Everybody;
Two things you've done or are planning to do today to take care of yourself?
[mine; 1. I had a nap earlier because I really needed to. 2. Even though it didn't go as planned, I went to physio.]
Good Idea!
1. I slept last night, and for quite a long time unbroken as well.
2. I plan to go for a gentle walk later on to hopefully stretch out sore joints.
And yet, by heaven, I think my love as rare,
As any she belied with false compare.
Hi,my name's Nat and I've had chronic issues with stomach pain, which often flairs up at the most difficult times but mainly right now a while back my bladder when into retention. I can't pee at all, For a long time I had an indwelling catheter and I tried a suprapubic but now I catheterise myself. I hate doing it and find it really difficult, it wears me down so much. I think unless you have a chronic condition you don't appreciate how important simple things like going to the bathroom are. It's nice to know there's somewhere I can go where there's people who can understand.
Hush, little baby, drink your spoiled milk
I'm crazy, need my prescription filled
Do you like my cookies? They're made just for you
A little bit of sugar, but lots of poison, too
[quote=angel of despair;3372093]Hey Marie :) technically i only have suspected endo, you need to have surgery to be diagnosed with it. Im on the depo injection which controls it quite well. It took nearly a year for me to get refered to a specilist though, they kept blaming my pain on mental health problems which was very annoying of them.
QUOTE]
Sorry to jump in, I have the same problem! Whenever I said endo to anyone they though I was making it up, it's nice to know there are other people that know! Though I've had surgery looking for it (they didn't find any) I was diagnosed with PCOS as well as extreme pain/heavy periods. I have the mirena which controls it really well. They would often blame it on my MH issues to so I know how frustrating it is! Glad they found something that works for you, though sorry you had to wait so long!
Hush, little baby, drink your spoiled milk
I'm crazy, need my prescription filled
Do you like my cookies? They're made just for you
A little bit of sugar, but lots of poison, too
Hi,my name's Nat and I've had chronic issues with stomach pain, which often flairs up at the most difficult times but mainly right now a while back my bladder when into retention. I can't pee at all, For a long time I had an indwelling catheter and I tried a suprapubic but now I catheterise myself. I hate doing it and find it really difficult, it wears me down so much. I think unless you have a chronic condition you don't appreciate how important simple things like going to the bathroom are. It's nice to know there's somewhere I can go where there's people who can understand.
this sounds like myself, minus the suprapubic catheter.. I had the threat of it, but managed to get an indwelling.. if u want to talk to anyone, feel free to pm me. :)
Having a really bad day/evening/night.
The pressure in my head is returning back to how it was when it first appeared. To the point I can't do anything, and I've had 4 nosebleeds today too. Meh. I'm going to book a doctors appointment tomorrow, I'm just in so much agony and a total 'feeling sorry for myself' mood /:
That mood is perfectly acceptable, we all get it. Or at least I do sometimes!
But I think it's okay, because it is ****. It's easy to be like 'stuff happens to everyone' etc but it doesn't actually make it better it's happening to you!
I hope it clears soon, sounds like it's a rough day *hugs*
There will always be a happy ending. If its not happy then its not yet the end.
I really need my body to play the game this week but it doesn't seem to want to. Tis my birthday tomorrow and I've already accepted I need to be in bed during the day so just planned a birthday meal with some uni friends. It's not much but it's more than I would usually do, even though it's only a little bit more. Then on Sunday my parents are coming up which means I need to be alive - just worried that my body is going to rebel and I'll end up in more pain or something as a result :/
There will always be a happy ending. If its not happy then its not yet the end.
My name is Nicole and I have Postural Orthostatic Tachycardia Syndrome (a fancy name for I stand up from sitting or laying too quickly and my blood pressure drops as my heart rate rises). I also have brittle asthma (which is treatment resistant asthma) and recently diagnosed with Lupus. Most of the time I am in pain from the lupus, can't breathe because of the asthma and having to be extremely careful because of the POTS. I have also had really bad medication reactions which make my memory awful and my walking extremely difficult at times.
I often get frustrated with all of my diagnosis' but I am learning to live with them day by day and thankful they finally figured out what's wrong with me.
Angels are friends who supportyou when your wings forget tofly.
Just wanted to leave careful hugs and lots of love to all of you <3
I'll come back and leave proper replies when I'm not so dizzy. Side effects suck.
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.
I've had a cold this week, which means my colitis is about to flare up, I can feel the warning symptoms occuring.
However, here are two positives.
1- I have noticed these warning symptoms and am now acting to prevent the issues.
2- I have aquired the ability to do university work and have 1000 words for something that is due in at the end of this week
Hi. I am Kylie and I am 24.
I have a brain malformation that I was born with. I wasn't diagnosed with it until I was 19 and that was after being misdiagnosed. Brain malformation caused a problem in my brain that caused a build up of fluid. The build up of fluid caused vision loss because of how long it took the doctors to figure it out/do something about it. I had a shunt put in to drain the excess fluid from my head to the empty space in my abdomen. Shunt was removed in May because it got infected and caused meningitis and a nice long stay for me in intensive care. Waiting on insurance company to play nice with my doctor to get it put back in.
My biggest problem is my head hurting. Some days its tolerable and others its nearly unbearable. Vision loss has started up again because I don't have the shunt to drain the fluid. This also makes my head hurt about 10x more than normal. I meet the legal definition of blindness but I am still in a denial of sorta about it. I rarely ever use my cane and I don't normally tell people I am blind. Of course this means I fall and get hurt a lot but in my mind that is still better than admitting I can no longer see that well.
My immune system is just plain awful and doctors haven't been able to figure out why. Most of them have realized that for awhile now. I have gotten an infection after everyone of my many many surgeries. What made them decide to start trying to figure it out more was when I did get meningitis back in May. My blood work was completely normal. My body wasn't trying to fight the infection at all. I was sent home from the emergency room the first time because the blood work was fine. I went to a different hospital 2 days later when the pain had gotten much much worse. Still nothing showed up in the blood work but the doctor could see how much pain I was in and admitted me anyway. They found the bacteria why they removed fluid from my brain. This is easier than a lumbar puncture when you have a shunt.
Today my pain is really bad. I still have to wait a month to get back into my neurosurgeons office because of my insurance. My neurosurgeon is out of network. The only one that is in is a couple of hours drive away and his record is shady.
Katy, I hope you're not suffering too badly, lovely. How are you?
Caz, how are you? Are you finding any differences with the weather being awful?
Kyllie, it sounds like you've been through a hell of a lot and I really hope things get better for you. I hope your insurance can get it sorted for you to have another shunt back in.
My body just won't play fair! I now have a pretty serious ear infection, and if it gets worse or fails to improve in the next week I may end up in hospital >_< I have life long issues with my ears and infections are nothing new but I could do without it right now.
I did manage about 50 minutes of walking today and a 4 hour Menhdi shift, so I'm pretty pleased with myself for getting through the day without major incident but I am absolutely wiped now. Luckily, I've nothing much to do this weekend and my girlfriend takes wonderful care of me when I need to rest, so I'm hoping the after effects of today won't last too long :/ I can always hope.
My two things for today that I've done to take care of myself;
1. I've tried super hard to stay hydrated (I don't feel thirsty, ever, so often end up dehydrated by accident) and managed 1.5l so far, as well as eating small, regular amounts of food during the day to keep my sugar levels stable.
2. I was tired in town, so grabbed a cup of tea and curled up in the library for a little while to have a rest.
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.
Thanks I hope so too. I hope you start feeling better and don't end up in the hospital. I'm glad you have your girlfriend to take care of you.
My two things for today
I took about a 30 min walk while it was still dark this morning.
Later tonight I am going to try to spend some time watching a movie with my younger brother. Normally I feel awful and even though he sleeps in my living room we don't spend enough time together.
on top of the usual body woes and depression flare up, I am also now having stomach cramps from hell. But I am trying my hardest to look forward to going home tomorrow, and not think about the 3 hour train ride (going to be hell on my joints). i just hope I feel less sick by then.
two things:
I made myself eat something, even when I was feeling really not like it.
I have warmed up my microwave beddybear a lot and he is keeping me warm and snuggly.
And yet, by heaven, I think my love as rare,
As any she belied with false compare.
Oh Katy, I'm sorry it's been such a rough day for you, I hope it all calms itself down really soon! *gentle hugs*
Kyllie, I hope you enjoy your movie and time with your brother and well done for your 'looking after yourself' things & thanks for your lovely words :)
I'm lay in bed with my girl's microwaveable Bagpuss held over my ear. I'm really hoping the stuff they gave me for it work enough soon, major CBA with hospital right now >_<
I hope everyone is getting enough rest!
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.
Hi, my name is Sarah and i am so glad i found this thread! I have IBS(which hasnt been bothering me. yay!) and recently got a tentative diagnose that i may have Meinere's Disease. Which as far as i can tell is just another fancy name for "idk why you are dizzy and pass out". After 2 months of doctor visits, and physical therapy i finally have a test for next friday to see. i am just hoping with a firm diagnoses they can give me so kind of treatment so i can do things again, just trying to stay positive.
Hey Sarah :) I hope the tests go well and aren't too intrusive or anything for you and you get treatment soon. Yay for your IBS behaving itself :)
I slept with a microwaveable teddy that I'd warned up and a heat patch in my pillowcase and woke up without the tension headache and neck pain I've had for a week, so happy! The heat patch is still really warm after 10 hours, so I'm taking advantage and laying in bed and using it to soothe my ear pain. Feel significantly better after a few better hours sleep :)
I'm going to ask my girl to get me some more patches from work (she works in a pharmacy - so handy :P) as they really seem to help.
How is everyone feeling today?
I'm so glad I made this thread ^_^
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.
