Life with an Invisible Illness

Alyssa says she’s honoured to guest post on my blog but I feel like I’m the one honoured to have her guest posting. Her attitude with her hard fought battle against chronic illness inspires me, helps keep me going and makes me smile. Welcome Alyssa from https://fightmsdaily.com/about-me/  I’m so happy to have you here. I’m sure you will enjoy her posts as much as I do! Don’t forget to drop by her blog! Just hit the green link above. – CrankyPants


I feel so honored to have been asked to do a guest blog for Cranky Pants! I am excited to be able to share my experiences on another blog with hopes that how I deal with my illness will be helpful to others.

Invisible-Illness-AwarenessLearning to master the art of living with a chronic but invisible illness can be fairly difficult at times. I was rather young when the doctor told me that I had Multiple Sclerosis. At 19, I was shocked, terrified and confused because I had only known one person with MS and she was my father’s wife, we are NOT related by blood! All I could think at the time was that I was too young to be diagnosed with a debilitating illness that did not have a cure. I was convinced that I would be in a wheelchair before my 25th birthday and that my life would be over!

It has been almost 17 years since I was diagnosed and I am still alive and walking without assistance! I have had many setbacks over the years, but do find it important to hold onto positive thoughts because the negative will only destroy passions for life. Once I started accepting my diagnosis, I promised myself that I would never allow MS to control my life but that I would control the illness!

In the early years of coping with this illness, I felt shame and did not want anyone to know what I was faced with in life. I felt that people automatically judge others that have a disability, even if it is not really seen! I never wanted to talk about it with anyone and kept all my feelings bottled up inside and choose a bad way to handle my emotions. I started drinking more than I should have, especially because alcoholism runs in my raise awarenessfamily. I thought that if I was drinking, I would not feel the pain and sense of loss of my normal body. My issue with alcohol only continued for a few months and I ended up catching myself going down a really bad road. I think it is normal to try to find an outlet from our struggles and sometimes they are really bad choices. But even if you fall down a bad path, you can correct the issues with strength and courage. I am sharing this to let people know that no matter what you struggle with there is always a way to make the wrongs right again!

Life comes with so many twists and turns through the years that it can get so frustrating. However, I am a strong believer that everything happens for a reason and somehow what is meant to be will be! For some unknown reason, I am the only person in my family that has to deal with MS. I thought maybe it is because I do have the strength to I willfight fearlessly and never give in to the relentless challenges I have to overcome. Or maybe I was dealt this hand in life because I can actually help others battle their struggles incessantly. Who knows? But I will continue to fight until my last breath because we all have only one shot to live our lives the way we want to!

I sincerely hope that you have enjoyed reading the shortened version of my experience with the invisible illness I have been plagued with in life. I hope you can feel in this blog how hard I do fight for my wellness and that I have the determination to win!

Love 2

 

Always, Alyssa

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Rheumatoid is not Arthritis but a Systemic Disease

Please share this post if you will.

Most people when they think of Rheumatoid Arthritis think of arthritis. It’s not. It’s a systemic autoimmune disease that causes arthritis and..A whole lot more. It attacks the heart, the lungs, the eyes. You name it in our bodies, it can be attacked. Most people in the world and in the medical world don’t know this.

If any of you are living with this or any autoimmune disease (Most will have more then one) you will already know that you will be seen as a hypochondriac often. When you list all you’re going through to a doc, you will hear things like, “That’s not my department.” I’ve heard that one often. Well in reality it is their department when they are Rheumatologists, and Rheumatoid affects more than your joints. Much more.

I follow another site called Rheumatoid Warrior. This lady lives with RD. She’s written a book on her experience with this battle. It’s free on Amazon today. I’ve started reading it and wow! It sure makes me not feel so alone in this.

Her website has tons of stories of what people have battled beyond the arthritis part of this disease.  RA Warrior is fighting to have the name changed to Rheumatoid Disease rather than Rheumatoid Arthritis. It’s so misunderstood.

Here is the link to the book she’s written. https://www.amazon.com/Rheumatoid-Arthritis-Unmasked-Dangers-Disease-ebook/dp/B074CLX8TT/ref=sr_1_1?ie=UTF8&qid=1509374704&sr=8-1&keywords=rheumatoid+arthritis+unmasked

I’m not being paid in anyway. I’m just bringing some awareness and help where I can, since I feel very alone in this battle. 

I would love if any of you reading this would list the symptoms you have that you may find strange. They’re likely related to autoimmune disease. Here are a few of mine to get you started.

  • Trouble breathing and or asthma
  • Raynauds (Circulation is cut off in fingers, toes, nose/ears) 
  • Brain fog- trouble finishing sentences, bad memory
  • Painful tongue/swollen taste buds
  • Red burning blushing face (Not skin, nerve related)
  • Fatigue that’s more extreme then a normal tired
  • Epilepsy
  • Interstitial Cystitis (Have since lost my bladder)
  • Gut issues
  • Dry eyes/mouth/nose
  • Mouth sores
  • Fevers
  • Infections out of nowhere
  • Terrible joint pain/swelling/redness (Feels like joints are badly sprained)
  • Migraines
  • Auras 
  • Rashes
  • Extreme itchiness without a rash
  • Kidney or other organ involvement
  • Restless leg syndrome

These are just some of what I battle not all at the same time. Some things will come and go. Some will come and stay. Some start slow and progress over time. This disease is relentless and deadly and so very misunderstood. This disease and others like it are progressive.

You are not alone. Those of you battling it know exactly what you’re up against. Those not battling it, you’re lucky please be kind. We know that you can’t understand unless you live it, but we’d hope that at least you’d be empathetic. It’s a hard enough fight without having to deal with criticism, or skepticism, or being told how to heal it.

Just because we don’t look sick doesn’t mean we aren’t. We’re good a faking it. But we fake being well, to please everyone else. We want to fit in, keep up and be a part of your lives but this disease does not allow us too. Please don’t give up on us. Our immune systems are constantly attacking us. The pain and exhaustion that causes is often unbearable, and would put the average person in bed. We keep going.

The meds we have to take while they help in ways, also have their own often horrible side effects. So there’s that battle too.

And one more thing. If you see a person parking in a handicapped parking spot that doesn’t look sick, don’t assume they aren’t. There are so many debilitating invisible illnesses out there.

If you’re curious ask. I love when people ask me, because it gives me a chance to educate. I thank strangers when they ask.

So again if you’re battling any autoimmune disease please list symptoms that you have even if you think they may not be related to the disease. Let’s support each other and maybe we won’t feel so alone.

Sunny Days & Support,

CrankyPants