Tue, 08/19/2008 - 17:27
I don't realy know where this goes but I feel like I need to get this off my chest and theres just no other place I can talk about what is going on with me.
I get this skin crawling in my head it's really driving me nuts and tightness all over to the point where my head is soar to the touch.No matter how much sleep I seem to get I can't keep my eyes open. It's invading my life to the point of not going out. I am so anxious and I have never experienced anything to this degree. I got myself a bike for inside to try to see if it helps but I haven't got the strenght to do it very often. All I want to do is close my eyes and when I do my heart gets all racy and my brain doesn't shut down so I force myself to do things to occupy my brain on other things.It's exausting I don't know how to cope with this. Has anyone experienced any of this. My friends and family want me to go on Paxil they don't understand what I am doing. I am sweating for no reason so I am sure some of this is hormonal but it's driving me insane. I am screaming to get out and then I just cry sometimes. I wish it were as easy as to take some pill but for me I feel taking western meds helped get me to my IC state in the first place. I know this all takes time but it's been hard to just hang in there. I would like to hear about any of you pulling through anything simalar.
Nicole
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Wed, 08/27/2008 - 17:17
#1
Craziness
Hey, don't feel like you are the only one. I have had so many funky feelings, it makes me wacky, but then, I catch myself laughing at myself because this stupid disease is so funky. Whenever I have something random happen to me, I joke now that it must be the IC. I have had almost everything you have described. The most annoying thing I had next to the bladder symptoms is numbness in my arm/leg. It makes me nuts because at times, I couldn't even open a jar. I seriously thought I had MS. Then I looked up Restless Leg Syndrome, it is almost identical to what I described. I bet those poor people have some version of IC and don't even know it. Before I was diagnosed with IC, I went on Paxil. DONT DO IT! That stuff was WEIRD. It made me feel mentally numb and you do not need that. I would rather feel feelings good or bad then just feel apathetic. Feelings make you fight. That junk may work against your fight. One exercise I really enjoy is pilates. I don't do crazy stuff, just basics and it really actually helps my bladder. I think those muscles become so jacked up that they need rehab because they become so weak. You have to do what works and feels good to you though. I can do things like the elliptical trainer and spin class, but jogging is not so good. The weird thing though is swimming has been the best for me and after I swim, I temporarily regain bladder control. Again, that takes a lot of core strength to swim and a lot of core strength fails when that whole area is constantly inflamed.
Hang in there. Try and get some sleep. I found that lack of sleep or exhaustion really exacerbated that creepy crawly feeling.
Jeanette
Wed, 08/20/2008 - 08:10
#3
Nicole
A few months back and now still somtimes randomly I too get a tingly skin crawling feeling on my head! I didn't think it was IC related- I thought it was my crown chakra awakening-LOL! It hasn't been really painful just a werid distracting sensation-but I know of and am familiar with e so many werid and diverse syntomns that come with IC and dieoff. Just yesterday I was feeling really yucky but 2 days before I felt good.??? When you feel like you are losing it-like really about to go crazy remember that you are in treatment and eventually with good care this will end.Focus on that.
I keep in mind that when I'm feeling really bad mentally/physically its actually means something is getting killed off- and its not happy about it! In time I think the anxiety will lessen. my nervous system right now feels really stretched out and weak. I feel raw and quick to anger.Got to work on that some- I haven't been doing all the things that can help me feel more calm. IC really challenges me to make the best changes for me in the long run. It forces me to take the best care of myself possible. Tell yourself that you will not be beaten by this condition!
When I feel crazy I just take a deep breath and exhale all my fear and refocus on the reality that I am getting better. It's true. All this insanity is for something worthwhile. The manefestaions of my good care have not bloomed yet but the foundation is being laid. It is all for something. When you don't see that positive payoff right away it can be really really hard! Sometimes it seems like we have to renew our determination/faith that we are getting better. This is important- because we can get caught up in cyclical thoughts of fear and this is not helpful and stressful! Hormonal imablence is no joke! Take a deep breath- and exhale let all the stress go! Know that you are moving forward even if it doesn't feel like it just yet. Try to create a safe and healing space in your home/in your mind to retreat to. we have all had and are having some seroiusly crazy aggravating syntomns that are relentless- not sure what phase of treatment you are in but I know that as I go through these cleansing stages I should expect anything. Sometimes in the course of one day i go from feeling okay to bad to almost good! However even though I am feeling syyntomns that are really intense somewhow I am getting better at dealing with each chaotic sensation. Not sure how that is possible but it is true. I would try exploring some natural methods of relaxation to control anxiety. -non herbal/ pharmacuetical .I have found mediditation (will write about it soon.) gentle walking and very gentle yoga poses -(check with Matia first about the yoga!) to help me control bouts of anxiety.Also to get my mind off things I do little crafty things- channel my restlessness into creative things-I have a healing journal in which I document my small victories and draw my body as healthy and write tons of affirmations-google Louise Hay!, make healing art. I am sorry you are going through this chaos! sending you peaceful/healing thoughts/energies that this passes and you feel better soon!
-Mary
Wed, 08/20/2008 - 19:00
#4
Thank you Mary I will check
Thank you Mary I will check out Louise Hay. It's always nice to hear words of encouragement. I know I need it. I saw Matia a few yrs ago and stopped treatment for various reasons one of which I felt we had hit a wall for a while and I decided to dr myself. I have been doing so much research on herbs of all kinds, reading Chinese med text books and ayurveda as well. I was doing well for a while my pain was almost gone and I decided to open my own Day spa I am a skin care specialist. I bought a 1925 home in the village of the arts located in downtown bradenton. Well I had no idea the amount of stress I was headed for and it felt like everything i have done has been undone. My anxiety issues became stronger then ever and my hormones were also never right. The only thing that seemed to get better is I finally know when I am getting my period. I sweat like a crazy for no reason in the AC and my mood is all over the place. I can't stand the heat it feels like I am in an oven all the time. When I started to try to treat myself it became all too much. THe spa my illness, my hormones. Now I Am a wreck but I am having a very hard time with the fact that I have given this to Matia to deal with. I have been doing it for so long that I am in the habbit. My friend told me today that I need to get rid of all my medical books at least till I get stable that is a whole room just to give you a picture. This idea is hard for me. She told me to get some novels so I can leave my head. SHe is so right it's exactly what I need to do. The meditation is good I have already been doing that but I have a hard time applying it when I am not listing to my guide. I have some CD's that help me escape but I am not there quite yet.
Yoga has always been good for me as long as I do it. I haven't been very good at keeping it up. I need to work on some good habits. One good thing I did was take a vacation from my TV. I have had it off for a month it feels great too. I still watch a movie once in a while but I think right now books might be better for me.
I have only been back in treatment 3 weeks now so it's really hard even though I have been down this road before. I know I have been out of pain even if It was only a few weeks. I try to recall what that was like and tell myself it will happen again. Thank you Mary for your encouraging words. It helps me gain faith to that I will be fine and this too shall pass.
Jeanette,
Thanks again for being so supportive. The pool sounds great actually living here in FL sometimes I feel like I am in the wrong enviorment. Matia explained a lot of my head issues are liver and those darn yeasties. I know I have a lot of clearing to do it can be draining. Every time my cycle starts I get even worse too and here I am back dealing with those out of wack hormones.
I wouldn't ever do the paxil route but it's nice to have someone back me up besides Matia that it's not the right thing to do.I know it would just undo everything Matia and I have worked so hard to do to heal my body.
I can battle my pain but my head seems to be where I fall appart. My bladder pain isn't that bad anymore. I have more fibro and head stuff. Its my head that really drives me insane. Matia always reasures me that I am getting better and that I will pull through this. It's those weekly conversations and the support i get in this board that keep me strong. I really don't feel that strong though.I try to think back to the times I did feel good even though it was short lived it is obtainable and that is really what keeps me going.
I know I will get past this just like I got through much of my bladder pain but I will need to write out my feelings here so I don't go talking to myself all the time. My husband and my sister are my ONLY friends now. All my firends have left me. They can not handle the fact that I can't seem to leave my house right now and they don't want to come see me. They don't even call me anymore so if I seem to write in here a lot it's because this is all I feel I have.
One could go insane if they feel like all they do is talk to themselves all day long. I swear if it weren't for my consults sometimes I would go days with out talking to anyone. You know when you don't leave the house theres not a whole lot to talk about either.
I am trying to dive back into my skin care work to discrat my mind but the headaces numbness ect seem to be too distracting most of the time.
As i sit here and type I think about getting myself one of those easy set pools.
Thanks Jeanette for being there and everyone else for listing to me.
looking for Floridians