Is it Anything to Worry About? | Let’s Chat
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- Опубліковано 14 тра 2023
- Is it Anything to Worry About? | Let’s Chat
A chat about life with chronic illnesses and disabilities, ambulances, hospital, other people’s perceptions, analogies, all sorts
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Carefree by Kevin MacLeod incompetech.com
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Your experience with loved ones led you to comfort others going through similar experiences. This scripture speaks of the God of all comfort. 2 Corinthians 1 :3-4. “Blessed be the God & Father of our Lord Jesus Christ, the Father of all comfort, who comforts us in our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.” I am so sorry for this affliction. 🙏❤️
Wow, that’s so powerful, thank you!
It is ALWAYS something to worry about if you are in the hospital. No one goes to the hospital or wants to go there for fun.
Agreed!!
Thank you for continuing to bring these topics to conversation and especially on the heels of having a notably bad health time yourself.
Ofc, thanks so much for watching & for your support 😊
The one thing that gets me as a heart patient who has been one my whole life. The people that incidentally, non purposely, or on purpose invalidate a situation that they do not directly relate to … can sometimes be the same people that get annoyed when I invalidate the severity of my pain or issues in the doctors office. Like, that is who I picked up the masking coping mechanism from. 🤦🏼♀️
It has become a knee jerk response to lesson the struggle at times. I am aware. It still happens sometimes. That is why the nurses or doctors that are especially good at picking up on patients behavior and ask the question a 2nd or 3rd time to ensure that I am safe, or that I receive the correct treatment, cause they see it on my face or expressions … are so important. ❤️
Glad you’ve had some doctors and nurses who do that ❤️
It’s like they decided that this is just your life with chronic illness. So it’s almost taken ad it is your normal lifestyle up to a point and that is wrong to assume. If your event happened to them it would be a concern to worry about…. Period.
i'm so sorry that you had the emergent incident and I'm very sorry that those people in your life weren't supportive.
I like the "when no one else is there, everything will be okay if you remember to tuck yourself in" (paraphrasing) idea. The way I get through people not understanding recurring large difficulties is that I make up a few people in my head (they're officially fictional, but they're real to me), and I just converse with them and share my hardships with them; it's an unorthodox method, but it works for me and saves me from the heartache of having to explain myself.
Thank you, and I’m glad you’ve found something that works for you ☺️
@@GeorginasJourney Thank you!
Oh my goodness sweet Darling! This breaks my heart that I could not be there to take care of you even if I would not be able to drive you or even take care of you at your home, I would be with you in hospital. I know you don’t really know me but you are like my darling granddaughter that I’ve never met. I have followed you through your journey and I feel your pain in my heart! You don’t have to be old to suffer, as everyone should know. My illness started 53 years ago and steadily got worse so I know what you are going through with the suffering even though we don’t have identical medical problems, we have only to look forward to getting worse since there isn’t a cure for man to offer us. You deserve to be cared about and cared for! Even though you appear to be such a strong lady, we all appear that way when we only let ourselves be seen when we are at our best, not our worse. I will continue to pray for you that Jesus will hold you when you need to be held and keep you company when you are afraid and alone and show you the compassion that all humans should show, and comfort and heal you like I wish I could do. You are a miracle, Sweetheart! It takes a miracle to keep living when you feel you would rather be at peace and out of your suffering. You are helping many just by putting up your videos and being such a beautiful person in spite of what you are going through. I am old but have been sick for most of my life and if not for my love of my family and not wanting to cause them pain, I would have let go of this life a long time ago. But I am glad I didnt so I could be here to pray for you and love you in my heart. I know it doesnt help you, but know that if it was possible I would be there to sit with you and make you smile like you do for me. I love you and I am always praying. God loves you more, even if it doesnt feel like it sometimes. He sees and hears and knows and will not abandon you.
Hello Susan, Thanks to life for providing you, as a grand-mother-by-follower, for Georgina who smiles through the pain, from a chosen-virtual-brother and hug provider. ♥ Spoons and hugs to you.
This interaction between you both is one of my favourites on my channel, you both continuously lift my spirits and I care deeply about both of you and am forever grateful to have both of you in my life ☺️
Thank you so much for your kindness! I just feel a connection with you because
I understand your suffering and you are such a strong, sweet, beautiful girl I wish I could hug you and tell you everything is going to be okay. I would rather see you healed and happy than anything else in the world. You have so much to give! I am also thankful for the dear loving friends and virtual family you have gained here on your channel.
@@TheFrasweetyou are a gift from God for our sweet Georgina and I hope one day you are close enough to give her the hugs that I cannot! Good bless you!
I can totally relate although sounds like you’ve had a much more frightening experience than mine. I definitely feel the importance of self reliance and a lack of trust in loved ones behaviours. I don’t use the tuck in phrase (which is well cute) but I have an image in my mind of an imaginary part of the universe where I feel loved regardless of actions. I can’t describe it but it comforts me.
I’m so sorry they let you down at such a scary and vulnerable time. I know how scary it is just to be told to make your own way to hospital and taxis being a nightmare. I’m glad you made it though and your mates saved the ordeal for you.
I think people get used to seeing us in pain and struggling to function, and in some ways we get used to some areas while other bits just never lose their shitness!! I am SO grateful you made this video because I definitely relate and it kind of reminds me that there is a community of people out there that understands similar issues.
I can’t travel due to my illnesses but I would be able to be with you on a virtual (I nearly said viral!) basis if you’d like? Happy to give you my details and have me as someone you can contact when you’re unable to reach family/friends. I’ve also got a very bad sleep pattern so handily available at unsocial hours. But I offer you virtual spoonie support in any time of need. I’ve come off of socials due to mental health preservation but happily give you my deets.
It definitely is bonding when you know other people have had to go through the same crap but different flavour. 😂❤
Your family...grrr. I'm glad you have some friends who "get" you. Being chronically ill is a lonely business. You know you can always reach out and talk to me.
Grateful to have you as one of my friends ☺️💗
Thank you for being so open about this subject. I feel the same when people are asking about my chronic illness. I really dont get used to all of my appointments with doctors and symtoms, but I have strategies on how to manage them. I dont believe people really understand how demanding it can be living with a neurological illness that I have. When people ask me how serious it is I usually tell them that of course it is serious when I have appointments with doctors almost every month, more often if I have flair ups. I also tell them about my symtoms that includes nausea, severe headaches tht is difficult to treat, depression, panic attacks, dizziness, tinnitus, letters looking funny sometimes, fatigue and also how horrible the treatment is and that the disease is idiopathic (cause unknown to science). And I also tell them that complete vision loss is likely to occur if I dont treat it. It's like people without meaning it are invalidating my situation. They usually get quit when I just throw it at them.
Also, some people just have to give me advice on how I should treat my symtoms and illness. That I dont like. I know what works for me and so does my doctors. Why do people think they know how to treat something that affects roughly 2 per 100 000 and is idiopathic?
Well done for telling them about all of that & sticking up for yourself!
And I think the reason people try to give us advice is that they either think the symptoms are similar to other things that they know of, or they don’t realise how bad things really are for us
Ty so much for sharing. This is one of my worst fear living alone thay no one essentially.would be there to help me. I am so glad it all.eneded.well.for you
I have this fear too, all the time. & this experience, those 2 hours alone made this fear even more real. I don’t know how to talk about this topic without it being triggering but I absolutely know how you feel & I’m sorry you have those fears too. I was very close to dragging myself outside & asking passers by to help. In some cases, like if you’re choking or something, that’s probably actually a very good idea to do that. There are also other safety measures I have in place which a lot of other people don’t, but whatever helps, right?
@@GeorginasJourney yes and whatever is available.Omg so horrible 😔
Thank you for bringing up this topic as these things really are hard to navigate around. I still don’t know how to answer these kinds of questions myself. I need to send this video to all my loved ones so they can understand better 🙃
…so do I, lol 🙃
The video is good. I am sorry that you go through so much!
Thanks Lily
I also just want to add how brave and strong you are for everything you deal with-and for how you go around it so gracefully. It’s such a shame how it starts to become ‘normal’ for those around us. The truth of the matter is, they don’t understand. That’s why I’m so grateful for videos like this so, we don’t ever have to feel alone 🩷
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🙋🏻Hi Georgina from Italy🇮🇹... Sorry u've not been well💐
Thanks Susan 😊
I typed out a big long comment about all my feelings about this and it all just got deleted I do not have the spoons to re-type it but I'm leaving a comment anyway for the algorithm ❤
If that’s not best friend behaviour, idk what is 🙌🏽❤️
Yes can relate unfortunately because my family already had chronically ill family members aunt/uncle before i became ill I think they were already used to this and over it although they love us I am to the point now that I just ask them to drop me off if i have to go to emergency because i can tell they are annoyed sitting in hospital for hours so I just sit there by myself yes its sad but would rather do that than have someone next to me annoyed or even me feeling that I am wasting there time especially when in the end Drs let us know well she has issues but its not a heart attack or stroke so theres not much we can do
🫶🏽🫶🏽🫶🏽
Yes that text was poorly worded and I understand why you felt that way. Thank you for posting Georgina and best wishes to you from Minnesota!
Thank you! You too! ☺️
Yeah, I've had a similar experience, actually it's all the time now. When I had a kidney stone everyone took it really seriously, that really surprised me, otherwise I was kind of ignored.
Hope you feel better now 🙂
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@@GeorginasJourney I literally see a tofu and a brown rectangle on my Android phone. :D
BTW The air warning here in Kyiv just ended, half an hour ago it was crazy here with interceptors launching and missiles exploding.
On iPhones it’s tanned hands making a heart shape. Glad the air warning is over now & you’re not hurt.
@@GeorginasJourney ❤️ Thanks!
I wonder if an approach would have been to take a jokey stance "is it worrying for you healthy folk? Yeah! Terrifying! Traumatising! For me? Pretty normal - yet somehow still terrifying and traumatising, but I'm getting better now"
That would have been a great response!!!
I'm praying for you, sweet friend. GOD IS OUR REFUGE. READ PSALM 92
Thank you! And I will read that, thank you so much 😊
First of all: I hope that your recovery from this episode is going as well as you could have hoped for!
Secondly: I find that it is always good, when possible, to remember that however rare our condition is or however weird a symptome is that; even if those closest to us just don't get it; that it's not our fault or theirs but to try and remember that somewhere out there, there is someone that does get it, that does understand... personally, what works for me is to imagine myself sinking into my matress and being held in the arms of the universe, held and supported by anyone and evrerything at the same time.
I also wanted to add that when I read the title of this video that I imagined that the subject would be another issue that I also struggle with, which is knowing in myself if a new symptome is something to worry about or not... recently parts of my lower legs have felt as if the skin was being ripped apart even though there are no signs of anything going on from the outside when I look... what's that about? should I be worried?...and also for a while now when I sneeze I feel instantly frozen cold to my very core... again, what's that about? and should I be worried? (just a couple of probably completely benign examples)
I'm anxious that I'm getting so used to my body doing random weird things that I would no longer necessairily know when something was bad enough or worrying enough for me to seek urgent medical help... I guess what I'm trying to say in a very rambly way is that it feels to me that so much of my body doesn't work as it should/ as most other peoples bodies do that I no longer know if what I'm experiencing is something to worry about or not, is this symptome just another "yes, it's weird but hey that's me for you" or is it anything that I should be really worrying about and getting medical help for...
Love, light and spoons to all!
My heart rate sitting is 100-115 just sitting standing is over 120 this is after I take beta blockers and all the cardiologist think I don’t have pots cause I don’t have other symptoms like other pots patient other than the heart rate and my cardiologist thinks usually women get pots not men
Can you increase the beta blockers? They can be used for pots anyway so as long as your blood pressure isn’t very low, that’s good that you’re on them already 😊
@@GeorginasJourney I did but it didn’t help also been tried all the other beta blockers and ivabradine but still haven’t found anything to help cardioglist told me exercise maybe because I’m not fit which I doubt is the reason because I’m around 87 KG i can’t exercise because my heart rate goes around 190 but I still go shopping and other stuff it’s very frustrating I look at my Apple Watch it’s like 130 just walking
They both lower heart rate so you could ask about increasing those medications, or you could ask to try fludrocortisone. that may help, but the effect on heartrate is less direct than ivabradine and beta blockers. The aim is improvement with medication, it’s not always possible to completely get rid of the problem. If your blood pressure is low, you could ask about midodrine too
@@GeorginasJourney i already tried fludrocortisone guafancine my blood pressure is high when I stand up but lowers if I lie down those didn’t and also raised my blood pressure I will give another medication called clonidine a try and see if it helps