Live Help


Forum Jump
Post New Thread  Reply
Old 11-12-2013, 03:51 PM   #481
Rodolphus
#Azkafam
 
Rodolphus's Avatar
 
Join Date: Jan 2009
Location: Bellatrix's Lair.
I am currently:

I had the same concern when I was staying at my partner's step-family's home for the first time, but nobody seemed to mind. I always try and make sure that I have rest periods when it's convenient for everybody (I.e going to lay down for an hour at 3pm when dinner is ready at 6pm is good, but going for a nap at 5pm may be an issue) :)




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.


Rodolphus is offline   Reply With Quote
Old 11-12-2013, 04:20 PM   #482
TheMockingCrows
 
Join Date: Aug 2013
I am currently:

Hello, my name is Ryn.

I'm 24, married, and was just diagnosed with Fibromyalgia, possible beginning osteo-arthritis, and IBS. In May I was diagnosed with Personality Disorder, Major Depression, PTSD, OCD and General Anxiety Disorder. There may be other things physically, considering other symptoms, but we're still researching.

I'm having a hard time coping with the diagnosis, really, and have struggled with my health my entire life. As a child I was treated for Junior Rheumatoid Arthritis from 3-12, and I've just.. never felt quite right.

I'm constantly exhausted and in pain and working to keep focused and content is even more draining. I wanted to say hi, and maybe get to know others who are coping with chronic problems, so that I can keep my head up with my treatment and therapy and improve my quality of living.

Unrelated to illness.. I love videogames and comics and manga. I enjoy drawing and reading and writing, am learning to work with polymer clay, and am a veeeeery much beginner crocheter and beginner sewer. I hope everyone's having a good day today, and if not, I hope it improves!

TheMockingCrows is offline   Reply With Quote
Old 11-12-2013, 05:33 PM   #483
LaurenLumos
 
LaurenLumos's Avatar
 
Join Date: Oct 2012
I am currently:

I just got back from psychologist who said that maybe I should wait out on getting help with my IBS but I don't know what to do. I just can't get myself to go out and I'm so freaking tired.

Hi Ryan sorry to here all the things you have to go through. I also enjoy video games and drawing :)



“Never forget what you are, for surely the world will not. Make it your strength. Then it can never be your weakness. Armour yourself in it, and it will never be used to hurt you.”

George R.R. Martin

LaurenLumos is offline   Reply With Quote
Old 15-12-2013, 09:37 AM   #484
New Colossus
 
Join Date: Dec 2013

It's kinda funny there's a lot of people that like video games here. I played a little bit before, but now with my CFS I have been playing a lot to pass the time and get through the day.

Anyways, thought I would introduce myself and say hi (My name's Charlie by the way) and see you in the forums/chat rooms!

Let's try and get some good days!

New Colossus is offline   Reply With Quote
Old 15-12-2013, 11:24 AM   #485
sherlock holmes
do you like my potato?
 
sherlock holmes's Avatar
 
Join Date: Mar 2004

Hi Charlie!

Welcome :)

I know this isn't the 'right' thread to mention it on, but I'm feeling fed up because my binging is rearing its ugly head again. I only had respite for 6 days, well I was eating less and exercising way way more than usual (which is why I thought I had bulimia and I told th ED lady this) but today the binging thoughts are back and I've already strayed off track (I plan what I'm going to eat every day so I know how many points (weight watchers) it is) and when I stray off track it makes me want to binge even more because i've ruined it.



Isn’t it funny how day by day nothing changes but when you look back, everything is different…

you once called your brain a hard drive, well say hello to the virus.


sherlock holmes is offline   Reply With Quote
Old 15-12-2013, 11:44 AM   #486
Crazy Cat Lady
 
Crazy Cat Lady's Avatar
 
Join Date: Oct 2013
Location: London
I am currently:

*waves*

Crazy Cat Lady is offline   Reply With Quote
Old 15-12-2013, 04:57 PM   #487
Benjibum
Resident pretentious lit student
 
Join Date: Dec 2007
I am currently:

Quote:
Originally Posted by TheMockingCrows View Post
Hello, my name is Ryn.
Jeez, you really lucked out genetically there.

Have you heard of a band called Silverchair? I don't know how big they are overseas but the lead singer/guitarist suffers from arthritis and still went on to be a killer guitarist. Everyone thought he was on drugs or something but he was just in pain the whole time. Their biography touches on it a lot, i'd highly recommend it.

Also welcome. We have shirts and cookies, both equally inedible by the time they get to you in the post.

Benjibum is offline   Reply With Quote
Old 16-12-2013, 11:55 PM   #488
The Stolen One
Caz
 
The Stolen One's Avatar
 
Join Date: Jul 2008
Location: Manchester =]
I am currently:

Quote:
Originally Posted by sherlock holmes View Post
Hi Charlie!

Welcome :)

I know this isn't the 'right' thread to mention it on, but I'm feeling fed up because my binging is rearing its ugly head again. I only had respite for 6 days, well I was eating less and exercising way way more than usual (which is why I thought I had bulimia and I told th ED lady this) but today the binging thoughts are back and I've already strayed off track (I plan what I'm going to eat every day so I know how many points (weight watchers) it is) and when I stray off track it makes me want to binge even more because i've ruined it.
It's not easy but when my eating threatens to flare I focus on how much worse it makes my m.e, it's so obvious to me if I've been eating like my body needs and the start restricting Etc. Remember that your body NEEDS energy to recover from something like m.e - it's not even that your body would like it, I don't think it's possible to recover when your eating is bad.. How is your body going to get the energy to start getting better?
It's really not that easy though, I know, I'm just saying what I tell/ believe myself!



There will always be a happy ending. If its not happy then its not yet the end.
Spongebob


The Stolen One is offline   Reply With Quote
Old 17-12-2013, 02:12 PM   #489
sherlock holmes
do you like my potato?
 
sherlock holmes's Avatar
 
Join Date: Mar 2004

Thanks.

I'm eating slightly more, struggling with binging, but getting lots of random pain and very bad constipation :( I suspect it might be my carbamazepine tablets causing the constipation as the dose was increased last week and I've had problems since then.

It also appears I might have a wheat intolerance. Not an allergy, just an intolerance. Probably all part of my IBS.

I need to see the GP after christmas to discuss the ME thing more but I dont really have the energy because it always feels like a battle to be taken seriously and not have everything dismissed as anxiety or side effects of medication.



Isn’t it funny how day by day nothing changes but when you look back, everything is different…

you once called your brain a hard drive, well say hello to the virus.


sherlock holmes is offline   Reply With Quote
Old 19-12-2013, 12:18 PM   #490
Emmabob.
 
Emmabob.'s Avatar
 
Join Date: Aug 2009
Location: Huddersfield
I am currently:

sorry to bump this, i was just wondering if i could get someones opinion on something.

ive been prescribed nefopam, its an absolute god send, lasts about 10hrs at a time, not needed oramorph since i had it prescribed. its making my urinary issues worse though - to the point where im going an easy 24hrs without peeing, no urge to go, no pain or anything. i self catheterise so not peeing in itself isnt a *big* issue. i usually go every 6-7hrs when im awake when im not taking the nefopam. would it be worth mentioning it to my gp or should i just suck up to it? ive finally found something which works & not wanting to get taken off it because of this :/

Emmabob. is offline   Reply With Quote
Old 19-12-2013, 12:19 PM   #491
Cryptic.
If at first you don't succeed, try try try again.
 
Cryptic.'s Avatar
 
Join Date: Jan 2008
Location: UK, Surrey
I am currently:

Sending lots of cuddles to those struggling lately/today<3
xxxxxxxx



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






Cryptic. is offline   Reply With Quote
Old 19-12-2013, 08:54 PM   #492
sherlock holmes
do you like my potato?
 
sherlock holmes's Avatar
 
Join Date: Mar 2004

Emmabob, I dont know how catheters work really- when you self cath you don't need to actually sit on the toilet and wee do you? It gets drained by itself into a bag?

Maybe then it doesn't matter that you don't get the urge to wee as it's getting drained any way.

But maybe not getting an urge to wee might mean that your bladder stops working properly or something, I dont know.

I would personally check with my GP, but I know how scary it is when you've finally found something that works and you dont want it taken away.



Isn’t it funny how day by day nothing changes but when you look back, everything is different…

you once called your brain a hard drive, well say hello to the virus.


sherlock holmes is offline   Reply With Quote
Old 19-12-2013, 08:57 PM   #493
Emmabob.
 
Emmabob.'s Avatar
 
Join Date: Aug 2009
Location: Huddersfield
I am currently:

^ catheters drain into the loo rather than into a drainage bag.. ive already got diagnosed bladder issues. shall mention it to my gp when i see her, ta x

Emmabob. is offline   Reply With Quote
Old 20-12-2013, 03:54 PM   #494
Rodolphus
#Azkafam
 
Rodolphus's Avatar
 
Join Date: Jan 2009
Location: Bellatrix's Lair.
I am currently:

Emmabob, it's always important to mention these things so you can find out why it's happening. Maybe it will be a matter of putting up with something for the greater good? I hope you can get answers and continue with the Nefopam. Finding something that aleviates that level of pain a bit is a wonderful feeling.

I had a telephone consultation with the genetic councillor from the Ehlers-Danlos Clinic yesterday, which was basically 45 minutes of some really weird questions, haha. My clinic appointment is on January 8th, where I have to undergo examinations and a skin biopsy. I'm anxious about the long journey there, but I'm feeling okay about the actual appointment (apart from being weighed).

How is everyone 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.


Rodolphus is offline   Reply With Quote
Old 20-12-2013, 05:38 PM   #495
sherlock holmes
do you like my potato?
 
sherlock holmes's Avatar
 
Join Date: Mar 2004

Re being weighed, can you ask not to know your weight? Step on backwards and ask them not to say it aloud? I hope all goes well.



Isn’t it funny how day by day nothing changes but when you look back, everything is different…

you once called your brain a hard drive, well say hello to the virus.


sherlock holmes is offline   Reply With Quote
Old 20-12-2013, 11:30 PM   #496
The Stolen One
Caz
 
The Stolen One's Avatar
 
Join Date: Jul 2008
Location: Manchester =]
I am currently:

I ask not to know my weight more so I don't slip into e.d behaviours now I'm actually fat aha. Sad times.

Does anyone with M.E have a heart beat problem? They noticed mine in august and it's only been higher, now on beta blockers but just curious if anyone else has this? Online tells me some m.e people get it. My doctor can't work out why mine is doing this though.



There will always be a happy ending. If its not happy then its not yet the end.
Spongebob


The Stolen One is offline   Reply With Quote
Old 29-12-2013, 07:44 PM   #497
sherlock holmes
do you like my potato?
 
sherlock holmes's Avatar
 
Join Date: Mar 2004

Feeling really ill tonight, pain all throughout my body.

I told mum all of my symptoms and she was surprised how many things were 'wrong'. She said it sounds like fibromyalgia and I said the GP mentioned that long with ME/CFS, but I need to go back and talk to them.

I got prescribed iron to take and I can't go back until I've tried it (I know it wont help, but if I go back without taking it they will just say it's because I mght be anaemic even though my bloods were fine) so that's another month of waiting.

I just want my GP to listen to me and not say "oh it's your anxiety/stress levels".



Isn’t it funny how day by day nothing changes but when you look back, everything is different…

you once called your brain a hard drive, well say hello to the virus.


sherlock holmes is offline   Reply With Quote
Old 04-01-2014, 05:16 AM   #498
mirta
 
Join Date: Jan 2014
I am currently:

I'm just going to drop by and say "hello everyone I have Ehler danlos!"
Pain that I get from my joins doesn't bother me as much, having two back surgeries due to Scoliosis did and being stressed over not having enough money if I'll need a joint surgery is very stressful as well. Thank goodness I'm not the vascular type, so my lifespan should be not really affected. :)

mirta is offline   Reply With Quote
Old 21-01-2014, 07:41 AM   #499
Emmelberry
 
Join Date: Jan 2014
I am currently:

hello! i'll introduce myself. i have asthma which used to be troublesome at least once a day but thankfully is doing great!

after just getting out of a severe and damn lengthy depressive episode (2 years, started to improve for some months) and found my headaches and back/hip/knee/ankle pain was manageable i started getting extreme fatigue and spells of visual disturbances (palinopsia, stars, glowing lights, fuzzy glowing outlines, disturbances to size/shape of objects, etc), tinitus, dizziness and a lotttt of dissociation.
possibly related is visual snow, floaters and headaches i've had since...always?

i'm used to people talking about their negative experiences with health professionals and it can be off putting for people (especially as my mum runs a charity for those with syringomyelia and chiari malformation). so i mostly came hear to kind of brag about having my first neuro appointment today! he was really delightful. also helped by him telling me it's probably atypical migraine/partial seizure. so it's highly unlikely i have a brain tumour!!! which is great because i thought palinopsia wasn't migrainous.

some of the fatigue is thought to be neuro things and some because of my low iron stores. months of treatment and they actually got worse? so after some bothering my GP she agreed to refer me to a general physician. waiting for it to go through. that being said she wouldn't change my treatment despite me not absorbing it.

so. yeah. still figuring stuff out. because of the fatigue i can't keep up much with uni (and i tried so hard to get in, essentially doing my A levels in a year when i was severely depressed) or socialise much so i'm relapsing and don't have support after my CAMHs discharge. sorry for the huge wall of text but couldn't think of how to do it more concisely (brain's messy!) whoopsy. hope to get talking to y'all.

Emmelberry is offline   Reply With Quote
Old 21-01-2014, 12:28 PM   #500
The Stolen One
Caz
 
The Stolen One's Avatar
 
Join Date: Jul 2008
Location: Manchester =]
I am currently:

Hey Mitra, that sounds really painful!

Glad it went well Emmelberry, it's great when someone actually helps!
Good luck with the referral, fingers crossed it doesn't take too long to come through!
I guess they'll keep treating it because your iron levels are still too low, so he has to do something about that really!



There will always be a happy ending. If its not happy then its not yet the end.
Spongebob


The Stolen One is offline   Reply With Quote
Reply


Currently Active Members Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Censor is ON
Forum Jump


Sea Pink Aroma
All times are GMT +1. The time now is 03:03 PM.