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Category Archives: Stories from others

STORIES FROM OTHERS: Lady Gaga shares her pain

10 Tuesday Oct 2017

Posted by Cassandra Carr in Stories from others

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STORIES FROM OTHERS: Lady Gaga shares her pain

Image courtesy of Netflix documentary

This is not the Lady Gaga we’re used to seeing, is it? In a new Netflix documentary, Lady Gaga talks quite candidly about her struggle with fibromyalgia. Other celebrities have spoken about how they handle chronic illnesses, but Lady Gaga really didn’t hold anything back (I didn’t think she would).

One quote from a press conference she did shortly after Netflix released the documentary explained why she was so candid:

“My pain does me no good unless I transform it into something that is. So I hope people watching it who do struggle with chronic pain know that they’re not alone. It’s freeing for me…and I want people that struggle with it to hear me,” Gaga said.

She also said, “There is a degree of self-deprecation and shame with feeling in pain a lot. And I want people that watch it — that think there’s no way I live [with chronic pain] because they see me dance and sing and don’t think that could possibly be — to know I struggle with things like them. I work through it and it can be done. We have to stick together. I don’t have to hide it because I’m afraid it’s weak. It’s a part of me, and I’m grateful to Chris for caring. The compassion is overwhelming. That’s why it makes me emotional. It’s very touching.”

I heard so much of the things I think and feel every day reflected in her words. I hope you all have a chance to watch the documentary. If you saw it, what did you think?

STORIES FROM OTHERS: Things we hide because chronic illness depression

12 Wednesday Jul 2017

Posted by Cassandra Carr in Stories from others

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STORIES FROM OTHERS: Things we hide because chronic illness depression

 

 

Image courtesy of Creative Commons, used with permission from Alachua County

We all know we hide things, especially all the trials and tribulations we face on a daily basis. We feel like burdens or complainers, so we keep our mouths shut and suffer silently. See if any of these sound like you… (Source: The Mighty)

1. “I hurt, every day. And that when I back out of plans or don’t respond to you. It’s not because I want to. It’s because covering up the hurt and sadness I feel every day and painting on a smile is exhausting and takes up all of my energy — so I isolate myself because it’s so much easier… but I would never tell you that!”

2. “I need them. I hate admitting I need help or I need someone, but if it’s one thing I need to survive my depressive episodes, then it’s my friends. Even if we sit in the same room on our phones, their presence is better than nothing.”

3. “I will always have bad days, so please don’t be disappointed when I succumb to the darkness after so many good days. Just support me the way you did at the start and don’t grow impatient with me.”

4. “Every time I pretend to be strong enough and help, everybody else pick up their pieces, and some of my own crack harder and deeper. But I can’t let anyone else help me. Cause I don’t want to be a burden.”

5. “Some days I can’t leave my bed, can’t shower, can’t change my clothes and brush my hair. I’m not gross. I’m not lazy. But I don’t want to be embarrassed because I physically can’t do things that seem so simple and mundane to many people.”

6. “I spend hours in bed daily, unable to force myself to get up and shower. Conquering the day or going to work always seems like getting ready for war.”

7. “My depression makes me feel like I ruin friendships. My friends say they’re there for me, but when I reach out, I feel like I’m being burdensome. Also, I don’t need you to try and ‘fix’ me, but I just need you to sit there in the darkness with me and maybe hold a flashlight or candle until I can hold it myself.”

8. “I need you. I push you away, but it’s not my intention. I may say things I don’t mean. I may seem like I don’t care, but I do. But you need to know, all you can do is hug and try to support me. You can’t cure my depression. I don’t need it. I just need someone to hold my hand and help me get through it. I don’t say it enough, but thank you. And don’t feel guilty, cause you can’t always make it better. Just being there for me shows a lot.”

9. “When I cancel plans, there is no ‘doctor’s appointment’ or ‘poorly baby’ or ‘other plans I forgot about.’ I just can’t face going outside and having to function.”

10. “I wish I was strong enough to admit the real brutality of it so I didn’t have to deal with it alone.”

11. “If I randomly text you, I need you. Even if it’s been months. I seclude myself, but once I initiate something please, please be there for me.”

12. “I don’t want to admit how comfortable I have gotten into it. It is tough trying to crawl out of it as I sit alone, wishing I hadn’t pushed everyone away long ago. It’s easier said than done to reach out and contact you again, as I secretly hope you’d say hi. I don’t want to bother you, I think you’re busy, so I carry on alone, waiting for the next moment of distraction.”

13. “I’m hurting. I feel trapped inside myself and have felt this way for over 10 years. Your words of encouragement, positivity, and advice are all well-intentioned; but just because I shoot down your advice and positivity, doesn’t mean I’m resisting your help. It just means I’ve either tried it already, heard it already, or it just won’t work from prior knowledge.”

14. “I actually do wish I could take you up on your, ‘I’m always here for you if you want to talk’ offers! But I don’t. Because I value your friendship, and I don’t want my depression to enter into it and ruin things. Been there; done that.”

15. “They have saved my life more than they know, and I don’t feel worthy of their love. Or that I can ever repay them. I feel forever in their debt. I’m afraid to share how bad depression and suicidal thoughts are, so I hide it.”

16. “I will always have those dark and twisted thoughts that put me in the hospital and residential treatment. I’m just too afraid to talk about them because I can’t handle losing another friend because of my depression.”

17. “I love and miss them, but sometimes just can’t do things. I can’t put on a happy face and pretend everything is OK when the demons in my head are telling me I’m worthless and nobody cares about me.”

18. “I lie a lot. I’ll never tell them how I actually feel because there are times that when I do show my true feelings it overwhelms them and I’m the one that needs to reassure them . I’ve been dealing with this myself for years so I just want them to live their lives and know I’m OK even if I’m not.”

19. “Almost every time when they have asked me, ‘Are you OK?’ and I’ve answered, ‘Just tired,’ I haven’t been just tired, I’m mentally and emotionally exhausted.”

20. “I sometimes have suicidal thoughts. I don’t share that information because I’m not actually suicidal (I never have been, death actually scares me) and I fear people will judge me for it.”

21. “Every time they make a joke about depression or even question if I’m being honest or ‘faking it,’ I can’t help but distance myself further. I don’t want my depression to be my defining ‘trait,’ but I need people I care about to acknowledge and respect such a big part of my life.”

I think you can substitute “chronic illness” in general for depression, don’t you? And doesn’t our chronic illness often cause our depression? How many of these did you see in yourself?

STORIES FROM OTHERS: What’s it like to live with a spoonie parent?

18 Tuesday Apr 2017

Posted by Cassandra Carr in Stories from others

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STORIES FROM OTHERS: What’s it like to live with a spoonie parent?

NOTE: This interview was taken from Spoon Serendipity. I thought the sentiments were really nice and made me feel a little less guilty about how I parent my own daughter.

If you asked me what the hardest thing to deal with when my mama is in a flare up or having a hard time it would be that I feel helpless. It’s something she has to live with and I can’t do anything about it. I wish I could help more than I do but I try my best to be there for her and make things easier.
It’s not like every day is a hard day or a bad day. We have had amazing memories made and been able to go do some really cool stuff together. I think I enjoy little moments more and know how to treasure time when those little moments happen. It’s all about perspective. Seeing things differently is something I try to do but it’s not always easy.
Would I change anything about the way it is? No, I would not. Everything happens for some kind of reason. I think this has brought us closer together and formed a strong bond between us. It’s taught me a lot and made me more aware of the fact that so many people suffer from chronic illnesses and you sometimes don’t even know. You really just never know what someone is struggling with so always be kind. You could probably go to any city and walk past some people on a sidewalk and you wouldn’t even know they are sick. Not every disability looks the same and are not always obvious at first glance.
Do I ever feel sad, angry or resentful when my mama can’t do things that other moms can do? No, not really. I understand how hard it is for her and I just want her to be comfortable. I’m not into all of the same things other kids my age are so I don’t feel like I’m ever missing that much anyways and besides, I really enjoy just hanging out with my mama- watching movies, reading, or even doing different things in the same room.
I try to make things easier for her by: just being there for her, helping with daily chores (even ones I wasn’t asked to do, sometimes!) and just letting her know that she isn’t alone in this and I love her.
To other kids with parents who are Spoonies, just remember that your parent loves you. It probably hurts their feelings more than it hurts yours when there is something that they cannot do for you or with you. Try to remember to be thankful that you have them in your life and that you are a family that has to fight together not against each other.
That kid is pretty amazing, huh? I did a similar interview with my daughter several months ago. Here’s the link.
How do your children feel about your illness? Tell me in the comments!
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STORIES FROM OTHERS: How to set goals when you have a chronic illness

27 Friday Jan 2017

Posted by Cassandra Carr in Stories from others

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STORIES FROM OTHERS: How to set goals when you have a chronic illness

goals

I don’t set goals, but I know a lot of people do. When you have a chronic illness, goals can be your enemy — if you don’t learn how to set goals that will work with your illness. I read this blog post and thought it had a lot of great points. I’ve summarized them below.

  1. Understand why you’re setting the goal. That will help you have the passion to reach it. Making the goal specific and related to your dreams, hopes, and wants is important, because otherwise you won’t fight for it as hard.
  2. Don’t set goals to please others. Chronic illness warriors have enough guilt problems. Making goals for someone else is a recipe for heartache and depression. Life is too short (and too hard) to live for anyone but yourself.
  3. Break the goals into pieces. People like us never know how we’re going to feel from day to day. If your goal is a large one, it will be harder to realize. However, if you have benchmarks to hit along the way, even if you don’t make that ultimate goals, you’ve at least made it partway, which should give you a sense of accomplishment.
  4. Be ready to let a goal go if necessary. Like I said above, our health is unpredictable. Making a goal that you depend on too much for your happiness could be detrimental. Bitterness and anxiety can set in, and that’s the last thing you want. You need to be prepared to modify your goal if you can’t realize it, while avoiding guilt.

I hope these tips will help those of you who do set goals. Do you have any other ideas? Tell me in the comments!

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