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Hi all,
I am reaching out since I feel in need of some support.
Since starting to see Matia, I have had trouble sticking to the diet 100%. I get to 90% but can't quite manage to never cheat. I have a business lunch that I can't avoid (I order something I think will be benign, but lord knows what's in it), or eat something that is forbidden without thinking. I also recently found out that some of the products (lotion, shampoo) I used for quite some time were contributing to my irritation.
I am feeling quite low that I will never move past this. I was progressing well for a little bit but now seem to have hit a wall. I know this is partially my doing, but just need some reassurance that things will pick up again.
Hi aberger
You will definitaly move past this, just focus your attention on getting better. Think of overcoming this disease, and having a normal life again. This will happen if we follow what Matia tells us to do. I get anxieties about doing things wrong, and sometimes even have nightmares about eating something i shouldn't. What diet level are you at? I've been on list 1-2 since january. Just eating the same things day after day made it easier in a way, although sometimes boring. If you forget what you can eat, print and carry the ICAMA list with you. If you have to eat out, order plain fish or filet, and some steamed veggies, so naturally try to choose a restaurant that can accomodate your request. Tell them you are allergic to seasoning and substitute butter to extra virgin olive oil they use. Bring your own water, this should cover most no no's eating out, skip the bread (i love bread so this is hardest for me while waiting for my food to come). It's really hard, and i am sure we are all struggling with this, my biggest motivator is the pain. Even if i do things by the book, i still have flares, due to hormones, stress, even cleaning my own house. Even though our bodies are out of balance now, we are in good hands with Matia and towards the road to recovery. Hang in there :)
...a little support....
Hi aberger, I'm just entering my fifth month of treatment and am on list 1/2. I have only eaten out once and do get really anxious when going out worrying about what on earth I can eat, so try to take things with me.
I am yoyoing all over the place, I have a few days where my pain levels are down to a 1/2 and I start to feel hopeful, then I go down hill and the pain goes up and I fight to not feel overwhelmed again. I think the backwards and forwards is really hard to deal with so you have my sympathy.
I met up with one of Matia's patients who started treatment in November 2008 and is now pain free and has been for several months. It was amazing to think that she had no pain and was not aware of her bladder attall. We have to keep going and believe eventually the body will respond positively to the treatment and start to move in the right direction and just keep going. It is so hard to do that though isn't it, I really struggle but have to fight to get my thinking right.
We will get there even though we dont know when that will be. Lets hang in there together.....
thanks ladies
Thanks for the encouragement ladies.
I started seeing Matia about 7 months and progressed to List 2 quickly. After a month or two I was able to move onto List 3, but now I can't tolerate some of the things I used to, like almonds (my favorite snack!). So I am reverting bac k to List 2 until this phase passes. Hopefully, this discomfort was just caused things I have now identified and removed from my regimen.
I keep reminding myself that this too shall pass and I am trying to say a prayer about what I am grateful every night before I sleep. I am not religious, but find it comforting to send love and positive energy out into the universe.
Though I am sorry anyone has to deal ith this terrible illness and it's nice to know we are in this together.
This too will pass...
That is one of the things I try to say to myself over and over, it is so hard though when it drags on and on.
I too am sorry that anyone has to deal with this terrible illness, I would never have believed there could be anyting that effects every aspect of your life and it is so difficult for anyone except those who have this or have had it to understand. I hate it and feel so angered that it is such a 'hidden' disease and that it is so unheard of. If I had known about it I am sure I would have been aware that I was heading for a fall because looking back now knowing what I know there were alot of signs, I could have done something before I reached the trigger point. But the past is the past and cannot be changed.
Would you like to email direct so we can keep more in touch as we are at similar stages in treatment, time wise I mean?