Barb has lived with multiple sclerosis since she was a teenager when very little information on the devastating disease was available.
You’ve just discovered that you have multiple sclerosis (MS), or maybe you’ve had it for awhile. For millions around the world, a diagnosis of MS is devastating and overwhelming news. And although news like that can leave one in a state of shock, it’s not productive to stay there for too long. Multiple sclerosis, depending upon which variety you have, can progress fast. It’s not the time to sulk or mourn indefinitely. You have choices to make. Hopefully one of those choices is to fight MS with the goal of having the most fulfilling life that’s possible.
The plan is to create your own MS survival guide. It won’t be just any guide. Your survival guide will be personal and specific to you and your unique situation and it will always be a work in progress. Once you accumulate enough information, it will be a valuable resource and reference manual you designed to keep you as healthy as possible. Your guide will never really be completed fully. It will always be continually updated with new information about you. You’ll need to be alert and add notes to your guide whenever you notice changes or other details. Overall, you’ll come to treasure your guide and know that it has had a helpful hand in supporting your thriving life.
Constructing Your Own MS Survival Guide
To begin the process, decide whether you prefer to access your manual using a hard copy or on a computer or other device, or both. Having access to both has a double advantage. The hard copy offers easy hands-on access and the computer version can be updated whenever necessary and printed out whenever you need to.
You’ll be collecting and compiling lots of different information specific to you, your health, your habits, what you eat and drink, when you sleep, and for how long. It is similar to food or lifestyle journals that doctors and other health providers sometimes use to get to the root cause of a medical problem. You can utilize the same strategy to help you in your mission for better health.
It might be helpful to have a few small notebooks that you can keep in a purse or pocket on hand that you can write notes in about the information you are collecting wherever you are. Then when you have time you could copy it into a word processing document. Or if you are tech-savvy, synchronize a tablet or other smaller device with word processing capabilities to your desktop or laptop so you’re always up to date.
Let’s get started collecting the information that will be the meat of your MS survival guide.
What to Bring up With Your Doctor
- Mental health
- Your balance (equilibrium)
- Last check-up: What did it show?
- Anything else you might be curious about
- If your insurance allows it, ask for a full exam.
Your Health Care Team
Begin with your current health care provider. Ask yourself if you feel supported by them and their collective staff. You should be taking notes, okay? Evaluate your health care providers and write down what you feel about their professionalism and of your past experiences with them.
If you’re not happy with what you’re getting, write that down. Write it all down. Then take a deep breath and find another provider. Good health care is not a guarantee. It can be hard to find.
If you feel your providers are knowledgeable and supportive, write them down in your book as part of your support team and write down why you want them on your team. You may need to remind yourself of why later if you hit a rough patch in your health. If you are planning on fighting for your best life you need to know what you are up against.
First of all, you’ll need to find, survey, and choose one or more health care providers that will support you in your plight to not only be healthy but to thrive. You will need to begin to train yourself to ask lots of questions without the need to apologize. We’re talking about your life and you have every right to the best life possible. Consider calling several healthcare providers, just for the purpose of gleaning as much help as possible. You can also search online. There are very capable medical professionals who will share helpful information. You’ll be surprised at the help and assistance you’ll find just for the asking.
In the meantime, ask your current provider about your health aside from MS. How is the rest of you? Do you have allergies? Are they under control? Are there any other problems that are evident in your blood work?
If you run into trouble getting that information, consider a walk-in medical clinic where you live that does bloodwork or other tests. Make darn sure they’re reputable. You don’t need any additional problems.
Your Support Team
It helps to have family and friends as members of your team too because they love you and often have your best interests in mind with regard to your health as well as their opinions. Sometimes they ask questions you haven’t thought of or considered yet.
They can also be helpful in instances in which you’re experiencing a specific challenge, you feel like giving up or maybe you’re just too tired to make an informed and safe decision about a matter needing an immediate answer. So don’t bypass or neglect to include them as part of your support team. They could be a vital key to your success.
Notes on Nutrition
As a nutritional rule, it’s always better if you can get most if not all of your nutrients from the food that you consume. Our goal is longevity, so we should be eating for longevity too. With that said, put everything you put into your mouth through the same scrutiny you will put everything that you will record in your MS survival guide. Vitamins and supplements are no exception.
Eating for Good Health
Which foods seem to give you energy, strength, and brainpower? Do liver and onions give you a big burst of energy? Do you feel great after eating a dish of steamed broccoli and carrots? Does wheat or bran tend to make you feel drowsy or even literally put you to sleep? When you get up in the morning and drink a glass of orange juice and eat that bowl of oatmeal or cereal, how does it make you feel? How about that cup of coffee? Or green tea? Does it give you energy or does it drain you? Wouldn't you like to know the answer to these questions?
Read More From Patientslounge
Try it. Try it with single items. First the orange juice, then the oatmeal. There are more scientific methods to finding out which foods you are sensitive to like the standard allergy testing. Whichever method you choose to help you discover your food sensitivities, this is vital information about you. These are details that need to be written down.
Best Exercise for MS
There isn't any single exercise that is best for those with MS. Experiment with different exercises looking for those that help enhance your health. If you are mobile and are able, walking is always a good, simple exercise that improves your heart. If walking is not possible, look for exercises you can do in a chair or try exercises you can do in the water with assistance.
Don’t hurt yourself, but if you struggle with exercise, perhaps you just haven’t found the exercise that’s right for you. Body movement is a peculiar thing. It doesn't come naturally to everyone and you certainly shouldn’t push it if your body is resistant. Find the exercise that works for you and write it down for your MS guide.
Relax And Rejuvenate
Rest is an important element in maintaining good health. We don’t all require the same amount of rest and sleep but we do all require a particular amount of rest and sleep every day. Do you know how much rest you do need? How much do you get? How do you feel when you wake up? Do you need an alarm clock? Will you survive without your coffee in the morning?
Experiment with how you feel with various hours of sleep. Experiment with how you feel without your coffee. Try a full glass of water first thing in the morning for a week before the coffee. Record what you discover. You may need to experiment with all of these elements separately. Try relaxing with some deep breathing exercises. After you’ve finished, write down how it made you feel.
A Toxic Environment
Where do you live: In a house or apartment? Is it a toxin-free environment? Is it a smoke-free environment? What materials are the walls made of? What kind of heating system do you have? Do you have a good ventilation system of fresh air? Do you get fresh air everyday? Sunshine? Do you smoke? Do your neighbors smoke? Does it matter? It might if you find that you're sensitive to it. Are you? Find out and write it down. Do you have problems with mold or mildew?
Does housework wear you out? Is it good for exercise? How do you feel after doing just a bit of housework like sweeping or vacuuming the floor. How about dusting, doing the dishes or doing the laundry. Find out and write it down, every detail.
Do you work? How is that going? Are there any problems that come up from time to time that present problems? Write it down.
Do you travel at all? Do you have a favorite airline? Why? Do they make flying easy for you or difficult? What would make travel easier for you? What planning do you need to do to make traveling stress-free or at least minimal?
If you have to travel, take advantage of all the free amenities offered by trains, buses, or planes and then if you must pay extra for something you need, do so if you can.
Make note of the airline and other modes of transportation that offer the most effective help that you need. Research for best handicap accommodating transportation. Write it all down.
How well do you do with driving? Does driving make you anxious? Tired? Do certain times of the day make a difference in your stress level?
Laughter, Fun, and Social Activities
While you’re busy trying to live your life, don’t forget to get some enjoyment out of life. Maintain some close relationships. Spend some quality time with family and friends. Do something fun. Go to a movie. Do something that makes you laugh. Laughter is good for you. And while you’re at it spend some quality time giving yourself to someone else. Give someone else some joy. Read them a book or just visit with them. And yes, write down how you feel when you do these things with or for others.
Using Your MS Survival Guide
Now you have the beginnings or framework of your very own personal multiple sclerosis survival guide.
If you have followed along with me, asking yourself the questions, sometimes very hard questions, collecting information about yourself, you now have a starter guide that is a ready resource for you to begin using now.
As you accumulate information about yourself, how your body responds to various stimuli, foods, environment, etc you can then use that information to try to control how you feel from day to day. Your attempts won’t always be successful 100% of the time but you have the best advantage to help yourself because you live with you 24 hours a day and you know you and you are now armed with your own MS Survival Guide.
So keep asking questions, pay close attention and keep helpful allies nearby. Study you! Continue to explore how different things affect you; what helps and what hurts. Write it down. Write it all down. USE IT and live your very best life.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.