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

~Motivational Monday~

I am always surprised at how fast time flies. Today is the first Monday of May, which means we are almost halfway through this year! I think we have all heard people say the time goes faster the older we get, but I prefer to not think of myself as old, yet. I do try to view age as just another number because that is all it is. Yes, it also shows how long we have survived this insane world, which can be considered a success because we are all living in a crazy world!!

Hopefully, we are all prepared for another LONG week of work because ready or not it is here. I am as prepared as I can be and also hoping it is not as bad as last week was. In preparation for the week, we must find ways to stay motivated and optimistic! I find the quote I am sharing with y’all today encouraging, motivating, and positive, but I hope you will as well. I can be hard to recognize our strengths at times, but we all have a powerful strength inside us😊!

I hope your weekend was filled with everything that brings you happiness. Most of the time our weekends are so short and to the point, it feels we did not have one, but we will have another in a few days! I did not do much over the weekend because I was not feeling well. I know a lot of why I was feeling so awful is because I did not get much sleep at all. The feeling of weakness and exhaustion are a terrible combination.

Thank you for visiting my site today. I hope you enjoyed what I have shared and the quote offered you some motivation. I looked 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

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

Survival of Monday

We managed to survive Monday, which is great news! Once we make it through a day we all dread, the rest of the week “should” be much easier, or at least we hope it will. Yesterday was nothing short of insanity. I clocked into work at 7:24 AM for two reasons. One was because I had a doctor’s appointment and was going to make up missed time because of the appointment and the other reason was because of the overtime offered. Normally, my day does not start until 9:00 AM, but I do prefer beginning my day earlier because I feel better in the morning. I am not saying I am not tired in the morning, but my pain increases as the day progresses.

Something about yesterday that could have been better is, if I had known about the overtime, I would not have wanted my doctor’s appointment this week. I would have tried to reschedule, so all I had to deal with was the overtime. My doctor’s office is about an hour and a half away from my house and I have to drive on an interstate that has WAY TOO much road construction. The road construction has been going on for what seems like a decade and I do not think it will ever end. Driving is bad enough, but so many people like to either drive fast while texting or so slow a snail could pass them.

On the second day of the week and still having several more days before Friday, we could all use a little encouragement to help us through the week. Life can feel extremely demanding and stressful making it hard to deal with the numerous situations we face. Trying to remain calm, cool, and collect is challenging, but we need to always keep trying and never give up. I will be honest with y’all, I stress about everything and it does not help. All the massive amounts of stress do is create additional issues!

Thank you for visiting my site today. I hope your week is going well and you are staying safe, and as stress-free as possible. I still think this is going to be a long week because I will be working ten hour days, which I have not done in a long time. I have gotten older since I worked ten hour days and my ability to avoid fatigue has become obsolete. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Sunday, preparing for next week

Many people do not understand how changes in the weather affect others because it might not have any negative effects on them. During the winter months, the cold weather causes me to tense my muscles more, which causes additional pain. Then during the warmer months, the heat causes several other problems that are uncomfortable to deal with. It never fails when the weather changes with the seasons my body takes time to adjust. It does not just take a few hours to adjust, it can take weeks to adjust until I begin to feel semi-normal.

Currently, the temperatures change daily, and this is not easy for me. Last week there were a few days when the temperatures were mild but rainy. Rain causes increased pain issues, but I can deal with them for the most part. On other days the temperatures were extremely uncomfortable because it was too hot. Unfortunately, next week several days the temperature is going to be pushing 90 degrees, which is far too hot for April.

I have learned how to tolerate different weather better since being diagnosed with Multiple Sclerosis over 20 years ago. I will not say it is easy but decided to not let the weather and the MS control my life. I know life is short and feel strongly we must learn to adjust when things get difficult so we can enjoy life to the fullest.

Do you begin to feel different during the different seasons? If you do, how do you manage? Unfortunately, it is only April and we have not entered summer yet. There is no preparing for the ridiculously hot weather, but I will do my best to not be outside in the hot weather. Like I have done previously when I need to leave the house, I will start my vehicle ahead of time, so it has time to cool down before I drive. I already have dizzy spells randomly, but when I am overheated the dizziness is much more intense.

This weekend I have tried to rest and recuperate from last week as much as possible. I can admit that I have not gotten as much sleep as I would have liked, but I did try. Next week is going to be busy and possibly more exhausting than last week was. I have a doctor’s appointment tomorrow afternoon and will need to miss a few hours of work but will be making the time up. I am also planning to work two hours of overtime each day.

Thank you for visiting my site today. I hope you were able to enjoy your weekend. Thankfully, the weekend is not over yet and we have a few hours left to rest or do anything else we desire. I look forward to reading your comments and 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

Finally Friday and time to let go

Thankfully, it is finally Friday. This week has felt long, and I never thought it would end. How has your week been? To say the week has been stressful is an understatement, which has only caused my normal pain to increase drastically. I am hoping for a restful, calm, and relaxing weekend because this pain needs to lessen. Originally, I was told my work hours were 9:00 AM -5:00 PM with a 30-minute lunch. I learned on Tuesday that was inaccurate and I am to work 9:00 AM -5:30 PM with a 30-minute lunch, which is better because that will be 40 hours.

Now that it is finally Friday, we need to let go of the frustrations and negativity the week caused so we can enjoy the short weekend. Our lives do not always end up the way we thought it would, so we need to try enjoying the life we were given. We are only given one chance at life and no matter how challenging it gets, this life is a blessing. I hope you were able to see the meaning in the quote I shared with y’all today and it provides you with hope for the future.

Do you have any plans for your weekend? The only plans I have for the weekend are to do nothing and relax because this week has left me exhausted. There were a few days I was so overly stress and frustrated I had no appetite at all. I know the ways to stay healthy are to eat a well-balanced diet and get plenty of sleep, which is what I intend to do next week.

Thank you for visiting my site today. I hope you had a good week and it was not full of stress. I hope you have a safe and enjoyable weekend. I look forward to reading 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

Defeat Tuesday

The weeks can feel extremely long and strenuous. We typically prepare ourselves for Monday on Sunday evening because we understand they can be very demanding. Honestly, not every Monday is as bad as we think it is going to be and some are worst than we were expecting. Whether it be Monday or any other day of the week, sometimes there is no amount of preparation that can help us be ready for the days ahead of us. No matter what happens, we should never give up and should always try to see the positive in all situations. I believe a positive mindset will keep us healthier and happier rather than being negative.

Yesterday felt like a train wreck and I believe it had a lot to do with getting too little sleep. I knew it was going to be a rough day because if I had to guess, I might have slept for four hours. By the time we ate dinner, finally got my work monitors set up correctly, and cleaned up, it was close to 2:00 AM and I normally get up a little before 7:00 AM. Knowing I would be exhausted, I tried giving myself a few extra minutes of sleep and pushed the alarm back to 7:30. I still felt foggy, irritable, achy, and distracted all day, which made for a long day.

Besides being overly tired and achy all day yesterday, I was dealing with other frustrations. No matter how many times in our life we deal with challenging and frustrating times, it never gets any easier. While life was never meant to be perfect and easy, we must NEVER let go of trying to think positively and NEVER give up. We were all dealt a hand of cards when we were born, and we are forced to keep playing the game of life and not fold. It is so easy to feel like we cannot handle life anymore and give in to those awful negative thoughts. The only thing a negative mind will do is make everything worst.

I am not going to tell y’all that remaining positive during challenging times is easy because that would be a lie. The only thing negativity will do is make you feel empty. The life we were given is a gift and viewing everything as negative makes us take our life for granted, which tends to be selfish. There are so many people every day that lose their life and through NO fault of their own and they would all love another day to enjoy their life.

Thankfully, we have survived Monday and hopefully, every other day of this week will get easier. I understand more than I care to admit how unfair life can be, but through all the unfair things we have endured, we are stronger than we realize. We all have a strength inside that is powerful. When you start thinking you cannot deal with anymore, remember what you have already accomplished in life and hold your head high!

Thank you for visiting my site today. I hope what I have shared was beneficial for you and you are feeling better about life the way it currently is. Understanding what we have control over and what we have no control over, is a valuable lesson to learn because it will make things easier. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Pick-Me-Up-Thursday

Happy Friday Eve! Some people think of today as Thursday, but that just makes the week seem longer to me. I think Friday eve makes the week feel a little shorter. This has been my second week back working full-time. Working full-time and learning something new has been exhausting. I know in time what I am doing will feel like second nature and easy, but right now there is SO much to learn. The weather today will not help me feel more alive because it is going to be raining. I know we need rain for life to grow in nature, but it makes every part of me hurt twice as bad.

We have almost made it through the week and the weekend will be here soon, but we do have one final day to survive and I think we could use a pick-me-up! I hope the quote I am sharing with you will offer you the pick-me-up needed and a little inspiration! With everything we deal with in life, it is not always easy to be strong. However, the stress and challenges we face are not going to last forever and there will come a day when life is easier! Keep your head held high and keep fighting because better days are ahead for all of us😊!

I am doing my best to fight through the fatigue I feel and do at least one post each day. I think it makes it easier because I enjoy writing, so it gives me the inspiration to push forward. Once I clock out of work, I do need to take a break from the computer and the cats need attention. It makes me smile😊 when they are so happy to see me and act like they have not seen a human in decades. They might be a little dramatic😊!

Thank you for visiting my site today. I hope the quote I shared lifted your spirits and helps you survive the last day of this week. 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

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