More talk about MS!

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ms march awarenessMultiple Sclerosis is a very complex and frustrating battle to face. Unfortunately, this illness does impact everyone’s life in  so many different ways and to the point it’s almost hard to pinpoint what is what! There have been various names people choose to use when referring to  MS; such as the snowflake disease or invisible illness. I think these terms can also be used in many other chronic illnesses as well because they are fitting. I mean if you think about it, there are no two snowflakes that are exactly the alike,  just like no illnesses experiences the exact same symptoms. Also, there are so many of these illnesses that are completely naked to the eye, so they are pretty much invisible in the bigger picture. 51209211_2039825619447292_5206443739896197656_n

Let me ask my wonderful fellow bloggers, whether you live with MS or know someone else that does, what do you already know about this not so fun illness? Honestly,I think the only thing everyone knows to be 100% true is this illness can vastly differ for each individual! There might be times throughout the years each person with MS will unfortunately have a new symptom emerge and they need to learn to cope with this. While no one wants to deal with anything additional and all symptoms can be daunting, there  really are always ways to carry on with life!

symptomsI know there may be countless responses to this, but what are your top 5 most challenging issues you have been forced to accept during your journey? One thing I find very challenging and the most aggravating is how completely unpredictable this illness is. I have and probably always will be an obsessive planner! It drives me crazy for any unplanned issues to appear without any warning! Over the years, I have learned to expect the unexpected and be willing to rearrange my plans.

Another part of my MS life I find challenging, but am learning to accept is there are th-26-300x111NEVER any real answers for the numerous questions I ask my doctor. I would have never thought my questions were so difficult that my specialist can’t answer them. I mean these doctors go through enough schooling they should have a wealth of knowledge to match this. I am sure the schooling for many years is very expensive and probably more money than I will make in MANY years! Maybe while in school they should have a class in good bedside manner because most neurologist have a terrible personality. I think they have a godlike and ego maniac demeanor. 

flat,550x550,075,f.u4The third challenging aspect of this life that I have almost accepted is, the complete ignorance and total lack of empathy most people have for others. The ugly glances and degrading comments I have seen and heard over my years, especially when I park in a handicap parking space are nothing short of hurtful! Even though I have lived with this for many years, these glances and comments still can bring me to tears. This really doesn’t have anything to do with me, but is all on them! These people probably believe that misery loves company and try to bring me down to their level, which I try to avoid!

It doesn’t matter how long I have struggled with this illness, fatigue still tries to kick my Worst-MS-symptombutt daily! It was always complicated for me when I was working full-time because it never failed at about 1:00 or 2:00 if I am lucky I was exhausted! I have accepted this issue and try my best to conserve my energy so I am not ready for a nap at lunch time!

Lastly and to keep this from being too terribly long, the final challenging thing for me to accept is the constant pain I feel. It often seems like I am going to always to battle with pain and with little to no relief. I do know that dwelling on this pain only causes the pain to worsen instead of lesson and this just  isn’t an option for me! I do try focusing on the positive in my life instead of the negative hoping these thoughts will trick my body into healing! I also believe acceptance is half the battle and laughcan help keep my stress in check which will in-turn lessen the pain.

I would like to thank y’all for stopping by my site today. I told y’all on March 1st that for MS Awareness month I wanted to shed more light on this illness because knowledge is power! I am looking forward to reading your comments and do hope this was helpful for you!

I hope you have had a good week and of course hope you are feeling well. The weekend is finally here and  I hope you enjoy every moment of it! Please never forget that I am always sending y’all LOTS of love ❤, comfort and  many positive vibes!

My signature heart

❤Always, Alyssa❤

34 thoughts on “More talk about MS!”

  2. Knowledge is definitely power, I agree! As I had mentioned before, Selma Blair touched on MS because of her own diagnosis. And it did open my eyes to this illness. I don’t personally battle with MS, mine is Chiari 1 Malformation and Syringomyelia, and as you mentioned they’re invisible illnesses. The symptoms are somewhat alike.
    Oh and the handicap parking, I get that too, the dirty looks from people, people just watching me. What they don’t know is a lot, and the ignorance is what they all have in common.
    And the naps! Lol Alyssa by 1pm my body is shutting down and no one understand the need that we have for a nap! It takes over my body, I can’t explain it. And no one outside of us, gets it. My husband tries to understand the need for me to sleep, but that’s it, he tries.
    Such a lovely post, what you’re doing here is amazing. Continue to shed light on MS, it is needed. 😊🙏🏽

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    • Thank you so much for reading and making this fantastic comment! I am sorry for my late response, unfortunately the mean stomach bug came back to visit me
      I am glad Selma was able to let you see how difficult it can be. I do hope with her sharing her diagnosis helped others see what this illness is/
      I swear I never used to be one to take naps and couldn’t ever sleep in. Now, I still do not sleep too late, but end up taking unexpected naps in the afternoon when I am home.
      I am really happy to know you liked this post. It is a little hard to write too much about what this illness is capable of, but I do believe it is needed. I hope you are feeling well and you had a lovely weekend!

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  3. I wish that scientists would work to find a cure for all medical problems instead of worrying about sending a man to the moon … everyone rejoiced on this latest moon expedition … find a cure for cancer, or MS, or Alzheimer’s … that would be an accomplishment!

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    • You took the words out of my mouth! Sending a man to the moon, or so they say they are spending money on, should be low on their list of what needs to happen! I don’t mean to sound so cynical, but I do believe they have ever sent a man to the moon. If only they would use money they claim to have, to find cures for all these illnesses that cause so much harm to people’s lives!

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      • My mom said that for years and I have agreed and you agree … there is no way anyone will live up there, not in our lifetimes, nor the next generation’s lifetimes, and I am cynical about just how far life on earth will go. We have global warming and weather that gets more abnormal and violent as the years pass. All are not good things … find a cure for illnesses that have no cure so people will not fear such diagnoses. Be the next Jonas Salk and find a cure for polio – no, they waste their time on the moon. I have no words sometimes.

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  4. Also, it is despicable people have to make an issue about you parking in the handicapped parking area. My mom used to say that they should be grateful for two healthy legs to get around before making comments or giving dirty looks. Yes, we got them as well. My mom was on a cane the last 8-10 years of her life and then we got a portable wheelchair so we could go to places like the mall so it was easier on her than walking with the cane.

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    • It is very despicable for the way people behave. The comments I have gotten have been horrible and takes a lot of inner strength to not make a smart, yet mean comment back to them. I just do not want to be on their level because it just isn’t in my nature to be mean to anyone.

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      • You are right not to stoop to their level Alyssa – it is beneath you to do so. I have no idea what makes people tick sometimes. All I have to do is read the comments on any social media news site to leave me shaking my head sometimes.

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  6. Well done Alyssa. You are doing a great job raising awareness of MS. Keep up the good work. Diid you make that wordle? I might have to re-blog your posts since March is awareness month for MS and also autoimmune awareness month, only thing is my new website doesn’t let me do that. Many of those symptoms you experience I also experience and I’m sure many with a neurological or chronic conditions. I especially can relate to the fatigue. I love the everything has beauty but not everyone sees it quote.

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    • Thank you so much! Please feel free to reblog anything I share. I think the more people that read what I am sharing regarding MS, the better! I hate that you experience some of the same issues that I do. Fatigue is so annoying and difficult to deal with!
      How have you been lately? It seems like it’s been a long time!

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  7. Alyssa, you are a ray of sunshine. It’s been three years since my oldest baby, my son, was diagnosed with MS. I know he experiences extreme fatigue. His balance is often off. He has trouble focusing. His goal this year is to push himself to read a certain number of pages or books. He once was an avid reader, but MS has changed that. I don’t know if you’ve read his blog posts but they are thoughtful and positive, much like yours. 💛

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    • Thank you so much! MS is a tricky thing and it seems like things are constantly changing. Don’t put too much stress on yourself to learn more about MS because you don’t want wear yourself out too much! When I was first diagnosed the only person I knew with MS was my biological father’s wife, but now I meet many people that either have MS or know someone with it.

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  10. Such an insightful, brilliant post Alys! It made me chuckle when you said how “while in school they (the specialists) should have a class in good bedside manner” – I think a lot of doctors, nurses, specialists & surgeons need this class, pronto!
    As with other conditions, there are so many symptoms, so much variation as to how each individual is effected (as well as how personal circumstances are different so even if they’re the same level of symptoms we’d all manage them differently anyway), the degrading comments, the ignorance around it all. It’s people like you who help raise awareness, show others they’re not alone, and make such a positive difference in the fight for change.
    Caz xxxx

    PS. Just to check, you don’t have a FB page for your blog, do you? x

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    • Thank you for your kind words Caz! I wonder if these specialists and nurse ever knew how to be kind and treat patients kindly. I feel like I have been trying for 18 years to raise awareness about MS, but so many don’t care to listen. I really do always appreciate the words you share Caz! I so have a FB page, but it isn’t connected with my blog. I am hardly on FB. I hope your weekend has been lovely!!xxx

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  11. Thank you for sharing your insights. I am just in the process of diagnosis and it’s really overwhelming. I just started a blog and I’m hoping that I can connect with others through it. I am just so thankful to have a doctor finally take me serious, this has been a 20 year journey for me. I think it’s great that you are sharing this information.

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    • You are more than welcome! I know how overwhelming things can be when you are first diagnosed. Just try to find time to catch your breath and relax. Please know if there is anything I can do to help you with this new part of life, I am happy to do anything to help!!

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  14. Nice post, Support a shared story from a woman that lives with MS & shared a brief story of her life… Come check out this great, Real Life Post about an inspirational woman who fought her way through struggle, against health issues, marital troubles all with continued faith. Her story is shared here in this link below. Please if you have any understanding of what she has been through or have experienced anything similar comment below the blog post and show her the love!!! Let her story inspire your faith and confidence that you to can survive and reach greater height regardless of what holds you back. #strongwoman #strength #ms #survival #faith #struggle !#divorce #family #love #happiness #life Feel free to share to your friends as this story is meant to inspire other’s through their hard times😁💖!!!

    https://crazybeautifulvibes.blog/2019/07/31/rocky-path-survived-with-faith/

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