MS Hug Struggles

As everyone reading this now and who has read some of my previous posts knows, I have had Multiple Sclerosis for over 20 years. This has been something I have lived with for almost half of my life, and I still find it extremely frustrating. Even after all these years, there are still things I do not understand or know about this disease. The one obvious thing is how unpredictable it can be. I do find it amazing how much we can adapt to and tolerate life when we have no other choice but to keep moving forward.

There are many things about Multiple Sclerosis and days living with this disease that can feel like things will never improve, which can make you feel hopeless. Even though I have days when I feel like this, I also believe that we are not forced to deal with anything we cannot handle! Of course, it takes a strength we never knew we had, but it is possible to keep moving forward.

I wish I knew the name of the person who thought they were being clever and humorous by naming something the “MS Hug” because this is the worst kind of hug I have ever heard of. It completely ignored the advice from the experts about social distancing and never considered getting approval before hugging someone. I have always thought that MS Hug was very disrespectful and invasive.

Even though I still do not know who came up with the name, I do know that MS Hug is very uncomfortable, but it is not life-threatening even though it feels like it is at times. The MS Hug is an uncomfortable, sometimes painful tightness or pressure around the abdomen or chest. This can last for seconds or minutes, which is the best-case scenario but can also last hours or longer.

There are two effects of Multiple Sclerosis that can trigger the MS hug to happen. One is muscle spasms in the small muscles between the ribs, known as the intercostal muscles. The second is changes in sensations known as dysesthesia, which while they can be, are not always painful.

Just like everything else regarding Multiple Sclerosis, everyone experiences the MS Hug differently. The ways that help one person may not help another in the same way. Various things can help or even eliminate the MS Hug sensation including the following:

Discover your triggers:

This could include fatigue, temperature changes, eating a large meal, feeling unwell, or being stressed. It may not always be easy to discover what triggers the MS hug, but once you do it may be a good plan to avoid or at least reduce the issues you know are your triggers. Keeping a journal with what the temperature was each day, stress level, feelings of fatigued, and what you eat each day may help to determine what your triggers are.

Loose vs Tight Clothing:

For many people tight clothing triggers, them to experience the MS hug and even makes the sensation worse. This may mean not wearing an underwired bra or removing it as soon as your situation allows. It will just seem logical to wear loose clothing if you know tight clothing causes problems. As with everything else, tight clothing helps some people to deal with the MS hug. For reasons not always understood, the grip of tighter clothing can distract the brain, making the MS hug sensation less noticeable.

Moving and or Stretching:

For some people staying mobile and stretching relieves the pain from the MS hug, but for some people laying down is the only thing that offers them any relief. This is all a matter of personal choice and what helps you the most!

The use of hot or cold compress:

Again, different things work better for each person, so you just need to play around with heat and cold compresses until you know what works best for you. Hot water bottles, warm towels, or a heating pad when applied to the affected area may offer relief. If this does not work, you can try a cold compress or an ice pack to the affected area. Please understand and be careful of both hot and cold as it is easy to cause further damage to the skin.

Physiotherapy or other physical treatments:

his can include TENS which is transcutaneous electrical nerve stimulation. I honestly do not know a lot about this because something about electrical nerve stimulation scares me, but I have heard it can be helpful!

Relaxation, Mindfulness, and CBT:

Relaxation and mindfulness exercises can be helpful for anyone, not just those dealing with MS and the MS hug. Things like self-hypnosis and hypnotherapy have been successful for many people around the world. Controlled breathing techniques can be found with a quick Google search and are inexpensive. 

Multiple Sclerosis has come along way with treatment since I was diagnosed, but for some reason there still is not a cure. I wish there was a magical medication that could make all the pain and issues I deal with daily go away, but until there is I will just continue to fight and not allow this unpredictable, frustrating, and ugly disease steal the light and fire I have inside me. As I am sure you can assume, I am dealing with the MS hug right now and it has been a struggle. I am SO thankful that I work from home because with the way I was feeling today, there is no way I could have driven to an office and dealt with being this uncomfortable for 8 very long hours.

Anyone that is reading this and has Multiple Sclerosis, have you dealt with this issue before and if so what helps you? The funny thing is, normally heat is my enemy, but for this issue and other types of pain, my heating pad is my best friend. The only way I can be comfortable is wearing loose clothing because I find that to be the most comfortable. The weather has been changing each week, so I can only assume that might be the reason the evil hug is back!

Thank you for visiting my site today. I hope the information that I have shared was useful and interesting to you. I am looking forward to reading your comments because I am sure what you have to say will be helpful. I hope you had a good week and you have an amazing weekend! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

The adjustments

Over the past couple of weeks, there have been numerous changes to the weather. While I am thrilled the temperatures have cooled, the changes have caused havoc on my body. The hot weather I had to deal with all summer long was miserable and I could not wait for fall to arrive😊! Now that the fall weather is here, it is taking me a longer time than I would have anticipated adjusting. I know I can adjust to cooler temperatures because I love hoodies and snuggling up in a warm blanket😊! The issue is the constant fluctuation. If only it could just remain constant, I would be able to adjust and not be in unbearable pain!

Last week felt like an incredibly long week that I did not believe was ever going to end. Monday always seems like the busiest and most aggravating day of the entire week, but they all ran together and were just as frustrating. Working from home has many amazing attributes, but it also makes me feel like I am always at work because my work laptop seems to sit there and mock me. Yes, I do understand a laptop cannot really mock someone, but it does constantly remind me about work and what has gone all during the week.

The good thing about my job is, I truly do appreciate my team and my supervisor. One of my teammates always knows how to make me laugh and my supervisor appears to think highly of me, and I trust that she will have my back if I ever need support. I do believe this is uncommon in the United States because it has been a LONG time since I had a supervisor that is supportive and caring. Living with Multiple Sclerosis and dealing with the challenges is not easy, so having a supportive team at work is helpful and makes the week not as bad as it could be.

I am thankful the weekend has finally arrived, and I do not have anything that is a must do. I was even able to sleep in this morning, which is VERY uncommon. Two of my cats did start trying to wake me up earlier, but I was able to ward them off because I was not ready to move yet and was WAY too cold! This morning the issues I have been having with my feet and ankles were much worse, which I assume was due to be EXTREMELY cold. It is amazing what a heating pad can do to help with my issues with MS.

After a long week, what do you feel is the best way to recuperate? Are you doing anything fun this weekend or are you planning to just rest up in preparation for next week? I have a book that I need to read because I feel like it is going to help me with a challenging issue I will be dealing with soon. I think it is best to over-prepare when you know something seems like it is going to be impossible to handle. Even in the most challenging situations in life, there should always be hope, right? Right now, I need all the hope and preparation I can have because things are going to be hard in the coming weeks.

Thank you for visiting my site today. I hope you enjoyed and found meaning in what I have shared today. If anyone has any advice for ways to deal with an impossible situation, I would love to know! I hope you have a great and safe weekend doing what YOU want and not what others think you should do. I am really looking forward to reading your comments and will respond as quickly as possible. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes! 

Always, Alyssa

Just another day in paradise

Despite having lived with Multiple Sclerosis for 20-plus years and understanding it more than I wished, there are still times I get discouraged and frustrated. Of course, I understand that most of the symptoms that make me feel this way will subsite in time, they can be difficult to tolerate. Something worse than normal, and I have been forced to endure for the past several days is the neuropathy in my legs. I should be used to dealing with this because it is not new, but it does not get easier. Lately, it has been painful to walk and even sit down the sensation of tingly, pain, and the “spider dance party” on my legs have been almost unbearable. Considering I have been dealing with this for years, I can almost guarantee the reason for the increased issues is due to heat and stress.

Another issue that is not new but has been returning frequently is dizziness. It used to happen more later at night, but for the past few days it comes on suddenly at random times throughout the day. The only way I learned how to deal with this is to sit down immediately (to avoid falling), never lay my head backward, and or force on a still object. I already know I will get extremely dizzy if I lay my head backward, so I try to never do this. Heck, I also know when I go to the neurologist, they always have me do this, even though I explain what happens. It seems many doctors do not listen to their patients; you know the one that knows more about their body than any medical school can teach?

Many things can make Multiple Sclerosis symptoms flare up and we need to learn how to avoid these issues as much as possible. Summer in the south makes avoiding the heat pretty much impossible. Anytime I must leave my house and get in the car, I make sure to never drive until the air conditioning has been on long enough for it to not be too hot. How do you avoid heat when there are more hot months than cool months?

Stress is also a HUGE factor. Stress can make old symptoms return and create new evil symptoms. I am still learning how to avoid stress, but for me it is impossible. Everyone already knows that stress is a silent killer, but what it can do to Multiple Sclerosis is miserable. I know many of the reasons I have had awful relapses previously were because I was stressed about work, life, medication, money, and many other issues we all face.

Something else I have always had a hard time with is fatigue. It is hard for me to sleep most of the time and even more so during the insanely HOT summer months. I do try getting enough sleep, but it hardly ever happens, which more than likely has something to do with the inability to turn my mind off. Unfortunately, my mind is always racing, and I have not figured out how to stop this. It does not matter what day it is or what time I go to bed, I am awake at the same time every single day. If I am not awake at a certain time, the cats will play their part and force me to wake up. The truth is, I tend to wake up early anyway because of the pain I experience.

Finally, pain is a major burden in my life. I deal with pain in multiple parts of my body 24 hours a day, 7 days a week, and with no breaks. The crazy thing is, that I would not feel normal if I did not have pain. Of course, I would love to have one day or even one hour when I was not in pain, but it is not in the cards for me. I try to embrace the pain and just ignore it the best I can. My logic is, why focus my attention on something that is not going to change and use up the energy I do not have I have for something cannot control when many other things need my energy and focus? Great way to think, right?

Thank you for visiting my site today. I hope you are having a wonderful and safe long weekend, so far. I would love to read your comments and any advice you have regarding what I have shared today. I promise 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!

Always, Alyssa

Tips for prioritizing your needs

Once we learn our fate with the news of a chronic health condition diagnosis, we may feel overwhelmed with emotions. There is a process of facing enormous lifestyle changes we must make and what seems like a never-ending amount of medical information to consume. Unfortunately, any new diagnosis can fill you with a tremendous level of uncertainty and may make you feel less confident in your ability to acknowledge and react to what your body needs. This can still be complicated after living with a chronic condition for years.

When living with a chronic condition, it can feel like your relationship with your body has been interrupted, and it can take time to relearn ways to listen and react to your body’s signals. It is crucial to keep in my, that self-care is a skill that requires continuous practice. This could be something as simple as practicing treating yourself with kindness, without feeling guilty. It can also mean practicing asking others for assistance when you realize there is too much on your already full plate.

When living with a chronic condition it is important to understand, that we must focus on our needs and realize it is NOT selfish. When you are inclined to take care of others, this can be difficult to do, but it is a necessity. We may already know whatever condition we must endure may not have a cure and understand it is something we will face every day for the rest of our lives. The following tips are ways we can learn to prioritize our needs while living with a chronic health condition:

1. Maintain boundaries to decrease stress. Honestly, work and finances are the main stresses in life, but I also stress about the well-being of the people I care about. A few things I have started doing to reduce stress are, I am not working overtime or allowing anyone at work or anywhere else to cause me unnecessary stress. Working overtime is great for extra money, but I decided my mental health is more important than a few extra dollars😊!

2. Accept and respect your limitations. I tend to feel guilty if I am unable to do something for someone else and force another to do what I would typically take care of. It almost feels impossible to accept when I am unable to do everything. Although I have lived with Multiple Sclerosis for well over twenty years, I am still learning to accept my limitations and not push myself too hard and overdo it. Sometimes I think I need to retrain my brain and know I need to take each day, one at a time.

Truthfully, some people will be understanding and respectful of our limitations, but you will always come across those that will not be understanding. Never allow those that will not understand to push you past your limitations and be inspired and appreciative by those that are😊! No other person can determine what is best for you because YOU are the only one who truly knows!

3. Ignore any and all judgments from others. People are always going to be quick to pass judgment, but they seldom knowledge of what they speak. I have always said, “Most people say a lot, without saying a thing!” Sadly, judgments even when coming from ignorance, can still be extremely hurtful. Living with a chronic condition is challenging enough without negativity from others that cannot comprehend the difficulties involved.

4. Never forget that making your needs a priority is being logical and not selfish. I tend to believe that by making my needs important, I am being selfish because I always put everyone else’s needs more important than anything else, including my own. Please do not think the way I do in this regard because it is not the best way.

I am sure there are several other things we can do to make our health issues. If you know of anything else, I would be very interested in learning about it because all tips will be helpful to everyone. Life with a chronic health condition is difficult, but it is not the end of the world, and it could always be worst.

Thank you for visiting my site today. I hope what I have shared has been beneficial to you and it helps you deal with chronic illness in a better way. I look forward to reading your comments and any other advice that helps you. I will respond to all comments as quickly as I can. Please never forget that I am always sending you LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Thought Filled Sunday

It is a gloomy, but peaceful Sunday. I am not sure why, but I feel chilly and still feel drained from last week. Of course, weekends are “supposed” to be a time to recuperate and prepare for the week ahead, which I tried doing. Unfortunately, I still failed to catch up on the sleep loss from last week. I guess once we are sleep deprived and have missed out on many hours of sleep, we cannot ever get those hours back and we are forced to keep going, no matter how exhausted we feel. I know the end of the weekend is near and another long week is getting closer, but there is still time left for our weekend.

I am going to continue to try doing at least one post each day this week and hope to be successful in doing so. There are a couple of topics I am working on right now and hope to have at least one completed today. One crucial thing I will be sharing information about is the importance of mental health. May is Mental Health Awareness Month and I feel this is critical to try to understand this complicated topic. At this time, I only can speak to the fact that the United States has failed miserably in providing care for individuals suffering from mental health issues.

Another topic I will be writing about is the differences between trust and forgiveness. Trust is important and fragile. It can take years to build trust in another person and seconds to break the trust. Once you lose trust in a relationship, there is no guarantee you can trust that person again. If you can work through the lost trust issues and try forming trust again, it takes time and patience. Even when we decide to forgive someone for their wrongdoings and betrayal, that does not mean trust is automatically replenished.

Another topic I would like to write about is the challenges involved in living with a chronic illness without a cure. Sadly, we have genius scientists and doctors around the world, but so many chronic illnesses still do not have a cure. I know this is not 100% true, but in 2022 there seems to be a steady increase in the numbers of illnesses and hardly any headway to curing these illnesses☹.

People should be trying to progress and evolve with the times, but that is not happening. One thing that continues to grow is hatred and mean behavior. When people do not understand the way another person lives, they become scared and decide the way another person is living is wrong and evil. This is a cowardly way to live in the world. It does not matter how another person lives “their” life, as long as they are not causing harm and they are happy, it should not matter or be the business of anyone else!

Thank you for visiting my site today. I hope your weekend has been filled with everything that makes you happy. I have found it can be complicated to find topics to write about that will be intriguing to everyone, but I am trying. Honestly, some things I write about are to help me process issues in my life. I hope you enjoy the last part of your weekend! I 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!

Always, Alyssa

Invisible Illness

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!

Always, Alyssa

What is your purpose in life?

Even though it is not easy we all have a desire to find our purpose in life. Many times, these thoughts are embedded into us from family and our community, but we many do not feel connected to the ideas of others. Some may feel pressured to find a good job, get married, and have children when that is not the way they see their life. Unfortunately, society can play a HUGE part in these views because it is what many view to be “normal”. Everyone has different views as to what “normal” means and there is nothing wrong with that.

The things that some view as achievement can be vastly different for each person. Achievements should bring fulfillment to our life. Our personal sense of purpose does not mean an end goal, but more of an ongoing goal that has an impact. This impact can be big or small and our purpose is the why.c

Our sense of purpose can guide and support us. Though we may encounter setbacks and our world can be turned upside down and inside out, our purpose provides us with stability and direction.c

It is important to discover our purpose in life, but it takes time and determination! This is not something that can be rushed because it needs to be meaningful. Knowing our purpose in life can make life more meaningful. Our purpose contributes to a better life and mental stability. This may also reduce the risks of chronic illness and may help us to live longer.c

Through the rest of this post, I am going to share several ways to find what our purpose in life is. If you already know your purpose, I would love to know what it is, and I will share what I feel mine is.

Establish a growth mindset

When we are constantly growing and becoming better people, it allows us to identify our purpose and stay devoted to pursuing it. This also enables you to view challenges as opportunities, persevere despite failures, and accept constructive criticism.

Devise a personal vision statement

When we have a personal vision statement stored in our mind, it can help to manage stress and discover balance in our life. This can also serve as a guide towards our purpose by determining our values and understanding what is most important. Knowing our purpose in life can make it easier to make decisions that are in line with our values and to remain motivated working towards personal goals.

Transform pain into purpose

Struggles and challenges are inevitable in this life. Our abilities to overcome challenges are what shapes who we are and provide us with uniquely defined strength. The ways we turn our pain into a purpose are solely our choice.

Discover your passions

Our passions and interest are a sign of what areas our purpose in life may be secured in. These are deep-rooted into our way of thinking, almost to the point we are blind to them. Chances are you already know what you are passionate about, but if you are unaware of them consider the things you excel with. You can also bring this into conversation with those that know you best because they may see something you do not see clearly.

Become part of a cause

Everyone has a cause they feel drawn to and passionate about. You may have strong feelings about social justice, animal rescue, child advocacy, cures for certain illnesses, or the environment. There are several things that can be done to fight for our causes such as giving back, forming groups in your community, and surrounding yourself with others that inspire you or focus on inspiring others.

There are many things that I feel passionate about and connected to. Animals and children are innocent and need people to ensure their safety. Animals cannot speak to tell us what they are enduring, so there need to be ways to support them. Children are also innocent and sadly harm is done to them way too often. I also try raising awareness for Multiple Sclerosis and participate in things to raise money to discover a cure. In a world that is full of negativity and hate, I do the best I can to inspire others and spread positivity to as many as I can. I think it is important to fight for those that are unable to fight for themselves. If I had a way to save everyone that needed help, I would do so instantly.

Thank you for visiting my site and reading what I have shared. I hope you found this interesting, and I look forward to learning what you feel your purpose in life is. I think knowing what you are passionate about would help me to get to know you better. I do look forward to reading your comments and will respond to comments as quickly as I can. Please never forget that I am always sending you LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Multiple Sclerosis Awareness Month Part 2

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!

Always, Alyssa

Multiple Sclerosis Awareness Month Part #1

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.

Muscle weakness

Unpredictable

Long-last disease

Tingling

Insomnia

Pain

Laborious

Exasperation

Sensitivity to heat

Central nervous System

Let downs

Equilibrium

Relapse Remitting

Offensive

Stinging

Irritating

Sharp

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!

Always, Alyssa

Hard times with Multiple Sclerosis

I think most of you reading this already know that I have had Multiple Sclerosis since I was only 19 years old. Living with MS for 21 years has not been easy, but I also try to not let it get the best of me. There are always going to be good days and bad days with this disease. Over the years, people have asked me various questions, which some do not bother me at all because I think that means people want to gain knowledge. However, there are other types of questions that do bother me tremendously because the questions show how inconsiderate and cruel people can be.

In this post, I am going to tell you the questions that are hurtful and why I feel the way I do. I am also going to share a few things about this disease that are hard to live with.

One question that always gets to me is, “Why do you not go on disability?”. The reason this question affects me the way it does is because I have always worked and without restrictions. There is no logical reason anyone should think that I need to be on disability because my MS has not progressed to that level. Do I know if it will someday? Absolutely, not because I do not have a crystal ball that sees the future.

Another question that rubs me the wrong way is when people ask me, “What did you do to cause it?”. I mean, really who would ask someone a question like that? In the beginning, when someone asked me this I would wonder if there was something I did wrong and then it would send me into a tailspin of negative feelings about myself. No matter what the disease is, most of the time the person living with it did not do anything to cause it and this is very true with Multiple Sclerosis. The top doctors and researchers in the world, still do not know what causes this disease to happen.

This next question that I find disrespectful and vicious is, “Do you think this could all be in your head?”. My response is normally not pleasant or polite, but I do not think they deserve a nice response. I simply say, “Yes, this is all in my head. The numerous lesions in my brain do cause many issues that I must deal with daily. Maybe you would understand if you had even half of a working brain cell.” I told you my response was harsh, but how do you think I should answer a question like that?

Another question I have been asked that bothers me immensely is, “When do you think you are going to need a wheelchair?”. This question used to bring me to tears because it was my #1 fear when I was diagnosed. As I said, I was only 19 years old and might have still had a partial childlike mind plus, I did not know much about the disease, and I was terrified of a wheelchair. During times when my legs and feet are at their worst with pain and the annoying tingly sensation, this thought does enter my mind again. It is hard to not think this might be something I have to deal with in life, but it is not going to happen anytime soon, or at least that is what I hope for.

Multiple Sclerosis comes along with the pains of different types and severities. After living with these for half of my life, I tend to expect them. Most days, my pain levels are manageable, and I can try ignoring them. However, as the days progress the pain increases gradually. Since I am so used to pain, I often have said if there is ever a day or even an hour when I do not hurt, I would think I died and am on a cloud still comfortably. My life would not be the same without the constant pain, but it would be amazing to have a few minutes with NO pain at all.

The migraines that happen at least once a week are brutal and even more ruthless when they are accompanied by a sinus headache. I do know that migraines are one of the symptoms of MS and sinus issues are a side effect of the medication I take. There is not anything I can do to end these. I cannot stop the MS from being in my body and I cannot stop taking the medication because then the disease would progress and possibly quickly.

Neuropathy is an incredibly annoying symptom of Multiple Sclerosis. The feeling of spiders having a party on my legs and feet is irritating, to say the least. This tends to happen more during the evening hours, which includes times when I am “trying” and failing to sleep. The past few days, the neuropathy has not been limited to the evening hours and instead has been all day long dealing with the spider party. The crazy thing is a heating pad is the only thing that offers any kind of relief and yet, heat is also something that makes the MS flare up.

The final symptom of Multiple Sclerosis I deal with that is mildly obnoxious is fatigue. Everyone experiences fatigue from time to time, but I do on most days. The awful part about this is, even though I get extremely tired halfway through the day, I also at times cannot sleep. My guess is the reason I cannot sleep is because of the pain and neuropathy.

There are many times throughout the days that I wish Multiple Sclerosis did not exist, but it does and affect millions of people around the world. I think it has increased the strength I have to fight against it and every other difficult time in life. I have always been the type of person that does not allow anything to defeat me, at least not easily. Over the years, I have met many other people living with this disease and been able to offer them support, which makes me happy to help someone else struggling.

Thank you for visiting my site today. I am sorry this post was a longer than some of my others, but there was a lot to say about fun times with Multiple Sclerosis. I hope you found what I have shared helpful, and I look forward to reading your comments. I will respond to all of your fabulous comments as quickly as I can. Hopefully, your weekend has been wonderful and safe. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa