(Closed) 30 things about my invisible illness: Chronic Bee's

posted 5 years ago in Wellness
Post # 3
Member
1671 posts
Bumble bee
  • Wedding: June 2014

@MelodicCallie:  Wow. It’s very hard for me to read long posts like this but I couldn’t stop reading yours.

 

I am so so sorry that you have to live with this illness. It is amazing that you ran a 5k, that is such a huge accomplishment. I know perfectly healthy people that can’t do that.

 

I had never heard of EDS until now, I’m assuming from what I read that it is very rare. Does it often co-occur with fibromyalgia? I read that there are different types and I pray you have a more managable one. 

Also I want to tell you that I love that you posted this, for many reasons. Thank you for bringing this to my attention. What you wrote was truly inspirational, and I truly appreciate the oppurtunity to understand chronic illnesses through your prespective.

Post # 4
Member
5405 posts
Bee Keeper

Commenting to come back and reply when I have time

Post # 6
Member
1361 posts
Bumble bee
  • Wedding: November 2014

I don’t even know what to respond, except for thank you. This is wonderful, and I am so sorry. God has great plans for you, don’t ever forget that, He has control over every situation and nothing is done without a reason. Cyber hugs

Post # 8
Member
2055 posts
Buzzing bee

@MelodicCallie:  Thank you for sharing your story with all of us and for spreading awareness. We spend too much time judging, assuming, and presuming about one another, it is just so humbling and eye-opening to read such a raw, honest post detailing what it is like to walk a mile in your shoes. I fervently believe in the expression “strength in numbers,” and I hope that others out there, who are in a similar boat, can find strength, hope, and courage from your beautiful post. God bless.

Post # 9
Member
1671 posts
Bumble bee
  • Wedding: June 2014

@MelodicCallie:  Thank you got putting it out there! So many people don’t share and it’s sad because other people can learn a lot from your stories.

 

Wow, I read that it was an autosomal disorder so it makes sense to run in families but so strange at the same time because you never hear of it. I guess that’s why/because it’s “invisible”.

 

Yes I think fibro has turned into a slightly abused broad diagnosis. I guess it’s easy for doctor’s to use when doctors don’t have answers. And doctor’s hate not having answers. It just makes you realize how little we know about the human body and it’s “disorders”.

 

I didn’t know that fibro affected taste. I only knew about the painful effects. I work at a free clinic that specializes in chronic conditions so I see a lot of fibro patients come through there. But most of them only get pain medication, nothing else.

 

Is there a treatment for EDS? Or is mostly just handling the pain and effects? 

 

Truly thanks for sharing. I hope that I can use your story to help others and hopefully this alerts other bees for the need of awarness.

Post # 10
Member
2073 posts
Buzzing bee
  • Wedding: July 2012

@MelodicCallie:  Thank you for posting this. I so identify with some of the things you say as I have several chronic illnesses myself-Fibro being one of them. The fog is really just awful sometimes isnt it?  I commented on and followed your other thread as well.  

 

Thanks for sharing.  Hopefully one day, people with chronic but invisible illnesses won’t have to worry about being judged by others who may or may not be able to live a day in the life ofhthe chronically ill.  Kudos to you for putting it out there like that. 

Post # 13
Member
5371 posts
Bee Keeper
  • Wedding: June 2014 - Ontario, Canada β™₯ EDD- April 2016

1. The illness I live with is: ?? Still undiagnosed (likely something to do with my thyroid and other hormones- especially testosterone and estrogen). My symptoms are: nausea (all day and random, after too much movement, wrong positions, etc.), intestinal cramping, air hunger, brain fog, emotional mood swings, lack of energy/tiring easily, hot flashes, dry skin – only on face, loss of appetite, weight loss, extreme pain during period, dizziness, headaches, bladder cramping… the list is more detailed, but those are general symptoms πŸ™

2. I was diagnosed with it in the year: Still waiting πŸ™

3. But I had symptoms since: December 6th 2011

4. The biggest adjustment I’ve had to make is: Learning to slow down and be proud of myself for the little things. I’m so used to accomplishing a lot of tough things at once and I’ve had to learn to take breaks and not feel bad about it.

 

 

 

5. Most people assume: I’m healthy, because I appear “normal”.

 

 

 

6. The hardest part about mornings are: I usually feel the most nauseous in the mornings and it can be tough to get ready if I have to get up earlier than 7:30 am (that’s when I feel the worst).

7. My favorite medical TV show is: Grey’s Anatomy

8. A gadget I couldn’t live without is: My phone, because it’s how I keep in touch with my fiancé, family, and friends, and my laptop because it helps keep my mind off of my illness.

9. The hardest part about nights are: Nights are usually the easiest for me, but it can be really hard getting to sleep if I’m nervous about something. Sometimes I have pretty bad anxiety when I’m drifting off to sleep and it can make me feel weird.

10. Each day I take: Natural, plant-based, adrenal support pills. It helps my mood and energy levels. Nothing that has been given to me by my medical doctors have really helped.

11. Regarding alternative (Holistic) treatments I: I eat much healthier now and have tried different alternative treatments from my Naturopath. He’s amazing and really helped me out and listened to me when no one else did. I’ve tried lots of different natural medicines and tests and the Pulsatilla tablets helped the most other than the IsoCort (natural adrenal support).

12. If I had to choose between an invisible illness or visible I would choose: As annoying as it is to have people assume I’m okay because I don’t “look sick”, I would choose invisible, because I like being able to hide my symptoms and sickness- at least I have control over that.

13. Regarding working and career: I just graduated from university and was a student full-time even when I was sick during my third and fourth year. I don’t know what kind of job I’ll get, because my sickness makes a set work week difficult for me. I get exhausted SO quickly and I feel much sicker when I’m working. Luckily, my fiancé is super understanding and just got a full-time job and is okay with me working as much as I can handle- no pressure (:

14. People would be surprised to know: That I run a support blog and Facebook page. I’ve only told close friends and family, because it’s very personal and I don’t want followers just for the sake of it. I want readers who find my work meaningful and inspiring. It makes me so happy when people tell me that I’ve inspired them and helped them deal with their chronic illness (:

 

 

 

15. The hardest thing to accept about my new reality has been: That I’m dependent on the people around me. I’ve always been an independent and ambitious person and it’s hard to come to terms with the fact that I rely on my fiancé and family for so many things (financial and emotional support, and help accomplishing tasks when I’m really sick)

16. Something I never thought I could do with my illness that I did was: Finish university and make the Dean’s Honour List. My school is one of the toughest in Canada and I was so proud to make the Dean’s list two years in a row – I couldn’t even do that when I was healthy.

17. The commercials about my illness: Not sure yet, still waiting for a diagnosis.

18. Something I really miss doing since I was diagnosed is: Being able to do anything in the world without planning for my illness. I loved feeling free. It’s exhausting to always think about how an activity will affect my symptoms or how my symptoms will affect my plans.

19. It was really hard to have to give up: Teacher’s college. I know that I would be miserable though and there’s no way I could do my placements to my full potential. I had wanted to be a teacher for like ten years and I thought it would be cool to teach with my mom πŸ˜‰ Also, baths. My symptoms get worse in the bath and in hot showers so I’ve had to cut out baths πŸ™

20. A new hobby I have taken up since my diagnosis is: I love writing for my blog and creating content in Photoshop.

21. If I could have one day of feeling normal again I would: I would get up super early and go for a bike ride.. I would hang out with my family and fiancé and go to the zoo or to a movie or shopping. I would go out for lunch and supper and eat the things that usually make me feel sick. I’d want to go for a drive at night and stay out late walking by the water. I would want to do anything that is hard for me to do now that I’m sick with something so unpredictable.

22. My illness has taught me: To find the beauty in everyday. I’ve had to learn to love my new normal and to appreciate where I am in my life and how this fits into my journey and my story. I appreciate the little things now and find things to be thankful for each day. I’ve learned to make my own happiness during bad tummy days.

23. Want to know a secret? One thing people say that gets under my skin is: The assumptions and stereotypes. “You don’t look sick”, “oh you’re looking nice, you must be feeling better”, “I totally understand what you mean, one time I had the flu”, “It’s probably just stress”, etc…. I also hate symptom shaming. I know people don’t always know they’re doing this, but be careful what you say is “gross”. Someone around you might be sick with an invisible illness and you might be hurting their feelings.

24. But I love it when people: Are genuinely trying to understand my situation and are willing to trust me as an expert of my own body.

25. My favorite quote that gets me through tough times is: “Today is the tomorrow you worried about yesterday”, “you were given this life, because you are strong enough to live it”, and “people find it so difficult to be happy because they see the past better than it was, the present as worse than it is, and the future less resolved than it will be”.

26. When someone is diagnosed I’d like to tell them: Just remember that you are NEVER alone and you are so STRONG and BRAVE. You CAN do this, just keep trying and fighting.

27. Something that has surprised me about living with an illness is: How frustrating doctors can be. If they can diagnose you easily they’re helpful, but if they don’t know what it is then it must be in your head. It’s very discouraging and it makes it difficult to get tests done. Also, it surprised me that after a ton of blood tests I still haven’t gotten used to getting my blood taking- I hate that anticipation!

28. The nicest thing someone did for me when I wasn’t feeling well was: I love getting sweet notes on my blogs and when my family and fiancé just reassure me and legitimize my symptoms. I love that they don’t push me and always ask me what they can do to help. I love that they make and buy me the foods that I’m able to eat and always make stuff for supper that I am in the mood to eat (even if it’s different than their meals). They also really LISTEN to me and REMEMBER and try to UNDERSTAND what I’ve said.

29. I’m involved with Invisible Illness Awareness becauseSometimes I use so much energy trying to seem “normal” and hide my symptoms that I don’t realise that there are probably a lot of people around me doing the exact same thing. Just another reason to stop symptom-shaming and promote chronic/invisible illness awareness! I’m sure we would feel much less alone if we all stopped trying to hide our illnesses. Think of how much energy we would save- trying to look healthy when you’re not can be hard work πŸ˜‰

30. The fact that you read this list makes me feel: less alone and understood (:

 

 

 

 

 

 

 

Post # 15
Member
294 posts
Helper bee
  • Wedding: August 2013

I was diagnosed with fibro about a year ago. I have the touch/pain sensitivity and exhaustion mostly. I understand the 6 hours or 20 hours of sleep thing- so frustrating. I am finishing my Master’s degree in a few months hopefully, if I can concentrate enough to write my thesis. My mom had MTCD (mixed connective tissue disease), RA and lupus and my dad was recently diagnosed with Wegner’s, so I hit the autoimmune genetic jackpot, not really suprised when one presented itself. I’ve never heard of EDS before. Thanks for the insight.

Post # 16
Member
9648 posts
Buzzing Beekeeper
  • Wedding: April 2019

@MelodicCallie:  Thank you for sharing, I am so sorry for what you are going through. It is hard living with an invisible illness, so I will join in the 30 questions.

1. The illness I live with is: Bipolar Disorder

2. I was diagnosed with it in the year: Major Depression March 2012, rediagnosed as Bipolar in March 2013

3. But I had symptoms since: childhood

4. The biggest adjustment I’ve had to make is: realising the mood swings aren’t normal, that I will be battling this for the rest of my life, and will have to be medicated most likely forever.

5. Most people assume: it’s not serious, that I am just having a bad day, or a really good day. That I just need to calm down or get over it 

6. The hardest part about mornings are: getting up and out of bed, feeling motivated. Some days I bounce out of bed but most I just don’t want to get up

7. My favorite medical TV show is: 24 Hours in Emergency

8. A gadget I couldn’t live without is: My phone and my laptop, they connect me to the world. And at the moment, I need my laptop for my only source of income (selling stuff on eBay)

9. The hardest part about nights are: getting enough sleep. I usually fall asleep quickly but wake 2 or 3 hours later, stay awake the rest of the night and get sleep during the day. 

10. Each day I take: Lexapro and Lithium.

11. Regarding alternative (Holistic) treatments I: talk to my fiance about what I am feeling with regards to my illness, and will be getting relaxation tapes soon from my aunt.

12. If I had to choose between an invisible illness or visible I would choose: They both suck, but people seem to understand a visible illness more. “If they can see it it’s real” sort of thing. But I would choose neither.

13. Regarding working and career: I am unable to work at the moment, but am still studying a graduate degree part time. I hope once my medications are sorted and I am feeling ‘normal’ I can get back to working.

14. People would be surprised to know: how serious this illness is. It is not just mood swings, it is not just PMS or having a bad day. It is a seriously dehabilitating illness that if untreated can lead to suicide.

15. The hardest thing to accept about my new reality has been: the stigma associated with it. Most of my family has been very accepting, although my mother and Future Mother-In-Law both were very doubtful of it, my mother has come round but I don’t think my Future Mother-In-Law has yet. She keeps saying “if it is that…” even after I told her I got the second opinion that she requested.

16. Something I never thought I could do with my illness that I did was: find new inspiration to try new things

17. The commercials about my illness: I can’t remember the last time I saw an ad for bipolar disorder, if ever.

18. Something I really miss doing since I was diagnosed is: seeing friends regularly, for years though I haven’t coped well with going out and about, catching up with friends often, so I miss being able to do that, and not freaking out at the thought of meeting up with a group at a restaurant or something.

19. It was really hard to have to give up: being able to earn money by working. I haven’t worked in a few months, have no income besides selling old stuff on eBay, which is not very lucrative. 

20. A new hobby I have taken up since my diagnosis is: I am hoping to start doing some mosaic soon, something fairly easy that I can put my own mark on,

21. If I could have one day of feeling normal again I would: go out and about, catch up with friends. 

22. My illness has taught me: that things I thought were normal for me actually aren’t, and that with medication and therapy they can be controlled (like crazy spending sprees)

23. Want to know a secret? One thing people say that gets under my skin is: “Calm down, get over it.” I can’t just get over it, it is an illness, not just a fleeting moment of feeling. It is a dehabilitating illness that I will have for life, I can’t just “calm down” or “get over it”

24. But I love it when people: are just there when I need them, don’t tell me what I am feeling is wrong, don’t tell me to calm down. Are just happy to listen and give me a cuddle if I need it – my fiance has been incredible

25. My favorite quote that gets me through tough times is: “Love looks not with the eyes but with the heart” William Shakespeare

26. When someone is diagnosed I’d like to tell them: You’re not alone, there are others with this disease and we all are here to help, listen, and support. +1

27. Something that has surprised me about living with an illness is: how much stigma there is in the world about mental illness. We aren’t crazy, we just have an illness. But luckily I have not personally had to deal with that stigma yet.

28. The nicest thing someone did for me when I wasn’t feeling well was: just hugging me, telling me they were there for me, and would do whatever they could for me. My fiance always says things like that, he is the only one (besides my psychiatrist) that I feel I can fully confide in without fear of judgement or criticism

29. I’m involved with Invisible Illness Awareness because: Awareness will not only better my quality of life, it will better yours. You can learn from our pains. You can learn to enjoy life, health, and ability. You can learn that we all have something that affects us and we all have hardships. Every encounter in your life is facing a huge battle be it visible or invisible, emotional or physical. We all are going through something and we all deserve a break. +1

30. The fact that you read this list makes me feel: heard. +1

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