This was going out without my walker and it felt amazing
Some things I have been struggling with through this wellness journey I am on. If I’m not as sick as I was and don’t need a mobility aid to walk am I still identified as disabled? Like I think I am because I still need to rest a lot and there are definitely times when I’m out with bf or parent that I need something extra like sit down while we are shopping.
I used to be scared to say I was disabled. Like by saying those words it meant it was a forget thing and I gave up trying to get better. But that’s not the case at all. I can be disabled and still live a thriving life.
Just my thoughts, for today. Anyone who is disabled. I send good thoughts, prayers, and many spoons to you! 💕🥄🥄🥄💕
“If you stumble, make it part of the dance.” – Unknown
“She made broken look beautiful and strong look invincible. She walked with the universe on her shoulders and made it look like a pair of wings.” – Ariana Dancu
“I don’t want my pain and struggle to make me a victim. I want my battle to make me someone else’s hero.” – Unknown
“Resting is not laziness, it’s medicine!”
“When the unthinkable happens, the lighthouse is hope. Once we choose hope, everything is possible.” – Christopher Reeve
“If opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay.” – Carmen Ambrosio
Recovery its not an ugly word. It is the word that “means a return to a normal state of health, mind, or strength.” or “he action or process of regaining possession or control of something stolen or lost.”
This word recovery is often used when someone is recovering from something whether it’s an addiction or a short health related thing. But what do you do when your health condition has effected every single aspect of your life? You can’t think or walk without it saying, “I’m here.”
My life has been been just like this. But we aren’t here to say “poor me,” because in my opinion saying those words doesn’t help you live the best life that I believe we deserve.
So about 6 months ago, I made the decision to get the covid 19 Pfizer shot. After having a really weird body and knowing I could have the rare reactions, I took a leap of faith and got it. We won’t talk about how long I waited in a car line for it….but after 4 days of feeling sick flu like feelings as the days continue and a month went by I started to notice more and more changes.
I felt energy not a ton but some. I felt like I wanted to do more. In could sit up for longer periods of time without triggering my symptoms. Instead of 5 minutes I could sit up for 10 minutes. One day I realized I could leave my walker in a room and just walk around the house without holding on to things to keep my balance. My mom, dog, and I started walking outside. These changes started slow and there was definitely a part of me that was afraid to believe because if I did believe and say the words “I am on the road to recovery,’ what if something changed and I was but to being very very sick again stagnant in my life.
Now fast-forward to now November of 2021. I have been walking without my walker for over 4 months now. I have a niece my first one and I’m an auntie. I can hold the baby and walk around. I can get down on the floor and lay her on her mat. I can babysit and go for walks in the hills of the city with my sister, mom, and baby. This has been such a wonderful light in my life. The constant baby smiles we see her once a week and facetime a lot with the baby.
I have a boyfriend. He’s amazing. the most caring, funny, and honestly the most genuine guy. I have been able to go out on dates. Like actually leave my house get dressed up and go out. This is such a huge thing for me, I was actually nervous that no one would want to try to date me with all the things that come along with it but this guy sure is one of a kind.
There is a lot of benefits of the stages of recovery I am in now. As I’m sure you can tell my mood is even happier. But there will ups and downs and rest days and really tired days and not feeling good days but the good thing is after I rest it doesn’t seem to last like before. YAY!!!!!!
Something amazing happens!? It’s really cool. Haha that reminds me of when I used to watch The Wild Thornberries and she’d say “she could talk to animals but it’s totally secret.”
June 26th 2021 marks 4 years straight of being chronically ill. Barely leaving the house, using mobility aids whether it’s my walker or wheelchair, and watching my life fly by while I’m stuck staying reclined almost 24/7 in my chair.
I don’t even know when this started but for a few months now I started feeling better. First I could walk without my walker for like 20 mins and I was amazed. Then I felt more strength in my legs from all the movement my doctors have me doing. Then I started to be able to sit up for longer periods 10 mins to 2 hours now. Now I can walk without my walker most days and do a lot more. Now to figure out life but that will be another post. Lol
Honesty it’s so FREAKIN amazing. Like feeling better, having energy and motivation to do more is so great.
But what I forget about sometimes is I’m still sick. There’s no cure for my condition so I may get to a functioning level, but I will still need to rest. And honestly I’m okay with that. At first I was like doing all these things each day and then I’d get to day 8 and be exhausted and sad. But now I understand that I need rest days, hours, and minutes.
So when I start to feel tired or worn down I just have to remember self care is important and resting takes priority over anything else.
There are a lot of rollercoaster emotions involved with having a chronic illness. Sometimes I feel like I am handling everything great, content and semi happy. Other times I am so distraught and unhappy about where my life is. This tends to happen when I am trying to do something as basic as getting myself a drink and I am not able to do it. I plan it all out in my head. I walk with my walker to the kitchen, then I grab my cup from the cupboard, then I walk to the fridge and get ice as I wait for the ice to come I start to feel tightness in chest and shortness of breathe. I think I can just push through it, “come on just a few more minutes…” but then I realize nope I need to go lay down. I look at my cup and all it has is ice. So I politely ask my mom to pour my drink.
That is an average day in the life of a chronically ill person. Something as basic as getting a drink can make me so upset and frustrated with myself. I have learned to not be hard on myself because honestly it doesn’t help at all. There are times when I need to just rest and being chronically ill your body never gets the rest it needs, so I never feel well rested.
I follow a few different people on Instagram who are chronically ill. I follow this one girl named chronicallyhealed and she found out how to heal herself from POTS and Lyme disease. WOW, wouldn’t that be amazing to be back to life. To go out with friends again, go on dates, go shopping, go on vacations especially Hawaii and just live my life again.
Okay, okay I know I am still technically living my life. I mean I am here so that counts right. But just as Genie says from Aladdin “but to be my own master, such a thing would be greater than all the treasures in the world..” To not let me illness control every second of my day.
I just want to wake up healthy again, this post isn’t to make anyone sad it’s to remind you that you are blessed and your health is very important don’t take it for granted.
One of the most annoying things with being chronically ill is tomorrow or next month or next year I would wake up and be totally healthy and that not knowing is the hardest thing. So right now I decide in this very moment to LIVE for the moment! I choose to be content. If I want to play with makeup today I decide to. If I want to go to Ulta or the bookstore with my walker and my mom I decide to. If I want to sing today I decide to. If I want to create a YouTube video today I decide to. If I want to go outside I decide to. Do you understand the pattern we HAVE the ABILITY to make our own decisions and that is sooo POWERFUL.
I know you can’t choose what happens to you but you can choose how react to it and sometimes that can be more powerful than the circumstances.
I wrote this 2 years ago and it’s even more true today.
I came across a post on Instagram of a fellow Spoonie today. She was showing her painting that she has been working on, it made me smile.
When I was first diagnosed with CFS/ME the doctor told me that it happens to woman between the age of 20 and 30, perfectionists, driven, and creative.
Well that’s me…
When I first heard that it honestly freaked me out like “should I have not pushed myself so hard?” “Could I have changed my path?” “And why did this happen to me?”
Growing up we are told to “do our best, try hardest, and never settle for mediocrity.” I always heard these phrases growing up and thought “yes I can do this, I may not be the smartest in school but I will always work my butt off “Could this be why I am sick?” All this pushing and striving for perfection?”
These thoughts go through my mind more often than not I would haven to admit. But I need to remember is they are just thoughts and it only matters what I do NEXT. Do I let these thoughts control my mind and body and let it control how I feel emotionally?
I don’t believe any of this! I know there is a big, huge, unbelievable plan for me. God is always here. Even in my darkest moments God is there hugging me.
In the world we always want to find the reason WHY. Why did your friend get sick? Where does cancer come from? Why does this happen to people? What will happen after we die, like I know Heaven but what Is it really like? Why is there violence and hate in this world? The truth is the ONLY one who know is God. He knows every single plan, moment, and person.
All we can do is trust in the Lord with all of our hearts. And I know that’s is to say and hard to do but I have learned through thick and thin, through negative and positive moments, through losing friends and making new ones God is ALWAYS there. And we need to trust in HIM wholeheartedly. Not for just this second, but every single second after that and with EVERYTHING.
Teresa Love 
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