Stronger

I’m going to do something I haven’t in quite a while. I’m going to be vulnerable. I’m going to say something I’ve wanted to say for over a year.

🎵You’re alive, you survived, it’s a sign
And the proof is in your pulse
Brighter stars only shine in the dark
You are stronger than you know🎵

This hits right in my soul, given the last 539 days. But I know I can do this. Because I’m still here. When my heart gave out that day, and I flatlined, I came back. I fought like HELL to come back.

No, I’m not over it. No, I’m not okay. Far from it. But day by day, I’m getting there. Day by day #IGetALittleBitStronger

The lyrics are from a song by Citizen Soldier called Still Breathing. One of my favorite Artists lately. They have yet to write a song that I don’t relate to or love.

https://youtu.be/JFAs8GKyZJE

I’m so beyond grateful for the amazing but small, support system I have. I love you all and I can’t thank you guys enough ❤😘

Welcoming Changes

Today, for the first time in over a year, I woke up HAPPY. In a great mood and even had less pain than normal.

I feel more like myself then I have in over a year and I can’t tell you how amazing it feels 🥰

Maybe its because I’ve had so many rough days, but to me, it feels ‘weird’ to feel like this.

Honestly, I’ve spent the last year struggling and wondering if I would ever be okay. Little things would trigger me and I’d be right back there…in the hell I went through. Don’t get me wrong, I know I’m not suddenly ‘better’, its not perfect days from here on out.

But this gives me hope for better days ahead.

Tonight with my workers we went to a small craft fair type thing in my tiny town and even though I shouldn’t have spent the money, I saw these and couldn’t resist. She showed me how to do the piece all by myself, it was really simple but fun. And I bought a smaller one that is a magnet for your fridge as a kit and am going to do it later tonight. It comes with everything you need. Then, of course 😂, I saw the elephant keychain and had to have it. My Grandparents went on a mission to Thailand years ago and got to ride and elephant and my Grandma loved them, she collected mini elephant statuses and other small things.

The saying immediately made me think about how everything has gone and how I probably have become a little TOO ‘comfortable’ in staying to myself and how I don’t want to be like that anymore. How I may have to take life one day, or one hour at a time, and that’s okay.

I know this isn’t over, there are probably plenty of rough days ahead, life isn’t ‘fixed’ or ‘perfect’, but for the first time in a long time, I feel like I’m strong enough to handle it.

Just breathe. I got this.

Still Standing

May is when the world disappeared beneath my feet a year ago. May 22, 2021. That whole month was many things. Traumatic, draining, Toxic. Amazing (the rare moments when things were good)

I have fought like HELL to get where I am today, mentally, emotionally and even physically. This has been one of the hardest years (almost) of my life.

BUT, here I am. Despite everything life threw at me, here I still am. Still standing. Still fighting.

In my head, I still haven’t gotten anything figured out, still struggling every day. To my counselor though, she’s proud of me ❤ and that means the world. I’ve been working with her for years. And when you find someone you “click” or connect with, you want to keep them for as long as you can.

I’m so grateful for the amazing support system I have. I honestly don’t know how I would’ve gotten this far without them.

I’m doing my best to get back into blogging, please be patient with me as I get my feet back under me again.

Stay strong. You can do this. Always just a message/email away if someone needs/wants to talk.

Have a topic you’d like to see? I’m always willing to take requests on topics. You can email me at thespooniesanctuary@gmail.com or find me on Facebook

Lessons My Chronic Pain Has Taught Me

I know what you’re probably thinking, “How can your Chronic pain/Illnesses teach you something?! Pain is pain, there’s nothing good about it!” And to be perfectly honest, I’ve struggled for years with trying to accept my illnesses. For years I let myself focus on the bad parts, the bad days, the medication overload, the sleepless nights due to pain. I couldn’t see that despite it all, my Chronic Pain has taught things about myself. Good things and bad.

These last few months, I’ve been dealing with some extremely hard personal challenges. Its been emotionally and physically exhausting. But I’m still doing my best to move forward.

Here are some lessons my chronic pain has taught me.

1. When I was first diagnosed with Interstitial Cystitisthen later, Endometriosis, PFD, and most recently Epilepsy, one of the first things I did was search out some support groups. My ‘family’ now is spread across the world and I haven’t met most of them in real life yet. But we stand together and support each other.
2. My pain has taught me how to listen to my body and learn my limits. In the early days of my ‘journey’ I tried to keep the pace I had before I got sick and more often than not I ended up in bed for days after.
3. There is a joke, but not a funny one, going around the Spoonie communities. “Want to know who truly cares about you? Get diagnosed with a Chronic Illness.” There are only a few people in my life but they have continued to lift me up and help me because they truly care.
4. My Chronic Pain has taught me to believe in myself again. Being confident in what I can and can’t do has helped to allow myself to believe I can do anything, I just have to be careful and usually spread out over a week or more. But I do get things done.
5. My illnesses have also made me want to learn all I can about my illnesses and others that people I know have. I know it may seem strange but learning about other illnesses is a kind of hobby for me.
6. Just because I could do some walking around and hanging out yesterday doesnt mean I can do the same tomorrow.
7. The person hardest on me is myself. I judge myself harshly, put myself down for the things I can’t do. I usually end up pushing myself too far because I want to try and have a life outside of my illnesses.
8. I’m learning its okay to ask for help.
9. I want to help others like me who suffer from Chronic Pain and Illness. I even am starting my own Chronic Pain Support Group online, so everyone can join and not have to miss out due to transportation or illness.
10. I think one of the hardest things my illnesses have taught me is how to be patient with others and not become annoyed when they find out I’m sick but look fine on the outside. They all give you ‘the look’ of disbelief and some even come right out and call me a liar. It hurts.
11. There are a lot of ignorant people out there who think they know me and my illnesses better than I do based off a 2 minute internet search.
12. I’m learning to take life one day at a time, sometimes an hour at a time. And thats okay.
13. My experiences are different than those of someone with the same illness. No two people have all the same symptoms.
14. There are many others who suffer from Chronic pain and Illness, as well as invisible illnesses. You are not alone. I am not alone.
15. Taking care of myself is not selfish. Its a necessity.
16. I’m much stronger than I give myself credit for. My illnesses take a lot from me mentally, emotionally and physically. But somehow I still manage to push forward each day.
17. I have to become my own doctor as I know my body better than anyone. I’ve spent hours researching to find different treatments and ways to make my life a little easier.
18. I no longer try and justify my illnesses to others. I’m sick and while I’m doing the best I can, I should never have to feel the need to prove how sick I am.
19. I can no longer do what I used to, but I just do my best to adapt and find a way to still have fun.
20. You have to be truthful: you have to be open with loved ones about your condition, pain and feelings. So then you don’t battle alone and everyone knows the score.

What have you learned through your own journey of Chronic Pain and Illness? Let us know in the comments. 

Support Groups

Whenever I used to think of support groups, I would think that it meant there had to be something wrong with me or whoever was also there. I realize now how wrong I was back then.

I have met some of the best people in support groups for Chronic Invisible Illness. They just get you. They are there for you when you have a bad day. They get the feeling of wanting to do something but not having the energy. There isn’t anything you can say that they haven’t gone through right along with you.

Support groups can be a huge help no matter what you are going through. Just reaching out can make a huge difference.Never be afraid to reach out. You never know who you will meet.

Feeling Blessed

Wrote this at 10pm last night and as I still haven’t been able to sleep, I guess I’ll post this now 🙃

POSSIBLE TRIGGER WARNING. I have included some pictures to show you better what I’m dealing with and while they’re not innapropriate or anything, they definitely aren’t pretty.

10:20PM and I’m having the full body shakes/tremors and along with the dizziness, I’m having to use the voice to text thing because I literally can’t hold my phone, so I’m sorry if this isn’t coming out right 🤣

I know there’s only so much doctors can do till I see a Neurologist, but the last few days have been even worse than normal and honestly I’m terrified to do anything.

I spent all night and till about almost 7am dealing with what I can only describe as waves of hot goosebumps, random jolts from my head through my entire body down to my toes. Literally. Waves of dizziness, tingling from my head down to my toes. Full body shakes. And on and on.

My boyfriend ended up literally picking me up off the couch when he heard me crying on the couch because I couldn’t move and we walked like penguins from the living room to my bedroom where he tucked me in and I finally got some sleep thanks to the heavy duty sleeping pills I was thankfully prescribed that knocked me out.

My doctor is reaching out to other Neurologists in the area with the hopes of getting me in before this gets worse or Christmas comes, but so far no one has a spot open.

He says he’s concerned, BUT he’s not in the ‘freaking out’ stage as of yet 🤣

Well, that’s nice. But it’s not happening to him. As for me, mentally, emotionally, and physically, I’m really struggling to do even the basics of living.

Could really use some help in the form of memes, funny videos, anything to get my mind off what’s going on, even for a few minutes.

I have very few people in my corner, but the ones I do have? I couldn’t ask for better people ☺️😘🤟 You know who you are, and I can’t ever thank you guys enough for just being here for me, even just through a phone. Means more than you know.

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More About Me (Requested Post)

I started blogging because I know what it feels like to wonder if there is actually something wrong with you or if it’s all in your head like everyone says it is all because you look fine on the outside.

The days, weeks, months and sometimes years waiting for the test results. More than not, at least in my situation, the test results may come back ‘Normal’ and when you finally have a name for what is wrong with you, it feels great, but at the same time it can really be an emotional time. It’s not in your head, you finally have a diagnosis. But after the diagnosis comes all the changes that the illnesses bring when they come into your life.

I also know what it’s like to have little to no support from family and friends because they can’t understand how you can be fine one day, and stuck in the bed bawling the next.

How you can walk with little to no pain and ten minutes later you’re in need of a wheelchair. How you can do household chores fast, but the minute you sit down, you see how much your body is straining to remain upright as everything catches up with you. How no matter how much sleep you get, it’s never restful sleep and you’re always exhausted when you wake up.

I am 26 and I have been diagnosed with Interstitial Cystitis, Endometriosis, Pelvic Floor Dysfunction, Anxiety and Depression.

7 years ago I got married. About four months later, my health took a turn for the worst and then came all the doctors, the tests, the scans, the medications, the surgeries, and losing everyone I cared about because they don’t see how I was fine and then suddenly I was far from fine.

My marriage fell apart from a million different things. But two years ago I reconnected with my amazing boyfriend (now Fiance 🥰) and he is everything I ever wanted.

My illnesses are called “Invisible Illnesses” because only on the inside you can see how much of a mess I am with all the scar tissue, the scars, the organs sticking together and swelling when I push myself too hard.

I have met some of the best people in support groups. Reach out, you never know whose lives will be touched by you.