Living life with a chronic illness is definitely not easy. But I do my best to push through all the barriers this illness puts in front of me! In my heart and mind, I believe maintaining a positive outlook on all situations in life will carry us through to much better times! I hope you find the information that I provide both helpful and inspirational!
Most of us had Monday off from work, which made Tuesday feel like Monday on steroids! I do hope y’all enjoyed the long weekend and yesterday was not too crazy busy! For some reason, for me at least the short weeks always feel much longer. Yesterday was a crazy busy day at work, which I do like because it makes the day go by faster. Something good that happened yesterday for me was, that I received my 5th shout-out for doing a great job at work. I am sure we can all admit this, but praise does not happen often because people complain more than appreciate.
I think during the week we need to stay inspired. If we could learn to be inspired by our life and those around us, we could spread this to others to make the world a better place. I found the quote I am sharing with y’all amazing and inspirational because life does seem like a river. A river continues to flow and it never goes in reverse. Forgetting the past is important and focusing more on the future is crucial. We must learn from the past, but never stay stagnant in the past so we can move forward to a future filled with many opportunities. There is a lady I work with that has an amazing outlook on life and she always tries to spread this to all of us, which I appreciate.
During the week we must stay focused on our goals. We are the only ones that can achieve what we aspire to do, no one can do it for us. Do you think about your goals at the beginning of the week and plan things out or do you just fly by the seat of your pants? I always have a plan for things and a backup plan, but then also a backup plan for my backup plan. Things can always go wrong, so I think it is better to stay prepared!
Thank you for visiting my site today! I hope you enjoyed what I have shared and you found the quote meaningful. I hope your week is going well and you are staying stress-free. I look forward to reading your comments and I will respond as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
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!
The truth is, we all have bad days that can turn into a bad week. Unfortunately, last week was one of the worst weeks I have had in a long time. I was thankful for the week to end, but I am still struggling to forget and let go of all that happened. It is not easy to let go of things, even after you take full responsibility for your actions. Guilt and frustration can be consuming and almost make you feel like you are drowning.
After my fall on Tuesday evening, the week seemed to spiral out of control into nothing positive. The fall was terrifying and I should have done things differently than I did. I knew I was having dizzy spells and should have gone to bed instead of trying to do anything else. I know from past experiences what can happen if I continue to push myself when I feel dizzy and yet, I did not do what would have been logical. I have lived with Multiple Sclerosis and the issues that come along with it for over 20 years, so I know better than to keep pushing when things such as dizziness arise.
Another issue I should have recognized is that I was not allowing myself to get enough sleep. When we are sleep-deprived, things never go well. Our behaviors and way of thinking are compromised, which causes other awful things to occur. I had been pushing myself so much with my new job and allowing myself to be drained by stress and for what? I know that I am still new with this job and learning more daily, so allowing myself to be swallowed up with stress only creates more issues and my health to deteriorate.
Thank you for visiting my site today. I hope you are enjoying your weekend, relaxing, and doing what brings you joy. I am using this weekend as a time-out to recuperate and refocus because I know that is what I need. Life is too short to spend it stressed, especially because of a job. I am looking 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!
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!
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!
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!
Although I may never understand why certain things happen in life, there is a huge part of me that believes there are signs behind what occurs in life. Maybe there are signs that we are sent from a spiritual place or from a loved one we have lost. I am aware that not everyone believes in signs because that is something my husband and I disagree on and that is okay because everyone is entitled to their opinion.
I remember when we were relocating to another city and state a few years ago and I had just finished an interview, which I was not certain about. A beautiful butterfly flying near the car and landed on my window. She stayed there for a short time, showing off her vibrant colors. I have always loved butterflies and thought they held a powerful meaning. I viewed this encounter as a sign the job and the move were the right decision and things were going to work out beautifully. I thought this sign was from my late grandfather watching over me and ensuring life was going well.
Before the encounter with the butterfly, I have always viewed visits from them as a sign from somewhere above. After my late grandfather’s funeral and I was back home on my lunch break at work, which I took outside on nice days to get away from being trapped inside, the same butterfly or at least I thought it was the same butterfly came to visit me every day on my lunch break. Considering how heartbroken and lost I felt after this loss, I viewed this butterfly as my grandfather coming to let me know he was doing well and to continue living my life until we met again. This might sound delusional, but this butterfly offered me comfort during a tragic and painful time in my life.
Recently, I experienced something I feel is unusual. While I was working at my previous job, which of course, was at home I had a daily visit in the window above my desk. This visitor was a small, adorable bird called the Ruby-Crowned Kinglet. He always flew outside my window, kind of hoovering within my view. He seemed to be almost showing off, trying to get my attention and more so on a bad day. During the unpleasant Zoom meeting in December when I was laid off, the little bird stayed in the window for a while showing off his flying abilities, which brought me some joy during an upsetting time.
Out of pure interest and curiosity, I have looked up the meaning behind a visit from a butterfly. No to my surprise, visits from butterflies means angels are approving your actions and you might be on the right path. This can also mean that the angels are guiding you through life. This makes perfect sense to me because I am confident saying my late grandfather is my guardian angels that is always watching over me and carrying me through most struggles in life. Even to this day when I see a butterfly, I feel my grandfather’s presence nearby.
Again, purely out of my curiosity, I had to know what the sign was from the Ruby-Crowned Kinglet. Sure, enough there is meaning or a sign behind them. The spiritual meaning for the Ruby-Crowned Kinglet is fearlessness and calm, which is exactly what I needed the day I was laid off. The amusing part about my Ruby-Crowned Kinglet friend is even when he is not seen for a few months, he always returns and puts on a show by doing his little dance in the window.
When I was younger, I thought when the clocked showed “11:11” you had to make a wish. I did this for years, but when I looked this up, I learned something slightly different. The numbers 11:11 still appear to be a good sign because they are angel numbers. These angel numbers can suggest new beginnings and possibilities. It may be good to pay close attention when these numbers are seen because your guardian angels are attempting to reach out to you with positive energies. These angel numbers can also be interpreted as a sign from the universe guiding you to focus on someone or something.
Is there anything that you believe is a sign and if so, what is it? I know there are many more signs other than the three I mentioned, but I did not want this post to be too lengthy for you to read. I do believe signs can be extremely powerful but also understand some people believe these are merely coincidence. However, I do not think things happen by accident or coincidence and believe everything happens for a reason.
Thank you for visiting my site and reading this post. I hope you found this post interesting and maybe you believe in signs as well. Monday is never an easy day because we are letting go of the weekend, but hopefully you have an amazing week. I am looking forward to reading your comments on this post 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!
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!
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!
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!