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  • Mark Mueller

Dealing with MS and Stress (Part 1)

Updated: Apr 10

I don't have Multiple Sclerosis (MS) but I have lived with it now for over the past twenty years. In 1996 my mother-in-law was diagnosed with the disease and then two years later my wife was diagnosed as well. I didn't know much about MS at the time, but out of necessity, I have learned quite a lot since then. I am not a medical doctor, research scientist or physical therapist. I am simply a man who has lived with people who have MS as well as being a certified fitness trainer who has worked with over one hundred clients that have the disease. Twenty years of a personal experience learning curve, as well as a lot of team research with my wife, has given me a keen understanding of how this disease not only affects a person but how a person with MS needs to be understood and related to. Truthfully, I have not mastered this ability yet (just ask my wife) but I would like to share with you some of what I have learned and experienced.

How Stress Can Affect People with MS Stress is inevitable. We deal with it on many levels every day. It can have positive effects on us, such as strengthening and building muscle by progressively requiring them to lift increasing amounts of weight. It can also produce negative effects such as headaches or stomach aches as a result of constant worrying. The same stress producer (for example starting a new job) can cause negative stress reactions in one person while causing positive stress reactions in another. Stress will always affect us in some way and it will be manifested in us physically, cognitively, emotionally or in any combination of the three. Managing stress is important for everyone as the effects of it can be debilitating. People with MS must be extremely careful when it comes to all types of stress. MS is a disease of the nervous system that affects the brain and spinal cord. It causes a breakdown of the myelin sheath which is a protective material surrounding the nerves. Picture your nerve as an electrical wire. Electricity flows through the metal wire which is surrounded by an insulator of rubber or plastic that protects the wire and contains the current. Now, what would happen if you were to damage the insulator and expose the wire? The current would no longer be completely contained causing the wire to short circuit, interrupting the flow of electricity and ultimately shutting down the pathway. This is what happens in a person with MS. As messages, or nerve impulses are sent from the brain out into the body, their pathway is interrupted at the damaged areas of the nerve where the myelin sheath has been damaged. This causes signals from the brain to be slowed down or completely stopped. New pathways for the signal must be found which, at first, are slower and less effective. Now, let's add stress to the equation. Stress triggers nerve impulses and lots of them. When these impulses are rapidly fired off through the body they begin to hit nerve areas where the myelin sheath has been destroyed which makes it difficult for the message to continue to its destination or it completely stops it. Several things occur at this point. The area of the body that needs to receive this message either gets it slowly, gets a mixed message or does not get it at all. The result can be a mind and body that will not function together as one would like them to function. Stress may add to pain, fatigue, cognitive disruption, confusion, strength loss, emotional unbalance and more. These extra burdens on a person can then cause more stress creating a vicious cycle which leads to frustration. Please understand that what I am saying is not in scientific terms. This is simply an analogy in layman's terms that I am sure a scientist would find holes in. The important thing here is that we have somewhat of an understanding of what is taking place in the body of someone who has MS and how it affects them. Hopefully, this will help us to be able to better relate to them and understand them. Studies have shown that stress can actually precipitate relapses, can exacerbate symptoms, worsen disability, increase inflammation and cause more degeneration. The following link will refer you to some of these studies:

See studies

How People with MS May Cope with Stress You can now understand why it is crucial that people with MS learn how to manage their stress. It's not an easy thing to cope with when you go to bed each night wondering whether tomorrow will be a good day or a bad day. Will your symptoms be flaring up or will they be manageable? Should you make plans or see how you feel first? Will someone be expecting you to do things that most people can do easily or will they understand that you have limitations? Will you be misunderstood by someone simply because you look healthy? The list of uncertainties goes on. It is difficult to control stress levels when one of the biggest certainties in life is that there will be constant uncertainties. Stress cannot be avoided. Sure, there are some situations that can be avoided but it is better for a person with MS to develop a plan and a mindset that will help them deal with stressful situations when confronted by them. If I was working with a client that had MS who needed to learn practical ways of controlling their stress, the following nine items would be what I would start with. 1. The first step is to accept the fact that you have MS. At this point in time, there is no cure, so you are the person that will have to take the offensive and do what you can to take control of your well being. You can't change the fact that you have MS, but you can change how you deal with it. 2. Surround yourself with people who care about you and who want to help you. Make sure that they understand how you are feeling, what you can and can't do and how they can best help you at the moment (even if it is to not help at all). It is up to you to convey these things to them in a positive way. Don't expect people to just know. They can't read your mind.

Avoid spending time with people who just don't get it or who don't want to take the initiative to get it. If you can't avoid being around these types of people, at least understand that their insensitive perceptions don't define you. 3. Know your stress triggers. Are there particular people, places, situations, etc., that you know stress you out? By identifying these triggers you can begin to develop strategies for dealing with them when they arise. Then, when you are confronted with them, even if they catch you off guard, you will have the security of knowing what steps to take to reduce the stress instead of panicking and wondering what to do. 4. Schedule. By scheduling you allow yourself to know what the day has in store for you. You know what you would like to accomplish and you know how much energy it will require. Scheduling reduces the potential stress of the unknown. Sure, there will be surprises around the corner but knowing that will help you to adjust. At the end of the day, if you have followed your schedule, you will feel good because you know you have accomplished something. 5. Delegate. Allow others to help you. You don't have to be a super hero. Less to do on your own is less to worry about. 6. Pace Yourself. You know your limits. Make sure you verbalize your limits to those around you so that they may honor them. Take time throughout your day to rest if needed. It is actually a good idea to schedule rest time so that you don't feel guilty for taking it. If you have a big event or a big day coming up in the near future, make sure to get plenty of rest beforehand so that you may enjoy yourself more. Also, be sure you leave time for yourself the following day(s) to catch up on your energy. 7. Learn to say, "No". You don't need to be a people-pleaser. Sometimes, you just need to put yourself first. If you don't, you will just run yourself down. The less commitments you make, the easier it will be to adjust to the conditions that your MS has presented you. Once you feel that you are managing well, you may begin to add more to your schedule....but only one thing at a time! 8. Find your Bliss. Too often, people with MS feel like they have hit a road block or have run into a brick wall. Communication shuts down. Decision making becomes extremely difficult if not impossible. They are at wits end and they just need to shut down. Everyone has a favorite place or a favorite activity that helps them to unwind and to feel a sense of peace. It may be in a garden, reading a book, doing puzzles or sitting on a pier. Find that place and retreat. By doing so you will be able to refresh and reboot. By going to this place often, you will hopefully be able to decrease the incidences of total shut down. 9. Your body is a temple. Treat it that way. Be sure that you are getting the proper nutrition and exercise. Staying healthy is key to relieving stress. When you feel good physically your attitude will be more positive, you will feel more confident and you will be more prepared to handle whatever may be coming your way. You don't have to try and accomplish these all at once. Take small steps. Several small steps add up to big steps.

Continue reading:

Part 2: The role of family members in helping people with MS deal with stress.

Part 3: The role of fitness trainers in helping people with MS deal with stress. To health, happiness and a lot less stress.

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