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Dealing with Deteriorating Health & ‘New Normal’s | Chronic illness
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- Опубліковано 31 бер 2020
- Dealing with Deteriorating Health & ‘New Normal’s | Chronic illness
FAQ
I have Ehlers Danlos Syndrome / Hypermobility Spectrum Disorder, autonomic dysfunction- including Postural Orthostatic Tachycardia Syndrome and myalgic encephalomyelitis.
I'm a full time university student
I'm also a wheelchair and catheter user
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I’m going through a flare up and now my teachers are assigning even more online work because “we have nothing else to do”. I feel like I can barely take care of myself let alone do schoolwork. I hope this bad period for you subsides soon 💕 take care
Fiona M that’s exactly what my teachers are doing and I’m struggling with it so much!! 😕 I’m so sorry you’re going through that too 😢 Thank you, you too, sending spoons and gentle hugs 💕
I go through flare ups too... Life is hard sometimes. Especially being by your self.
Same
Same
Haha that slip doctors don’t know anything made me laugh because sometimes it does feel that way. I’m sorry you are having deteriorations in your health right now honey I hope things ease for you soon. This was such a useful video thank you for sharing your tips honey xx
Beverley Butterfly I had no idea I accidentally said it until I started editing it, but didn’t have the energy to re-film it 🙈 Thank you! And I’m happy to hear that 😊 xx
Love this video - definitely the confirmation that I needed that I'm right to chase up the GP tomorrow. My pain is massively flaring at the minute and I feel like I'm wasting their time but at the same time I think they should be doing more for me. And I think this is just a good reminder that I'm ok to push towards better quality of life
With acceptance I think the saying "fake it till you make it" kind of applies - I think if I act and talk like I've accepted my situation then I accept it more easily
Sophie Hobley your comment made me so happy Sophie, I know the feeling of not wanting to waste their time, but you shouldn’t have to be living in so much pain if there’s a chance that something can help it! And speaking to a new doctor or trying a new med is worth a shot! I really hope it goes well for you tomorrow! I personally found the phone consultations a blessing in all of this, as I’m still able to have appointments (& even have meds prescribed & referrals made, etc) on days that I need to stay in bed!
That’s a really good way to look at it, I’ll have to try that, thanks! :)
@@GeorginasJourney if you care, we have adjusted my meds a bit and honestly - I think things are a little better, we aren't at perfect yet, definitely not...but I'll take better!
I agree, phone consultations being more widely available has been a blessing in many scenarios :) they haven't worked for everything but 90% of the time they've been great!
Sophie Hobley that’s such good news Sophie!! I’m sorry there’s no quick fix or way to make it completely better, but that sounds like a step in the right direction at least 😊 I’m really happy to hear that 😊
I’ve found the same thing! x
Thank you for your wisdom and encouragement. I am in the middle of a three month protocol for Lyme which causes a number of other symptoms to flare. Hearing your calm, soothing voice reminds me I'm not alone in my fight! Remember your current location is not your final destination - hang in there! Love from the US!
Dermatillomaniac gosh that sounds tough, hope you’re doing okay! And the middle is better than the start, I hope the rest of the protocol goes as smoothly as possible! Thanks for your encouragement too, we’re in this together :)
So sorry you’ve had such a tough time Georgie. I hope it settles down very soon xxxxxxxxxxxx
Penelope Polins née Meyer Thank you Penny! Hope you’re as okay as you can be at the moment xxx
Georgina's Journey Martin and I are pretty good apart from hay (tree) fever xxxxxxxx
Sidney Heyuri thank G-d we’ve been shielding up to this weekend. The reunion with my son and grandchildren earlier was wonderful. Even the dogs sobbed with joy!
Stay strong
Notcharlie Mills thank you so much!
Hang in there girl.
One day at a time
You got this 💪💪
Kurtis thank you so much Kurtis! I really appreciate the encouragement! 😊
Sidney Heyuri thank you so much!
Thank you for sharing. I'm going through a similar process with deterioration. Adjusting to life using mobility equipment, is definitely safer and less stressful in that regard, but it's also a lot to mentally adapt to.
Also I wanted to let you know that its often difficult to hear your videos compared to other people's on UA-cam. It might be worth it to get an inexpensive clip on mic. I really enjoy you videos, just wish I could hear you better.
Just Soleil of course, as I said, it took me years to come to terms with it all myself, and some people never fully mentally adapt to such changes.
Thanks for telling me, I was meant to be getting a phone with better audio last month, but have stopped buying all non-essential items until the pandemic slows down as I don’t want to add to the demands of warehouse & postal service workers, or put me and my housemates at any unnecessary risks.
Sending good wishes. I hope you can find good coping methods. I am happy to see you are so determined!!! Ps I just read Carry on and Wayward Son. Thank you for the suggestion, I really need my head in a book at the moment and something uplifting!!
Cheep Ink thank you so much! Oh I’m glad you liked them, I felt the same way!
It's great to see tips on how to deal with deteriorating help. There are 3 things I'd like to add: reddit has great support forums, journaling can be very helpful and anything creative or crafty has been proven to be helpful. I watched this video while knitting in bed because my body has a new idea how to torture me.
Thanks 😊 I generally avoid Reddit as it also has threads which have seriously hurt some of my friends in the chronic illness community :/ I hope you’re doing slightly better today 💜
@@GeorginasJourney thank you. I'm nervous because I'll soon find out if I have MS or not. But even a bad diagnosis is better than not knowing what's wrong
I hope you get the answers you’re hoping for, whatever that is 🤞🏽keep me updated if you feel comfortable to
@@GeorginasJourney thank you very much. MS is luckily out. The doctor in the hospital first believed I make it all up because I have CPTSD. Then he went over all my medication which lead to him finding out that he himself diagnosed me with migraine with aura years ago. That lead to him actually listening to me which then learned to him thinking that mine and my neurologists first guess was right and I have Aura in my brain stemm and that it just didn't react to the medication switch that got my pain better. Which is good because that's not dangerous but annoying because well my medication is chronically ignoring medication so it will be hard to get rid of the symptoms. I'm still in the hospital for further testing. Ironically I got great support in the subreddit that was so harmful for your friends when the doctor was so mean and unprofessional yesterday. But I experienced that some other subreddits are quite toxic.
I don't know if you have one and I just haven't seen it but I'd be very grateful (only if you feel comfortable) if you could explain your journey to catheters. My bladder stopped informing me when I need to pee several weeks ago and I need my stomach muscles to empty it. Which lead to a UTI (with no symptoms in my bladder until the point where I already had alarming test results) besides doing all the urologist told me to avoid that within two weeks of that as well as a lot of water retention in my body. I'd like to know what steps to take if things don't look up and the urologist doesn't help me. It's often hard to get proper medical help as a chronically ill woman
Hope they can find something that helps you and that the tests give you some answers, even just ruling things out is a step in the right direction 😊
If you suspect you have urinary retention, then you’ll need urodynamics testing, so this is the test to enquire about when you see your urologist 😊
Today I had a bad tachycardia day heart rate jumped from 64 to 169 and took hours to drop past 100. Have not been diagnosed with pots yet. I have been hospitalized twice now for tachycardia and passed out a few times.
Jeremy Field hope you feel better soon and that they can find the cause of the problems you’ve been experiencing!
This video really resonates with me. I have been getting worse for about a year now but didn't want to admit it until recently, for example now I need to use my wheelchair whenever I go outside and am usually housebound. Unfortunately my GP still doesn't listen to me, but I recently got a helpful referral (which has now been postponed until after the crisis though). My (as yet undiagnosed) chronic illness can be completely debilitating with any trigger like stress, and I become so 'useless' and i just want answers or even just some help.
For me, the mental part is almost harder than the physical part because to get help at school I need to accept that I am getting worse, but its so difficult to accept it.
Louisa I hope your referral is helpful! I use my wheelchair when outside of the house too & find it a huge blessing- I’m sorry that you need one, but I’m glad you have it and are able to go out in it! I made the mistake of not getting one until I was diagnosed & so spent two years bedbound- but if you need it, you need it, even if you don’t know why yet! That’s good that your school are ready to help as soon as you’re ready to accept the help! :) My school were awful & didn’t help even when I asked for it because I was undiagnosed at that point
Thanks for helpful tips comforting. Im still dealing with severe headaches and coldness. I want to move away from my home as I've felt so sick and im living in a noisy environment. Its hard to be hopeful ive it 19 years now. Im hoping new ways of healthcare may help me get this diagnosed. Maybe it is a mental illness. Anti ds made it worse. Doctor suggested less sleep around 5 hours. I started to feel ashamed of going to bed and think it might be a thinking problem.i feel very ill. My quality of life is nil at this stage. I drank wine and was ill of it. I wish things could get better but I can't be certain if they do. People tell me to hang on but can't give anymore. Im sure moving house is an option. Appreciate not having to travel. I cut out lots of unnecessary travel. I was 6 stonr 7 from the excessive walking with nausea. I need to keep searching but I appreciate the fairy light idea.
have you looked into something like myalgic encephalomyelitis? And I don't know how much you were sleeping before, but most people need 8 or more hours of sleep a night, especially those with chronic illnesses
I have already commented on your 2018 video, so I will not repeat that here. I think that your advice to do your best to adapt to any new symptoms, instead of waiting to accept them, is very wise. Some people never learn to accept the new restrictions which their illness places upon their life, and become bitter and withdrawn as a result (not you). This is not however a valid reason to look down upon them as a lesser person, when compared to ourselves. As you said quite rightly in your other video, we really have no idea what their life is like, behind closed doors. Everyone is unique, and does his or her best with the cards which life has dealt them. Chronic Fatigue Syndrome (which I have) is NOT the same thing as ME.
Thank you. In the U.K., under the NHS, ME & CFS are the same condition, it is just recognised as an illness which can vary greatly from person to person.
@@GeorginasJourney Yes it is the same situation in Australia, with the naming of the two conditions, as if they are the same. But I joined a UK based CFS/ME social media group, and could not relate in any way relate to the symptoms which many ME patients describe. Then I found the following article, which helped me to understand why this could be. Please excuse the link. documentingme.net/2014/01/31/me-vs-cfs-theyre-not-the-same/ It was very nice to meet you.
@@brianreeves1001 chronic fatigue syndrome doesn’t seem to fit my symptoms as well as ME does, but I can still see why they’re classified together, as there’s no definitive way of knowing which one a person has- most cases aren’t as clear cut as how I imagine yours is
what are the anti-sickness tablets that go in gums you mentioned at the 4:10 mark called?
It’s called prochlorperazine (prescription) or buccastem (over the counter) in the U.K., and compazine in the US!
Nice to know I am not alone
I have had a very difficult time getting Drs to listen to me about how limited my life has become from my chronic migraines, hypermobile dysfunction, vomiting, chronic fatigue, chronic back & joint pain illness (possibly EDS). I actually had to ask my Dr if I had to attempt suicide before he would pay attention.
I’ve been mostly bed ridden for the last 12 years & the Drs just don’t understand how hard it is & they have not been doing anything to help me other than refer me to specialists who are not paying attention to the fact that I have a long list of conditions that are all associated with EDS.
Really sorry to hear you’re struggling so much 💗 I’m in a similar boat, doctors and even ‘specialists’ don’t seem to understand how much my illnesses affect me & neither do the specialists I’ve seen :/
💚💚💚
thanks!
Ya I’ve been having really bad pain and my neurologist is a multi speacilty and really dosent know what she’s doing so she’s not any help and it sucks because I have no way to manage my pain since Tylenol doesn’t work
Could you talk to your GP/family doctor about trying a different pain medication or getting a referral to pain management? I don’t know what type of pain you have, so this may not be appropriate, but could a heat pad or TENS machine be worth trying?
Whst a lovely person I am.fighting a life limiting illness not accepting it
VERONICA CHRISTOPHER-FELLOWS absolutely Veronica, I share a similar attitude towards it & think there’s a lot of power in that too! I wish I could accept it, but I just can’t either haha, anyway I hope you’re doing okay atm x
@@GeorginasJourney xxxx
How did you know you had svt? What’s the difference between pots and svt?
Ellie Browne I knew something was wrong as I’ve been hospitalised with resting lying down heart rates of 200ish for over 2 years & the doctors in A&E told me. POTS is tachycardia related to postural changes, SVT isn’t.
I know POTS and EDS, but what is SVT and cyclic vomiting?
GraceFan94 they’re not usual co-morbidities of EDS, so it’s unlikely other people will have them just because I do. Cyclical vomiting syndrome is where you get episodes of intense vomiting for no reason, separated by periods without nausea & vomiting. SVT is when your resting heartrate randomly goes up to like 200 at rest (e.g. while lying down) and isn’t associated with postural changes such as sitting up or standing up
What do you do when you have so much work to.do....you just can't catch up....ehuadtion and frustration sets in...🙃😞😞
Amy Snyder I take my university work into hospital with me and do it there. I always get it done
I’m sure that this has been thought about already by you and your doctors but has anyone raised to you that midodrine can cause urinary retention as a side effect? I know I find it a little bit harder to wee even after a 5mg dose and I don’t experience the troublesome bladder problems that you have to endure. It’s been on my mind for a while and just thought I’d check this with you. x
Jaded hi, no I had urinary retention for a couple of years before I went on midodrine & I’m actually only on 2.5mg a day now in the morning now. Urologists will cover every basis & wont leave a stone unturned before taking such invasive measures, so I’ve also had urodynamics done off medication to see if my function was any better & it wasn’t. So you don’t have to worry about that in the vast majority of cases, doctors know what they’re doing when it comes to invasive medical equipment in the UK & there’s a lot of criteria you’ll generally have to meet to prevent such problems arising
Jaded you might also find it helpful to look into the link between EDS and urinary retention- a lot of people with EDS use catheters, with many needing suprapubic catheters (which are surgical) after losing function completely. @activelyautoimmune & @diary.of.a.spoonie on Instagram have both lost bladder function completely due to EDS & are great at raising awareness of it, so you’re welcome to read their posts or to message them to learn more x
Georgina's Journey - thanks for replying with such interesting information. This is really helpful. Sorry that you’re currently going through such hard times but as you’ve said we must keep hopeful as things sometimes unexpectedly get better in the future or better because we find ways of coping x
I have a few questions could you message me on ig ? I’ve been bedridden & I think my flare started from my youngest baby . I faint more than half of the day . But my anxiety is through the roof . I’m deconditioned & bedridden.. & been back & forward in the hospital
InTheLifeOfCee ‘ of course, my Instagram is @georginas_journey , I have 15 minutes free now if you’d like to talk!
Do you have a feeding tube?
Sophie Amarant no, I don’t! I haven’t struggled with eating for about 2 years now!
I can't deal! 😪
I don't have a choice
just a thought,did they ever check if your cortisol is too low?
Kazynski I don’t know, they did blood tests, but didn’t say what for
I was just wondering if you have addisons as well or secondary adrenal insufficiency.IDK if this makes sense but I thought I mentioned it,you never know.I wish you get better soon and I wanted to thank you for all your videos,they give me hope.PS;you must have great friends.My friends are vanishing bec I am bedbound.All the best for you Georgina
Kazynski I haven’t been tested for either of those! I was bedbound for 2-3 years and made a lot of friends online during that time, I also lost friends during that time, but that’s not what I chose to focus on. There is still hope and still things you can do. The online world became my home and my playground, you should try branching out in it more if you feel lonely, there’s often a lot of people in the same boat
its 4 and a half years for me.
IDK where to turn to.Is there a forum you can recommend?Perhaps I should join FB again.its not so easy if yiu are in your thirties.If you arent there when your friends get married,have kids,baptizing their kids etc you soon disapear in their mind.But you are right of course,we can choose to focus on other things.
Kazynski it’s not easy at any age. My friends all travelled hours away to university & made new friends, but I put the effort in to keep messaging them and video calling them and so I’m still very good friends with a few of them. It depends what condition you have, you can search for forums for that specific condition. I joined a POTS group on Facebook, but the main place I made friends was Instagram, there’s a big chronic illness community on there
Hello beautiful snow bunny 🌷😘don't forget to pray to the best doctor in the universe🙏🙏🙏 the only true Living God💪 Jehovah God... 2020.. What..😷✌