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Dear all,
I have to say that I am really struggling mentally with this condition, and am hoping that someone can offer some light for me to get my head around. The more I read about it (this website mainly), the more I see that other conditions are common co-occurrences - muscular pain, back pain, scoliosis, chornic fatigue, anxiety, central nervous system agitation, depression, etc. etc.. It just seems never-ending. It seems so enormous and I can't get my head around it. I don't know how to make sense of this dis-ease. For a long time (when I had this previously), it was just about the bladder for me - the rest of me was fine. Now, I have muscle and joint aches, upper back pain, etc. etc.. What else is going to be added to this mix? How can I ever go into the future and raise my young family when this condition is just so enormous. It wasn't meant to be this way. PLease help me find a way to think about it and live with it while undergoing treatment.
Hi Vin, I am right there with
Hi Vin, I am right there with you. Up until last June, when I added some heart issues (which have gotten MUCH better;) I had nothing else besides my bladder. (Sounds so funny to say "just" because that in and of itself, is enough). I am in my sixth month of treatment now and I have had other issues with back pain, scalp stuff, tooth ache and other "die off" symptoms BUT because each of our cases are individual, it certainly does not mean we will develop IBS or Chronic Fatigue.
Mentally, this is totally overwhelming. I know... especially with little ones. The best advice I have gotten has come from some of the lovely ladies further ahead in treatment that have made it through with great results!... one day at a time. Easier said than done, but the good news is that we have this site to keep up connected and support each other. We can do this.
Katie
Vin, the other conditions
Vin, the other conditions do calm down as time goes by, with treatment of course. Although not perfect, hopefully, you will be totally functional to run around and take care of your kids. It is a daily challenge, but nothing close to being bed ridden. I address my depression with a counselor. Without her, I don't know where it would take me. It could look like too much to carry on if you are in it by yourself. Good thing is that you have Dr B for now. As your treatment progresses, you will start reclaiming your old strength back and things will turn to the brighter side.
I do recommend a professional counselor to help to sort things out. You are deep into philosophical path worrying things that may be not directly relevant to you. I was doing the same but things settled now. I hope they will settle for you, too.
Thanks everyone. My whole
Thanks everyone. My whole body feels different - I feel different. It's not 'die-off' - I just don't feel 'right' or 'myself'. My perception is different; I physically 'see' things differently when I look at them. It's not just the case of an inflamed bladder in otherwise 'me'. It's actually that the whole of me, my body, is very different and does not feel 'right'. My essence/persona seems to be separat from my body, in which I don't feel comfortable anymore. Have others experienced this at all or is this just my symptoms? I don't 'feel' depressed - however, is what I've just described depression? I really don't feel depressed - I am anxious and emotional but have a desparate need to get well, take an interest in my kids, house, etc.. I just don't think that I could sit through, say, a school concert (I don't have frequency!) because I can't seem to be able to concentrate or look at it/partake in it normaly anymore. Is this familiar to anyone?
Struggling
Yes, this is all very familiar. I've had IC for a number of years. It was hard to go to any events my two boys were in at school. I just put my best foot forward and went anyhow. IC isn't just a bladder disease; it affects the entire body. Some of your symptoms right now might be from the cleanse if Matia has you on one. Some of the cleanses make me feel very achy and anxious. Living with any chronic ailment is a challenge. This disease doesn't make sense. I keep very careful notes and have never found a pattern to it. Just do the best you can each day and try not to worry about the future or it will overwhelm you. Life is much more manageable when you take one day at a time.
Thanks Clueless. You've been
Thanks Clueless. You've been a member a while - are you getting better?
Struggling
Sort of. Some things are and some things aren't. At least I haven't had to go on any of the heavy drugs they use for this condition.
Clueless...
Yes, you're right about the heavy meds.. Why do you think it's taking so long for you to heal? Are there specific reasons, do you think?
Struggling
No idea. Maybe because I had it for so long before I found Matia. Mine went undiagnosed for about 20 years. By then, I had quite a number of additional health problems that goes with the condition.
Vin- Oh my- I think we are
Vin-
Oh my- I think we are alot alike. I can just say I understand where you are coming from. But I want you to know that I am doing so much better than I was- mentally (even if I did have a near meltdown right before Christmas!)Most days I am doing just fine.
I can't tell you what to do but I will tell you what has helped me. I can NOT look too far ahead. ONe day t a time is not just a cliche it is necessity. I started going to AcoA (Adult CHild of Alcoholics) and Al- Anon and the 12 step model is helping so so much withthe panic feelings i get sometimes. I alsohave to be compassionate to myself and not judge my strong feelings. I often wish I could "handle" this better and that adds to the mental struggle.It helps me to identify exactly what i am feeling because sometimes it is so overwhelming. I find if I break it down into little pieces, I do better. I also do better when I stop fighting against the feelings and just be with it. This is VERY difficult when taking care of little kids- I guess it would be the same for any high stress job but I feel that IC and full time mothering are particularly difficult. I need to focus just on the day (and not think,"oh my god this is it- I am doomed)so if I am feling particulary fearful- I make sure I get a walk (can't do much else in the way of exercise- I am a professional choreographer, dance teacher aerobics etc so this is tough)or I go to an Al-Anon meeting. The serenity prayer helps me so much. SO if that gets me through a few rough hours- great!! I usually feel better in some way later or the next day so why I am worrired about the future? Just get through now.
I've tried to stop thinking I need to feel mentally better NOW and if I don't I will have a horrible life. Intead I focus on the moment I am in right now whenever possible. Call a friend, get outside, play in a focused way with my sweet daughter,meditate or pray whatever helps me at the moment. AFter all life is made up of lots of little moments not just swaths of time.
The other thing I am trying to do is LIVE NOW!! I think I was stuck in the feeling of "when I am better we can...' or "IF I felt better I could...." So now I am thinking "what am I doing NOW" Sure I wish I was working in Theatre right now but I took a watercolor class that I never wold have had the time to take.
I went to a therapist and I didn't find it helped me but it could have been a bad fit or maybe it's just me. I find the group setting of al anon and acoa to be more helpful Of course- that may not apply to you! I hope it doesn't but if you do have alcoholism anywhere in your life- I find the meetings to be so rewarding.
THis is scary and it is really hard but we are strong people and Matia knows what she is doing. Also if you're like me- try not to tak on other people's issues. I have so much fear from reading awful things that do not apply to me at all!! Try to keep the spotllight on you and your recovery. I don't have IBS or CFS or really anythign else except bad PMS mood stuff so why am I worried about those other things. I don't wvwn think it is concious.
Take care (((((((hug)))))))
ALso wanted to add as far as
ALso wanted to add as far as taking care of the house goes what I do to avoid teh senses of overwhelming doom is say to myself even outloud sometimes- "every little bit helps" so if I am folding a few tablecloths- good- I am in action and working towards being as efficient as I can. Speaking of which- I have no right to be on this computer right now!! I have to get to work! LOL
Thanks everyone -
Some magical tips here. Thank you so much. I never thought it would be this hard. I am also vastly disappointed in myself for letting the anxiety get to me - I've always been the rock solid, steady one. Where did that person go? I just don't recognse myself anymore. I can't seem to draw on any internal resources. I guess it's up to each of us to find these. Thanks again everyone. Your posts got me through today.
That's me too!!!
That's me too!!! Progress...not perfection! You're still there. This is tough.