Ankylosing Spondylitis

Hi, my name is G. I'm here because I need a place to vent where people might be able to help and understand. I'm tired of feeling like crap all the time and just faking that I feel okay. My mother, who has a TBI, told me about this so I thought I'd try it out.

#MightyTogether #Anxiety #PTSD #Fibromyalgia #AnkylosingSpondylitis

I get tired of taking so much medication every single day of my life. Sometimes I forget or I don't take it on time. Then I pay the price with insomnia. Sigh. Then I know that everything in the morning will snowball due to me not getting enough sleep. The pain will be worse. The depression will be worse. I won't be able to function at work. I'll be too tired to try exercise at the end of the day for my mental health. I'll be too tired to cook or study. GAH! #Insomnia #ChronicPain #Depression #ADHD #Anxiety #SleepDisorders #CircadianRhythmSleepWakeDisorders #AnkylosingSpondylitis #Arthritis #BackPain

Hi, my name is gollylilly. I'm worried about having the following:

#MightyTogether #Anxiety #Depression #BorderlinePersonalityDisorder #DegenerativeDiscDisease #AnkylosingSpondylitis #PTSD

Hi, my name is BendySpondy. I have Ankylosing Spondylitis, Ehlers Danlos Syndrome (type 3) and Scoliosis (double s-curve). I’m here to connect to others with living with chronic illness.

#MightyTogether #AnkylosingSpondylitis #ehlersdanlos #scoliosis

About two weeks ago, I wanted to do a post a day, to get back into the feel of writing and processing and just dealing with this lovely process of living with a chronic illness.

Then, I had a bad Friday, and I long weekend, fatigue hit hard and then an appt , then another appt….

Then, just CRASH…

All the best intentions, gone.

Now, I’m slowly coming up for air and it’s like …. Wow, it’s been almost 2 weeks.

It’s so easy to lose time, and then when you’re ready to start again … you feel disappointed…

Starting over…
And over
And over

Sooo

Here we go

Starting over

#Asthma #Arthritis #ChronicIlless #Jointpain #ChronicDepression
#TraumaticBrainInjury #TBI
#PostconcussionSyndrome
#AnkylosingSpondylitis #ADHD
#ChronicPain #
#Endometriosis #PMDD
#COVID19 #ChronicFatigue
#DiabetesType2

Part 1 of 2 I have a history of complex trauma and have spent over half of my 56 years living with Multiple Sclerosis, Lyme Disease, Ankylosing Spondylitis and Uveitis(which has caused me to lose my eyesight). I am beyond exhausted. Listening to music is so healing for me, especially on the days I feel like I can’t handle “sick” one more minute. When listening to a song that makes me feel heard, the loneliness isn’t so lonely for a little while.

There is a song by U2 called Moment of Surrender. When I listened to it for the first time and heard Bono singing, “It’s not that I believe in love, It’s that Love believes in me”. The words hit me like a ton of bricks and I immediately started crying. I freaked out and thought, “Wow, someone else gets it.” Years later, I decided to start a blog(which never happened) and wanted to put that lyric as a quote on the title page. I did an internet search just to confirm I had it correct, expecting that I did. Low and behold, I was not correct and that is when I learned the true lyric, “It’s not if I believe in love, If love believes in me.” Seriously? I’ve had it wrong all of these years?

I have to be honest, I did feel some disappointment when I realized the difference between my made-up lyric and the songwriter’s. It’s beautiful, don’t get me wrong, and, of course, very similar but… not the same. If I hear a song lyric wrong, I can’t decide if those are now my words? “It’s not that I believe in love, it’s that Love believes in me.” I know this to be true. I don’t have to believe in love to be loved. It’s not about belief. Love believes in me, end of story. I don’t have to do or be anything or anyone, I just have to be. That’s it. Easier said than done, but when I inevitably forget, I like how these words remind that I am loved by Love. Maybe if I ever muster up the courage to share more of my writing in a blog or a book and I really want to use this quote, I will send an inquiry to the band(I seriously doubt they give a shit) but, until then, I am going to continue to sing along with my own made-up lyric. I can’t help it. It means too much to me at this point.

While I’m on a roll, I might as well get into the following misheard lyric from the same song. This is what I hear, “I was speeding on the subway, Through the stations of the cross, Every eye looking every other way, Counting down ‘til the pain will stop”. I’ve mentioned this lyric to a couple people because these words resonate deep within my soul. I can feel how much pain people are in and it’s natural to look away so as not to see. So many of us are doing everything in our power to look anywhere else but directly at the pain, whether it be in our own eyes or someone else’s. Here is the literal lyric(I was close), “I was speeding on the subway, Through the stations of the cross, Every eye looking every other way, Counting down ‘til the Pentecost’. I am aware that the stations of the cross are a big part of Christianity and I think that line is referring to how we tend to crucify ourselves for all manner of things we think we have or haven’t done. In my mind, “stations of the cross” just enhanced the “counting down ‘til the pain will stop” line. I know I “crucify” myself on a regular basis which causes me emotional, physical and psychological pain. Now that I know the actual lyric, stations of the cross and Pentecost makes sense. Although, I’m sure I will probably continue to hear my version of the lyric, “Counting down ‘til the pain will stop” because I feel like that’s what we are all doing. It’s probably not productive to be counting down waiting for pain to stop. I mean we are human beings on planet Earth after all; pain is a part of the curriculum. I can honestly say that pain has been my greatest teacher.

Moving on… I want to wrap this up with my thoughts on the following set of lyrics(which I did hear correctly and rings so true for me): “I’ve been in every black hole, At the altar of the dark star, My body’s now a begging bowl, That’s begging to get back , begging to get back, To my heart, And to the rhythm of my soul, And to the rhythm of my unconsciousness, To the rhythm that yearns, To be released from control”. It brings tears to my eyes every time. I am not a religious person but spirituality is a huge part of my existence. Living with chronic illness would not be possible for me without faith. In all of my spiritual studies and practices over the years, I have found that surrendering control seems to be the place I always end up. “At the moment of surrender, I folded to my knees, I did not notice the passers-by and they did not notice me.” I have experienced the immense amount of peace and Love that accompanies letting go of control, but I have figured out that this life of ours is a process that ebbs and flows. Yes, surrender is the goal, but it’s not a one and done type

Hi, my name is Staci. I'm here because I am looking for support for life with a chronic illness

#MightyTogether #Anxiety #Depression #Fibromyalgia #Migraine #RheumatoidArthritis #AnkylosingSpondylitis

I think I’m doing pretty good for the one post a day. I have almost made it a week. 😂✍️

This is progress.

I have a bunch of appts today, so I am preparing to be poked and prodded and make “nice conversation” 😂😂

It’s not the best day though, fatigue is high and I would really rather be in bed, because every moment will be a tiny mountain I have to climb.

Dealing with one chronic illness is frustrating enough, but when they start to combine on any given day, that’s when your body becomes your own personal torture chamber.

Today, it’s joint pain plus the PMDD and the spine pain… and with the PMDD there is the endometriosis… and there is always the foundation of it all , the Asthma…

You have to take it all in, balance it and then try to present yourself to the world as

“Normal”

Life , right..🤔😂

I look forward to the adventure of today. 🥰

##Asthma #Arthritis #ChronicIlless #Jointpain #ChronicDepression #TraumaticBrainInjury #TBI
#PostconcussionSyndrome
#AnkylosingSpondylitis #ADHD #ChronicPain #Endometriosis #PMDD #COVID19 #ChronicFatigue #DiabetesType2

Last year was really hard for me, felt like I was stuck and would never get out and yet I survived.

My Stepdad died from cancer in December 2021 but Mom was in hospital having virtually stopped eating and drinking due to her depression so now she has dementia. In the classic “I can fix this” role I’ve always played, I moved her down with me (SC from NY) and tried to take care of her in my home…it was a disaster! I moved her into a Memory Care facility and she’s much happier. But this pushed my mental health over the edge and I was a mess. It stirred up so much anger, resentment and anxiety in me over the way she has always been and it still comes through occasionally.

So…I’m back to therapy next Monday! I got in touch with a Psychologist who put me on Buspirone and that has helped the “hamster wheel” in my head from spinning out of control. We’ll see how this goes…I’m hopeful.

“What do you do all day?”

I’m a little late but I’m holding strong with my post a day …

Fatigue is definitely hitting hard today… I’m still hoping to be a little productive…

An old friend asked me that question, and I answered her once, I told her it depends on the day.

But, then she was like but I’m just wondering how do you spend your days….

That question has been haunting me like the ghost of a life gone past…

Because as a severe asthmatic just coming out of two months of dealing with the side effects of having CoVid….

“Nothing”

is really , surviving… struggling to hold on to the little bit of breath and life that you have…

Laying in bed and distracting yourself from the pain and the struggle of breathing and pain…. Is fighting for your life….

“Be still”

is really being a warrior, holding on to all the Hope you have left and get your “One more day”

“Nothing”

… when so many things are broken inside of you that taking a full shower without struggling to breathe or stand up straight is cause for celebration..

But,

When you’re used to multitasking, and being in charged of a business or people and getting things done… When you’re use to creating things that did not exist before your mind said, “Let there be, and it was…”

“Nothing”

Does not feel like an acceptable answer…

It is a text message still left on “Read”, the tiny bubbles keep showing up and disappearing…

I’m still looking for the right answer to that question… ✍️✍️

#Asthma #Arthritis #ChronicIlless #Jointpain #ChronicDepression #TraumaticBrainInjury #TBI #PostconcussionSyndrome #AnkylosingSpondylitis #ADHD #ChronicPain #Endometriosis #PMDD #COVID19 #ChronicFatigue #DiabetesType2