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!
Each person has unique qualities that set them apart from everyone else. These qualities are not something negative or to be ashamed of, but they can create challenges for the person to handle. Since I was a young child there have been certain sounds that I found extremely irritating, which I thought made me strange. It is not loud noises, but small noises such as people chewing gum, chips, popcorn, ice, or anything else that crunches. I remember a time being in the car with my mother or anywhere else when people were chewing gum and it caused an intense feeling of pure and utter irritation. Are there any sounds that you find irritating?
There is a rare disorder known as misophonia that affects about 20% of the population. Scientists suggest that one in five people suffer from this disorder to some degree and less than 1% experience extreme symptoms. This disorder can trigger emotional or physiological reactions to sounds. Of course, those that do not suffer from this view the reactions as an unreasonable and illogical response to sounds that can range from anger and annoyance to panic with a need to flee.
Those that live with misophonia have explained they are triggered by oral sounds, such as the noise a person makes when they eat, breathe, or chew anything. Other sounds people have found to be irritating can include the tapping on a keyboard, table, or steering wheel, or the sound of windshield wipers or blinkers. Some have said small repetitive motions are the cause, such as someone fidgeting or wiggling their foot.
Those with misophonia have said they respond to visual stimuli accompanied by sounds and have an intense reaction to repetitive motions. It has been suggested by researchers that those with this disorder have issues with the way their brains filter sounds and one feature of “misophonia sounds” would be their repetitive noises, which exacerbates other auditory processing issues.
Misophonia appears to range from mild to severe. Many have reported various physiologic and emotional responses. Mild responses can cause people to feel anxious, uncomfortable, disgusted, or have the desire to flee the situation. The more severe response may include rage, anger, hatred, panic, fear, and or emotional distress.
Doctors are unsure what causes this condition but have stated it is not an issue with the person’s ears. They do believe it may be related to the way sounds affect the brain and trigger an automatic response in the body. The onset is not known, but symptoms have been reported to begin between the age of 9 and 13 and last a lifetime. This is more common in girls and comes on quickly and does not appear to be related to any specific event.
A recent breakthrough study discovered that misophonia is a brain-based disorder. Researchers have referred to a disruption in the connectivity in parts of the brain that processes both sound stimulation and the fight/flight response. This is said to involve parts of the brain that code the importance of sound.
If this is something any of you deal with, I am sorry because I know how incredibly frustrating it can be. There have been times I had to cover my ears to avoid the annoying sounds because it causes me massive amounts of frustration and anger. It was so hard to deal with when I worked in an office setting because many people loved chewing gum and that is one of the most annoying sounds in the world. Thankfully, I am not working in an office setting, so I do not deal with this anymore, but my husband does love chewing ice and tries to say it is soft ice. It is NOT soft ice! If this is something you must live with, how do you handle it without losing your mind?
Thank you for visiting my site today. I hope what I have shared is something you do not live with, but if you do, please know you are not alone. I am looking forward to reading your comments and I will respond as quickly as I can. I hope your weekend has started pleasantly and you enjoy these two days! 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!
~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!
Hello Tuesday, my friends! I was not able to do my typical Motivational Monday post because I have been dealing with a nasty migraine for over two days now. The worst of this evil migraine was Sunday evening into Monday, but it is trying to let up a little now. Work yesterday was awful because looking at a computer screen only increased the pain I was having in my head, but I still did the best I could. I was supposed to have a meeting yesterday afternoon, but thankfully the meeting was postponed until this afternoon, I am not sure how well I could have dealt with a meeting with the migraine.
Of course, I endure pain every day of my life and the only pain I am not able to handle well is head pain. My husband was SO attentive and kept getting me fresh ice packs to put on my head and was willing to do anything else I needed. An ice pack typically helps relieve my head pain, but it was hardly touching the pain. When I say nothing provided any relief from the pain, I really do mean NOTHING at all even lessened the pain!
Considering it is still Multiple Sclerosis Awareness month and I have lived with this illness for over 20 years, I am planning to do a few more posts about MS. I know I have mentioned my first neurologist to y’all before. Dr. Kaufman was the first doctor I saw for this unpredictable and irritating disease. No matter how much I fought him and/or gave him a hard time, he never gave up on me. The man had the patience of steel and a heart of gold. His Nurse Practitioner was also a gem and was very compassionate. The two of them as a team were one of a kind and I will never forget either of them.
I did learn some sad news about my previous neurologist over the weekend. Overall, he is fine and healthy but lost his wife to cancer. This nice, loving, compassionate, trustworthy, and amazing man is one of the BEST and I hate to know he has gone through another tragedy in his life. It does not seem like the man cannot catch a break. I sent him a message with my condolences on Facebook, not that he checks those messages, but I did ask the former NP that does stay in touch with him to let him know he is in my thoughts and that I miss him. Then to give him a laugh, I asked the NP to tell him if he moves to the city I live in I will pay for his house, if he will treat me!
Once my evil migraine finally started to settle down and I thought I would be able to finish the post I was working on, my legs, feet, and hands started to misbehave! They decided to work together to create the annoying tingling feeling, with a touch of pain! When this happens, there does not seem to be anything that will relieve the problems. I guess I should be used to this by now, but unfortunately, I am not!
Yesterday was busy at work, which must have been a fluke because today is not at all busy. I am going to try finishing one of the posts about Multiple Sclerosis that I started and will hopefully finish it today, but we will see! To be honest with y’all, I do have a slight and manageable headache, which I think is a result of stress. My legs, feet, and hands are still misbehaving, but it is not as bad as it was last night, and I think is because of the rain we are having today.
Thank you so much for visiting my site today. I hope you are having a good week, feeling the best you can, and staying safe! I do look forward to reading your comments and 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!
As you read this post, please be advised that I am not a medical professional. The information in this post is based on the research I have done since being diagnosed with this disease 20 years ago. The one thing about this disease that is important to understand is, it is extremely unpredictable and everyone, no matter what type of MS they have experiences it different. It does not matter if two people have the same type of MS, everyone experiences and deals with it differently.
Multiple Sclerosis (MS) is an autoimmune disease that means that the body’s immune system attacks its tissues. This is a very unpredictable disease, and everyone experiences it differently. In this post, I am going to explain the four different types of MS and the distinctive characteristics of each type.
Radiologically Isolated Syndrome (RIS), is not considered part of the MS path, but has been utilized to categorize those with abnormalities on the brain and/or spinal cord that are consistent with a lesion of MS, and do not have any current or previous neurological symptoms or abnormalities discovered on a neurological exam. Many individuals had an MRI due to symptoms, such as headache, and revealed lesions appearing similar to those found in MS. During a study in 2020, it was uncovered that more than half of individuals with RIS will develop MS within 10 years.
Clinically Isolated Syndrome (CIS) is a path of MS. CIS is referred to as the first occurrence of neurologic symptoms, which last at least 24 hours. This occurrence is caused by inflammation OR demyelination in the Central Nervous System (CNS). CIS can be classified as monofocal OR multifocal. Monofocal is when a person experiences a single neurologic sign or symptom that is caused by a single lesion. An example of this is an optic neuritis attack. Multifocal occurs when a person endures more than one sign or symptom caused by lesions in more than one area. An example of this is an optic neuritis attack and tingling in the feet. An important thing to be aware of is, just because an individual experiences CIS, it does not mean they will develop MS. The healthcare provider faces two challenges with diagnosing CIS:
1. Determining if the person is experiencing a neurologic episode caused by damage to the CNS.
2. Determine the chance from the damage the person is experiencing is a form of demyelination that will develop into MS.
Relapsing-remitting MS (RRMS) is the most common and the type I was diagnosed with 20 years ago. Approximately, 85% of individuals with MS are originally diagnosed with RRMS. This type of MS has evidently defined the attack of new or increasing neurologic symptoms. The attacks are also referred to as relapse or exacerbations and are followed by periods of partial or complete recovery, which is also known as remissions. While there is not any obvious progression of the disease during a remission, symptoms may disappear or some of the symptoms may continue and become permanent.
RRMS can be further described by inflammatory attacks on myelin, which is the layers insulating membranes surrounding nerve fibers in the central nervous system (CNS) and the nerve fibers. Throughout the inflammatory attacks, activated immune cells cause small, restricted areas of damage that create the symptoms of MS. Considering the areas of the damage varies, no two people will experience the same symptoms at any given time.
Those who have RRMS tend to have more brain lesions and more inflammatory lesions that appear on the MRI scans. Individuals are often diagnosed with RRMS in their 20’s and 30’s but can also occur in both childhood and later adulthood. Women are diagnosed 2-3 times more often than men.
The symptoms of RRMS can and normally are different for each person, but there are some common issues. The most common symptoms for RRMS are fatigue, numbness, vision problems, spasticity or stiffness, bowel and bladder problems, and issues with cognition. It has been suggested that a transition from RRMS to years SPMS typically will take place in people who have lived with RRMS for at least 10, but this does not always happen.
Secondary Progressive MS (SPMS) is another type of MS. This type of MS usually follows a period of the relapsing-remitting disease, the levels of disability gradually increase with or without evidence of disease activity.
SPMS is basically a second phase of the disease. Individuals with this type of MS may or may not ensure relapses caused by inflammation. However, the disease slowly changes from the inflammatory process like seen with RRMS to a consistent phase classified by nerve damage or loss.
Before the availability of disease-modifying therapies, some studies suggested that 50% of those diagnosed with RRMS would shift to SPMS within 10 years, and 90% would change within 25 years. The many different medications that are available in 2021 have provided a positive impact on disease progression. However, experts say it is still too soon to know the extent to which these disease-modifying treatments will change or slow the transition to SPMS.
Considering the transition from RRMS to SPMS is a gradual process, the healthcare provider will not know when exactly it occurs. The challenges the healthcare provider faces is establishing if:
1. The worsening is permanent, but some damage remains after the inflammatory attack ended, meaning the individual is experiencing an RRMS disease course.
2. OR the disease continues to get worse, but the individual is no longer enduring an inflammatory relapse, which would indicate the person has transitioned to an SPMS disease course.
The fourth type of Multiple Sclerosis is Primary Progressive MS (PPMS). This type is classified by worsening neurologic function from the onset of symptoms without early relapses or remissions.
Each person that lives with PPMS will experience this disease differently. Commonly, PPMS may have short intervals when the disease is stable, with or without a relapse or any MRI activity, as well as duration when there is increasing disability occurring with or without new relapses or lesions on an MRI.
PPMS is different from RRMS and SPMS because it does not include the same issues with inflammation. Although people with PPMS have fewer brain lesions than those with RRMS and SPMS, they do tend to have more lesions on their spinal cord. Typically, people with PPMS experience more problems with walking and may require more assistance with everyday activities.
From my own experience with Multiple Sclerosis, I was a terrified child when I was diagnosed. I was only 18 years old and did not know much about the disease. In my naïve childlike mind, I was going from being diagnosed to a wheelchair and then death. Yes, I was diagnosed, but did not end up in a wheelchair yet. I think it is extremely important for anyone newly diagnosed to do research, build a strong and honest relationship with a neurologist, and have a strong support system. It can be a scary and terrifying diagnosis, but a normal life can still be lived, especially one the right disease-modifying treatment is found!
Thank you for visiting my site today. This is my first post about Multiple Sclerosis for MS Awareness Month. There is so much information out there about this disease and I only wish I had this when I was diagnosed all those years ago. I can remember how I felt because I was alone in the exam room when I heard the news and it felt like the room was spinning out of control. I did not want anyone to know I had MS, but that was rather silly. Now days, I am open about it and want to help others that are dealing with this disease. I want y’all to know, no matter how alone you feel, you are never alone! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes! I also want you to feel free reaching out to me any time if you ever need any extra support and help!
I am so glad that we finally made it through this week! I do not know about you, but I think this has been a painfully LONG week! Of course, work has been busy, which I like, but I can use a break from the insanity! I am not sure if it is stress-related or the colder weather, but my pain levels have increased drastically. Yes, I am going to be getting the first COVID vaccine tomorrow morning and if I am being completely honest, I am nervous about it. I am not nervous about getting a shot, however, I am nervous if this vaccine will have a negative interaction with the medication I take for the MS. At least I do not work the weekend and my husband will be sure nothing bad happens to me, and if all else fails the hospital is close to where I am going for the vaccine.
Our work week tends to be stressful and even cause some negative emotions to bubble up. Now that the weekend is so close, it is time to let go of all bad energy and feelings and just enjoy the short weekend. As I get older, I am understanding more and more, we have to do what brings us joy and care much less about what others think of us. As long as we are continuing to be kind, caring, understanding, and fair to others we are doing everything right. I am hoping the quote I am sharing with y’all will help remind you to live your life doing what you love and not trying to impress anyone else!
What do y’all have planned for your weekend? Y’all know I never do anything over the weekend, but you also know I am leaving the house tomorrow! Is it crazy that I am excited to leave the house but nervous about why I am leaving the house? Does anyone reading this post have Multiple Sclerosis, take Gilenya, and have received the COVID vaccine? I know that everyone experiences medication and side effects differently, but it might help relieve my anxiety to hear from someone that can give me a little information about the vaccine.
Thank you for visiting my site today! I really appreciate you continuing to visit and love reading your comments. It might sound silly to some, but I consider all my fellow bloggers friends. Please never forget that I am always sending y’all LOTS of love, comfort, support, and many positive vibes!
I have decided to write about a few things that have been weighing on my mind lately. Lately, I have been feeling overwhelmed with life, work, and health concerns. There always seems to be something going on in the world from the political insanity to COVID-19 to mass levels of hatred that is being spread even fast than the virus.
I think after everyone that wanted to vote did so and the counting was finished, there should not be any more talk about it. The voices of SO many American people spoke out and there is going to be a new president starting in January 2021! There is a chance we may have hope now because we are not going to have an immature person that is unable to take accountability for what has happened with this pandemic and is definitely not a leader in the White House.
As for COVID-19, if people would just follow the advice we have all been told for months now, MAYBE there would be more control over the virus by now. Unfortunately, the few times I actually leave my house hardly anyone is wearing a mask. I just do not understand why because I know they must have seen the news and see the numbers on the consistent rise. The virus is NOT a joke. This virus is killing thousands of people every day and it needs to stop.
The hatred that is being spread will never make sense to me. I have said this to y’all multiple times, but I have to say it again, everyone should be treated equally and with respect. A person’s race, color, sex, national origin, sexual orientation, religious following, and anything else should not matter because we ALL have a beating heart and feelings. No one should ever feel shame for who they are, but instead should be proud. The rage and hate that is filling the United States must end because the death, injuries, and fear are things that never should happen.
I will end my little rant now, but I do want to share with y’all a little about what my life has been like living with an unpredictable illness, especially during the pandemic. Most of you, if not all of you are already aware that this is definitely not easy. Of course, there are good days along the way, but then there are also those days that are more grueling than any others. The truth is there are some days it is challenging for me to even get down the stairs to the home office and begin my workday because my legs hurt terribly and they are extremely weak, but I do manage to get there.
Besides the continuous pain I have from my knees down to my toes, I have massive amounts of pain issues from the middle to the lower area of my back. Considering I have been living with Multiple Sclerosis for two decades, I have learned to live with the pain. I guess it is safe to say that I have learned to not just live with the pain, but also accept it as part of my life. I mean there really isn’t another way because I am not going to allow for Multiple Sclerosis to dictate my life as I want to control my own life. Unfortunately, there is not a cure for Multiple Sclerosis yet and I want to live my life to the fullest I possibly can. After all, I did make my late Poppy a promise 20 years ago that I would NEVER give up and I refuse to disappoint him by not keeping that promise!
Another difficult symptom I have been dealing with more lately is dizziness. Previously, the dizzy spells were random and only a few times a year, but recently they have been awful. Last week, I had two dizzy spells within a few days of each other. The second one happened after my husband and I finished dinner, and I told him before I tried to start cleaning that I didn’t feel right. When I tried standing up and I told my husband I was very dizzy, so he started cleaning up for me. I still attempted to try helping and when I thought I had control of the dizziness, I fell in the kitchen. Of course, my husband came running to my side to make sure I was not hurt. The only injuries were a few bruises to my knees and thankfully did not hit my head. Even after sitting on the floor with my husband for a few minutes, I still didn’t feel like I could stand without falling, so my sweet and caring husband carried me into our room.
I want to thank y’all for visiting my site today and reading this post. Even though I know some of you can relate to this, I wish you didn’t have to because I know it isn’t all that fun. On my worst days something that helps me get through them is I can hear my Poppy’s voice saying “No matter what you are going through in life, someone else is always going through something worse. “ He always told me he believed in me and that I was strong enough to get through anything thrown at me and I know he was right!
I would love to read your comments and promise to respond as quickly as I can. I know sometimes it takes me longer to respond, but that is because I have been working no less than 45 hours a week and sometimes more. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
For the first time in 40 years, on June 11, 2009, the World Health Organization declared the start of a flu pandemic. The CDC estimated that between 151,700 and 575,400 people died worldwide from the 2009 H1N1 virus infection during the first year of circulation. This virus was detected first in the United States in April 2009 before quickly spreading throughout the rest of the world.
On March 11, 2020, the World Health Organization declared another pandemic with it being called Coronavirus or COVID-19. Even though COVID-19 was thought to be serious enough for the World Health Organization to declare a pandemic, there were still some leaders that did not heed the warnings and take proper actions.
The same leader or leaders that did not take COVID-19 seriously, spent months saying it was nothing more than a hoax and then claiming it was not even as serious as the normal flu. I find the ignorance and shame it takes to call this deadly virus the Chinese virus simply because it began in China absolutely ridiculous. I mean, no one ever referred to H1N1 as the American virus because it began in the United States, so what gives anyone the right to call COVID-19 the Chinese virus or any other demeaning name they think of?
There is one leader in particular that continues to blame everyone else for the virus but fails to blame the person he sees in the mirror every day for the 129,545 American’s that died because of this virus. Worldwide there have been more than 511,000 people who lost their lives due to COVID-19. We will never know now if only action was taken sooner not as many people would have had to die.
There is no denying the fact that being faced with a pandemic, which has already taken the lives of many, is stressful. Most of us have been overwhelmed with distress and anxiety due to this virus. Although actions such as social distancing are imperative for safety reasons, it can cause additional stress and anxiety from being isolated and lonely.
As we continue undergoing the pandemic of an infectious disease outbreak, there are several other issues that we may experience, including but not limited to the following:
– Fear for your health and the health of your loved ones
– Worry for your financial situation and or job security
– Changes in your sleep and or eating patterns
– Troubles sleeping and or concentrating
– Decline in chronic health problems
– Intensifying issues of mental health issues
– Increased use of tobacco and or alcohol and other substances
Everyone responds to stressful situations differently. Even though we dealt with the H1N1 pandemic back in 2009, I do not remember being as concerned and terrified as I have been with COVID-19. The crazy thing is during 2009, I worked for a hospital system with the Employee Health Department. I had constant interaction with people that tested positive for the flu, but never really worried. Of course, I wore a mask and washed my hands multiple times a day and thankfully never got the flu.
I do realize I am not the only one that remains worried about COVID-10, but I can also understand there is no amount of worrying that will make this situation any easier. Granted even if we lived next door to each other, chances are we wouldn’t be able to see one another and would only be able to offer support virtually. We can do this now and help each other to lessen the massive burdens of stress we are all enduring.
I am going to share a few ideas I discovered that will hopefully help reduce the stress we have all been trying our best to manage.
1. Limit Media Time-
Most people have already proven the ability to practice social distancing to prevent the spreading of COVID-19. With already understanding the importance of social distancing for the good of our health, we should be able to understand why distancing ourselves from the media would be in the best interest of our mental well-being. It seems like the media has 24/7 COVID coverage, which can be beneficial in small doses but can also be very negative causing additional anxiety for those who already had concerns. If you are anything like me (I am so sorry for you), you are already feeling extreme anxiousness. When we are becoming more anxious, we should consider taking a break from all news outlets and the view the news only twice a day at most!
2. Stop Engaging with worry-
Regardless if you are worried about yourself or a loved one contracting the virus or being out of work, the more you focus your attention on the worst-case scenarios, the more anxious and stressed you will feel. Of course, we are not able to stop thoughts from entering our minds, but we can choose to not dwell on those thoughts and instead decide to take action towards solving the problems at hand. I think we are all logical enough to understand the enormous differences between worrying and solving the problems we face. Our mind will often try to bait us into worrying, so we need to avoid taking that bait. Our feelings of anxiety will try baiting us with the many “what if” questions that we need to try avoiding answering because it only leads us down dark and endless roads. During times like these, we need to focus our attention elsewhere and on the more positive aspects. I do know during these stressful times, finding the silver lining might be challenging, but it is there.
3. Do not react to physical symptoms-
Just because you or someone around you coughs does not mean it is because of COVID-19. People have allergies, bronchitis, post-nasal drip, or a common cold and these issues are the much more likely explanation. We all know the seasons can cause numerous issues, so it is best to not assume COVID-19 every time you so much as hear a cough, but being aware of your surroundings and following safety protocols should always be followed. For your mental health and well-being, do not continuously scan your body searching for COVID-19 symptoms. The only things this behavior will do is cause unnecessary worry and intensify our already high anxiety levels.
4. Focus on productivity and newer ways of enjoyment-
Unfortunately, we do not have any control over the crisis the world is experiencing currently and the only thing we can control is our response. How many times in the past were you overloaded with work and maintaining your home, but discovered something new you wanted to try? With how much our everyday lives have changed and we are now living our “new normal”, we might finally through no fault of our own have time for new adventures. We can learn a new skill or fine-tune something we used to do back before life got crazy with work and family. Now is the time to put our attention on creating and accomplishing, instead of the virus and or our employment status.
5. Seize the moment in stress-reducing activities-
There are numerous different things we can try that could help reduce the vast amount of stress we might be experiencing during these trying times. As few ideas may include focusing on the things we are grateful for, exercising our bodies, guided meditation, and yoga are things that may help us relax our minds. Anything we may want to learn can easily be found on YouTube; there are many simple videos to follow along with on just about anything we can think of. Just think, once we are finally past this crisis we will not only have learned something new, but also appreciate all the simple things in life we may have taken for granted before such as dinner out at our favorite restaurant, a night out at the movies, and even something as simple as a haircut.
6. Follow CDC guidelines, but do not go overboard-
Wash your hands with soap and water for at least 20 seconds or sing happy birthday or twinkle, twinkle little star, whichever you prefer. This does not mean washing your hands until they are red and dry. In the event soap and water isn’t available, you can use hand sanitizer containing at least 60% alcohol. Always avoid touching your eyes, nose, and mouth with unwashed hands. Maintain at least 6 feet between yourself and others outside your home. Wear face covering when around others out in the public. Despite what some might say, it is not necessary to remove all your clothing before entering your home.
7. Maintain a sense of normalcy-
During these crazy times, it may be challenging to continue your day as you normally would with some modifications, so this could require adding a little creativity. Before the pandemic, you may have gone to the gym for your workout, but now you have to work out in your home. Instead of dinner out with friends, maybe you have dinner or drinks by a video platform. Continuing life with a structure to our day and any type of an appearance of normalcy will help reduce any additional anxieties.
8. Show kindness for yourself and others-
During a time of national crisis, it is normal to feel anxious and worried. Remember while you are having these feelings, people you know are probably having the same feelings. Reaching out to family, friends, and neighbors who have been isolated, the same as all the rest of us may need a little boost in their spirits. Sometimes a simple phone call will not only heighten our spirits but also improve the person on the other end of the phone mood as well. If you are currently unemployed because of the pandemic, your new job is to have faith that this storm in life will pass and something new will come along and everything will work out for the best!
I meant to have this post out yesterday, but obviously wasn’t able to. For some unknown reason I had a lack in motivation and also continued getting distracted with many other things. I guess maybe it was the mixture of emotions I am feeling for starting my new job Monday. I am not overly nervous or excited; it is pretty much a good balance between the two. I have been out of work for many months now and honestly I have not ever worked from home on a permanent basis. I know I will be able to handle the work from home status well because I have always been extremely organized and disciplined. I did work in the same industry my work from home job is for several years prior to my husband and I relocated and did very well with it. If I am not mistaken the work I am going to be doing is almost exactly the same, but I have heard from a reliable resource that my new company is far more organized than the company I worked for previously.
Thank you for stopping by my site today and I do hope this information was helpful for you! I did only list 8 possible stress relieving ideas, but I do know there are many more and you probably already have some. I do hope you will share your thoughts on this important topic because it will help anyone that reads this. I hope your week is going well, you are feeling the best you possibly can, and you are continuing to remain safe. Please never forget that I am always sending y’all LOTS of love, comfort, and many positive vibes!
June is National Migraine and Headache Awareness Month. For June, the goal is to raise awareness, further educate those unaware about migraines and headaches, and show support to those that deal with these issues. Due to the vast about of information and to try to maintain length, there will be other posts with even more information about migraines and headaches.
Migraines are the third most common disease globally estimating 14.77% of the world’s population suffers from migraines. Approximately 38 million United States citizens deal with this pain. Of the American’s that battle with migraines, about 85% are women. The vast majority of migraine sufferers experience an episode once or twice a month, more than 4 million others endures chronic daily migraines. It is an exceedingly debilitating condition causing not just a simple headache but can come along with nausea, vomiting, visual disturbances, utmost sensitivity to sound and, light and tingling or numbness in the face. Nearly 25% of migraine attacks may include an aura, which is a visual disturbance that lasts less than an hour.
Unfortunately, children can be affected by migraines. Of the children that experience migraines they typically have their first episode before age 12. Even though at younger ages boys suffer more from migraines than girls, once in the adolescent year’s girls end up dealing with migraines more than boys of the same age.
Migraines are a crucial public health concern, but they continue to be misunderstood, under-diagnosed, and under-treated. More than half of migraine suffers are never diagnosed properly. Many that suffer do not pursue medical attention for their pain because like individuals battling other chronic illnesses, there are extremely high costs for medical services, minuscule support, and restricted access to proper quality of care.
While we are in National Migraine and Headache Awareness Month it is important to recognize the International Classification of Headache Disorders, published by the International Headache Society, which used to classify more than 150 types of primary and secondary disorders.
I will begin with primary headache disorders which are divided into four groups:
1. Migraines- I briefly touched on this at the beginning of this post, but allow me to give a slightly deeper description. A migraine headache is distinguished by throbbing and pulsating pain caused by an activation of nerve fibers residing within the walls of the brain blood vessels that travel within the meninges. Just to quickly explain, meninges are the three membranes lining the skull and vertebral canal and encloses the brain and spinal cord.
Migraine headaches are repetitive episodes of throbbing pain ranging from moderate to severe in intensity. These typically affect one side of the head at a time. If an episode goes untreated it can potentially last anywhere from 4-72 hours.
Various factors can trigger the migraine cycle to begin and could differ from person to person, but may include sudden weather or environment changes, too much or not enough sleep, strong fragrances, emotion, stress, overexerting yourself, loud noises, motion sickness, low blood sugar, skipping meals, tobacco, depression, anxiety, head trauma, hangover, certain medications, hormonal changes, and bright or flashing lights. The cause in 50% of migraine sufferers were foods and ingredients. A few examples of the foods and ingredients that can trigger a migraine are aspartame, caffeine, or withdrawal from caffeine, alcohol, chocolate, aged cheeses, monosodium glutamate, numerous fruits and nuts, fermented or pickled goods, yeast, and cured or processed meats.
The four phases of a migraine, which all can be apparent during an episode, are:
1. Premonitory symptoms occurring up to 24 hours before developing a migraine. These symptoms can include food cravings, incomprehensible changes in moods, unmanageable yawning, fluid retention, and escalated urination.
2. Auras occur in some people causing them to immediately before and during the migraine see flashing or bright lights. Other people may experience muscle weakness or a feeling of being touched or grabbed.
3. Headaches can start and gradually build in severity, ultimately becoming a migraine. However, it is possible to suffer a migraine without a headache.
4. Postdrome can occur after a migraine, which is when someone feels exhausted or confused. This phase can potentially last up to 24 hours before the individual feels healthy again.
Besides the two main types of migraines, I will provide details on; there are eight others forms people may experience. I will share only the names of the additional types in this post but will do another post with the details in the next few days. The eight other types of migraines include Abdominal migraine, Basilar-type migraine, Hemiplegic migraine, menstrual-related migraine, Migraine without headache, Ophthalmologic migraine, Retinal migraine, and Status Migrainosus migraine. The following are the details regarding the two main migraine types.
1. Migraine with aura, also known as a classic migraine. Symptoms can show about 10-60 minutes before the headache begins and last no more than an hour. The symptoms may include visual disturbances, difficulty speaking, numbness, or muscle weakness on one side of the body, a sensation of tingling in the bands or face, nausea, loss of appetite, heightened sensitivity to light, sound, and smell.
2. Migraine without aura also knows as a common migraine. The symptoms with this type include headache pain that happens without warning and typically felt on one side of the head, nausea, confusion, fatigue, blurred vision, altered moods, and an intense sensitivity to light, sound, or noise.
The most common type of headache is a tension headache, which was previously known as a muscle-contraction headache. This type of headache suggests the role of stress and mental or emotional pain triggers pain and contracting muscles in the neck, face, scalp, and jaw, missed meals, depression, anxiety, not enough sleep, or sleep apnea.
The pain that accompanies tension headache can range anywhere from mild to moderate and anything in between. Typically this feels like constant pressure is being forced onto the front of the face or to the head or neck. It can also feel like something is being tightened around the head and is felt on both sides of the head. Those that suffer from tension headaches may become very sensitive to light and sound, but do not go through the pre-headache aura that comes along with migraines. Tension headaches will begin to fade once the period of stress or other related causes ends.
Tension headache tends to begin during adolescence and reach the utmost activity in the 30’s. These headaches do affect women somewhat more than men.
Tension headache has two different forms:
1.Episodic tension headaches happen between 10 and 15 days each month and can last anywhere between 30 minutes to several days. Even though the pain is not disabling, the intensity of pain tends to increase with the regularity of the episodes.
2.Chronic tension headaches often happens more than 15 days monthly over 3 months. The pain involved with this form of headache is consistent over days or even months, it is felt on both sides of the head and can become extreme and disabling.
Both depression and anxiety can be the source of tension headaches. These can occur in the early morning or evenings when conflicts at home or work are expected. The various other causes include posture that strains the head or neck muscles, degenerative arthritis in the neck, and temporomandibular joint dysfunction.
Cluster headaches are the most extreme form of primary headaches. This form of headache involves unforeseen, exceedingly painful headaches occurring in clusters. They typically occur at the same time of day and night for several weeks at a time. Cluster headaches affect one side of the head, frequently behind or around one eye, and may lead up to migraine-like aura and nausea. The pain involved peaks 5-10 minutes following the onset and persists at the same intensity up to 3 hours. Some will endure restlessness and agitation, changes in heart rate and blood pressure, and increased sensitivity to light, sound, or smell.
Cluster headaches can start at any age but typically begin between 20 and 50 years old. This form of headache commonly affects that smoke more than those that do not smoke and is seen more frequently in men than women. Cluster headache episodes do not last as long as migraines. Ordinarily, people will have 1-3 cluster headaches a day, with 2 cluster periods yearly, possibly separated by months free from any symptoms. Cluster periods are commonly inaccurately thought to be allergies because they do occur seasonally, normally in the spring or fall. It has been suggested that inconsistencies in the body’s sleep-wake cycle could be a cause of cluster headaches.
Thank you for visiting my site today. I am sorry this post was so incredibly long, but there is a lot of important information that needs to be shared. In my next few posts I will explain the miscellaneous primary headache forms, secondary headache disorders, treatments and diagnostics. I do hope the information in this post was helpful and offered some sort of comfort. Personally, I deal with migraines and tension headaches far too much and understand many others do as well. I want to encourage your comments because I know they will be amazing and even help others, including myself! Please never forget that I am always sending y’all LOTS of love, comfort, and many positive vibes!