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It's impossible to have this disease and not have your emotions affected by the ups and downs along the way. The emotional changes can be triggered anytime. Sadness, irritability, worries, anxiety, depression are all common. My experience with those mood changes started very subtle and happened within the past 2 years. First I realized some sort of sadness started. It started out of nowhere. It was like a grief and that was enough to change my mood completely. I remember my husband looking at me and saying, "What happened? You were great 5 minutes ago."
I started analyzing myself in order to identify how the mood change was triggered. Then I try to stop it from happening because I knew that it would ruin my day and upset people around me. I was determined to not allow it. I learned to read myself.
Anxiety is what affected me most. I had a counselor for a while and now I take medicine for it. I thought I'd go crazy. My mind was restless with thoughts, questions and worries about everything. A simple question such as "who am I?" would run around my mind an entire day. I wouldn't concentrate in anything else because of this one single question. I was afraid, nervous and terrified about losing my sanity. It was one of the worst experiences that I had. I looked for help. It's very important to be open about what's going on and not be afraid to ask for help. I had great doctors that helped me to go back to myself and life goes on.
It's the struggle to concentrate. Forgetfulness. Difficulty to solve problems. You lose track of conversations. Tasks that are simple can be difficult. Things you knew by heart get lost. It's like when making a simple old recipe I have to remind myself of each step, reading over and over again every line until it's done. I started experiencing Brain Fog sometime after my diagnosis. The signs were subtle and it took a while to realize that something had changed. Following directions, confusion to understand what I'm reading, forgetfulness, getting lost in the middle of conversations are part of my struggle. There are several moments I find myself in a conversation and suddenly my mind drags me to another place. My body is there. There's eye contact, but my mind is not there. The connection between me and the other person is slow. Sometimes it makes me feel embarrassed to ask people what we were talking about. Somehow I was present, but not present. It's like the mind is full of infinite boxes, one inside the other. The strangeness of this disease made me question myself about anything and everything in silence.
Vision problems have always been a symptom that struck me the most. I used to have a blank spot in the upper part of my right eye. I had it for several weeks in different times for too long. The worst part was the doctor saying, "There's nothing wrong with you." I needed help to go to the doctor. I couldn't get there by myself but "there's nothing wrong with me?" Sometimes I used to pretend that everything was ok, going through the day as if I wasn't feeling anything until it was all I could feel. It drove me crazy. It was almost like a white blindness. I felt desperate, hopeless and mad. It was a daily battle of my broken eyes against a perfectly beautiful world.
The next 10 days I'll be sharing a personal project where I expressed my Multiple Sclerosis symptoms through my photography.
The project I titled: My MS Journey- The Pain Behind The Beauty
I had help of my beloved husband and my friend and biggest collaborator, the model Shelby Cross. For more info visit my website to know more details about my journey with MS at am-photography.smugmug.com/Photography-Projects/MyMsJourn...
I felt thrilled that this project was published on a local magazine Coastal Virginia Magazine and National MS Society shared on social media, both Instagram and Facebook. March is MS Month Awareness.
Let's spread the word and let people informed about this disease.
"Tingling"
Like ant crawling on my skin. That's how I always awkwardly described to doctors how I was feeling while trying not to sound like a lunatic. I had Tingling in almost all parts of my body, even my face. The sensation is extremely annoying and lasted for days or weeks just like numbness. I'm glad I don't feel it anymore since I started being treated. My husband, who is an artist, helped me to create the image I had in mind. I asked him to paint ants on Shelby's arms, hands and fingers. He did it beautifully. Those were the spots I felt the sensation most.
How do you live your life feeling such things so weird and complex, and still present yourself to the world as if nothing was affecting you? I think I became awfully used to that strange presence on my body somehow. I learned how to live with that. And the invisible monster could be tamed in some moments.
Nehmen Sie an der Wanderung der Schweizerischen Multiple Sklerose Gesellschaft teil! :-)
Info:
www.multiplesklerose.ch/de/spenden-helfen/benefizevents/l...
The latest photo from my MS Journey - The Pain Behind The Beauty Project
MS had always sneaked up on me, slowly messing with my life. The bladder issues started early before my diagnosis. I would go to the bathroom and sit there waiting. I didn't understand what was happening to my body. Years after my diagnosis it really started bothering me. I wasn't just waiting longer for my bladder to work, it wasn't emptying completely. The sensation that I wanted to pee was always there. It's a pretty inconvenient thing to deal with all the time. Everywhere I went I was checking where the bathroom was before anything else. The thoughts of "what if I need to go?" or "what am I going to do?" were always there. I was living under a mental torture. Holding my pee became a burden.
My husband is an artist and we're always doing art shows or visiting art galleries. My first question to him every time we're participating in an art show is "is there a bathroom close to where we'll be?" In one of our visits to a local gallery I saw this goldfish series of paintings by the talented artist Amanda Outcalt. I knew immediately that It would be perfect to create the image I had in mind for this symptom. The fish outside of water represent how I feel while I navigate my journey. I always try to keep doing what I love, to enjoy the little moments, the mundane life and also the adventures that life brings. I want to be there for all of it and I will do anything within my power to not let MS stop me.
I used the balloon as a metaphor to represent my bladder and the idea that no matter where I go or what I'm doing I was always "holding" it.
Thankfully nowadays my bladder issue is stable. I did physical therapy and It was a life changer. Also I take medicine that helps to empty my bladder and I always do an annual check up with my Urologist.
MS doesn't deserve the middle finger! #NoFinger4MS My personal opinion, which has made all the difference in the world for me, I don't give a shit about #multiplesclerosis - who cares about the disease/disorder/illness/other useless labels. By focusing on improving my spiritual, mental, and emotional health, it inevitably improves my physical health. IM NOT SPECIAL!! You have this unlimited power in you as well 👍 Research "How to successfully live with #chronicillness " rather than consuming detrimental information like you'll be using a walker and diaper before you're 40 y/o. Opinionated Fact: Eastern Medicine and #mentality will "#cure" you from symptoms. Start implementing #holistic modalities, it's been around for 5,000+ years with little change--must work right??? #camptakota #invisibleillness #spoonie #fuckms #msaintshit #mswarrior #msfighter #msquote #mslife #spoonieproblems #spooniestrong #spoonielife
The way I looked at the world was changed in a crazy way when the Blurry Vision came. It was almost a psychedelic experience. Movement around me would become blurry. Colors and motions ran before my eyes uncontrollably. Car rides, people passing a few steps by me, kids twirling, etc., anything involving movement affected me. I used to say that I have a 3D chip implanted in my eyes because of its intensity. I hated to have to deal with It with and the fact that I couldn't control it was exhausting. I wanted to just freeze the world to stop its constant motion.
It took 10 years to be diagnosed and during that time I had countless weakness episodes. Because I have the Relapse Remitting type of MS it would come and go all the time. My right leg was the most affected one and it still is. If I force it too much with walks, standing for too long or exercising too much I feel It hitting me again. I can't run. I can't jump. But I can walk and that's what matters.
Along those years before the diagnosis I remember dragging myself to go to places. One day, struggling to climb the stairs at work, I noticed some people looking at me as if somehow I was making all that up. Many people thought I was creating that or that there was some psychological problem. Many of my family members thought this.
This picture expresses exactly how I was feeling during the strongest relapse of all. The one that led me to the doctor who diagnosed and treated me for years until I moved to the US. My whole body was losing the strength. Every step was an unimaginable struggle. It was like I was wrapped in some kind of power that weakened my strength everyday a little bit more. By that time my mother took me everywhere looking for answers. I couldn't walk by myself. I was at my worst. I was at the limit by then, but a thought always crossed my mind—nothing lasts forever. This too shall pass. I felt the truth was close to me. It felt frightening and liberating at the same time.
Perseverance pays off Take consistent daily action Keep trying and testing different things Success is always one more try away Keep learning the ways that DONT work It may take longer than you'd like to produce the result, that's why you keep trying! #success #successquotes #perseverance #persistence #quote #quotes #quoteoftheday #quotestoliveby #successfulmindset #multiplesclerosis #mswarrior #chronicillness #invisibleillness #msfighter #msawareness #fuckms
It's that time of the month again...to not flip off MS. #MultipleSclerosis doesn't deserve the middle finger. It's lucky enough to get my ring finger. #FuckMS Post a picture of you NOT flipping off #MS and add the hashtag #NoFinger4MS I didn't come up with this idea, #camptakota did...awesome movie! #chronicillness #invisibleillness #spoonie #mswarrior #msfighter
In memoriam:
This is my favourite shirt, one of the many creations from my talented friend, Kelly Clark, aka @umberdove. It has been with me to more infusions and medical tests than I can count, and has seen many of my other appointments, road trips, and social engagements. Its design speaks to me of my connection to my spirituality and to the land upon which my feet place themselves.
Kelly knew of this connection, of the mystery and wonder of the land and of life. Her wildness and grace were exemplary, while her own connection to the sacred -- and creative response to it -- could bring me to my knees with its beautiful devotion, raw truth, and deep wisdom. Most of all, though, her love of this place and all its beings was sacred in itself.
Kelly also understood the fragility of life, the magic within and beyond blood and bone, the wisdom of those gone before us. She touched me, over and over and over again, despite the distance between us, with her love, her journey, her moments of goofiness, her laughter. She lived the medicine of slowing down and noticing the details, of walking with one foot in one world and one in another, of listening to Nature and understanding every nuance when Nature spoke back.
My friend, travel well and know that you are so deeply loved, and so terribly missed. There will be deep tears for a time, but I am truly blessed and grateful to have known you and to be able to wear a part of you on days when your strength and magic do all the talking that my own heart is still struggling to express. I love you. Rest in power, and Heron fly thee home.
Who is remembered, lives.
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#umberdove #friendship #love #death #grief #bereavement #sad #memories #honour #inmemorium #grateful #riseup #whoisrememberedlives #MSWarrior #heartbroken #gratitude #youarethemagic #stardust #rootdeep #nofilter
via Instagram ift.tt/2v5LCLz