Today’s topic for discussion is whether MS is making you too sleepy too often. First, we need to understand why you’re tired, what is fatigue, and how to circumvent it.
Multiple Sclerosis is a neurological disease. Though not yet understood by doctors why, for reasons unknown, your Immune system starts attacking the Myelin (wrapping) of your spine. Once it breaches that, it sees your healthy cells found in the spinal column as a threat. This attack starts near the location of the breach. It spreads sporadically and seemingly randomly. As it travels around, the immune cells targets random areas and works it way up towards the brain. Once there it finds ways to areas where motor skills, memory, vocabulary, and other sensation centers live. Hence why the symptoms vary from patient to patient. Lesions are either actively attacking (white on an MRI) or an area with damage from a previous attack (black or dark grey on an MRI). MS is unique for every single example of its existence. There are similarities, but no clones. Knowing that your immune system sees your own body as a threat, it has to work hard all the time. It’s working when you’re up, if you’re sleeping, when you’re riding in the car. It’s fighting when you feel good or bad. Knowing this helps you realize there’s little you can do to stop it. This is fatigue, this is what you always hear about. Examples include:
needing more sleep
loss of concentration
Lack of words
Short attention span
All you should focus on is how to "dance" with it. If you try fighting the fight it takes double the energy. You’ll soon be left only with reserves and not able to actually get out and do the things you want. Don’t fight it, but dance.
How do you “Dance with it”? Well, first it’s understanding your own set of baseline symptoms. We have a video about it linked in blue. The video will help you identify your own symptoms in order as they present themselves. Otherwise known as the "escalation". Once you start to understand your own unique pattern, you start to see the repetitiveness of the disease. You start to realize that you transition into the next level of symptoms while the first one exacerbates in a predictable pattern. So on and so forth until your out of commission or feeling really bad.
Keep track of your sleep patterns. Write them down, you can use your symptom tracker for this. We also have a video on the importance of tracking all of your symptoms. How you can better manage your disease by having the right information at hand when you need it. By tracking Tammy’s sleep patterns, we found a few facts that help her day to day. She gets more done with less hassle. We laid out a few examples for you below in hopes you can find your own patterns. Here’s a few patterns that we picked up on: 1. She sleeps a normal 7-8 hours at night. 2. She needs to nap around 11am +/- for an hour and a half +/- 3. Her brain energy is best before her nap. 4. Her body energy is best after her nap and lasts until 10PM typically. 5. She remembers things better if she learns them before napping. 6. Errands are best left for after her nap in the afternoon. 7. She can set limits on her output by planning a quit time. 8. She exercises or stretches in the afternoon before dinner.
Have you seen the symptom tracker video? Check it out here
Need a book to track your disease? Check out our recommendations here
See what I mean? All of these facts help her plan her day. For example: When we record an episode, she reads our notes around 10 am then naps. Other times, its Doctor appointments right after her nap. Maybe she needs to talk to the bank, she’ll call in the morning. If we need to do groceries, we go in the afternoon or evening. If there’s a stressful thing like public meeting or a family event, She'll take a longer rest…. even if not sleeping. This gives her body the advantages it needs to deal with stress later on. This is how you can start to help yourself. You plan your time according to the impact you feel from your illness. Still, you always have to bear in mind your actual limitations. You really need to tweak and fine tune those personal facts about yourself. Start slow, take your time and observe, write it down if necessary. Maybe a loved one can observe and you tell them how you're feeling. After a week or so a pattern will emerge and you'll start to make better plans. After a few months you'll have it all mastered. You’ll feel what your body needs, and you should always listen to your body over anything else.
I know this is not a perfect answer. I realize not everyone has the ability to change these things. Nor does everyone have the time to rest the right way. You may have children, sometimes work isn’t so forgiving. But, if you understand yourself more completely, then maybe your job can understand you too. Many companies make accommodations, be careful though, not all are as caring and some may take it differently. We are saying you CAN adapt to your new uncharted course. Your life will follow closely behind, it just needs a captain to guide it through rough seas.
Tammy, like many of you, didn’t want to adjust at first, she was always fighting the fight. She was consistently losing energy at the wrong time daily. I can only try to guide her to rest more without hurting her pride or self-confidence. Of course, I’ll always support and encourage her trying new things. Sometimes she surprises me, and more importantly herself. These are real issues and real problems we deal with in our regular lives. I'm sure many of you can relate to this. We all want to be the best we can, and sometimes an illness prevents us from that. It's hard to adjust to that and we understand.
Nothing is perfect in MS. Tammy also experiences those terrible days of feeling drained and sleepy no matter what kind of rest she has. We just made a video explaining what the challenges are for us to actually record episodes. We try to stay positive most of the time. We’re also humans, like you, living by the frequencies of nature. Tammy wants you to feel inspired by our show and for everyone to expand their own boundaries on personal limitation. To help people live a more fulfilling life without hurting themselves. Tammy courageously puts a positive foot forward for her following as guiding light.
Why not try to get a little more control on your own world. Take back some of that “Stolen time” and learn to better manage your disease. You'll feel better if you do.
Article by: Frankie Tea of TeamMSRV
Frankie and Tammy Tea live life to the fullest out of their fifth wheel camper. After Tammy was diagnosed with RRMS life took a dramatic turn. We decided that we want to lead a life of service and adventure. We sold most of our belongings and now live full time on the road teaching people how to deal with Multiple Sclerosis symptoms and mental attitude for a better quality of life.
Visit our Website: www.TeamMSRV.com