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I felt like maybe I was turning a corner and now the horrible nighttime flares are back. I have been doing this for so so long and I just don't know how much longer I can keep trying when I feel like I just keep going backwards every time I have a good patch. Nothing changed in my diet or environment to precipitate this and now everythign feels so overwhelming. I am finally tring some new things inmy life (new old t hings that I used to do) and it just feels like it will be impossible.
The worst is that I am just so scared and back to feeling desperate. Every time I think I am managing the emotional part of this, I relaize it is directly related to how I feel physically - so if I feel good- I am fine, if I start feeling bad for more than a couple of days, I am scared and depressed and irritable. Then I usully turn a corner mentally and accept that i am back in a bad phase but jeez- when I am going to be able to stop this cycle? It is so exhausting.
Please don't ask how long I have been in treatment- longer than I want to be and probably longer than most of you will be-I hate being the poster child for lack of success with this! But I still come on here for support because I need it.
Deir I am so sorry. I
Deir I am so sorry. I certainly can relate to feeling optimistic when I am feeling good, and feeling pessimistic when feeling poorly. This is just human nature. I try to tell myself , this too shall pass. But it is hard. My increase in symptoms usually is related to ovulation or a change in protocol. But even tho I often do know the source of the increase in pain it does not always make it easier. Anyway, I don't know what to say, but I am glad you are still reaching out.
If we don't excel at health, the only other option is disease.
I have been on a while too,
I have been on a while too, and I think I'm fine then I eat something or deviate in someway and I'm painfully aware that it's still here. Last November i had a new carpet installed and flare from hell while on an airplane resulted. Ever seen someone go to the bathroom 8 times on an airplane trip of 3 hours, look my way. Humiliating. So flares will come and flares will go. How do I deal. For me I remember how I couldn't walk across the room without feeling like a knife was being shoved up my bladder, I sat burning in agony with no relief. So a flare here and there that's ok cause I can walk, i can sit through a movie, I can go to a restaruant. and I can be without pain for days. If i have urgency and occasional flares of burning so be it. Nothing compares to what I was living through before and every day is a gift from matia. I remember going to the urologist and having him tell me, there is nothing we can do, the medicine has horrible side effects and franky doesn't work. Finding matia was a blessing and so when things go down for a while just remember it's only for awhile, and you are leagues above what most IC patients are going through. I read on one website someone overdosed on oxycotin because the pain was so bad and she died. Others go for help and come home in the same agony that drove them to the ER, already taking the strongest pain medicine possible and no relief. Of course we know the medicine itself messes up the intestines and causes worse IC. So, recently i had a flare after eating at the CIlantro Bowl and having black tea at a friends house. I was back to agony for real. But in 2 days it was gone. If that's all that happens to me even if I'm never complertely cured I'm ok , I am so grateful and so much better. A flare is just a flare it's not a permanet return of the disease, so take heart. Try and look at the progress even when in a flare and know how far you've come. We aren't in a competition no one cares how long you've been on it. It's not a personal failure it's just the nature of the disease we are dealing with and it's a doozy for sure..Hang in there you're doing better than you think..blessings and love, Julie
Thanks mimi and Julie.
Thanks mimi and Julie.
Julie-I am grateful that I never had the level of pain that you are describing but that also makes it seem that I have little progress to look at. i have always been ok some days and horrible others. The nighttime flares actually started AFTER I started treatment. So it is a little different in my case. I would never be taking huge doses of painkillers because I have handled this all along without them so it doesn't help me to compare myself to others in worse shape if you know what I mean. Believe me, I know I do not have the worst case by far-but my debate is whether I am doing the right thing at all since I have had so little real progress to count on. And that is terrifying.I seem to go right back to bad every single time. I cannot relate to the stories of improvements that I hear. But I hear you that this too shall pass and I know Matia is the best- just don't know if my body is going to ever respond.
I had a much better summer than last year so I am trying to remember that but last year was worse than ever so even that is little comfort.
Thank you for your kindness, ladies
Hello
Hello
I really empathise - althoigh I did have the endless constant agonising pain , I also like you , suffer badly at nights which started after I began treatment.
It it is very tiring and draining not to be able to rest and sleep. Recently I have also had these night flares where I wake up every hour to pee and that is unbelievably draining. It affects me emotionally and physically. This week I have felt delirious with lack of sleep. I have been trying to work out if it is lying down or nightimes that cause the issue ?
Abyway a a I am reaching out to say you are not alone. This will pass as it has done so before and I see it as just another crazy stage. I have also been in treatment a long time and not being negative but I do hear you and the worries you express are something I relate to.
I dont know if this helps any but I have tried to work on strategies that build my resilience and keep my nervous system calm. I fail a lot !!! But I keep reading and learning and practicing as I realised I was totally in the up down emotional cycle you describe. This surely can't help healing - ? I felt it was cruel to be landed with this pain and lack of sleep and all the loss IC has brought and then I wasn't allowed to cry or get mad or feel the extreme emotions it brought me. But -as I am working through it I am glimpsing slightly more resilience and a little less despair and better skills for when I feel physically awful which as u describe brings the emotional disturbance. I have been helped with this by a practitioner and it is helping little by little. I feel it is helpful for me to try and reach a state of relaxation as often as I can - even just to offset the extreme emotional states I get into.
I don't know if this helps any. I hope so. I can give you more details of the coach who is helping me if you are interested.
Sending gentle hugs. X
Thanks! It helps a lot! I do
Thanks! It helps a lot! I do think the actual act of lying down causes the flare for me. Dr B said that the little bit of urine can slosh to a bad spot and spark it all. I have had it happen form an otherwise decent bladder day. I defintely have worked so much on my resilience but I suppose that is a continual process and today i got out of the bad mood pretty quickly which is a plus. I am always grateful for the things i can do- lieke sing- i just came from a 4 hr rehearsal and that was great.
thanks a lot
Hi everyone- I just wanted to
Hi everyone- I just wanted to update that the nighttime flares stopped after a few days. Generally, when they have started up,they goes on weeks or even months. So, that is why I was struck with so much fear. I am tentatively feeling hopeful since this bad span was much shorter. I had a couple this week but 2 in a row don't scare me if I then get a break. Anyway-I just wanted to update. Still not feeling great but I do think overall, this year there has been some improvement
Deir, I know this is no
Deir, I know this is no consolation to you but you will be the Icama Poster woman for long-term pain and improvement. I am so thankful that you can see some improvement - so many of us are pulling for you to get through this. We all hold our breathe when we see a thread come through from you. You have been so very brave in this battle and I know I speak for us all when I say I cannot wait for the day that you have complete relief. We are all flying to celebrate with you when that day comes so everybody needs to start tucking some money back. Lol. Seriously I pray it only continues to get better.
So glad to hear your update.
So glad to hear your update. Baby steps..as long as they're in the right direction. It's huge that the span between flares is getting longer and that the windows of pain aren't lasting as long. You are healing and I love heating about it! Gives us all hope
Hearing about it :)
Hearing about it :)
This is a very good sign. I
This is a very good sign. I feel this way about my bloating. I used to have a good day here and there, last month I had nearly 2 weeks of no bloating before it came back. I look at these trends as good signs our bodies are getting stronger and really doing this! Thanks for the update!
If we don't excel at health, the only other option is disease.