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

How to have a productive conversation

Most of us have either heard about or read John Gray’s book “Men are from Mars, Women are from Venus”. Of course, the author was not being literal with the title, but using it as a metaphor. Men and women have several similarities, but also have numerous differences. I do think if we all behaved and thought the same, the world would be an incredibly tedious and dull existence.

The ways men and women communicate with one another, family, friends, co-workers, and anyone else they meet are distinct from each other. The unique way our minds are wired typically makes women want to talk and men want to act. Understanding the ideal and most effective way to communicate with the different sexes, will help create a healthier relationship.

In the rest of this post, I am going to share several ways to communicate with men. Honestly, when we comprehend the fact, our brains are wired differently, we can approach our interactions appropriately.

One of the most important things to do when communicating with a man is, be direct. Make them aware you have something important to talk about. Do not beat around the bush and be sure to have their undivided attention. The truth is, women have an increased level of concentration in the parts of the brain responsible for language and memory.

Another easy, but necessary thing to do is eliminate all distractions. Simply put, women can multitask, and men struggle to multitask. You cannot expect to have a good and meaningful conversation with a man that is watching TV, listening to music, or reading a book. It may be beneficial to move the conversation to a room that does not have any distractions readily available. You want to be sure you will not lose a man’s concentration with anything that will entertain his mind.

Avoid starting the conversation by placing blame on him. For instance, beginning the discussion or at any point saying something that may be perceived as an attack will not usually work well. As opposed to saying, “You never listen to me”, try starting with positive comments such as “I know that you care” or “I know how much stress you have been under”. Simple things like this can open the lines of communication and prevent any hostility.

It is important to be upfront about what is needed from the conversation. Men are typically problem solvers and women often want to vent about their problems or simply talk through potential solutions. Before the conversation goes too far, it is essential to express exactly what is wanted from the conversation.

Research has discovered that men can easily misread body language and recognizing facial expressions is not easy for them. Getting upset and asking yourself, “Why do I have to ask him to take the trash out?”, will not solve anything. Keep things easy and say exactly what you mean and need. This means, come right out, and ask him to do what you want him to do.

Remember to remain focused on the current situation. Research has suggested women have extra blood flowing to the parts of the brain responsible for storing and retrieving past situations. What this means is it is easy for women to bring up the past, which will destroy the chance of any productive outcomes.  It is critical to resist the urge in the heat of the moment to mention past situations.

It is not easy when something is weighing on your mind, but it is extremely important to not talk for too long. Men tend to have lower stamina and patience than women do for prolonged conversations. During these conversations, pay attention to signs he is getting bored, or his patience begins to run low. It is counterproductive to push the conversation past a certain point. To be sure you have a productive conversation with minimal frustration, it may be helpful to take breaks and have a few short discussions.

Conversations with men do not have to be complicated. We can all interact with each other and keep the peace. Considering women are initiative, they can sense when a man is not paying attention or getting too agitated and can walk away for a while. Taking your time with conversations that are important will be productive in regard to the situation at hand, but also make the relationship stronger.

Thank you for taking the time to visit my site today. I hope the information I have shared was helpful. I would love the chance to read your comments and what you think. I hope you have had a nice, relaxing, and safe weekend! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa