woman experiencing a migraine

Why I Share the Positives and Negatives in My Life for Migraine Awareness Month

19
19

June is Migraine Awareness Month and because I suffer from new daily persistent headache (NDPH), I have been posting something each day on Instagram about life with this condition. I find it important to educate others about the way this affects my life because there is little understanding in the general public about the very real issues headache conditions, and chronic illness in general, can cause. However, I get the feeling that I am sometimes more of an annoyance or white noise to those I want to communicate with the most.

 

I know other “spoonies” or people who deal with conditions like mine understand my daily life. They are not really the ones awareness months are for because, in short, they are already very aware. So often though, I feel my posts that show the reality of my life are skimmed over and forgotten, while the posts that are considered to be “positive” and “inspiring” are celebrated.

Don’t get me wrong, I’m all for encouraging moments and finding the good in a sea of so much struggling, but not when it eclipses reality. Most moments are not mountaintop moments in everyday life and I want to be able to share those as well without being considered whiny or depressed. My reality is that I have lost most of what made me, me. A lot of my favorite things to do are currently not options for me because of the limitations my illness(es) put on me. My acknowledgement of this is not negative or depressing but rather a statement of fact.

If I want to bring honest awareness to this condition, I want to share all aspects of my experience. I want to be as transparent as possible and show both the positive and negative effects of NDPH. There are things I have learned through this journey that I don’t think I would have been able to understand had I not had this illness, but the loss and grief I’ve experienced are also very real. I don’t share these things for show, but rather to start a conversation and bring more understanding to those outside the circle of my daily life.

So when you’re scrolling through your news feed today and see yet another article shared by that friend with the chronic illness, take the time every now and then to look at what they are posting. Let them know you care. Chronic illness is one of the most isolating things I’ve ever experienced and it means the world to me when someone takes a moment to learn a little bit more about the way my life has been molded by this condition. Awareness events are not for those affected – they are for those who have been fortunate enough to not have had this experience. Please be open to learning.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via SIphotography.

19
19
TOPICS
JOIN THE CONVERSATION

RELATED VIDEOS

I'm Proud of How Cerebral Palsy Has Shaped Me

58
58

Imagine a child running around in the snow, making snowballs, building a snowman, and making snow angels. Now, imagine a child who has a physical disability out in the snow. This child is struggling to walk in the snow; it’s hard for her to pick up the snow and form it into a ball, and when she tries to make a snow angel, her legs and arms seem to be weighed down and look practically impossible for her to move.

I was that child. The one who struggled to walk in the snow, who took 10 minutes to make one snowball, and who couldn’t make a snow angel because her muscles wouldn’t cooperate with her. As a diverse individual, I’ve had many challenges throughout my life. I was born three months early, and as a result, I have cerebral palsy. Cerebral palsy affects my muscle control and balance, among many other things. This has caused me many hardships, but has also given me many wonderful experiences.

Cerebral palsy is caused by brain damage before birth, during birth, or immediately after birth and is not a degenerative disease. Cerebral palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture, and balance. Cerebral palsy is a common diagnosis that can occur in premature babies. I have triplegic cerebral palsy, which is a type that paralyzes or affects three limbs of the body. Physically, it affects my balance, muscle control, muscle tone, reflex, posture, and balance. Mentally, it is connected to an anxiety disorder, a learning disability, and an unspecified neurodevelopmental disorder. “Neuro” means how the neurons in the brain transmit information to other brain sites. If there is an interruption in the transmission (in my case — prematurity) then this diagnosis is a professional way of describing a brain processing difficultly.

As a child with a disability, I had a lot of physical challenges other children did not. While the other kids could run and jump on the playground, I was struggling just to walk on the uneven playground turf. I couldn’t climb the ladder to get to the top of the playground equipment and I couldn’t go on the slide, because I couldn’t keep from losing my balance and falling off the slide. Due to all of that, I missed out on some of the fun the other kids were having.

In addition to the physical challenges I faced, finding kids to play with was always difficult. As a child, I wore leg braces. They were clear with hot pink, Velcro straps, and came to just below my knee. I also wore a helmet while on the playground to protect my head during falls. It was soft, bright purple, and had a large white velcro strap that went under my chin to hold it on. The other kids didn’t understand what to make of my braces or helmet. Because they didn’t know what to make of my braces, helmet, or me, they just stared at me with confused looks on their faces. They never talked to me or played with me. They made me feel excluded and like being different was a bad thing. As I went from a child to a teenager, I kept my braces, but they evolved as I grew.

I began my education at a traditional preschool and continued it at a traditional kindergarten. After I finished kindergarten, my mom withdrew me from school and decided to homeschool me. She decided to homeschool me because she felt it would work better with my therapy schedule, and it gave me the opportunity to have a quiet learning environment and work at my own pace.

As a teenager, I started to notice the differences between my school experiences and those of other teenagers. My school days consisted of doing homework in the morning, going to physical therapy sessions in the afternoon, and being taught new lessons by my mom at night. Because I didn’t go to a traditional high school, I didn’t get to enjoy the extracurricular activities that most teenagers do.

When I was a teenager, I got a Facebook account and started to notice the differences between myself and the mainstream teen. Those differences were once again brought to the forefront when I started voice lessons at the age of 14, and I heard other kids my age talking about the things they were experiencing. I felt completely disengaged from people my age. I missed out on school dances, being part of a school debate team, sports team, and going to parties.

There were other teenage milestones I missed out on, too. I never drove a car, dated a boy, or rebelled as a teenager. Because my life was so different from that of other teenagers, I found it impossible to relate to them. I didn’t have any friends, and I spent a lot of time alone in my room. I felt sad, lonely and depressed.

Once I became an adult, I started to see, appreciate, and be extremely grateful for my physical disability. The positive effects of being a person with a physical disability greatly outweigh the negative affects. I’m a hard worker. I find ways to overcome the obstacles having a physical disability creates. I never give up on myself or my dreams. If I don’t find success doing something one way, I keep trying different ways of doing it until I find success. I don’t feel that I would have the tenacity that I do without having been faced and forced to overcome the obstacles in my life.

I feel that I am a very open-minded person. I am appreciative of all people regardless of race, ethnicity, sexual orientation, disability, political views, and religious beliefs. I feel very passionate about the topic of diversity. I think it is a very important thing to have in the world. I feel there is so much to be learned from diverse people, their stories, and unique perspectives on the world. I think the world would a very dull place without a variety of diverse people and viewpoints. I feel my disability has given me a unique perspective on life and has helped to shape me into a diverse individual.

Today I am a 22-year-old confident, self-assured woman. I am passionate about raising awareness for cerebral palsy. I have started a blog to highlight the issues I face as a woman with cerebral palsy, and I hope to help others through my writing. I started college this year and have found it to be a really positive experience. It’s hard work, but I’m finding I can be successful in college. I love theatre and acting. I love the opportunity to be on stage and lose myself in the telling of someone else’s story. I am grateful for the theatrical opportunities I’ve had and for the chance to show others that even though you have a physical disability, you can still be a part of theatre.

I feel my differences have shaped me into the person I am today. My cerebral palsy has caused me many challenges and given me many gifts. I think it caused me to be stronger, work harder then I ever thought possible, and helped me to be more accepting of others. I think it has shown me what my limits are and forced me to find ways around them. I am proud to be a diverse individual.

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by Alkir.

58
58
JOIN THE CONVERSATION

Celebrating the Small Miracles While Facing the Loss of Basic Functions

23
23

It’s easy to take for granted the things we expect to always be there. It’s easy to take for granted the basic daily functions the human race was created to enjoy, such as vision, hearing or the ability to walk, to exercise or to eat and drink. It’s ingrained in us and when we are born with it, over time it becomes hard to imagine there would come a day we would have to part with something of this magnitude. Or so I have learned.

At 17 I started to get nausea, after having already struggled with abdominal pain for years prior. It was my normal, even though it’s not normal. At 19 my health status gave way to an innumerable amount of
illnesses. Somehow something damaged my vagus nerve and gastric muscles. Gastroparesis is my diagnosis.

My condition is progressive.

 

I’m losing the ability to eat or drink anything. Food is so not enjoyable for me and while I still have a handful of foods I can handle – for the most part – liquids are worse.

I never in a million years would have imagined this would come. How could anyone imagine this?

But, that is not all. My body is struggling in so many ways. What once came easy for me now has me facing an uphill battle. What I wish others would understand is how lucky they are. Even if it doesn’t feel like it, being alive is a blessing. Being able to meet these basic daily functions is incredible. It’s a miracle in and of itself. Miracles don’t have to be something big like being cured from an incurable illness. For me, I realized miracles are the million little things we don’t think about. The hundreds of functions our bodies perform for survival, because even if my body is struggling, I was still created for something amazing. We all were.

When we are faced with challenges so big, such as the loss of basic functions in the body, it’s confusing. However, confusing as it is, I
now know we were always created to be victorious. We have strength within us that comes out of nowhere during the times we need it the most. While society revolves around food. Delicious new meals and
desserts. TV shows on cooking. Books of recipes with enticing photos. Holidays, birthdays, pretty much every social gathering you can think of. Dates, wedding receptions. You name it, you will most likely find food. Some kind of refreshments. That’s OK. The nutrition found in foods and the hydration from liquids are what sustains us.

I should know. As one who has struggled with malnourishment and severe dehydration I know the devastating toll it can take on the body. But, I also know the victory of making it to even just 500 calories in a day, or 1,000 calories a day. I know the victory and excitement of even just eating a few bites of food, or sipping a few ounces of liquids. It’s easy to take for granted the things our body was created to do, but that’s not me. I’m grateful for life.

What I wish to ask of everyone who has read this is to just try and remember how blessed you are to be able to enjoy a healthy lifestyle of eating healthy and exercising, because it’s a luxury some don’t have. If this is a luxury you are not blessed to have, remember, you were blessed with courage and the ability to come out victorious. Your life still has a purpose, and in courage you will find who you were created to be.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Olarty.

23
23
TOPICS
JOIN THE CONVERSATION
32 'hacks' that can make life with ehlers-danlos syndrome easier

32 'Hacks' That Can Make Life With Ehlers-Danlos Syndrome Easier

2k
2k

Living with Ehlers-Danlos syndrome (EDS) is no easy feat. You may struggle with intense pain and fatigue, or constantly worry about moving your body in a way that will cause one of your joints to sublux or dislocate. It can also be difficult to find a doctor and/or physiotherapist who is knowledgeable about EDS, and friends who understand the physical and emotional struggles you face every day.

Although there’s not a cure for EDS, some people have developed tricks they use to prevent or manage symptoms. We asked our Mighty community to share some of their “hacks” for making life with Ehlers-Danlos syndrome a bit easier. Maybe some of these ideas will help you live a bit more comfortably, too.

 

Here’s what the community shared with us:

1. “Lots of pillows in bed. I have to prop myself into a certain position or things start subluxing in my sleep.”

2. “Get a good physical therapist. My PT is like a dad to me because he’s been working with me since I was 14. He is such an amazing resource. If I have any questions he figures out answers for me. He calls around to my doctors and does lots of research if he doesn’t know an answer to a question I have. PT has given me the ability to have some normalcy.”

3. “Hot bubble baths! It’s a pain getting out of the bathtub, but sitting in the hot water with bubbles helps with my joint pain, so it’s worth it. I subluxed my hip the other day, so I took a hot bath and the hot water made it feel 10x better!”

4. “I do all my shopping online. No lifting and walking required.”

5. “Facebook EDS support groups. I’m, in a sense, surrounded by people who understand my pain, struggles and worries. It helps just knowing that my feelings are validated by others, rather than being brushed off. It gives me the emotional strength to keep fighting and spreading awareness.”

6. “I shower at night before sleeping. Otherwise I’m way too worn out to make it through the day.”

7. “I keep a trash bag in my car so on the days when my vertebra are misaligned, I can put the trash bag on my car seat and sit on it to swivel in and out of my car easier.”

8. “Always carry an emergency kit. I always have a pair crutches in the car, and an extra set of medications on me. I also always have an extra set of chargers and my medication list with a protocol letter with me. EDS is unpredictable, so I’m always prepared for Murphy’s law.”

9. “I sit down when I get too tired. I also take naps often when I need to.”

10. “I do progressive muscle relaxation for when I’m way too stressed or have insomnia.”

11. “Cheap memory foam insoles for your shoes. Try to wear flats or something with a heavy sole. Anything with even a slight heel is hell for me. Shoes that cover the ankle are more supportive – even just Converse.”

12. “Thermal leggings. They act like compression leggings and a heat pad in one – a must for the winter or a bad flare.”

13. “I use voice dictation software to write papers more easily and save my fingers some typing.”

 

14. “I drink a full glass of water right after waking up and before bed so it helps regulate my heart rate.”

15. “My pets. They never judge or make me feel broken. They just love me as I am. They help keep my mood positive on the days where everything hurts and I can’t do anything.”

16. “I’m a songwriter and Ehlers-Danlos has made it quite difficult to play guitar. A few months ago, I invested in some finger splints to help with dislocations. They are super helpful and make using my fingers less painful. My handwriting has also improved dramatically.”

 

17. “A rolling laundry basket so I don’t have to carry heavy baskets around. I use this for many things beside laundry.”

18. “I use a bar stool at the sink for when I am unable to stand to wash dishes. I also have a TV tray stand that I use when I’m in a wheelchair and can’t reach the counters so I can prep and still do some cooking.”

19. “Having a pillow right next to my home office chair so I can lean over the table and rest when it feels like I’m going to pass out from overwhelming tiredness.”

20. “I have found easy hairstyles such as a wearing my hair in a cute bun because I just can’t do my hair every day. It’s too much on my joints.”

21. “I always keep a ‘pharmacy bag’ with me that has my allergy medicine, painkillers, an emergency inhaler, a fan, etc. and it has come in handy so many times. I also always keep my knee supports and an Ace bandage with me because more times than not, I find myself needing them to be able to walk.”

22. “I use a brush to do dishes instead of a sponge because scrubbing with a sponge makes my fingers hyperextend.”

23. “I use my heating pad or ice packs whenever possible as a natural way to relieve pain. My headache hat and my heating pad are my best friends!”

24. “I have vascular EDS and heat causes serious problems. I use cooling cloths, infusion cups to make sure I get plenty of water with fresh fruit, get groceries in the evenings when it’s cooler and stay indoors during the hottest parts of the day.”

25. “Going to a pain doctor that understands. It took me, as a 23-year-old, a year and a half to find a pain clinic that didn’t discriminate against a young girl like me, that understood my pain disorders and my needs.”

26. “Ultra Strength Bengay cream is my best friend. I use it practically all over and it feels amazing.”

27. “Comfy clothes and pajamas. I can’t stand certain fabrics touching me so the material is the most important thing in clothes.”

28. “I keep my house clutter-free. No knick-knacks lying around to trip and fall over since I do that enough on flat ground.”

29. “I take a muscle relaxer every night. It helps me by giving the muscles around my joints a rest. Then I use braces and KT tape when the pain really flares up.”

30. “Buy bags of frozen prepped vegetables. For example, I buy frozen chopped peppers and onions. I know you can get all sorts of other stuff too, like garlic, ginger and even sauces. But for me, just having that main bit of prep done helps a lot.”

31. “If I have to go to the emergency room, I now take my pillow with me because I know I’ll be there for a few hours at least and want to be as comfortable as possible.”

32. “Friends who make the effort to understand! One of the nicest things anyone has said to me was, ‘I Googled EDS last night. It sounds really tough! How are you doing?’ Small gesture, but meant the world to me.”

32 'Hacks' That Can Make Life With Ehlers-Danlos Syndrome Easier
2k
2k

RELATED VIDEOS

TOPICS
, Listicle
JOIN THE CONVERSATION

Why I'm Speaking Out About My Chronic Pain

262
262

How do you learn best? My learning style is very hands on. I benefit from taking notes, as the physicality of writing down information makes it easier for me to store. I also appreciate, and can better recall, demonstrations over presentations. But that’s just learning on the surface. How I truly evolve as a person is by engaging in difficult conversations – asking questions that might seem trivial to some, listening to others’ opinions which may oppose my own and seeking out tough-to-swallow truths in the hopes of discovering new depths.

 

Weaving chronic illness into everyday conversation is a lot like speaking about grief. Each day feels a little bit like the last, so the dialogue can get stale. But that doesn’t mean it isn’t real or any less important. No one really knows the right thing to say – so they often choose to avoid the subject matter entirely. I am guilty of this, too. It can be tough to ask people going through challenges about them directly. Sometimes, I think I am scared of the answers. Other times, I am not sure if I will know what to say in return. What if I am not comforting enough? What if I am just another reminder of their hurt or loss? What if they are at their breaking point and my question pushes them ever so slightly over the edge?

But here’s the danger in that logic. If we do not talk about what makes us sad, what demons we face or what battles keep us up at night – we are only encouraging others to hide them, too. And this is not OK. This creates a chain reaction of fear which is deeply rooted in something so simple, yet so damaging: mystery. We fear what we do not understand. And we each have a responsibility to discuss whatever haunts us, with searing honesty. We can’t expect other people to ask the tough questions if we aren’t willing to bridge the subject matter in the first place.

I used to hide my disability and struggles with chronic pain from the world. When I met people for the first time, I would speak about my love of headbands or my deep affinity for sending snail mail. I would think, speaking about how much pain I am in is not what they want to hear because it’s a downer. So instead, conversation would flit in and out of superficial subjects like the weather or how good Sriracha is on every food group. But this pattern of avoidance did not help anyone, you see. Frank conversations about what people go through need to happen. This is the only way we can move towards acceptance and better representation of that which makes us different. Plus, chronic pain is my reality, and is the ocean in which so many other people are drowning, so it doesn’t hold more or less weight than a full-time job or a couple’s plan to get pregnant. It is my truth. It must be spoken.

In an effort to heed my own advice, I have been openly speaking about my pain with strangers. Don’t get me wrong, it doesn’t come up in the initial introduction or in line at the grocery store, but I don’t hide it as much anymore. This exchange is fundamental to learning more about how other people orbit the sun. After all, if we don’t explore how others live, how will we ever evolve?

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via OGri.

262
262
TOPICS
JOIN THE CONVERSATION

How My Twins' T-Ball Team Learned About Inclusion

532
532

Like many 4-year-olds, my twin boys, Hunter and Troy, love baseball! But when it came time to sign them up for t-ball, I couldn’t help but be anxious.
Inclusion Evolution.
Typically, parents wouldn’t bat an eye at signing their twin boys up for the same t-ball team, but our situation is not so typical. Troy has Down syndrome, and I wasn’t sure how he would be received. Should I call and tell the coach that one of my boys has a cognitive disability? During the first practice, should I describe Troy’s low tone and how it may impact his ability to keep up? During the games, should I apologize for my son’s performance?

In the end, I didn’t say anything.

Troy on the ballfield.
Troy on the ballfield.

We play backyard baseball all the time. Troy is as good, if not better, than his typical twin brother at hitting, throwing, and catching the ball, which is to say they both suck as much as any 4-year-old who has never played. I hoped his team would accept him as any other first-time player.

We showed up to the first practice, and I could tell Troy was really nervous. Even though he’s as good as any other kid his age, he hates crowds. I hear about other kids with Down syndrome loving the spotlight. Troy is the opposite. If you laugh or cheer at his successes, he shuts down. I’m not sure if he thinks people are laughing at him, or if it’s too much sensory overload.

His seemingly lack of interest in the game was predictable, but still bummed me out. I wanted his team to see the enthusiastic ball player I watch in our backyard. I did mention to his coach that Troy has Down syndrome, and he may or may not decide to play. “That’s OK, right?” I asked with bated breath.

Coach Kyle, a laid-back father of two, said “This is my first time coaching. I think we’re all nervous. Let’s give him some time to get used to his team and the game.”

This is inclusion at its finest, and Coach Kyle seemed to come by it naturally. There was no hesitation to include Troy. Just an open-mind, and support if needed.

Troy at the base.
Troy at the base.

I wish I could say the team’s acceptance of Troy made his apprehension to play go away. It didn’t. He practiced with the team, he even played the field a few innings each game, but when it came time to hit the ball stage fright took over.

It took five games for Troy to finally hit the ball. But when he did, you could see the pride and pure happiness in his face! You could see the excitement in his teammates’ and their parents’ faces! They were genuinely excited to have Troy as part of the team, and more importantly see him succeed.

Troy at bat.
Troy at bat.

One particular player, 5-year-old Michael, always made a point to talk to Troy during the games he didn’t play. When Troy played his first full game, you could see the impact it had on Michael. He was so proud of his friend.

Although most of the kids on Troy’s team are too young to understand Troy’s difference, there’s still an important lesson to be learned by his presence. I know these sports encounters will become less as Troy gets older. We expect that Troy will play on typical sports teams, as well as in the Special Olympics. But these early encounters can change perceptions of individuals with Down syndrome, and open doors for Troy later. His teammates will one day be employers, teachers, or friends who will remember that Troy is more alike than different.

Follow Troy’s journey of inclusion at www.inclusionevolution.com.

We want to hear your story. Become a Mighty contributor here.

532
532
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.