Need some advice please

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Dear all,

 

I am writing to ask for some advice from fellow travellers. I am seven months into treatment and have noticed some small changes. Things are slowly improving - I had and still have what seemed like a million symptoms, which were impossible to distinguish from one another but I can feel my whole body slowly moving back to normality (although I am a VERY long way from that). However, my most troublesome symptom, which has been there from the start, is the severe head pain/pressure. It's not linked to die-off or anything like that. It is continuous and constant - it has been there for a year and never lets up. It keeps me mostly bedbound and unable to do much at all. I am unable to seek professional help, ie, therapy, because a) I would not be able to take anything in or act on it as I can't think, make decisions, reason, etc.. In other words, my thinking processes have gone!, and b) as a result of this pressure and pain, I can't talk very well, ie, it's hard to talk or read anything , etc. (so therapy is useless - typing on the computer is much easier!). Dr B says she's seen it before and it will go (:)) but in the meantime, I need some advice on how to handle this 'pain' on a constant basis. How do you get through the days if you can't get any professional advice, etc.? I am hoping to start going once I feel well enough but the couple of sessions I tried proved useless for the reasons outlined above. I really need some suggestions on how to keep going until I can get to the point where I can seek therapy. What works for you? It's such a strange thing to be going through - all my thought processes have been wiped out as it were - I can do stuff but my head is constantly full of pressure, inflammation and other odd sensations. It really does feel as if I am in a very, very bad physical fog - weird (and try explaining to people that you have a bladder disease!!). Any advice on moving froward on a daily basis very much appreciated.

DLFox123's picture
DLFox123

Dear Vin,
I'm sorry that you're in this hard stretch.  You sound so calm for all that you're going though.  While my head pressure wasn't to the degree of yours, there were times that I found it excruciating.  I don't know if matia would have approved, but I used a small vibrator all over my head-giving it a massage.  I also put two tennis balls in a bgsock, side by side, and put it under my neck - the pressure on the spot where the neck meets the head seemed to help.
Getting by on a daily basis sometimes isn't easy.  I spent last night in the ER - with a severe anxiety attack.  I ended up getting two tranzquilzer shots - not lookinre forward to telling Matia about it.
 
I'll hang in if you do : )

flygirlsam's picture
flygirlsam

Sending massive hugs and healing energy your way. I'm so sorry for your struggle. I really think going with your guy is smart and this too will pass! Hang in there. 

DLFox123's picture
DLFox123

Your kind worst help.
Hope that you're doing well?

DLFox123's picture
DLFox123

I meant to type your kind words help! No worst - I'm sorry

Vin43's picture
Vin43

Denise,
 
That'a a deal - and I'll race you! Whichever one gets there first buys the metaphorical drinks!!  I do actually feel calm, believe it or not, despite the super weird head pressure/whatever it is! My vision has changed as well - for the whole year now! -  the whole thing is far too freaky for me! It's the getting by on a daily basis that's hard - the daily trudge through the pain - but we all know that there's no other way so we just need to keep going. You can imagine how useful the urologists (even the neurologist) were when I presented with my head inflammation :)
Really sorry to hear about your anxiety. This type of pain can't be any easier than the physical. I know that everyone would dearly love to swap their symptoms - I'd swap mine for anything else! - but you have had many changes - I've read about them - so this part of you will eventually respond too. You will get there - it will take time but you and I (and the others) will get there because many, many others have. That's all there is to it. I just need to know what strategies people use to get by daily - I'm locked into my symptoms on a minute-by-minute basis. Thanks for responding Denise - you're always there with a wise perspective on the situation, and I hope you know how much that's appreciated. 

Vin43's picture
Vin43

Denise, I also wanted to mention that when I was in remission from the IC for many years (I didn't even know that I had it), I felt completely well in every way. I think this is why this whole thing has been such a shock to me, and so life changing - I never had any health problems at all in all those years. No build up or warnings at all. Never went to the doctor. Importantly, I was always known as the 'steady stick' at work and among my family - the rational, calm and sensible one. The point I am making is that once you get well, you'll feel like that too. Once the physical and the emotional are balanced, you will feel completely well and you won't have this anxiety plaguing you. You will feel healthy, calm and in control. I know because I've felt it. Your anxiety is the disease and not anythng else. It will go. 

Mrs. A's picture
Mrs. A

praying for you all. You are all such brave women who I believe will get better and better. I just wish this process wasn't so terribly difficult. A big hug and lots of love and prayers sent to you dears.

DLFox123's picture
DLFox123

Thank you for taking the time to write that one day the anxiety will end.  You have no idea what those thoughts and kindness mean to me.
Hugs to you and everyone,