. Personally I have opted to not take the interfeuron, as for me it created a vicious cycle of multiple drugs and a very poor quality of life. I reacted poorly to the interfeuron, and by the time several months had passed, I was on 12 medications, barely able to breathe, unable to walk without aid, and mainly grounded to a wheelchair, waiting to die. Then I found a wonderful physician, and my life changed. He listened. We slowly weaned me off the medications and I started living my life by my rules.
I now take vitamins and minerals to enhance what little immune system I have, as we all know MS is an auto-immune disease, and needs a little immune boost. I make healthier food choices, and do still succumb to tasty temptations on occasion. I just pay for it later.
Secondly, don’t stop doing what you love to do, just modify how you do it. Yes, MS may sap the energy out of you like a tire loses air when you run through a pothole in Kansas City, and you may feel like limiting your activity, but it is important to keep moving. Daily activity and exercise within your capabilities will improve your overall health, mood and stamina. It is also very beneficial in helping to manage MS symptoms like weakness, fatigue, and muscle tightness.
Be sure to talk with your doctor and if needed get a referral for a physical therapy and occupational therapy evaluation, so you can find an exercise and activity plan that will coincide with your physical and medical capabilities.
When activities you love become more difficult, and at times they may, find ways to continue them, just modify how they are done.
One of my favorite things is to play outside in the dirt with my three year old grandson with his trucks. On days when crawling around outside is too painful for me, I throw an old sheet over my bed. I let him drag his trucks on he bed (of course we make sure they are cleaned up a bit), and we use cotton balls and foam shapes to haul around and dump or pickup. Sometimes we have even used cookies and pretzels, with a few haulers and dump trucks I purchased at a dollar store just for these occasions. He finds it just as much fun, I enjoy the time with him, and avoid being miserable from pain.
Another time, my grown kids and I wanted to keep up our annual winter tradition of building a huge snow fort in the yard. The snow was plentiful, as well as my stiffness and spasticity. That winter, instead of building the snow fort, I made hot cocoa and took pictures from the window and cheered my son on. When the fort was finished, donned in loads of warm clothing, I was assisted out to the fort and climbed in it and shared hot cocoa with him. I smiled when he said to me “we made an awesome fort together mom, if you did not keep me warm with hot cocoa, I couldn’t have finished it”. So do not give up, modify! Be creative, use your imagination and you will find, wherever you have the will, you can find a way.
Never let stress get the best of you. MS can be difficult and unpredictable, just like stress. We cannot always plan ahead for the unknown. The best way to deal with stress is to learn better ways to control how you respond to it. A good way to relieve stress is by doing yoga, if your body is capable, practicing meditation, exercise, and positive thinking.
Spending time with family and enjoying activities together can relieve stress as well, as long as they are not they are not the cause of your stress. I have found that some support groups work well, since the majority of my stress is family related. In some circumstances, this may be the case. Your family wants you to take it easy and not overwork yourself when doing for others or yourself, if it conflicts with that demands they put on you. You know your own body and your personal limits; you create the rules, not them.
MS can be a walk in the park for few, for other’s it can make mobility difficult and at times almost impossible. It can be an emotional battle for some people when it comes to using any mobility aid when needed. To use a cane, a walker, or a wheelchair, to some feels like a resignation to their condition. Some feel it is a sign of giving up, or a weakness in the ability to cope with the changes. I do understand this. I found that in my most difficult times with mobility, my friends all seem to quit inviting me to do things with them or ignore me altogether. Other times friends have voiced their opinions in an insensitive manner reflective of what they really feel about persons with disabilities.
An example of that is when I invited a friend of mine, who has limited walking capabilities due to a medical issue of her own, to go to the zoo with me. She stated she could not because of walking and I explained I had a scooter she could use, and that it would be great to get out and enjoy a warm day together. Her response was “there is no way I am using a scooter or wheelchair, I am not a crippled or old.” Well that let me know how she felt about persons with disabilities being excluded from having a normal life and when it comes to days when I want to be active and am dependent on assistance, I won’t be calling them to go have some modified fun.
Using any mobility aid is not a sign of defeat or giving in. It is a means of maximizing your abilities. They help get you to where you need to go, and when you get there, you have less expended energy and can be more active once you get to your destination. It is no fun to take all your energy getting somewhere only to be too tired to participate.
Plan ahead of time for what may be needed in the future. Don’t wait until you are struggling to make small adaptations in your home, to accommodate for future needs with MS. By making small modifications in advance, you won’t be hit with the unexpected later. It can save you energy, avoid falls and keep you more independent. Simple things like handrails on stairways, better lighting so you don’t miss seeing things and trip, non-skid floors, shower grab bars and easy to reach storage.
A good way to evaluate what you may need down the road is to speak with an occupational therapist for personalized suggestions. Taking time to do it now will cut down on the impact and expense of trying to get it all done when the time comes that it is a necessity and can help unforeseen accidents now when you become unstable when mobile. My bathroom handrail that extends the full length of the main bathroom will be there for days when I am unsteady on my feet, for now, it is an awesome wooden towel rack, lengthy enough to hold everyone’s towels so they don’t wind up on the floor!
Patience! Have a lot of patience with yourself, and with your family learning to understand your needs as well. Educate yourself and involve those family members that are supportive. Maintain good medical care and do your research on treatment plans that work best for you. MS is not a death sentence nor is it an indicator it is time to stop living life. Don’t settle for just existing.
One more roller coaster experienced in the amusement park of life, is one more path leading to where we belong. When we have been diagnosed with a medical condition such as MS, for which there is no cure we often struggle in finding our place. How we look at each challenge determines our strengths or our weaknesses. Make the best of it. Make it count.
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