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Old 13-09-2012, 03:40 PM   #1
Rodolphus
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The 'Chronic Illness' Support Thread.

A 'chronic illness' is a term used to describe a long-term physical illness, with symptoms lasting over three months. Being 'chronically ill' can be a huge strain on a person's mental health, often exacerbating mental health issues with the additional problems they face. I know there's a number of members on RYL living with a chronic illness, and I thought a general thread (There is a specific CFS thread) could be useful to gain and give support surrounding being physically ill.

Common CIs include: M.E/Chronic Fatigue Syndrome, Arthritis, IBS, IBD, Crohn's Disease, Fibromyalgia, Asthma and other pain & auto-immune disorders.

Here is a safe place for you all.

Much love.
<3




Now I'll play your ghost as my ace, whenever I'm led astray.
But I am actually good, can't help it if we're tilted.
I'm in my right place, don't be a downer.


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Old 13-09-2012, 04:41 PM   #2
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*dives into the thread and makes it my long lasting home* Thankyou for making this thread!

Hi, I'm Kona and I have HMS or Hypermobility Syndrome.

come join me =]




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Old 13-09-2012, 09:23 PM   #3
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*Crawls in*

I'm Marie and I have IBS, which decided to flare up today.

Hello Kona, I have a friend with HMS, theirs is called Elhos Danlos syndrome. How are you today?

*sits with*

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Old 13-09-2012, 09:29 PM   #4
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Hello. :)

My name's Katie, and I have IBS. It's not so bad at the moment, though mornings have been a bit icky the past week or so. Though it has been much worse. If I stick to the foods I know work for me it helps.
I also have life long sinus/catarrh issues.

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Old 13-09-2012, 11:55 PM   #5
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Hey, I'm Laurah *waves*
I have an unknown condition, where I have pressure in my head that builds up, to the point its difficult for me to do anything and spent time sleeping and writhing in agony. I have at least three nosebleeds a day, I'm constantly tired, Fun. ): MRI scans and tests have been inconclusive, so I've been tried on multiple prescription drugs but they don't have much effect, either. -.- quite frankly, no neurologist or doctor can diagnose me, which is frustrating -.-



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Old 14-09-2012, 08:29 AM   #6
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*waves* I also have HMS which didn't used to affect me so much but now more so especially with the colder weather and carrying a 9 month baby around lot. The doctor also suspected rheumatoid arthritis but it was never fully investigated. So basically lots of joint pain and damaged ligaments! To be honest I don't normally talk to people about it though as my head stuff tends to dominate my life. Oh the HMS also stops local anaesthetic from working which has caused some interesting situations when I had my c section and during stitches and dental work! Fun fun fun.




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Old 14-09-2012, 02:38 PM   #7
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How's everyone doing?

My name is Marie, I'm 20 & have been diagnosed with Rheumatoid Arthritis, CFS, Fibromyalgia and currently suspected TMJ. I also have IBS, though I am much more control of it now I've found my dietary triggers. I do find my physical health effects my mental health; when I'm having a good day, if I'm feeling crap physically then it can bring me down.

Laurah, I understand how frustrating it is to be undiagnosable, I hope you get answers and treatment that works soon <3

Ouch, Sam, C-section with no working anestetic sounds horrific, I hope the cold weather doesn't bite you too hard this year, especially with a baby who'll be starting to want to move all the time?

Hey Katie :) I'm glad your IBS is being less troublesome than it has in the past! :)

Ohai, Marie, are you feeling any better today? I hope you are :)

Hallo, Kona! How are you doing?




Now I'll play your ghost as my ace, whenever I'm led astray.
But I am actually good, can't help it if we're tilted.
I'm in my right place, don't be a downer.


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Old 14-09-2012, 05:51 PM   #8
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*sets up camp near local toilets*

Hi I'm Katy, I'm 24 and I have an IBD called microscopic colitis. I cope by making toilet jokes.

Recently I have been diagnosed with that raynaulds phenomenon (sp?) But they think I've grown up with that!
I also have tendonitis in most joints, but it us mild atm.



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Old 14-09-2012, 11:11 PM   #9
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I finally have a tentative diognosis on my joint problems. At the moment they are thinking it is hyper mobility, but I am being reffered to another specialist, so, maybe that will change.

Eithre way, I decided to volounteer to help freshers out at uni this week. After one day my body is screaming at me. This is what I get for trying to be helpful! XD



And yet, by heaven, I think my love as rare,
As any she belied with false compare.


There she was. Gone.

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Old 15-09-2012, 07:39 AM   #10
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The anaesthetic did eventually work but the guy doing it was very worried it was taking so long and used lots and replaced it twice.




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Old 15-09-2012, 06:55 PM   #11
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Hey Katy :) I'm also a one to use humour to make everything better. How are you at the moment?

It's silly how many complications are caused by having an illness that most people wouldn't think of, eh, Mrs Sam? I'm glad they got something sorted out in the end for you.

I'm really struggling with pain levels today, it's making me want to just curl up in a ball and cry but I've got too much work to do. Owh, RA/FMS, you are a heartless troll.




Now I'll play your ghost as my ace, whenever I'm led astray.
But I am actually good, can't help it if we're tilted.
I'm in my right place, don't be a downer.


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Old 15-09-2012, 09:40 PM   #12
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Gentle hugs for everyone.

I have M.E and a few other medical problems, I've suffered for quite a few years now that I've become to think of it as "norm".

I guess a lot of people who have an illness that is affecting them come to think of it as... well, "the usual", "the norm", feel like it's just how life is and will be, kind of get used to it, but it still does affect you obviously whether you're used to it or not.

I don't really have any support, but I don't really think much can be done to help me. Kind of feel hopeless, you know? I feel the same with all my illnesses, but... yeah.

I did physio and acupuncture and trying to learn pacing, I'm on a lot of painkillers, but other than that, *shrugs*, just mainly trying to learn to pace and take my painkillers.

I guess what keeps me positive is my gorgeous baby Nephew, and my kitten Ruby, and my hamster JJ.

I also want to help others who suffer, whatever the illness, I want to be there for them and support them.

I do try to raise awareness about it, just like I do with my mental health illnesses.

I guess in my opinion - chronic illnesses, especially invisible ones, - are very hard to get others to understand... at least, I've found that, so raising awareness and letting people know about it and other chronic illnesses makes me feel useful I guess?!

It is nice though, to have others who go through similar things, to have people who do understand, and won't judge, and can relate... makes it feel less lonely, not that I'd wish any of the suffering on anyone else, but it does help a bit.

I'm glad this thread was made, thank you lovely Marie.

I'm sending love to all of you.

*TLC and love and cuddles and sparkles*


xxx



In a world where you can be anything, be yourself.






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Old 16-09-2012, 12:39 PM   #13
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Hello Katie, I don't know much about my food triggers, I may well not really have any. My dad has foods he cannot have without consequence and I know I can't have high fat meals like fish and chips without tummy pain, but other than that I am fairly sure stress and emotions are the biggest triggers for me. Both of which I find impossible to avoid.

I had a rough night due to other things but I am tummy wise, not too bad so far, today, thankyou Marie :)

Laurah, I am sorry to hear your condition has not yet been explained/diagnosed. Could you ask your consultant to refer you to another, possibly more specialised hospital/clinic for further investigation. It may be something rare that only a few people know about or have encountered.

Sam, that sounds pretty terrifying actually! I guess its good to know now and be prepared, but still.

Katy, give us your best toilet joke! Strangely enough Raynauds has been mentioned to me a few times, but I think it could just be terrible circulation issues. Though I was once at a bus stop and I literally cried from the pain in my hands [mid winter] and this nice lady offered me her wooly hat to put my hands in!! That was really sweet!

Petrichor, sorry I dont know your name, I am glad a diagnosis is finally being found, when I had some heart issues I just wanted to know what the cause was, above anything else. How has freshers week been asides the pain? Maybe you could take on some less physical roles?

Marie, has the pain been any less today, I know how stressful and frustrating it is to have things to be done and a body that wont let you. I find this with the migraines and IBS, I sometimes am incaperble but I cant just stop being a carer and taking my partner to all appointments, or not go out. Thinking of you xx

Sarah, I know what you mean, I keep getting filthy looks from people who see I have a bus pass, and it frustrates me a lot. Pets can be wonderful, I know that when I am writhing in pain, my cat with nuzzle up to me and he knows when I'm not well. Do you find you have better and worse days?

I know for me, when I have had a bad patch, not feeling constant pain is somehow the most wonderful feeling in the world. I know now to appreciate my health, because when it goes bad I am face to face with how little I'm able to do, and frankly it scares me; not being able to do everyday essential tasks.

*Waves to all*

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Old 16-09-2012, 01:02 PM   #14
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^ thank you. I don't know your name eithre, but I am Claire-Rose. *waves* Hello!
The thing about getting a diognosis is, I have had so long of people telling me that because I don't have a diognosis, it's not true, that I am just faking it to get attention/sympathy. People saying that i am lazy because I physically can't do certian things. Even with a diognosis though, I know that there will still be a lot of this continuing to happen.
Freshers has been fun so far! This week was mostly for the international students, who arrive early, so next week is all of the freshers fairs, events etc. I'm really looking forward to that. Getting to meet some new people, which is always good, and getting myself out of the flat. ^^



And yet, by heaven, I think my love as rare,
As any she belied with false compare.


There she was. Gone.

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Old 16-09-2012, 01:23 PM   #15
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Sorry you had a rough night, Marie, but glad you're feeling better otherwise :) High fat foods are one of my triggers also, I've found a huge improvement by stopping eating anything at all fried. Anxiety is a massive trigger for me too.

Pain levels are still pretty bad, but I still have so much to do today and tomorrow. Tuesday is designated rest day, though, I'm planning on doing nothing much that day. It is indeed frustrating when I'm finally mentally ready enough to do all the things and my body won't work! I'm trying to remember my spoons and keep pacing, though. Thank you for the kind thoughts, lovely xx

Hey Sarah :) You're welcome, hun. How are you? X




Now I'll play your ghost as my ace, whenever I'm led astray.
But I am actually good, can't help it if we're tilted.
I'm in my right place, don't be a downer.


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Old 16-09-2012, 02:19 PM   #16
The Stolen One
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*sits*
hey guys! :) I'm Caz and I've got chronic fatigue syndrome. I also hypermobility but it doesn't really affect me much! It used when I was injured as it meant I couldn't heal properly as I constantly was over flexing the join. Sorted now though! :)

My CFS is being rather crappy at the moment, I'm at uni and all my mates are going out for freshers/meeting up and going shopping and so on, which I'm not well enough to do, so I'm feeling rather lonely and depressed here! Hoping it improves when freshers is properly over and everyone starts to work.



There will always be a happy ending. If its not happy then its not yet the end.
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Old 16-09-2012, 03:50 PM   #17
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Hey Caz <3
Sorry you're still struggling so much, lovely, I know how frustrating it is when everyone is out and about and you're stuck in, resting.

I don't get to rest on Tuesday any more. *screams*




Now I'll play your ghost as my ace, whenever I'm led astray.
But I am actually good, can't help it if we're tilted.
I'm in my right place, don't be a downer.


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Old 16-09-2012, 04:06 PM   #18
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Hello,
I'm Hannah currently diagnosed with M.E, Fibro, TMJ and separate chronic pain alongside a fee undiagnosed issues as well.
Hope you're all okay as can be today

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Old 16-09-2012, 09:10 PM   #19
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Hi, Hannah, how are you?

We seem to have all the dxs in common! I would offer you a high five, but my shoulders hurt :P *gentle hug*

I'm struggling with knowing I'm busy as hell for the next two days, I have commissions to get finished and appointments to go to, and no time to rest when I'm in the middle of a huge flare. I've not been sleeping either, and the stress & everything is getting to me. /ranting.




Now I'll play your ghost as my ace, whenever I'm led astray.
But I am actually good, can't help it if we're tilted.
I'm in my right place, don't be a downer.


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Old 17-09-2012, 12:52 PM   #20
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*singers back in* my IBD flares whenever I'm ill with anything else, when I'm stressed or when I eat something that I am intolerant too, which is quite a lot of things.

I'm currently having a mild flare due to the stress of moving back to uni, however having lovely housemates has helped to ease the stress.

Also I've forgotten all my awesome toilet jokes apart from 'microscopic colitis- it's a little bit ****.'


Last edited by offlineforever : 29-09-2012 at 03:52 AM. Reason: stupid typo


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