Feeling very discouraged

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I am now 4 months in and while I see small improvements with all of the sideline symptoms my pain is still pretty elevated :((((( I am on the beginning of list 3. No nuts & only just tried blueberries. When my pain was at its worst it was an 8-9/10 now most days it fluctuates between a 4-6 but as pain levels go that is still painful & debilitating. I am doing everything on the protocol with much committment & perserverence. I just feel like it should be getting better faster!!! Someone tell me that this is normal & I will start to see improvement soon. I read that some people are able to exercise or do other things. After I wake my 2 kids up for school & take care of my 17 month old I have nothing left.... I feel like I'm always fighting the pain & struggling & doing my best to keep my head above water. I know some are in treatment for years but I just can't stand the pain any more. What do I have to look forward to & when can my kids have a Mom that is an active part of there lives:) I'm just starting to feel so hopeless & frustrated!!!!!

Amy

deir's picture
deir

I am not sure if this will make you feel better but I was on list 1 for so long ( I forget but maybe 8 months) and you are already on list 3!!! That shows right there that you are doing well. The relentlessness of this disease and the glacial pace of the treatment can be so discouraging at times. I think it sounds like from what you say that you are actually doing well. Is there anyway to reframe it in your mind?
 
Written another way it could be "after only 4 months, my pain has gone down from 8-9/10 to a 4-6 and I am alrealdy starting list 3" but still I understand the plain frustration of even dealing with this at all. I have 3 kids too and man it is tough because they just don't give you a break!
 
Also- I was pretty much at almost no improvement- in fact the herbs made me worse- until this August- now I feel like I have quickly progressed (although I have had a freaky itching cleansing?episode in the middle of it) I feel in general that I am finally getting somewhere although i know all along things were happening that I just couldn't feel or see. So, it can be exponential at a certain point. It is hard to not compare yourself to other people- I do that and just feel so bad about myself and so worried. I remember reading about people going camping and I was like "Camping?!"
 
Amy- you are doing great. This is so hard no matter what. Keep going and try try try to take it one day at a time or one moment at a time if need be. Right now  you are keeping your head above water- I know that feeling- but in the midst of it- you are also living and giving your children and others an example of courage and perserverance and faith. ((((((((hugs))))))))))
 
 

Claire's picture
Claire

Hi Amy,
 
I could have written your post so many times.  It's such a familiar feeling that you express! This frustration is such a real part of coping with chronic illness and the exhaustion of just doing basic daily tasks makes it really hard to find much joy, especially when you're in pain or discomfort most of the time.  I always found that a good cry and conversation with someone who understands helped me deal with the feelings of discouragement.  The physical transformation is very slow and it's hard to have faith, but it's really the mental anguish that makes chronic pain unbearable. 
 
I've been in treatment with Matia for 1.5 years now and have had IC for about half my life.  Within the last month I have had several symptom-free days and am functioning normally most of the time now.  I never thought it would happen but I feel like I'm finally seeing some really big progress.  Sometimes I cry out of disbelief and relief that it's finally happening.  Please believe that it will happen for you, too.  Because it will, but it does take time. 
 
You will get used to the diet.  I have been eating this way for 3 years now and am on list 3.  At this point, I really don't even think about it anymore.  I get frustrated with the constant need to plan ahead and cook, but it has become second nature that this is how I eat.  I feel like I don't even notice foods outside of my "realm" anymore. 
 
Everyone is so different and it's hard to say when you'll notice big changes in your symptoms, but I really, truly believe that it will happen for you.  Hang in there, you're not alone! 
 
Claire

blondy's picture
blondy

I stayed in bed a lot during the first 6 months of treatment, then slowly energy level went up and up and up. There were times when I felt like energizer bunny, on top of the world and very capable, i.e., healphier then normal 'healthy' people. I am a little down in energy now, but it seems like I am going through cleansing process, so I HAVE to take naps during the day. Plan naps into your schedule if you can.
I hope you feel better soon. 4 months is not a long time, a lot of people see a shift toward better health around 6th month.

flygirlsam's picture
flygirlsam

I echo what everyone else has said. In the grand scheme, 4 months is really not very long at all and to think you are at list 3 already? Wow! Here's a thought from someone who has been in treatment over three years. Maybe go back and simplify the diet for a couple weeks and see if things stabilize a bit? I too moved through the lists very fast at first and I feel, ultimately, I wasn't actually ready and it kept me from progressing and actually set me back a bit and my imbalance crept in again. I know it's so hard, believe me. After being on list 3 and a few things from 4, for over a year, it was devastating to go back to list 2. But in the end, I maybe should not have been on list 3 so soon to begin with. Talk with Dr. B of course. And hang in there. You are already noticing improvements and that is what matters most. 
 

amybarbara's picture
amybarbara

Everyone for your words of encouragement!!!!! I really needed to hear those voices because even the support of my family & I know that in itself makes me very lucky but they still can't understand what I'm really going through:( I've often thought that if I had cancer & was going through treatment & fighting the way that I am, I would have people knocking down my door to support & help me!!!! I know it's early on so I WILL keep pressing ahead & try to smile as often as I can. Thank you Thank you:)))
Amy

deir's picture
deir

It has been difficult for me to deal with the lack of understanding. IN the beginning of my treatment, I told those cloest to me  to check out this website and read her stuff so they would see what I am experiencing. ONly one of my friends/family did that and she has provento be one of my best friends and supporters. I really value her. It can be hard to ask people for help and I wish i had done that more so that people could have stepped up.

amybarbara's picture
amybarbara

Ally:))))
you gave me a huge smile:)))) I needed that!