Sharing one's heart and mind is so important to everything in life. What would we do without other people to hear us, to witness us, to look at us for who we are. And certainly, empathy is something that is a two way street. It makes us feel so wonderful when we receive it and likewise to offer it as a gift.
In our darkest moments it is good to know there is someone there to listen.
This website is a great resource for some small percentage of people who use it to share those aspects of IC that other people in your lives may be unable to do, no matter how much they would like to. But, try to remember, for every one negative thought or expression, to think of something positive to go along with it. This will keep your heart light lit and your picture of hope colorful. The energy that one surronds his or herself by becomes that person and the others in their proximity.
Through the years many of my patients have come to me saying that the intensity of this site is too much for them and so they go away--becuase it filled thme with anxiety and doubt and they were themselves struggling to be strong. Someone said this to me today. She said although she feels " a million times better than when she started", when she feels unwell and reads some of the sentiments here, it is just too much, because then she feels doubtful and dark.
I am not suggesting that any of you edit your feelings. I am just putting this out there for you to know. When people ask me why this is so hard, I always say--at least there are options and solutions that are working, albeit slowly. When I first started treating this condition-there was no such treatment available, which, is what turned me to do my entire doctorl thesis on this subject.
I remember my first Ph.D. committee had one different member first time around, and we had to ask her to step down because after my first presentation of my work to the committee, she looked at me with a very strong tone and told me it was completely ridiculous and I should pick a different subject and start over. One of my other committee members took all of her reasons and reduced them to crumbs. We replaced her the following week.
This is a long-term approach that is less of a treatment than it is a complete life-style change. It is a door that opens you to a different way of thinking and invites you to change how your body is funcitoning and balancing itself. It takes constant attention and alot of interaction between the person and the person "giving treatment". It is not a "quick fix".
Things change in the body slowly as the body slowly is able to regain its balance and well-being. By the time IC and vulvadynia and fibro etc... hits, the body is in quite a state of imbalance and distress. So, it does take time for that to change. It is not a static process, it is a very dynamic process.
So hold on to things that you know are changing so you can track change--are you able to eat things that you couldn't before without them causing symptoms? Are the number of hours in the day that you were experiencing symptoms less? Is the intensity of the pain you are experiencing diminishing-are the ups more up and the downs less down? Are you periods less tumultuous? Is your mind more clear? Hold on to these changes-they are concrete clues that your body gives you to let you know that things are shifting.
In life when I have suffered, I try remind myself that life is about change, and as long as I can get up on my own two feet-there is a lot that I can do to become involved with the change that is necessary for me to make happen. It can be difficult- but it can happen.
Dr.M
Comments
Thank you so much for this
Thank you so much for this post, I completely agree. Even if we need to vent we should also talk about the positive things that are happening. Some of the posts are only negative, but I know that most everyone has experienced some improvement. I like when people post what they are going through both negative and positive combined in the same post.
When I read other posts I can see that I am not crazy, and that other patients are going through the same thing. I feel good knowing that it is normal to go through these things. And it is nice to see when those people get through those things, and then they post updates that they are doing better.
I think sometimes when we are hurting we only focus on the negative and forget the positive. But we can't forget, that is what will keep us going. There are so many things that have got better for me, like for example I can have tomatoes again. I haven't eaten them for years. I am so happy for that, it is so exciting for me. I can make so many different recipes with tomatoes. There are so many things that have gotten better to be positive, and happy about.
I am so glad that you stayed strong and didn't listen to people that called it ridiculous. You seriously, are exactly what I asked for in my prayers. I am so thankful for people like you who do not give up, and do what they believe in. It inspires me to be the same way, and not let others bring me down.
Thank you for all that you do, and all that you share with us. All of your posts are so very very helpful to me.
Keeping It Real
I, too, appreciate the daily posts and find myself looking at this site at the end of the day. As someone who just started the diet a week ago, I notice that at the end of the day, my doubt creeps in. This takes the form of questioning myself about the diet and wondering whether other people do it eaxctly perfectly and what it means to my recovery if I eat more than 1/3 starch at a meal or not enough veggetables in a given instance. Temptation abounds- today at work it was my daughter's chocolate birthday cake- which I passed up- but I am wondering whether I should feel guilty because I broke down and ate some dried persimmons-which may not be ok but I am still having hard core sugar cravings. I ask myself, do others really do this diet perfectly?
At the same time, earlier today, I found myself thinking that it is easier this week. I am over the "shock of the diet"- I was literally keeping myself up at night thinking there was no way that I was going to be able to do it and then Dr. B said I could start out on List 3 and I nearly burst into tears. The last couple of days I have fallen off keeping a daily journal but I think i need to keep that up. In running a business I have learned that there is a big difference between my subjective feeling about a financial issue and what the hard numbers actually reveal. I am sure it is the same here. Data is objective whereas moods or future predictions about whether this is going to work are not. I would appreciate any responses people may have. I apprecaite the posts so much. They are a lifeline.
On the positive side of the balance sheet, I feel so lucky that someone had the ability and tenacity to figure this out!
Bonnie- I keep a journal. At
Bonnie- I keep a journal. At the end of the day, in the top corner I put a B,M,OK,G which stands for Bad, Medium, Ok, Good. Periodically I make a little tally sheet which really helps put my progress in perspective. For me, the symptoms are still so up and down and when I have even one bad day I have a hard time remembering the good.(and vice versa) So the concrete tally really helps. I can see the improvement in the past few months no matter what my bad day crazy mind may be thinking!
Another positive note- I think I need a new category: VG- for Very Good!
Very Good!
Hey Deir - I love your awesome new category! I keep a tally too which helps me see objectively how I'm doing. Really helps!
ps
if anyone's interested, since november my VG days have gone from 3 to 7 (december) 9 (january) and 10 (feb)!
diary
i do the same, its a great way of tracking progress... i have a day & night score & faces ..early days were 10/10 :-((( for both.. now 18months day is 0/10 and :-)))))
nights are now 2 occassionally 3/10. ;-0
and from past mistakes i,ve learnt to keep filling in the good days as well as bad so i can see any patterns developing that led me to have bad ones again...and i underline any new symptoms i want to discuss with matia.. it has helped me enormously and would recommend it to everyone.
love to all. x