Multiple Sclerosis Pain

Each person that lives with Multiple Sclerosis will have a unique journey, as this illness impacts everyone differently. I believe this is one reason why it is often referred to as the “snowflake” disease. The symptoms are vastly different from person to person, and we all handle the symptoms in our way. Of course, each symptom is frustrating, but some can be much easier to tolerate or even get used to. 

For over twenty years, I have battled with Multiple Sclerosis. When I was diagnosed, I was young and did not have extensive knowledge regarding the disease I would be forced to live with for the rest of my life. I was terrified, angry, sad, confused, and everything in between with the diagnosis because of what I did know about MS. I knew MS did not have a cure and it could be extremely unpredictable and there was a possibility to become disabled. Given my age, I was naïve and could not see any hope for my future, which made acceptance almost impossible.

Over the last two decades, I have experienced many different symptoms that had a variety of challenges. For instance, the first and only symptom I had was optic neuritis. This is commonly one of the first symptoms of MS. Optic Neuritis is a temporary problem. When the optic nerve is inflamed it can cause pain and partial or complete vision loss. Typically, this issue gets better on its own, but some cases require steroid medication to reduce the inflammation. 

During the early years after being diagnosed, I went through several frustrating days. Accepting the doctor’s diagnosis was painful and emotionally draining. Every appointment would start with me being argumentative and dismissive of anything the doctor said but would then end in tears. I could not fathom why I had this condition or why my life had to be altered so drastically and at a very young age. The truth is, I have always been a strong-willed person who could take care of herself without any help! I’ve never wanted to rely on anyone for help and was scared I would have to at some point in my life. 

The other frustrating part was deciding on a medication to slow down the progression of the disease. Back then my choices were limited to injections. I have never had an issue with needles but did not think there would be a way to give myself a shot. Even though I hated the options offered, I decided to try one that was three times a day. Unfortunately, after successfully giving myself a shot Monday, Wednesday, and Friday for a few months, the miserable side effects became too much for me to handle and I started slacking the medication, which made things worst. My first Neurologist was a sweet elderly man who has patience for days. He knew my fears, so to convince me to decide on another medication, he used my fears against me. It was a ruthless way of forcing someone to decide, but it did work. 

Of the various symptoms involved with MS, I did not suffer from pain in my early years. Unfortunately, during the past ten or so years, my pain issues have become increasingly more problematic. There has not been even a second, I have not experienced at least one form of pain. Considering it has been going on for so many years, there is a HUGE part of me that expects it and I can manage. Before I had MS, there were many types of pain I did not know existed. 

Through the rest of this post I am going to explain the different types of pain I deal with 24 hours a day, 7 days a week without a break in between. The reason I am doing this today is that my pain levels have become more intense and now in addition to all the other pains, my right shoulder and arm hurt so bad I can barely move my arm. I know my pain has become worst because of the incredible amount of stress I am under, which I am assuming is why my right shoulder hurts too. 

Although everyone has a different experience with MS, pain is a common symptom. Pain affects approximately two-thirds of people with MS worldwide and can impact their daily activities such as work and recreation, moods, and the ability to enjoy life. Most pain is a direct result of MS and is caused by damage to the nerves in the central nervous system. There are other forms of pain due to changes in the body due to MS, which could include experiencing weakness in your arms and legs, which forces you to walk differently causing pain in the back and hips. 

Neuropathic pain stems directly from damage to the nerves in MS. Pain from weakness, stiffness, or other mobility challenges is thought to be Musculoskeletal pain. Neuropathic and musculoskeletal pain can be acute with a rapid onset and short duration or chronic, which starts gradually and stays persistent. 

Neuropathic pain is miserable and, in my experience, not much helps ease the pain. This occurs due to “short-circuiting” of the nerves which carry signals from the brain to the body because of damage from MS. The pain sensation feels like burning, stabbing, sharp, and squeezing. The best way for me to describe this is, that it feels like spiders are having a constant dance party on my legs and feet. Neuropathic pain can be acute and chronic. 

FOUR TYPES OF ACUTE NEUROPATHIC PAIN

Trigeminal Neuralgia- stabbing pain in the face or jaw area. This can be misinterpreted as dental pain. Most often it is unpredictable, so we do not know when it will occur, but it does come and go.

Lhermitte’s Sign- is a brief stabling, electric-shock sensation that runs from the back of the head down the spine and possibly into the arms and legs. This can manifest by bending the neck forward. It typically means there is or has been damaged to the cervical spine from MS.

MS Hug- is a squeezing sensation around the torse. This feels like a snake is wrapped around your body and refuses to let go until it takes the breath out of you. An MS hug is the kind of hug no one wants and is an invasion of personal space!

Paroxysmal Spasms- is a periodic and painful tightening of muscles. For instance, this can happen in your arm or leg several times throughout the day and night.

Chronic neuropathic pain is normally the continuance of acute pain. This is unpredictable and may be experienced daily. Several issues can increase the likelihood to experience this pain, such as stress, fatigue, illnesses, and becoming overheated. 

Musculoskeletal pain with MS occurs because of weakness, stiffness or coordination struggles that change your walking or other mobility. This is often seen in the hips, legs, arms, and normally when muscles, tendons, and ligaments are immobile for a long period of time. 

Headaches and migraines are other common symptoms of MS. Although I deal with numerous other forms of pain daily, I am unable to tolerate migraines. These put me in the bed with an ice pack for hours and often even when I try to sleep them away, they are still present when I wake up. I have dealt with pain for many years and it never gets easier, but I also know crying or giving up does not fix the issues. I just try to keep pushing forward the best I can. 

Thank you for visiting my site today. I hope you found what I have shared interesting and that it helps you with anything you are experiencing. I hope you have had a safe and relaxing weekend. I am looking forward to reading your comments, which I will respond to 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

Few days left of Multiple Sclerosis Awareness Month

There are only a few days left of Multiple Sclerosis Awareness Month. March will be coming to an end, but unfortunately, those living with this illness still must endure the issues involved. There are always so many questions that come to my mind and none of them have any answers. Do I wish this illness had a cure? I would be lying if I said no because I wish with everything in me there will be a cure someday soon. Is this illness frustrating? Again, I would be lying if I said no because it is one of the most frustrating things in my life. Is there anything I can do to change things now? Of course, the only thing I can do is stay positive and take care of myself the best that I can.

There are many reasons Multiple Sclerosis is incredibly frustrating one is that I feel like I do not have control of it. Yes, I might have minor control issues. I like things to go according to a plan that makes sense and is clear. I hate not being able to control my body because of an illness that does not have a cure, yet. I do not understand why there has been so much research done and the only thing that changes is the medications being pushed out by the pharmaceutical companies. I know that many people in these pharmaceutical companies care more about themselves and their bank accounts than those living with this illness.

Another reason Multiple Sclerosis is extremely frustrating is that I must live in pain every minute of every day and that is exhausting! I woke up this morning with my back in so much pain it hurt more to lay in bed than get up but still was painful trying to move. Last night, I felt a migraine working its way into my head. The only thing I could do was go to bed and hope it would be gone in the morning. Unfortunately, the head pain was not gone, but it was slightly more manageable. Pain is awful to live with, but migraines are the absolute worst because it often feels like there is a sledgehammer pounding on my head!

Overall, I do loathe Multiple Sclerosis, but I know it could be much worse than it is. I guess there is a small part of me that is thankful for the type I live with. I do not and never will know what caused me to have this condition, but I feel like there must be a reason. When there are no explanations for things, I find it immensely irritating, and it makes me slightly angry. Considering I have always believed there is a reason for everything that happens in our life, I feel there must be a reason I have Multiple Sclerosis.

No matter how frustrating Multiple Sclerosis can be and how many times a day I want to give up, I made a promise all those years ago when I was diagnosed to my late grandfather that I never would surrender and would continue to fight. Sadly, I know there may come a day when I am unable to fight any longer, but that day will not come for many more years. I am far too determined to let anything, especially an illness control my life.

Thank you for visiting my site this afternoon. I hope you are having a lovely and relaxing day! I look forward to reading your comments and will respond as quickly as I can. The weekend will be coming to an end soon, so enjoy what is left of it safely! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

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

Good News, Finally!

Hello and welcome to Saturday! Hopefully, you will have a nice, relaxing, and safe weekend! There are so many challenging and disturbing things happening in the world today and unfortunately, many of these challenges feel like they will not end. Ukraine is still under siege, but the people are staying as strong as they can. I admire the Ukrainian people’s determination and their President’s strong will to stand for his country. We all need a leader that has hope, loyalty, faith, and strength in the country they represent. I know I have said this in all of my posts recently, but please continue to pray for those in Ukraine because they need as many prayers and hope as we can offer.

After several days of being stressed about getting the medication needed to prevent my Multiple Sclerosis from progressing, I finally heard from the Gilenya Go Program yesterday morning. I was terrified I was going to be forced to go without the Gilenya for an extended period, but thankfully I am going to be receiving it on Wednesday. Missing three days of this medication will not cause too many issues, so my stress levels have decreased somewhat. I am fully aware of how bad stress is for everyone, but it causes me to experience unwanted relapses.

What do you have planned for the weekend? As always, I do not have anything super exciting planned, but I will be working on the essay for the writing contest and the short story I have been working on. I also have a few posts that I want to finish before the weekend is over. I am wanting to finish the book I have been reading by one of my favorite authors, James Patterson. I find James Patterson’s writing to be inspiring and amazing. If you were able to meet one author, would you want to meet? I think it would be amazing to meet and chat with James Patterson because I would love to understand where his thoughts and processes come from.

Thank you for stopping by my site today. I hope you enjoyed what I have shared, and I look forward to reading your comments. 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

Frustrations of living with Multiple Sclerosis

Living with Multiple Sclerosis has been challenging and frustrating at times. Yes, the disease itself is painful, but many do not understand the symptoms and how they affect daily life. If someone does not have the disease, they are not able to fully comprehend what it is like to deal with the symptoms. Even those that are closest to me and see me daily but do not suffer with the consequences of the disease have a difficult time knowing what it is like to manage. Many people I meet would not even know that I have Multiple Sclerosis because I look perfectly normal, but underneath the mask I wear is a battle with my own body. 

When your body manages to attack itself and you have no control over the symptoms, it can be challenging to explain to others that do not understand because they do not have to endure the difficulties. It is not easy when you have no control of how your body reacts to the pressures in life or even to just being awake. I have said to some that they would not understand unless they could live in my body for one day, but most could not handle it well at all.

One extremely frustrating symptom is the constant feeling of fatigue. It does not matter what time I go to bed or how much sleep I get (which is normally NEVER enough), the fatigue issue consumes my life. I can say that it does get worse as the day progresses and by about 1:00 PM I need a nap, so by the time my husband is ready to have dinner and watch a TV show I am spent and exhausted. I have explained this to him numerous times, but it does not register to him, and he continues to want to have dinner and watch TV or a movie later at night. I guess I can understand this because he does work nights, but I still think there needs to be some compromise and meeting in the middle.

Another frustrating symptom is the never-ending pain. Being in pain 24 hours a day, 7 days a week with hardly any relief is not easy. I try to ignore the pain, but there are times when it is extreme and overbearing, and I am unable to ignore it. Pushing through the pain when it is at the worse and it is hard to stand, or move is immensely demanding. Heck getting out of bed when I know what the day holds, is aggravating and irritating. It is not that staying in bed would help much because just lying in the bed, I still hurt! 

The issue with neuropathy is also a challenge. The feeling of pins and needles or spiders crawling around on my legs and feet is hard, especially because NOTHING helps. I am already maxed out on the medication that is “supposed” to help so how can I have hope for relief, when the medication that should help the neuropathy is not helping? I know it is best to believe things will improve, but it has been many years of this, and it is not coming to an end.

Thankfully, even though I do experience dizziness frequently, I have learned how to cope with it. I have learned that when I do get a dizzy spell, if I focus on a still object, it will help to get the dizziness under some control. However, when it happens when I am driving, it can be a little terrifying, but then I will focus on the lines on the road and manage to stay in between the lines.

I am sure there are other symptoms are not easy to handle, but the one I want to mention is the headaches/migraines. Out of all the other types of pain I endure, this is probably the worst and the only one that will have me in the bed for hours or at least until it gets better. Most pain is something we can learn to deal with, but headaches/migraines I have not been able to learn to deal with and I have been experiencing these since I was a child. I guess when the pain is concentrated on the head, it starts to affect the way we think and communicate.

I know that stress is my biggest enemy and not a friend to the Multiple Sclerosis. The only thing that stress does is make any symptoms with MS more intense. Right now, I am trying to get my medication that helps keep the MS at bay but going through the process and jumping through all their hoops is stressful. This is a medication that without the Gilenya Go Program would cost about $8,000 per month and that is not something any normal person can afford. Unfortunately, I only have enough medication to get me through until Saturday and then I am out. This medication has done well keeping the MS under control and being off of it will only cause me stress.

Thank you for visiting my site today. I hope you found this post helpful with understanding the frustrations of living with an uncurable disease. This post was meant to be a quick overview of the complications of living with Multiple Sclerosis. I would love the change to read your comments and will respond to all of them as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

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

Midweek rain & pain

Happy Wednesday y’all! We have made it through the first half of this week, so we are at the halfway point. How has your week been? I hope you are having a great and safe week. The past few days where I live have had on and off rain, which always makes me feel worse than normal. Of course, when I look at the weather there is rain for many more days this week. The only thing rain does is make my legs and feet, back, and head have more intense pain as if I need any additional pain!

I was planning to do another post about March being Multiple Sclerosis Awareness month, but with my pain being awful I have not been able to yet. Even though I see a lot of rain for this week, I am hoping to be able to do at least one post to explain a little about what Multiple Sclerosis is. Without going into too much detail because my pain is that miserable, I will say one thing about MS, it is the most unpredictable, frustrating, and painful thing I have dealt with in life. Most days I do not get too upset about it, but on the bad days, it feels like a punishment for something I am unaware of.

Recently, I read something about Multiple Sclerosis being more about environmental factors and nothing about our genes. Considering there is not anyone in my family that lives with this disease, I am starting to believe that to be true. I do know already that certain foods increase inflammation and with that being a huge issue with MS, I try avoiding these foods. *I will be explaining this further in another post soon*. I also know for a fact that stress makes issues with MS a lot more intense because it has caused me numerous issues. Weather is another challenge with this mean disease. With all seasons and temperatures changing, my body feels it and does not adapt quickly. Even though I enjoy the sound of rain when I sleep, rain has become one of my enemies!!

Thank you for visiting my site today. I am sorry I was not able to do a more thorough post regarding Multiple Sclerosis Awareness Month, but I do promise I will do one before the end of this week. I hope you are doing well and having a lovely week. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Pain & Neuropathy

Over the weekend, I was experiencing a lot of pain in my legs, feet, and back. This is nothing new, but it was so intense it was hard to get comfortable. At one point, I was so distraught about this pain I asked my husband, “What in the world could I have done so wrong in life to deserve this pain?” Of course, my husband was trying to help make me feel better and told me I did not do anything to deserve the pain I live with. The same as my grandfather did when I was diagnosed with Multiple Sclerosis, my husband told me how strong I was and even though I should not have to deal with these issues, I could conquer them all and he was there to help me in any way he could.

Unfortunately, when my pain gets too bad there is not anything anyone can do to ease it. It is frustrating when nothing helps, and all tears do is give me red eyes the next day. I cannot even say if the pain or neuropathy is worse because they are both miserable. Maybe it was silly of me to think I did something in my life to deserve the pain and neuropathy, but why else would this happen?

I do know that stress only increases pain and I think it increases neuropathy issues as well. The bad thing is they both make me stressed because I want it to end so badly and cannot find a way for it to STOP! My levels of frustration and disappointment can become so out of control, being logical is a foreign topic that seems so far away.

I would say it is unfair to have to endure pain and neuropathy, but it could be worse. I know others are dealing with much more and I should not complain. It takes a lot for me to complain because it does not change anything, so I do not see a point. I know stress is a HUGE cause for symptoms to increase, but it is also incredibly defeating when there is NEVER any relief. Even the strongest people in the world need a break sometimes!

Thank you for visiting my site today. I hope your weekend was wonderful and you have a great week. I would love the chance to read your comments and will respond as quickly as I can. Please never forget I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Appointment Update

I mentioned this morning that I had a follow-up appointment with my neurologist and that I would share how it went. The appointment was at 9:00 AM, so I was their first appointment of the day. I do prefer early morning appointments because we all know how doctors can fall behind in their schedules. The drive to the office was insane, but that is because people have seemed to forget how to drive. Honestly, part of this was my fault because I was trying to follow the GPS to get to the office, and guess I was paying closer attention to the GPS and did not realize the other car did not have a stop sign. I did not cause an accident because I saw they did not have a stop sign and even though I was inching my way through the stop sign, I did stop. With how much people love to lay on their horns, the car did not do so.

The appointment went just the way I thought it would and was easy. The Nurse Practitioner did try getting me to agree to another kind of medication for the neuropathy I told her was causing issues, but I quickly shot down the other medication because I have tried it before and did not like the way it made me feel. Thankfully, she did not press me on this and said if I change my mind to let her know. She asked if there had been any changes or concerns, which is why I mentioned the neuropathy, and other than that nothing has changed. I told her what medications I was going to need to be refilled, and she made sure to get them refilled for me.

I hate going to the doctor, but the one great thing about this office is they are very responsive when I send messages to their portal. As with many other doctors, I never have to wait for a response, and they handle everything quickly. Something I learned today about my neurologist is, she loves purple and butterflies, which both I love as well. I will always miss Dr. Kaufman and his Nurse Practitioner, but I guess this office is the next best thing!

I hope you had a great Monday, and your week gets better with each day that passes. Surviving Monday is great because that means the rest of the week will be a walk in the park. I know we all want COVID to end, but sadly, it has not yet, and we still need to be extremely cautious. It is sad and frustrating, but we will make it through this together. 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