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Hey ladies!
Just had to share this with someone...
Just restarted taking Mattia's recommended supplements after a month long break of not taking anything at all. What I was on put me in a lot of pain and it really scared me away ( I thought I had more courage than that, but it was bad)...After taking out the supplements I felt back to "normal" feeling pain but knew that I would go back to Mattia's protocol as it is the road to FULL long term healing.
Anyway, I decided to start today on a regimen and Mattia had me start on probiotics ( megadophilus) which she is convinced will help me with my pain :)
I have been mortified of probiotics for a LONG time
I even told Mattia in the beginning that they were my biggest fear as .they always caused me massive pain in the past ( I'm sure because they weren't combined properly as I was dosing myself before Mattia) so it's honestly a big step for me to take them and I'm proud of myself and I'm also having a massive panic attack hahah.
I feel like a war victim who just heard false gunshots in the background. Excuse me for being so overdramatic ( I'm in theatre , so being overdramatic can't be helped hahah) , but I'm pretty nervous and my brain can't help but catastraphize things.
Mattia is convinced that this is the key to beginning my healing however , so I'm excited but also very nervous .
Part of it is that I get nervous about things like "What if I need to cancel something with a friend or work b/c of how I am feeling.?" I never know what to say if that comes up as I am a people pleaser and hate to say no...( I've even worked while I had food poisoning before!!)
....barely any of my friends knows what I am going through as I haven't shared b/c I don't know what to say and so when I cancel on them , I feel that they get upset with me and wonder why "feeling bad" happens so often and then I feel bad about it when I should just give myself a break...
What do you ladies say to friends, employers etc. about your physical condition to help them understand? I honestly get pretty embarassed saying it's mainly a bladder thing ( although my boyfriend knows, that's about it )....and also it's not JUST the bladder ! So any advice about what you have told your friends, families, employers...?
I have said something like-
I have said something like- "I've been dealing with a pretty serious chronic illness that affects my life in many ways. I have good days and bad days but it is kind of unpredictable. I am working with a world renowned Dr of Chinese Medicine and the process can be difficult a t times but I am working through it and eventually I will be back in balance. "
"
"It kind of feels like a bladder infection but thatis the tip of the iceberg"
I guess I never have an issue telling people I can't do something really. I am more upset myself about missing out.
All my close friends, family
All my close friends, family and work members know about my bladder condition. They know I have something called interstitial cystitis and I tell them that when I'm going through a flare it feels like a bladder infection. Most of them know what a bladder infection feels like and that it feels pretty horrible so they can relate! My boss has been really understanding and flexible with my schedule and my friends, even if they don't fully understand how I feel, have all been supportive. I think it's so much better to be honest with people, rather than making other excuses not to see them etc. It's also hard because often we don't look sick when we are in a flare, and without people knowing about our condition it's easy for them to think we are lying if we say we "just don't feel good" or are "sick".
I know right?
I know right?
Ok first of all though, it made me really sad when you criticized yourself for not being "strong enough" to take the herbs Dr. B prescribed. This is not easy, and I really feel that healing is all about timing as well as the right herbs. You have to be ready for it... mentally, emotionally and physically. So don't say you're not strong enough just because you decided that for your emotional well being you needed to take a break from extreme pain. You weren't raised a samurai warrior... you are learning to be one :) So I actually think it is extremely strong to listen to yourself and what you need and to take a break.
Anywho, as for what to say to people, all of these ladies have given great advice. I think it's so important that no matter what, you are true to yourself. If like eringobragh you feel really vulnerable and sensitive when you talk about your health to people then obviously it is a good decision for you to keep that information to those that are closest and who won't make you feel isolated or judged.
If you feel more confident and/or comfortable then you might be able to tell everyone. I think the general rule is that those that are closest to us, and care about us most will understand and be there. They will be supportive however they can even if they don't understand. We can't expect them to react perfectly all of the time, but we know they care and can share what we need to with them.
In contrast, I think that it's pretty fair to say that there are obviously people in our lives who won't understand and we may get some eye rolls and judgments, and whether not we want to have those eye rolls or can handle them is a personal choice I think. I personally am totally honest with people about my treatment choice and my condition (ok not with potential dates... haha) because I personally would like to normalize the choice of alternative treatment by speaking about it as much as possible as a scientifically sound and effective mode of treatment.
Bon, anyway, I found that in the beginning it was much harder for me to be open with people, but I also realized as time went on, like you say, not being open made me feel like I was getting a lot of unnecessary judgements. Now I am honest, and it's on the other person to be compassionate or no, but their amount or lack of compassion in no way reflects on me... so great!
Good luck, and please be gentle and forgiving with yourself.
This is hard work! Congratulations on making the next step :)
Love
Han
Hey PIxie! Good topic to
Hey PIxie! Good topic to bring up. This is one that had me baffled for months when I first got IC. Particularly hard for me was explaining to people why suddenly I wasn't drinking alcohol or eating normally. Losing weight didn't help because suddenly people just thought I was dieting to lose weight and then going to the bathroom a lot
There was no way I wanted to tell colleagues or people I barely knew or even some not so close friends that I had bladder issues. It seemed way too personal and embarassing. So I finally settled on "I have an auto immune disorder in my gut". Only half a lie right? Matia says everything stems from the gut here..... Explains to people why I am not allowed to drink and why I'm on an elimination diet. I tell them I have a bacterial imbalance in my gut caused by bad lifestyle choices in the past, toxicity and antibiotics I took years ago. When I'm not feeling well - I tell them my gut is flaring with pain. A lot of the protocol fits in perfecty with this story too.... probiotics, herbs.... Sometimes I even come across someone who has a background in nutrition and am able to get away with them thinking it all makes sense.... I simply explain to them that what I have is similar to leaky gut and candida and that I am on a stricter version of the anti-candida diet (which is essentially no sugar, no yeast, no gluten, no fruit etc etc)...
Anyway this is the story I'm running with and it seems to work. People are understanding generally although the people who seem to be the least understanding are people I know who work in western medicine. Eg. I have a friend who is a medical nurse and she thinks the elimination diet etc is a bunch of bollocks and starts ranting off different medications that I should take instead. Nice. I just ignore it and get on with my own thing.
Thanks ladies, your responses
Thanks ladies, your responses and experiences are invaluable!!!
You all are right, I really should be honest as much as I feel comfortable...I have told them all this time that I am dealing with stomach issues ( which I find I can pass off much more easily than explain the bladder issue as Miss CC stated, you are so right, it all makes sense and I really dont' want to hear any bladder conversations or jokes )
For example; I've told my boyfriend multiple times that No, he cannot call me Tinklebell ....he thinks he's funny *rolls eyes* lol
and most of my friends know that is an issue for me that I always need to be focused on....I'm sure that it can get confusing for them when I've felt better and strayed off the path and began to eat and drink whatever I like , and then gotten sick again b/c I wasn't paying attention to IC ( and didn't have a doctor at the time to lead me through it! )
Hannah, I loved your comment about the samurai warrior hahah we ARE training to be warriors aren't we? I read a lot of Buddhist literature and am very much in love with the teacher Pema Chodron who talks a lot about how we are training to be bodhisattva's , which is essentially one who becomes enlightened through dealing with hardships and therefore has more compassion and love for others and themselves through dealing with the process. I believe that from that definition, we all are essentially in training to be bodhisattva's, samurai warriors, etc. and will all get there!
Pixiek,
Pixiek,
You seem to have such a great perspective on things and write your thoughts in such a lovely way. I have to agree that going through the trials of this condition has opened my heart to the sufferings of others around me - in a way I would never have been able to fully understand before.
Sue
Pixie, your story is not even
Pixie, your story is not even a half-lie. It is the truth. People don't really want to hear about the details of our symptoms (whether we have IBS, or acid reflux, or frequent urination). But because there are so many people out there with messed up guts, your explanation goes a long way towards explaining. Keep it simple. Two sentences. Simple! Then you can move on!
If we don't excel at health, the only other option is disease.
I found it easiest to say
I found it easiest to say something to the effect of Im on restricted diet.
If they need more explination i say( i have a medical condition) ( due to a bladder disease) or( i have to use the restroom often due to a bladder disease)
if they ask why i usually respond ( certian foods or things make my bladder swell causing it to not function properly)
Most people get the point quickly without having to go into much detail.
I hope this helps. I know going to restruants can be daunting when your server looks at you funny for the questions you ask about the ingredients in their food!
Hey Pixie! This is a topic
Hey Pixie! This is a topic that took me a LONG time to get right... I say something different depending on the situation. If someone is a VERY good friend, then they know about my bladder issues. If someone is just a friend (even extended family or coworkers), but I don't really want to share too much, I say that I have an autoimmune condition, but I'm slowly getting better. Lots of people with autoimmune conditions eat special diets, so this is how I explain the diet. And if it is someone I just met or is just an acquaintance, I just say that I have a health issue.. or if I need to get out of something, I just say I'm not feeling well. This happened to me this weekend, in fact. I was out at a wine bar (ironic, yes) with a very good friend and her mom. Her mom said, "You're not going to get anything?" I said, "No thanks, I don't drink." She said, "ever?" I said, "yeah, I'm not a big drinker." And that was it. I never had to bring health into it at all. Everyone had a great time, I just had water, and everything was fine. I learned that it's only a big deal if you make it a big deal. Lots of people don't drink... lots of people eat healthy... And you don't have to tell people any more than you are comfortable saying. Just say whatever you're comfortable with.
I tell them I am recovering
I tell them I am recovering from a chronic bacterial infection which is mostly true. People seem to understand that. I have had to cancel clients and skip out of different social events and it is never easy. I look forward to not having to do that anymore!!!!!