1. All MS symptoms are the same.
Not true, not even a little bit. Sure, some people will share the same symptoms. They may share five. But, they will also both possess unique symptoms that only they can feel or experience. As a matter of fact, the way that MS attacks proves this theory over and over again. If you have a diagnosis already or have lived with MS for any amount of time you have searched for answers. You’ve read all the brochures from the office. You have scoured the internet, full of information without any direction. They all say the same basic thing.
They don’t know WHY it happens, but your immune system starts to attack the Myelin wrapping around your spinal cord in one or more areas. It eventually breaches the lining and the T-cells start to attack foreign matter. Stay with me now. In your spine there is a different fluid than in your bloodstream (this is why they like spinal taps). The t-cells recognize that fluid as dangerous matter and attacks the cells. It works its way, if left untreated, to the brain. Once in the brain it stems out like branches on a tree and slowly damages cells and neuron connections. The aggressiveness of MS is random it seems, but progresses as it matures if untreated. This alone is proof that it is virtually impossible to have two patients list of symptoms match perfectly. It should be called a Fingerprint disease, we’re all unique.
The most common symptoms include and not in any particular order:
· Numbness in extremities
· Fatigue or tiredness
· Weakness in muscles
· Vertigo, dizzy spells
· Vision problems, Neuritis
· Bowel issues
· Cognitive abilities
· Sexual disfunction
· More common than reported….. Depression
And many more that are not as common
Learning to understand the order in which your symptoms surface can give you an edge on when to back off of an activity. We recommend tracking your symptoms and sharing that information with your healthcare professionals.
Do you track your symptoms? You should start now if you don’t. Here’s our Symptom tracking video: Learn how to track symptoms. Here’s a link to calendars that we use to track with. Click for Calendars
2. You look fine, you must feel fine.
Yeah, I do look fine. Thanks for noticing. But what they don’t know is how hard it was to get up this morning. How long it took for the coffee to kick in. Or the pain shooting down my leg first thing this when I woke up. Right, that’s what we live with. We don’t know what tomorrow brings, we try to do the best we can. That’s all we ever should be doing. Sometimes I have to reread the instructions 3 times because I get lost in the words. I can’t focus for more than 2 minutes at times and that’s hard for me. A lot of these symptoms are invisible and I really don’t want to explain to every single person I meet.
The truth is. A lot of individuals with MS have an insane amount of pride. Don’t try to hide it, I know. My wife Tammy has the hardest time when it comes to admitting she’s in pain. She’s just so tough and it kind of makes me mad. It’s ok to be in pain. It’s ok to share that with people around you. People love you and live to help others. Unless you express it, someone can’t guess. Especially if they don’t understand anything about an auto-immune disorder/disease. There is a therapy in helping others and if you have a chance, I recommend you do. You’d be surprised how many people want to help you but don’t know how. You can get more help if you have specific tasks someone can do. For example:” Can you grab the mail for me please? It saves me a trip.” That’s easy, to the point, and a small task for someone. That can be a huge saver for you, especially if you have to go to a P.O. Box in town. There are many other examples that are small for someone else, but big for you. Here's a list of a few off the top of my head:
Carry the laundry basket
Walk the dog
Cooking half or all of dinner
Have you seen Tammy’s Diagnosis video? Here it is: Tammy diagnosis
Explains how MS struck her and the steps we took through diagnosis.
3. An episode means new damage. Episode, Flare up, Resurgence, Come-back….. Whatever you call it. There are a few things that come to mind when someone is having a moment like this. Not to discredit an actual flareup, they do happen. Most times it’s pseudo-exacerbation, but not always. Do not self-diagnose this type of thing, get a professional.
Now back to it, are they under stress right now? Mental, physical, emotional stresses can cause your symptoms to act up. Family can have a huge impact, especially distant family you haven’t seen in a while. Large gatherings can overwhelm your senses, and tire you out more quickly.
Secondly, what are the ambient factors? Like heat, cold, humidity, crowds, external forces and such. Because simply being in a new environment is stress. New experiences can trigger your baseline symptoms for no apparent reason. But inside, you’re working all that new information.
Before your treatment began MS was doing it’s thing inside you. There were some connections broken, some cells destroyed, some energy depleted. When that happens, you end up having a unique set of baseline symptoms. If you haven’t seen our video about this subject, I highly recommend it. Here’s a link: Baseline Symptoms. These symptoms are your gauge. They will teach you to observe yourself and watch for signs of the crash. You’ll better enjoy your time because you’ll be able to plan better.
So, if you’ve seen the video already or just watched it you’ll see that stress causes symptoms to act up. You may feel great one morning, get ready to go and boom. It’s 85 degrees outside and 90% humidity. That hits like a brick wall, like you were all excited and now……done. “I think I need to stay home; I can feel my leg is getting heavy”. But once you understand how your symptoms will go crazy on you, then later , maybe a day or more you’re back to normal again. Sometimes it’s a stressful phone call, other times it’s a project that keeps failing. Stress is a huge factor in your wellbeing and for feeling good overall.
4. I will have a shorter life.
False, definitely false. If you go untreated and let it ride, then it may be true to a certain degree. But, you’re living, you’re trying, you’re fighting the good fight. Things are hard, sure. But with modern medicine the science proves that you can still have a fulfilling life. A long life that brings you to many adventures and experiences. MS doesn’t affect you in the same way as, say Cancer attacks organs in those patients. Modern science has made the wheelchair seem like an extreme nowadays, plus there are so many other mobility devices getting around is easier than ever.
Actually, I asked her Neurologist about this exact thing. She confirmed that if you live an active life, with a healthy diet you can live a semi-normal life. It’s not all rainbows and butterflies, but it’s definitely not a death sentence. Knowing you are still you, and you want to experience all this life has to offer. Remember there are always people in a worse place because of what MS has done to them. There is always someone hurting a little more, someone with more loss. It’s not a competition, but knowing you’re not alone is seeming to help us. Now we take proactive actions to help my body fight the best it can. I nourish it with higher quality foods and don’t abuse it like before.
5. I can’t do anything anymore.
Do you believe that? Do you also believe that Al Capone is going to be found soon? Don’t believe everything you see and hear online. Some people can’t deal with the fact they have this new disease. They go online and talk about all the negatives only. That’s fine to do as a therapy of sorts. But that’s not the entire narrative of MS. You’ll meet a lot of great people that want to help you. People that make you feel like they care. But remember this, you’ll have good days, you’ll have bad days too. That’s all good. Do you remember all the perfect days you had before diagnosis? Right, because we all have good, bad, and ugly days…sick or not. Don’t let those bad days keep you in a rut. You just need a new plan.
I get it, you don’t go and hike 5 miles up a mountain anymore. I know, you’re not wall climbing at the gym like before. That’s all fine and You can still be good at other stuff. It’s just a different approach, different way of thinking. If you had a cast on your leg and you had pee really bad, what would you do? Hobble. Yup, you’d hobble to the bathroom. It’s different than walking, but same result. That’s an analogy for figuring out a new way. Instead of walking at noon, maybe wait until after dinner. Go to the beach early, beat the crowd and the sun. Maybe take a nap before a big event so you have fresh energy. These are little life hacks that will definitely make your adventures better, and have them last longer. Get out there and do stuff, you won’t ever regret nature.
Using items that can assist you can make adventures safer and fun. Electronic technology has improved dramatically since the dawn of cell phones. Try these items out. They really make a difference in Tammy’s life. She has the confidence now knowing if she gets tired, she can use an assistant to get home safely. It really boosts her confidence.
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
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