Day 1:
Hello, I'm Megan! I have Spina Bifida.
Spina Bifida is a congenital (which means present from birth) illness/disability, so I have been chronically ill all my life in various ways. Due to my condition, the nerves in my spine are affected and certain bodily functions and sensations can be extremely painful or slow. I experience severe pain because of issues with my IG tract/digestive issues. I also experience pain and edema in my legs due to those affected nerve endings.
Day 2:
My illness has affected my ability to be comfortable throughout the day. It's affected my self-esteem, my ability to feel happy in my own body. It's mostly housebound me and I suffer from mild to moderate situational depression/anxiety. It's brought down my worth so much, that I have co-dependency issues. I don't trust myself, I don't trust who I am or how I feel. I can go an entire day in pain and wonder if it's "normal" or if it's something serious. I feel like sometimes my pain and body is a game of russian roulette. It's affected my energy and sometimes I isolate myself, just so I don't have the burden of having to expend more energy talking. I don't like going out because I'm afraid people will see me and judge. It's affected relationships due to me never wanting to spend time with them. I've been called, weak, fake, a liar, and "too sensitive".
@KindListening Hi, I've been feeling really similarly partially due to my illness. I guess I've always felt incompetent and inferior, and my symptoms getting worse definitely didn't help. It doesn't help when others don't understand, and I'm so sorry you've had so many negative comments. I don't blame you for isolating or feeling really down at all. It's only natural in that situation. Just wish you the best and hope you can learn to better love and trust yourself! 
@huggerofcats
Thank you! xx
P.S. Love your username! 
@KindListening Hi Megan, welcome to the challenge
@KarenWhitakerDipSW Thank you
@KindListening My official diagnosis was a few hours after I was born. Doctors told my parents I had Spina Bifida but when I was being born (I was born through cesarean section) they knew right off something was wrong. Matter of fact, the first words I heard when I was born was, "Uh oh...Uh oh!!!". 
@KindListening Day 3:
@KindListening
Day 4:
My illness has been the norm for them but there are some times that I feel like a burden because of certain aspects surrounding my disability, that I do not wish to share here. I can't always do what I would like and that sometimes creates conflicts with family members. Even though my family has always known me with my physical challenges, I'm now experiencing emotional changes as I've aged. I experience a lot more depression and anxiety today and I know that it's not always easy for them to understand, since I've never been really depressed before. My friends on the other hand...well I can't say I have too many of them. I only have online friends now and the very few that I do have, aren't really affected by my disability. The friends I used to have in my city, felt dragged down because of my limitations, so they stopped contacting me.
@KindListening
Day 5:
Being chronically ill makes me feel very isolated. I get depressed quickly talking about my illness and my struggles (it's definitely been a struggle typing these emotions out). It makes me feel like I am less than what "normal" people are and that I am not worthy or able to have certain types of love. Sometimes I have even struggled with thoughts of "Am I supposed to be happy?" or "Maybe I should just be content with always never really being satisfied in life or being resigned to the fact that I will always suffer."
However, I think the biggest issue I've had with being chronically ill is reaching out to others for love and support. When you're in a place where you have those who physically care for you in some sort of capacity, you feel like you would be [more of] a burden to ask of anything more. I've even had certain family members tell me well into adulthood that I should "be a good little girl and be nice" because I am physically vulnerable due to my condition.
I also almost think it's even a matter of pride. I have always been very stubborn and strong willed. I've never really wanted to seem weak (I remember as a little girl, I told my family that when I grew up, I wanted to be a lion because lions were strong ). As time went on and I got older, I started to become very lonely so I reached out to people that maybe I shouldn't have to feel that "love" that I so long desired but never asked of or even admitted I felt. It brought me to places that I still struggle with the memories of, all due to the fact that I suffer from suffering. Emotionally, physically, spiritually I struggle. It is my cry to the world but nobody hears...nobody listens.
That is how being chronically ill makes me feel.
@KindListening
Day 6:
This may be a short one since I have always been chronically ill. I think I would have told myself, when my symptoms got worse to keep motivated and don't give in. I for many reasons gave up on trying to keep myself physically and emotionally well and I suffered greatly from that. The biggest thing I would have told myself is never stop moving. It'll be the death of you if you do.
@KindListening
Day 7:
I think the biggest realization I had was when I got a few years older, into adulthood. As a child, I always thought that I'd be alright or that I'd lead a "normal" life (maybe I thought I'd "outgrow" my disability). However, that really hasn't been the case at all. The most painful realization is that I know that I'm going to be ill all my life. However I try to make the best out of it...I'm still working on it 
@KindListening You are an amazingly strong person. Thanks for sharing your story so honestly. 💕💕💕💕
@KarenWhitakerDipSW
Thank you so much!
@KindListening
Day 8:
Wow, I'm not sure to be honest. I'd like to say that I'll be happy or that things will improve in years to come. I'd like to say that I'll be in another house that can provide independence for me and a freedom I have not felt in quite a few years. However...I'm not sure. I've always said, never look to the future, always look at the path you take each footstep at a time. Being someone who is chronically ill...its scary to think about the future. It's always been a fear in my mind that things will get worse or that all I look forward to is more disappointments and pain. I'd rather look to the here and now instead of the future. That's all I have, that's all everybody has...
@KindListening
Day 9: I've tried many many different doctors/therapies/medications to alleviate some of my most severe issues but sadly, it has not worked. Unfortunately when you have a deformed spinal cord, there is only so much the world can do for you. I have tried eating cake for an alternative therapy but tests are inconclusive yet (must eat more cake).
Sorry for the really lame joke there...just didn't have much to say...
@KindListening
Day 10:
I know this is going to sound so silly but I love candles. Especially Yankee Candles. Anytime I smell them, I always feel more at peace and happy. I am very much a sensing person and my mood can be changed with a nice smell. It makes things easier for me because it's relaxing. I also love listening to music and watching youtube, it distracts my mind and brings me out of my depression. I also use 7cups as a way of being able to help myself when I feel very low. It's been a lifesaver many times. It's little things like that, that helps me.
@KindListening
Day 11:
I believe I have this illness for two reasons. I do believe in God, so I believe suffering is part of a bigger plan. However, I also believe I am no worse or better than anyone else, that's why I have this illness. I wasn't picked out of a line of beings to have this chronic illness because I am bad or good or to compare my suffering against any other's sufferings. I have this illness because that's how I was made and that's how I was supposed to live in this world.
@KindListening
Day 12:
I guess the best way to explain what it feels like to like with chronic illness is, it's very exhausting. I tend to get exhausted and overwhelmed easily by the littlest things, while it's so much easier for someone who is "normal". Even getting up and getting a glass of water can expend so much energy, that sometimes I just ignore my basic needs. (note to all those who are reading this: don't do that lol)
It feels at times, you are in a neverending struggle with yourself and trying to find happiness. It can be very isolating too, it's like you live on a planet all by yourself. Sometimes you really feel like you do not belong to this world.
@KindListening
Day 13: Trigger warning: Illness/despair/hopelessness/mental illness/extreme pessimism
Very much so. I've developed a lot of unhealthy coping techniques in order to survive (codependency, suppressing emotions, bottling in feelings and having severe panic attacks afterwards, OCD tendencies). I also have situational depression, anxiety, poor self-esteem/worth due to my pain and unhappiness with my living arrangements that I am forced to be in due to my illness. The worst effect it's had on me is feeling like I'm not living but merely existing. Even the littlest things like going outside for fresh air or just relaxing is very hard and sometimes impossible. My feelings are akin to a bird plucking out all it's feathers because of stress and depression. I feel like any potential I had as a person is gone due to the affects of my illness. Sometimes I feel like I am just waiting for death to take me, that the joy I once had is gone, never to return. It's definitely hard to find peace when you can't find rest, it's pretty much the antithesis of it.
Are my negative/pessimistic feelings becoming a self-fulfilling prophecy? Perhaps..in fact I'm sure it is. Am I helping myself by feeling like my life is worthless? Nope. IS my life worthless? Hell no! That's why I'm trying to change and that's why I'm doing this. So I can see what kind of negative nancy I really am.
@KindListening
Day 14:
1. I'm grateful for my life
2. I'm grateful for my family
3. I'm grateful for 7cups
4. I'm grateful for my friends
5. I'm grateful for pain-free days
@KindListening
Day 15: (woot I'm back!)
I would say to those who have been newly diagnosed is to live each day to the best of your abilities. Do not be discouraged by others and do not allow anyone or anything to rob you of your peace. Do not compare yourself to anyone else and acknowledge your achievements, even if it is merely getting out of bed. Remember that storms don't last forever and how you feel on a bad day, will not either. You are strong, capable and brave.
If you are having troubles with being happy or finding peace, the only way you will find it is if you keep on living. Live each day with the intention of improving the quality of your life, even the simplest of things can be a part of that. Just don't give up and never surrender.
@KindListening
Day 16:
I love Mother Theresa and she has been a huge influence on my life, especially here at 7cups. Even though this quote doesn't really relate to my illness I have been accused of faking kindness/happiness towards others, because how could I be happy or why would I be kind to others in my position in life? I as much as anyone else who have impolitely pointed out, have struggled with trying to find peace. It's easy to get into a self-defeating attitude of, why should I be kind to others? However, I have learned that when I am kind to others, I find peace and happiness in giving. I learn things about myself that I wouldn't have known if I hadn't and instead of allowing myself to become embittered by the many sorrows of life, I am trying to rise above it. It may not be the life I would have picked out for myself but it is my life none the less and I am grateful for it.
@KindListening
Wow, I can relate to so much of what you say, and honestly, it's kind of relieving. I'm also stuck in a probably unhealthy environment and am currently unable to move out due to disability, incompetence, and family-related issues. Living in this environment is definitely worsening my mental health, especially since since a parent's mental illness isn't under control (which is also worsened by their chronic pain and illness).
Walking around/getting fresh hair definitely helps my mental health, too, but it can give me breathing issues (if it's humid), or make me feel horrible the next day. It seems like whatever helps my mental health makes my physical health worse, and vice versa. Definitely relate to that horrible empty feeling of just... existing (or aimlessly floating around as I usually call it). Or maybe we're feeling different things lol. either way, it's hard for both of us.
Don't think I feel up to going into anything more negative, so I'll just end this already-too-long post here. Usually can't talk to people too easily, but there's something different about you! Who knows what it is. Sorry about this post being so self-centered. Hope you can find peace somewhere.
@KindListening Interesting, candles seem to help me, too! I think I've heard that the part of the brain that processes scent is really close to the part of the brain that holds memory. Therefore, scents have a strong ability--especially when sensed in good memories--to bring back good emotions or brief memories assossiated with them. Sadly, a smell can easily bring back bad memories, too, but of course, we may not realize it's the smell that's leading to the brief memory or emotion. I've heard all this a while ago, so it may not be entirely correct, but I thought it was interesting and worth sharing! (Sorry if this was unrelated/annoying in any way. Oops.)
@KindListening About feeling like you need to tough it out, I know that struggle and am often ashamed of myself for "failing" to be strong. 
It doesn't help that the "ideal" and "inspirational" chronically ill and/or disabled people are those who act emotionally unaffected by their illness(es). I mean... that's great if you can naturally accept being chronically ill, but many people naturally have to go through a grieving process. And that makes perfect sense because often, we're losing the future and way of life we looked forward to having. This is what a lot of able-bodied people (those who expect chronically-ill people to act unaffected by living with chronic illness), don't seem to understand. They don't know how much strength it takes to keep pushing forward and even to be honest and talk about how illness makes them feel. You seem really strong to me... if that helps at all.
@huggerofcats
Thank you for your kind words. I'm glad someone is reading my 30 day challenge (although I haven't quite completed it yet...opps lol). I'll have to do that soon! And yeah, candles always help me to calm down when I'm in pain, it's definitely true what you said
day 25
There isn't many activities i've done, to be honest... maybe learn how to ride a wheelchair without falling, freelancing a bit, learning french (I only know how to say hello) and cook
Day 16 Favourite quote
If you always do what you always did, you will always get what you always got.
Day 26 y'all!
I believe they're mothe thoughtful of disabilities in general, also to be more aware of their own health on the down side my family is very aware of my illness so if I sneeze too much they pester me a bit. So, so far it's been a so so impact.
Day 27 is here and is a tough one...
Uhm... I have no idea, honestly. Maybe a reminder to never give up. To push through and hang on and that I got this.
All those reminders get me through rough times
@joha87 Never give up. I love that. A message for all of us 🙂
Day 17 How might things be different if I wasn't ill?
Maybe I could do a 30 day challenge in 30 consecutive days?
Day 18. Am I a better person?
We grow through all life's challenges. Being ill has forced me to learn lots of stuff. Its useful stuff and I love to share it. That is why I'm here.
Does that make me a better person? I have no idea.
Day 19 How do you feel about the future?
I feel incredibly positive. Now I have the right treatment, my body is getting stronger every day. I've a long way to go, but I'm on the right road.
And hearing aids get better every year. Maybe, one day in the future they will be good enough to let me stop lipreading.
Day 28...
I'm not very adventurous to be honest but, I manage to do everyday stuff (sans the activities that require 2 legs) without much fuss and that is something I've learned to not take for granted.
Day 20 Have you met anyone with the same illness?
Early deafness runs in my family, so I've watch other people learning to cope with varying degrees of success. It gave me ideas about what would help and hinder, but I think it also contibuted to the time I spent in denial. I didn't know how well I might cope, so pretended it wasn't happening to me.
My best friend also has JHS, but like me didn't know what it was until I got my diagnosis. We used to avoid games lessons together at school, and have shared similar challenges through our adult lives. Now, I hope we can go through rehab together as well, but she is a bit in denial right now. I'm hoping seeing my progress will help her beleive she can improve.