Living life with a chronic illness is definitely not easy. But I do my best to push through all the barriers this illness puts in front of me! In my heart and mind, I believe maintaining a positive outlook on all situations in life will carry us through to much better times! I hope you find the information that I provide both helpful and inspirational!
There are only a few days left of Multiple Sclerosis Awareness Month. March will be coming to an end, but unfortunately, those living with this illness still must endure the issues involved. There are always so many questions that come to my mind and none of them have any answers. Do I wish this illness had a cure? I would be lying if I said no because I wish with everything in me there will be a cure someday soon. Is this illness frustrating? Again, I would be lying if I said no because it is one of the most frustrating things in my life. Is there anything I can do to change things now? Of course, the only thing I can do is stay positive and take care of myself the best that I can.
There are many reasons Multiple Sclerosis is incredibly frustrating one is that I feel like I do not have control of it. Yes, I might have minor control issues. I like things to go according to a plan that makes sense and is clear. I hate not being able to control my body because of an illness that does not have a cure, yet. I do not understand why there has been so much research done and the only thing that changes is the medications being pushed out by the pharmaceutical companies. I know that many people in these pharmaceutical companies care more about themselves and their bank accounts than those living with this illness.
Another reason Multiple Sclerosis is extremely frustrating is that I must live in pain every minute of every day and that is exhausting! I woke up this morning with my back in so much pain it hurt more to lay in bed than get up but still was painful trying to move. Last night, I felt a migraine working its way into my head. The only thing I could do was go to bed and hope it would be gone in the morning. Unfortunately, the head pain was not gone, but it was slightly more manageable. Pain is awful to live with, but migraines are the absolute worst because it often feels like there is a sledgehammer pounding on my head!
Overall, I do loathe Multiple Sclerosis, but I know it could be much worse than it is. I guess there is a small part of me that is thankful for the type I live with. I do not and never will know what caused me to have this condition, but I feel like there must be a reason. When there are no explanations for things, I find it immensely irritating, and it makes me slightly angry. Considering I have always believed there is a reason for everything that happens in our life, I feel there must be a reason I have Multiple Sclerosis.
No matter how frustrating Multiple Sclerosis can be and how many times a day I want to give up, I made a promise all those years ago when I was diagnosed to my late grandfather that I never would surrender and would continue to fight. Sadly, I know there may come a day when I am unable to fight any longer, but that day will not come for many more years. I am far too determined to let anything, especially an illness control my life.
Thank you for visiting my site this afternoon. I hope you are having a lovely and relaxing day! I look forward to reading your comments and will respond as quickly as I can. The weekend will be coming to an end soon, so enjoy what is left of it safely! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
I have written about Multiple Sclerosis many times before and I have talked about it a lot as well, but neither of these can explain what it is like to live with it. Many people have heard Multiple Sclerosis referred to as the “invisible disease” and I supposed for the most part it is invisible. Of course, some people stumble because they struggle their balance, or they may have challenges to walk and are bound to a wheelchair or use a walker. These challenges are obviously visible because the person cannot and should not feel compelled to hide them. However, some try to out of fear of being judged. There was a time that I felt I needed to hide my illness because I know people talk and it is always about things, they know nothing about, but that is not my fault, and it is on them.
Out of all the issues Multiple Sclerosis puts on a person, many that are truly invisible issues to deal with. No one can feel the pain someone feels, which those with Multiple Sclerosis tend to face daily. I have mentioned before that I live in pain every minute of every day but try my best to hide it and not because I am afraid of what people may think. I hide the pain because nothing helps my pain ease. It does not matter if I explain how I feel or even cry about it, the pain will still be there. I am thankful that the pain I feel cannot be felt by those around me because I would not wish that on anyone, and it is not fair for anyone to experience it.
Another issue I deal with that is invisible is the neuropathy. The feeling of spiders crawling around on my legs and feet is only something I endure, and no one can see it. This is something that I feel daily and mostly it increases at night, but still there are times during the day I get experience this. Of course, my husband that is with me all the time can see it because I start getting fidgety and cannot stay still. Not that it helps but I will start rubbing my legs when we are watching TV or having lunch together. I cannot explain why I rub my legs or feet, but I supposed I am trying to make the feeling go away. My husband has even asked me if it helps or why I do it and I cannot explain it to him, I guess it is just a habit.
Stress causing my condition to deteriorate is not something anyone can see. Heck, I cannot even see it immediately, but will understand later what stress does to me. Stress can cause symptoms to worsen and potentially cause a relapse. Anyone that has Multiple Sclerosis or knows someone with it understands how bad a relapse can be and it is something that we all try to avoid. A relapse can be awful, but the actions taken to decrease the length of time one deals with them are typically by using steroids. For anyone that has been on a high dose of IV steroids, you know how terrible that can make you feel. I can admit that the steroids will make the relapse not last as long, I would prefer to not take them.
The only person that knows how exhausted I always feel is me. It is not something anyone can see, but I do see and feel it. I cannot even explain it to anyone because it does not matter how much sleep I get. I will wake up feeling like I have not slept at all and truthfully, I probably did not sleep well through the night. The pain and tingling will wake me or prevent me from falling asleep, but I still try pushing through the day like I have slept eight hours.
COVID introduced a new invisible issue to Multiple Sclerosis. Everyone had to deal with the normal things that came with COVID, but anyone that is on a medication that weakened their immune system had to be even more careful. Even after there were vaccines available, we had to determine how safe they were mixed with their medication. Being under isolation could make people feel even more isolated and nervous for what could happen if they got COVID. I know I was afraid that if I got COVID and being on Gilenya if I would survive. Anytime I left the house, I would wear a mask and be looked at like I was insane, but I do this because I refuse to gamble with my life.
I think COVID has made everyone feel like they are living under house arrest. My mother moved to Texas a few years ago and we did not see each other before she moved because of the fears of COVID. It is not that I do not want to see my mother, but I refuse to get on an airplane until COVID is gone and there are no new variants. I also do not want her getting on an airplane to come to where I live because I do not want her getting COVID or bringing it into my house. It is not easy dealing with this because she is my mother and I know she would get on a plane tomorrow, but it is not safe for either of us.
Considering March is Multiple Sclerosis Awareness Month, I thought it would be good to do a post about the invisible side of it. I understand why people would call it the invisible disease because much of it is invisible. Truthfully, I would prefer the balance issues I deal with to be invisible because I feared when I was diagnosed about being in a wheelchair and not that it is a bad thing. After all, it can happen. Although the pain is invisible, anyone that knows me can see how much I hurt.
Thank you for visiting my site today and reading what I have written. I hope this provides some clarification to the issues I deal with that are truly invisible and why I hide some of them. I am not hiding things because I am ashamed, but because it does not help. I do look forward to reading your comments because I know they will be insightful. I will respond to all comments as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
Living with Multiple Sclerosis has been challenging and frustrating at times. Yes, the disease itself is painful, but many do not understand the symptoms and how they affect daily life. If someone does not have the disease, they are not able to fully comprehend what it is like to deal with the symptoms. Even those that are closest to me and see me daily but do not suffer with the consequences of the disease have a difficult time knowing what it is like to manage. Many people I meet would not even know that I have Multiple Sclerosis because I look perfectly normal, but underneath the mask I wear is a battle with my own body.
When your body manages to attack itself and you have no control over the symptoms, it can be challenging to explain to others that do not understand because they do not have to endure the difficulties. It is not easy when you have no control of how your body reacts to the pressures in life or even to just being awake. I have said to some that they would not understand unless they could live in my body for one day, but most could not handle it well at all.
One extremely frustrating symptom is the constant feeling of fatigue. It does not matter what time I go to bed or how much sleep I get (which is normally NEVER enough), the fatigue issue consumes my life. I can say that it does get worse as the day progresses and by about 1:00 PM I need a nap, so by the time my husband is ready to have dinner and watch a TV show I am spent and exhausted. I have explained this to him numerous times, but it does not register to him, and he continues to want to have dinner and watch TV or a movie later at night. I guess I can understand this because he does work nights, but I still think there needs to be some compromise and meeting in the middle.
Another frustrating symptom is the never-ending pain. Being in pain 24 hours a day, 7 days a week with hardly any relief is not easy. I try to ignore the pain, but there are times when it is extreme and overbearing, and I am unable to ignore it. Pushing through the pain when it is at the worse and it is hard to stand, or move is immensely demanding. Heck getting out of bed when I know what the day holds, is aggravating and irritating. It is not that staying in bed would help much because just lying in the bed, I still hurt!
The issue with neuropathy is also a challenge. The feeling of pins and needles or spiders crawling around on my legs and feet is hard, especially because NOTHING helps. I am already maxed out on the medication that is “supposed” to help so how can I have hope for relief, when the medication that should help the neuropathy is not helping? I know it is best to believe things will improve, but it has been many years of this, and it is not coming to an end.
Thankfully, even though I do experience dizziness frequently, I have learned how to cope with it. I have learned that when I do get a dizzy spell, if I focus on a still object, it will help to get the dizziness under some control. However, when it happens when I am driving, it can be a little terrifying, but then I will focus on the lines on the road and manage to stay in between the lines.
I am sure there are other symptoms are not easy to handle, but the one I want to mention is the headaches/migraines. Out of all the other types of pain I endure, this is probably the worst and the only one that will have me in the bed for hours or at least until it gets better. Most pain is something we can learn to deal with, but headaches/migraines I have not been able to learn to deal with and I have been experiencing these since I was a child. I guess when the pain is concentrated on the head, it starts to affect the way we think and communicate.
I know that stress is my biggest enemy and not a friend to the Multiple Sclerosis. The only thing that stress does is make any symptoms with MS more intense. Right now, I am trying to get my medication that helps keep the MS at bay but going through the process and jumping through all their hoops is stressful. This is a medication that without the Gilenya Go Program would cost about $8,000 per month and that is not something any normal person can afford. Unfortunately, I only have enough medication to get me through until Saturday and then I am out. This medication has done well keeping the MS under control and being off of it will only cause me stress.
Thank you for visiting my site today. I hope you found this post helpful with understanding the frustrations of living with an uncurable disease. This post was meant to be a quick overview of the complications of living with Multiple Sclerosis. I would love the change to read your comments and will respond to all of them as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
March is Multiple Sclerosis Awareness Month and as I said in my post on March 3rd, I want to do a post about MS each week during the month. I know some information I have shared previously, but I do want to explain again what this disease is and the symptoms one might experience with this unpredictable disease. I also want to do my part in providing knowledge about Multiple Sclerosis to as many people as I can because it can easily be misunderstood or confused with other diseases. Please be advised that I am not a medical professional, but I am someone that has lived with MS for 21 years and has done countless hours of research.
Multiple Sclerosis is a potentially disabling disease of the brain and spinal cord. With Multiple Sclerosis, the immune system attacks the myelin, which is the protective sheath covering nerve fibers and causes communication issues between the brain and the rest of the body. In time this disease can cause permanent damage or deterioration of the nerves. Unfortunately, at this time there is no cure for MS, but medication can decrease the rate of progression.
The signs and symptoms can be different from person to person. No two people will experience the same signs and symptoms at the same time. Some symptoms that target movement are numbness and or weakness in one or more limbs, typically on one side of the body at a time. People may also experience an electric-shock sensation with certain neck movements. Others may suffer from a lack of coordination or unsteadiness.
A common complication with Multiple Sclerosis is vision problems. The issues with vision can vary from partial or complete vision loss, typically in one eye at a time. Others may have prolonged double vision or blurry vision. I remember when I was diagnosed with MS, I went to my eye doctor because I had lost vision completely in my left eye. Imagine being 19 years old going to the eye doctor thinking you are going blind and finding out the vision can be repaired, but you have a lifelong, incurable disease. It was a shock to my young mind, but I guess it was good news in a way.
Even though everyone experiences MS differently and deals with different symptoms, some common symptoms are slurry speech, problems with sexual, bowel, and bladder functions, fatigue, dizziness, tingling, and or pain in parts of the body.
I still have a few other posts I will be sharing about Multiple Sclerosis this month. I will be sharing a few reasons I get frustrated with this disease. I try my best to not get overly frustrated with others who do not understand or cannot comprehend the struggles I deal with, but I am only human and do get aggravated sometimes. I will also do a post to explain the different types of Multiple Sclerosis, so please stay tuned if you are interested.
Thank you for visiting my site today. I hope you are having a great and safe week. We have almost made it through this entire week and will be able to enjoy the weekend soon. Do you have any plans for the weekend? Whatever you do this weekend, please remember to continue to stay safe. I also want to remind everyone to continue keeping those living in Ukraine in your prayers. Unfortunately, the battle they are enduring is not over yet, but hopefully, they will find peace and safety during this tragic time. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
Happy Wednesday y’all! We have made it through the first half of this week, so we are at the halfway point. How has your week been? I hope you are having a great and safe week. The past few days where I live have had on and off rain, which always makes me feel worse than normal. Of course, when I look at the weather there is rain for many more days this week. The only thing rain does is make my legs and feet, back, and head have more intense pain as if I need any additional pain!
I was planning to do another post about March being Multiple Sclerosis Awareness month, but with my pain being awful I have not been able to yet. Even though I see a lot of rain for this week, I am hoping to be able to do at least one post to explain a little about what Multiple Sclerosis is. Without going into too much detail because my pain is that miserable, I will say one thing about MS, it is the most unpredictable, frustrating, and painful thing I have dealt with in life. Most days I do not get too upset about it, but on the bad days, it feels like a punishment for something I am unaware of.
Recently, I read something about Multiple Sclerosis being more about environmental factors and nothing about our genes. Considering there is not anyone in my family that lives with this disease, I am starting to believe that to be true. I do know already that certain foods increase inflammation and with that being a huge issue with MS, I try avoiding these foods. *I will be explaining this further in another post soon*. I also know for a fact that stress makes issues with MS a lot more intense because it has caused me numerous issues. Weather is another challenge with this mean disease. With all seasons and temperatures changing, my body feels it and does not adapt quickly. Even though I enjoy the sound of rain when I sleep, rain has become one of my enemies!!
Thank you for visiting my site today. I am sorry I was not able to do a more thorough post regarding Multiple Sclerosis Awareness Month, but I do promise I will do one before the end of this week. I hope you are doing well and having a lovely week. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
March is Multiple Sclerosis Awareness Month, which provides an opportunity to share information about this illness. Those of you that have been following my blog already know that I have been living with Multiple Sclerosis since I was 19 years old, so it has been 21 LONG years. Of course, I am not a medical professional, but I do know the challenges that come along with this illness. I plan to do a few posts about Multiple Sclerosis because there is a lot of information that needs to be understood. My first post about this will be simple, but hopefully it provides some information for you.
Sensitivity to heat
Central nervous System
During the rest of this month, I will do a post about the types of Multiple Sclerosis, symptoms, different medications, and various challenges. If anyone has any questions about this illness, I would be happy to answer them the best I can. Again, I am not a medical professional, but have a lot of knowledge I would be happy to share with anyone that wants to know.
Thank you for visiting my site today. I hope you found this post interesting, and you are looking forward to my future posts. I would love to read your comments and will respond as soon as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
As y’all already know March was Multiple Sclerosis Awareness Month. Even though March is almost over, MS for me and everyone else living with this illness will continue to battle with the challenges that come along with it. With that being said, I do want to share a few additional posts to further explain the struggles that Multiple Sclerosis creates.
One thing common with those with Multiple Sclerosis is heat intolerance. Simply taking a hot shower, spending too much time in the sun, or possibly making a hot meal because the stove and oven can make the kitchen extremely hot. The reason people with MS are sensitive to heat and temperature changes is that MS causes nerves to lose their conductive coating, which is referred to as a myelin-sheath.
Heat issues may cause a person with MS to have an escalation of symptoms such as dizziness and/or increased heart rate. I am going to share 6 tips that may help you to defeat the brutality of the heat enemy. Some of these tips might seem like common sense, but they are important to mention, or at least I think it is.
Logically, this makes perfect sense, but the warm summer months are closing in on us relatively fast and this needs to be very well understood. Staying inside with the air conditioner or at least fans may contain MS symptoms. Be sure to pay close attention to the forecast and avoid outdoor get-togethers when it is too hot. It will be much better for you and your health to stay inside when the temperatures and humidity increase because you do not want the symptoms to get too awful.
Utilize Cooling Products:
There are numerous cooling products available online and in stores. The MS Society has cooling vests, wrist, ankle, neck, and head cooling packs. These are fantastic cooling packs that can help you to tolerate the heat and even make picnics possible. Something as simple as a cloth dipped in cold water and applied to your head can make a remarkable difference in the way you feel.
Ice Cold Beverages:
On those insanely hot summer days, there is nothing better than ice-cold water with or without lemon. It is amazing what powers and benefits can be had with liquids. Aside from an ice-cold beverage, you may also experience relief from popsicles, ice cream, or frozen yogurt. To save time walking to the kitchen at night and searching for something cold to drink, try freezing a bottle of water and place it beside your bed. This will provide you the much needed cool down without leaving the comfort of your bed.
Cool Down in the Pool:
As the temperatures start increasing, spending time in a pool when possible can give you the cooldown needed. Not only will a pool help you cool down but provide you with some exercises that can be done easily and without high impact on your body that might cause you extra pain. For additional cooling powers, keeping your wet swimsuit on after leaving the pool can be wonderful because it will also keep you nice and cool!
Plug in a fan or fans:
The fan you use does not need to be high-tech or fancy to offer you cooling benefits. A simple oscillating fan that is easy to move to other rooms can provide you great and fast relief from the evil heat. A ceiling fan helps to circulate air, which can give useful relief from the heat as well.
Lighten Up Clothing:
It can be astounding how our choices of clothing can make a considerable difference. Thinking in layers of clothing when we get dressed might serve you as a benefit. Dressing in lightweight and easy to remove clothes allows you to remove layers, as necessary.
I hope the information provided in this post was helpful for you. In the southern state that I live in, I can speak from experience on how awful the heat makes me feel. It typically starts getting a little too hot for me in April and previously when I did leave the house, I would be overheated just walking to my car. A few years ago, I did reach out to the National Multiple Sclerosis Society and they sent me a few cooling products that are phenomenal, and I am thankful to have them. Of course, over the past year, I hardly leave the house, but hopefully, things will become safe again soon.
Thank you for visiting my site today. I know I have been a little off with my typical posts, but life and fatigue sometimes get in the way. I would love the opportunity to read what you thought about this information and will do my best to respond to all comments as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
Multiple Sclerosis can be a challenging illness to live with, but there are often ways to manage the difficulties. Many things can trigger symptoms, but there are also ways to avoid many of these triggers. It takes time to understand what exactly triggers your symptoms and then to discover the best way to avoid them. Just like each person experiences MS differently, each person will have different triggers and ways to combat those triggers. Of course, please remember that I am not a doctor or medical professional, I am just another person living with MS, and have researched the topic. Today, I am going to share 10 triggers and ways to avoid these triggers.
1. Stress: We all experience stress in our life but having a chronic condition like Multiple Sclerosis can create an entirely new source of stress. Other types of stress can be a result of work, personal relationships, or financial struggles. Too much stress for anyone can cause difficult times, but too much stress for someone with MS can contribute to the worsening of symptoms.
Ways to avoid stress might include finding a relaxing, stress-reducing activity that takes your mind off stress. This activity is anything you find enjoyable because this is for YOU and YOUR health. A few things that may appeal to you are yoga, meditation, and breathing exercises. These practices can help you to relax and obliterate risks for causing symptoms to worsen.
2. Heat: Any form of heat whether it be from the sun, sauna or, a hot tub can be too extreme for people with Multiple Sclerosis. This can often time lead to an exacerbation of symptoms. From my own experience, heat is the enemy which is difficult because I love the beach. I think my saving grace at the beach is the ocean breeze!
It is not always easy to avoid the heat, especially where I live in the south. The best way to avoid this is to keep your house cool and purchase extra fans. Also, on days when there is extreme heat avoid direct sunlight, wear light loose clothing, and stay in the shade as much as possible. Steer clear of saunas, hot tubs, and those hot yoga studios.
3. Childbirth: Many women with MS experience a relapse after giving birth. As a matter of fact, 20-40% of women endure a relapse in the period of time after giving birth. Thankfully, my husband and I do not have children, so I have not experienced this issue. Of course, no one can prevent a relapse after childbirth, but this would be a time to take some steps to reduce how severe the impact is. During the immediate days after childbirth, lean on family and friends to assist with your new bundle of joy so you may get rest and take care of yourself. This can help your body recover more effectively.
4. Becoming Sick: Certain types of infection can cause a relapse and MS can create certain types of other infections. Infection such as the flu or even something as simple as the common cold may cause MS symptoms to worsen.
Avoiding sickness can be challenging, especially with COVID spreading like wildfire. Even with the numerous challenges involved with avoiding getting sick, living a healthy lifestyle can help with preventing infections and other illnesses. It is also helpful to wash your hands for at least 20 seconds multiple times a day and distance yourself from anyone that is sick, especially if you are experiencing a relapse.
5. Some Vaccines: While most vaccines are safe and recommended for those with Multiple Sclerosis, certain vaccines contain live pathogens, which can create the risk of exacerbating symptoms. If you are experiencing a relapse or taking certain medications, consult with your neurologist before getting any vaccines because it might be in your best interest to postpone the vaccine. Your doctor will know the best way to handle this and will advise you regarding vaccines.
I will be completely honest with y’all with the medication I take for MS, Gilenya, I was advised years ago to not get vaccines. Of course, that was 20 years ago and so many changes with medications with additional research. I had always been leery of getting anything and it was not due to the needles, I just feared for negative interactions. However, my current neurologist told me things with the Gilenya had changed over the years and the only vaccines that were not safe were the ones that were live vaccines, and I was able to get the COVID vaccine and I can get the flu vaccine if I decide I want it. My neurologist did highly recommend I get the flu vaccine, but I am not in any rush to do this!
6. Vitamin D Deficiency: At least one study discovered that people with lower vitamin D levels have an increased risk of relapse than someone with adequate vitamin D levels. It has been suggested that Vitamin D can protect against developing MS, but even more research that revealed Vitamin D affects the disease as it is needed.
The best way to prevent the issue of Vitamin D deficiency is to make sure your doctor regularly checking your Vitamin D levels. There are supplements available, some foods have high amounts of Vitamin D, and safe sun exposure can help increase and maintain your levels. However, while supplements may seem safe and legit, it is best to discuss any supplements with your doctor before beginning them to ensure there are not any negative interactions and they will provide suitable results.
7. Inadequate Amount of Sleep: Sleep has an important role in our overall health. The body utilizes sleep to repair the brain and restore other areas that have been damaged. When we do not get sufficient sleep, our body does not get the necessary time to rest and rejuvenate. Too much fatigue can trigger symptoms and/or make symptoms worsen. With muscle spasms, pain, and tingling, MS can make sleep rather troublesome.
Considering how vital sleep is for our health, it is crucial to discuss sleep issues with your doctor. Bring the issue to your doctor’s attention can help determine if any other conditions causing the sleep struggles.
8. Poor Diet: A well-balanced and healthy diet, along with regular exercise can be beneficial for avoiding relapses and/or reduces Multiple Sclerosis symptoms. A diet considering of processed foods will not supply your body with the nutrition that is required.
To avoid developing a poor diet habit, working with a dietitian to discover the best healthy eating plan you can carry on with could be extremely helpful. Although, research is not clear as to the best diet is for people with MS, eating healthy foods can have a positive impact on everyone’s health. Concentrate on good sources of protein, healthy fats, and carbohydrates is one of the best ideas.
9. Certain Medications & Stopping Medications Too Soon: The truth is some medications that can make symptoms worse. Your neurologist will need to monitor all medications you are taking to ensure there are no interactions that can trigger symptoms to worsen. Even though some medications can have negative side effects, this does not mean you should stop any abruptly. You should always consult with your neurologist before starting or stopping all medications as to not increase your risk of a relapse.
The 10th Trigger Can Be Pushing Yourself Too Far & Too Hard: As already stated, fatigue is a common symptom for those living with Multiple Sclerosis. With that said, if you have MS and continuously push yourself to go with too little sleep and/or overwork yourself physically and/or emotionally, you might face ramifications. The combination of overexertion and fatigue can trigger a relapse or make a relapse last longer.
The best way to avoid a relapse due to pushing yourself too hard is, be easier on yourself or at least listen to the cues your body is telling you. Start slowing down when you become tired. Rest as much as possible when you can. Understand that pushing yourself to exhaustion, the recovery will take that much longer. It is important to know that our body does know when it has had enough and when it needs to rest and take a break!
I hope the information provided in this post will be beneficial whether you have MS or another chronic condition. Living with any chronic condition can be complex and I am only way too familiar with Multiple Sclerosis, and with March being Multiple Sclerosis Awareness Month, I wanted to be able to share as much useful information as I could.
Thank you for visiting my site today! I hope you have a nice and safe weekend! I am looking forward to reading your comments and I promise to respond as quickly as I possibly can! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
In previous posts, I have explained that Multiple Sclerosis is an autoimmune and neurologist illness. What this means is MS affects the nerves, but also the body’s defenses to fight disease fails and begins to attack the cells. The immune system attacks the body’s myelin when you have MS. Myelin is a protective substance covering the nerves, so when this happens it leaves the nerves unprotected. The nerves being unprotected makes them vulnerable to damage, which causes them to not function as they would if there was healthy myelin. The damaged nerves create a wide range of symptoms that vary in seriousness.
A few additional facts regarding MS to understand are:
1.Multiple Sclerosis is a chronic condition, which means it is a lifelong condition and it does not currently have a cure. It is important to understand that even though there is not a cure, it is not fatal. There are 2.3 million people worldwide living with MS and they all have the standard life expectancy. It is only in rare cases there might be complications severe enough to shorten the life of a person. Overall, with MS most symptoms can be regulated with medication, adjustment to lifestyle, or both.
2. Multiple Sclerosis affects younger adults, and often women. Although MS can be diagnosed in children and older adults, people are mainly diagnosed between the ages of 20 and 50. Women are two to three times more likely to develop MS than men. If the person is diagnosed is over the age of 50, this is normally called late-onset MS. It can be challenging for older adults to find a diagnosis of MS due to other age-related conditions having similar symptoms.
3. Multiple Sclerosis can be arduous to diagnose. Often symptoms and single tests are not enough to be able to make an accurate MS diagnosis. The challenges are due to the symptoms mirroring the symptoms of other conditions. Numerous tests that can be used to rule out other potential causes of the symptoms a person is experiencing, which include:
A. Blood tests to rule out Lyme disease, which can trigger the same symptoms of MS.
B Neurologist Exam
C. Magnetic resonance imaging (MRI)
D. Visual evoked potential (VEP) test, which looks for impaired transmission present along the optic nerve pathways.
E. Cerebral Spinal Fluid (CSF) Analysis is a way to look for conditions affecting the brain and spine. The CSF analysis is a series of laboratory tests performed on a sample of the CSF, which is a clear fluid that cushions and delivers nutrients to the CNS.
F. Optical coherence tomography (OCT)
4. The symptoms involved with Multiple Sclerosis vary and the list is long. The truth is, there is no such thing as typical symptoms because everyone that lives with this illness experiences it differently. Some symptoms may simply come and go, or some may regain a lost function, such as bladder control. A few possible symptoms include numbness and tingling, vision problems, balance and mobility issues, and slurred speech. The unforeseeable pattern of symptoms is due to whatever nerves are being attacked by the immune system at any given time. Most things are just unpredictable, and we must deal with the issues as they come up.
5. Multiple Sclerosis is comprised of relapses and remissions. Remission is the period of time when the symptoms have improved. Remission does not indicate the MS is gone, but these periods may last days, weeks, months, or in some cases years. Relapse or exacerbation is the incidence of a new symptom or worsening of an old symptom. This occurrence can be mild or severe enough to interfere with the ability to function. No two exacerbations are the same, so it is important to consult with your neurologist when you deal with one.
6. There is a cognitive part to Multiple Sclerosis. All the damage MS causes to the nerves can also impact critical thinking and other cognitive (mental) skills. It is not unheard of or abnormal for people with MS to have issues with memory and or finding the right words to convey what they are thinking. A few other cognitive effects may include:
*An inability to concentrate or pay attention
*Decreased problem-solving skills
*Difficulty with spatial relations, which means the ability to perceive two or more objects positioned in space relative to oneself and in relation to each other.
*It is normal for cognitive problems to create frustration, depression, and/or anger, but these are issues your doctor can help monitor and manage.
7. Multiple Sclerosis has been labeled as an “invisible illness” or “silent disease”, which makes sense because at face value people with MS look no different than those without MS. Symptoms such as blurred vision, sensory problems, and chronic pain cannot be seen by anyone else. However, some people that do require special accommodations, even though they do not have mobility issues and appear to be fine. One reason why MS has been labeled a “silent disease” is that even during remission, the disease is still, unfortunately, progressing, which has been referred to as “silent progression” of MS.
8. Staying cool whenever possible is greatly beneficial. Heat intolerance is another common issue that can cause an exacerbation of symptoms. People with MS may experience an increase of symptoms from hot weather or sun exposure, fever or illness, hot baths, or showers, and overheating from exercise.
It might be helpful to use fans and air conditioning, cool drinks, and/or icy compresses to stay cool. Wearing layers of lightweight clothing that is easy to remove may serve as a benefit as well. Also, utilizing a cooling vest that can be purchased online. Although people might experience a heat-related relapse, it is important to understand that heat does not cause MS to progress any faster.
9. Vitamin D plays a vital role in Multiple Sclerosis. Research has indicated a link between Vitamin D and MS, which showed the nutrient can function as a protector against MS and possibly lead to fewer relapses. Sunlight triggers the production of Vitamin D in the body, but that sun exposure can also lead to heat-induced symptoms. There are plenty of ways to increase Vitamin D without sun exposure which include fortified milk, orange juice, cod liver oil, salmon, tuna, and eggs or there are also Vitamin D supplements available.
I hope you found this information useful for yourself or someone you know. Please just keep in mind that I am not a doctor or medical professional, I am just someone that has lived with MS for over 20 years. I have experienced most of what is in this post, but that one thing I did not do when I was diagnosed was have the CSF Analysis. I have heard it is not pleasant, but people do live through it. There are still a few days left in the month of March and I do plan on doing a few more posts for Multiple Sclerosis Awareness. I do feel like there is a lot of information available and it needs to be shared with as many people as possible!
Thank you for visiting my site today. I always appreciate your continued support and truly love reading your comments. I hope you are having a good week and you are staying safe because COVID is still a threat. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
~Terms to know when living with Multiple Sclerosis~
Whether you are newly diagnosed with Multiple Sclerosis or you have been living with MS for many years, you already know it is hard enough living with MS. Then adding learning and remembering an entirely new vocabulary makes things even more challenging, and confusing. I know there are times I still get a little flustered when talking to my neurologist or try explaining to someone the way I am feeling. I am going to share some useful terms to try to help make things somewhat easier to understand. Please keep in mind that I am not a doctor or medical professional, just a person that has lived with MS for more than twenty years.
Fatigue is one term we are probably all too aware of. This is one of the most common and important symptoms relating to MS. It has been suggested by the National Multiple Sclerosis Society, that this affects about 80% of all people living with MS.
Vision problems tend to be the first sign of MS for many people. This was the way the doctors discovered that I had MS. I think I have told y’all before, I had gone to the eye doctor thinking I was going blind in one eye, but the doctor said as gently as he could that he thought I had MS. I was terrified and only 19 years old, so I was still a child with a naïve mind. Inflammation of the optic nerves is knowns as optic neuritis. This can cause several problems, such as blurred vision, eye pain, and/or blind spots.
Brain fog is not a medical condition, but a term that is used to explain certain symptoms affecting the ability to think. Brain fog can make thoughts seem cloudy and you are not able to think clearly. This might cause you to feel confused, disorganized, and/or find it difficult to focus or put thoughts into words. This is also sometimes referred to as MS brain, cog fog, or cotton brain.
Slurred speech is often due to the loss of coordination of the tongue, lip, cheek, and mouth muscles. This loss of coordination may also result in trouble swallowing.
Loopy, which can be best described as feeling tired and/or almost like you are drunk.
Jelly leg, which may be referred to as jell0o legs or noodle legs. When experiencing jelly legs, you are legs will not work correctly.
Hallway pinball is when your walk is weaving from side to side. With MS, your legs may sometimes feel wobbling, weak, and tired. You might lose some control of your legs and when walking down a hallway, forcing you to bounce back and forth from side to side like something you would see on a pinball machine, hence the name.
Wooden leg or legs is a phrase that is used to describe the stiffness in the legs.
Foot drop is a term used to explain weak muscles that make it difficult to lift the front part of your foot or feet as you walk.
One major symptom of MS is chronic or acute pain. Shooting pains are typically acute, which means they come on suddenly, intensely, and then disappear. Pain is something I have battled with for the past 20 years and it does not get easier with each year that passes. However, I will not allow the pain that my life is plagued with bring me down and will always try to continue pushing through it, no matter how awful it gets. Truthfully, the pain does get worse when it rains or I am stressed. Lhermitte’s sign is a type of shooting pain. This is a sudden sensation that mirrors an electric shock passing down the back and into the spine and might radiate out into your arms and legs. This is usually triggered by bending your head forward towards your chest.
MS hug is a type of hug I never want. This term describes a constricting pressure surrounding the chest or waist area. It feels like there is a snake around you and just continues to squeeze or at least that is how it feels to me. The pain involved with the MS hug can range anywhere from mildly annoying to extremely annoying and tends to come along with a burning sensation. An MS hug is caused by spasms of the muscles between the ribs.
Spasticity, also referred to as spazzy. This is a common symptom of MS and can occur in any area of the body, but most commonly is in the legs. With this, the muscles might feel simply tight or can be extremely painful. There are two types of spasticity:
1. Flexor affects the back of the leg and upper thigh.
2. Extensor which affects the front of the upper thigh and inside of the upper leg.
Twitchy means you are experiencing twitching from spasticity.
Considering MS affects the central nervous system, the pins and needles sensation is common and most often felt in the limbs. This has been something I have dealt with for years and it is not easy to deal with. Even though I am on a high amount of Gabapentin, I do still feel this every day of my life.
Thank you for visiting my site today. I hope you found this information helpful or at least made things a little clearer. Believe me when I say, I understand how hard it is to remember every term used in the medical field and I have learned more by sharing this information with y’all. I think we can all continue to learn more, and we can help one another with this learning curve. I would love to read your comments on this post, and I will respond as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!