The Disease That Won't Let me Sleep.
I am writing this at 5am.
I have been trying to sleep for the past 5 hours.
I can't. I cant because of this hellish bladder disease. Every time I lay down the extreme pain and burning starts up. I go to the bathroom, strain, hyperventilate, squeeze a few burning shards from my vagina and walk in a daze back to my room where I curl up and try again to sleep. Only about 5 minutes later the same pain begins again. "Just ignore it and sleep, just ignore it and sleep" but that doesn't work. Now the pain is intensifying, the urge to urinate so strong that it feels like I haven't peed in 8 hours even though it's been 5 minutes. Again, to the bathroom. Burning. Drops. Back to bed.
This went on for 5 hours tonight before finally I went back to bed and starting sobbing. My roommate had jokingly said "go to bed!" when he saw me up again and I don't know why but that added to everything and I was sobbing in bed thinking "I am trying!" I just lost it because I am so, so tired and all I want is to sleep right now. My roommate could hear me sobbing from his room and came to comfort me.
I decided to get up right now, since I can't sleep, and write this all down. To give people a really hard look at what this disease does. Not only during every minute of every day but also at night so that I never actually get a full night of rest which adds to my abundance of mental health issues some of which have stemmed from having this debilitating disease for almost 2 years now.
Many doctors don't know much about IC and there aren't really great treatments. The only drug for it is only effective on 30% of people. All of this can seem really bleak and overwhelming sometimes, especially when every minute of every day is suffering and I haven't had a full night sleep in so long.
I am 29 and have felt like this since I was 27. This is no life for a young woman.
I haven't had sex in over a year aside from a few failed attempts where the pain proved too bad. I can't leave my home hardly. I can't date anymore. I can't be active like I used to be. I have to just sit in this room thinking about this god damn pain wishing I could sleep for just a few hours so I could get a moment of rest. I am a shell of the person I used to be. Vibrant. Strong. Active. In nature. Doing yoga. I can't do these things. So many things were stripped from me. The things that helped me heal and kept me sane. Many of the foods that I ate I can no longer eat. No tomatoes. No fruits. No coffee. I try and fail because without medication and medical guidance I never get relief at home.
It IS this bad and the fact that you overcame some other unrelated illness has nothing to do with my disease. Not even other people with IC may get what I am experiencing because there is very mild and very extreme cases. I used to have a mild case until the stress of losing my best friend flared me up. The flare never went away. A few years ago I would have had NO IDEA what this type of suffering can do to a person. And not understanding is fine so long as people don't act like they do or pretend the disease doesn't exist because they haven't heard of it.
I know that was a semi-unrelated rant but the isolation, misconception, and callousness I receive on top of battling the pain really does add to the overall level of torment.
Well, thanks for listening Steemit and sorry my first blog of the day is so dark. I just had to get it out and this was more productive than crying and there's always the chance some desperate person like I was years ago will stumble on this blog and have a small piece of the puzzle they need to get on the right path for healing.
So, for tonight all I can do is stop trying to sleep and wait until eventually my body gets so exhausted it can't possibly stay awake any longer. Unfortunately, this is exactly how the majority of my nights play out.
I am still fighting. It is a long war but I won't stand down.
I have my urology consultation on the 12th but may have to switch urologists. I know of a female one that has been dealing with a friend I know who also has IC and she has tremendously improved her life. I will keep updating you guys along the way of this long, tedious, rocky journey.
Oh gosh that sounds horrible. I hope you get some sleep soon and you find a way to lessen your disease some day soon!
I searched for quick relief for almost 2 years and now I guess I hit the "acceptance" phase. Except sometimes I lose it like this morning. :) I am definitely fighting though! Just keeping expectations in line with reality.
It must be so frustrating and you must feel hopeless sometimes. I do hope you can switch to the lady who worked so well for your friend!
Nothing like a good rant sometimes :-)
Yes I am lucky to know about that doctor and it gives me much hope!! She said the woman made her pain tolerable and it has been for years but she did say the appts are very spaced out so its hard to get in. I have been waiting almost 3 months to see this male urologist so I am going to try and see if he can do a cystoscopy and ask if he knows about IC. Thanks a lot.
Oh wow, I feel for you. Inability to sleep is torturous on a good day, let alone when combined with pain! I've had really simple, obvious health problems for several years and I feel like my twenties were stolen from me all because no doctor thought to check my bloodwork and diagnose me until a few months ago. Obviously it's not the same situation as yours, but I'm imagining my frustration and exhaustion amplified and I don't know that I'd still be able to get up and carry on the way you have. [Place here: words of encouragement, that come from the heart, and that don't sound trite.]
Thank you. <3 Hey man, I have someone else telling me I need to take responsibility and heal myself so trust me you aren't coming off trite. hehe You come off genuine and are not assuming anything. I don't always carry on well but I am trying be strong. :) So glad you finally got diagnosed!
@lauralemons I am very sorry to hear your condition. I can only wish that your treatment yields results at the earliest and that you become completely healthy like you were 2 years before.
I am at a loss of words here. but share your pain.
All I could wish you now is a speedy recovery and a joyful life ahead. and all I could remember now is my all time favorite phrase is "THIS TOO SHALL PASS"
Have faith. you will be fine soon. God Bless You.
Really sorry for what you're going through... I know that a good rant does seem to help, if only psychologically...
Have you looked into doing a cranberry juice fast? Not that sugary crap kind of juice, but pure cranberry juice...
My wife used to get horrible bladder infections and doing the juice fastings, seems to have cleared it up, in a permanent way...
Just trying to help. Looking forward to reading how you've beaten this, one day!
Keep Strong! :)
Must be terrible for you but please just stay focused. I believe this trauma will be over for you some day.
Just take care.
Thank you. I think eventually I will beat it too. :)
Of course you will.
A suggestion that may not be optimal... I am not a doctor.
Might insertion of a catheter provide relief?
I am truly sorry for your ordeal. Urinary and other regularly used muscles are really tough to have issues with as the healing is very slow and very painful...
Might you be able to go to an emergency ward? Or maybe see your doctor and ask if catheter relief might be an option?
I am unclear as to why its painful... but its such a personal issue that I feel uncomfortable asking.
No a catheter will not help. I had one in the ER for awhile. I need to try meds and possibly get surgery. I won't have full on answers until I get someone to get their tiny camera inside my bladder and look around. :) Hopefully soon!! Thanks for the suggestions. I have everything lined up medical wise so really just wanted to talk about what it's like not get answers but your suggestion made sense to ask.
Thank you kindly for clarifying :c)
The suggestion is inspired by the thought that contact between urine and tissues might be complicating the healing process. And that the pain might be due to inflamed tissues being very raw to the acidic passings. Also... a catheter might let you empty your bladder fully and therefore reduce your need to go to the bathroom.
Actually... there is more to the 'inspiration' than that. I remember the painful and protracted period of healing following a hemorrhoidectomy conducted some years back. It was hell and I gather that it wasn't as bad as what you're experiencing.
A hospital won't do much for me now because I don't have a diagnosis yet but I haven't really heard of people with IC having catheters. Generally meds or surgery. We will see what they say when they finally check me out thoroughly. Thanks again. :) I do have issues with voiding but for now it's just needing that dang cystoscopy and official diagnosis. So far I only have ruled many things out and gotten educated opinions from professionals. Can't move forward until they open me up and stick a camera up in there. I think they have to fill my bladder up too. :'( I hear it's really painful and causes bad flares for IC people. haha But hopefully it'll lead to relief. :)
Well here's hoping for a full recovery at the earliest time possible!
I have no more meaningful suggestions at this time. Good luck!
Thanks. :) I have hope because I met a girl near me who suffered like me for years and finally has relief from this great female urologist. So, I am going to try to see her if I don't get a good vibe from the male doctor. fingers crossed
I don't suppose its a viable possibility to skip to the female urologist to begin with? :c) I guess the doctor needs to refer you to her?
I've been waiting for this appointment for a very long time and I hear the female dr's appts are way spaced out too and I want to get diagnosed asap so I will just give him the benefit of the doubt since the consultation is only 12 days away now. :)
I'm going to call her asap too though.
Hi dear,
well, first of all I feel with you. Nevertheless, the human body has excellent and the best repair system on the planet.
All will be good if you think about some inputs.
So I have a lot of advises I would like to share with you but for me one of the most important is if you are interested in getting well, or you like to stay in a kind of confort zone and get attention instead of taking the full responsibility for your life, health an wealth, for your successes and the meaning of your limitied time on this beautiful planet.
The mental prison we are all set by OURSELFS must be recognized and accepted. Only then we can start to setup new horizonts, learn from every second we live and appreciate the miracle of life.
So don't bother, make a decision and stand up to heal yourself.
If you need my help, I'll continue, but once again, unlock your illimited potential by being YOURSELF ! And not a SYMPTOM, an illness, insomnia or IC...
Sorry to be so honest, you can call me an a--hole however you can beleive me I've been through a lot of this stuff and I'm not talking, or better say writing bs.
Just reply if interested.
Yeah....some diseases need medical care. I don't think you are an asshole but I don't find this helpful and only damaging to creating real awareness for diseases. Glad you feel healthy though.
Sorry that you see it like that. And being healty is my BIRTHRIGHT ! I stand here and acclaim it every day if needed.
You can't know that my daughter had also IC. Gone in 2 weeks...
I will continue to post on my blog, maybe you find sth. interesting for you.
Anyway I like your posts, I follow you already and I saw that you are somebody special. Thumbs up and good luck.
I partially agree with you, in that if we resign our minds to being sick, we will stay sick. That's a mental attitude.
But biology is physical. Many diseases cannot simply be "cured" by positive thinking, or by denying it exists in the first place.
What you said is exactly why people with unseen illnesses have so much trouble in the world.
For example, a person with fused vertebrae can't heal himself no matter how much he "takes responsibility for his life" or "appreciates the miracle of life." The nerves in his spine will continue to cause constant pain unless some outside force negates that pain. Positive thinking isn't going to cut it.
A broken leg will heal itself without the "mds [who are] payed for medicin they prescribe" but it will heal crookedly and could cause irreparable damage.
Ah, but you can see a broken leg - it will look twisted or swollen. So is that the excuse one needs to get professional help? Internal diseases are just as, if not more debilitating than a simple broken bone. But there is no twisted limb or swollen joint. Does that mean it doesn't exist?
"Make a decision and stand up to heal yoursef." That is exactly what she is doing by going to a specialist.
@lauralemons I hope you find some relief soon. Stay strong - we're all rooting for you!!
I'm so sorry your in so much pain. That sound like torment and torture go through. I pray for your relief from the pain. That so sucks. You're a good lady. Keep doing what. You can. Your story is worth sharing.
Thank you! At least I have the appts set up now and the medicaid. It's a step.
Well, I'll keep praying for you too... I know that has got to be hard. I heard lemons help? But, I don't know. I'd just read and read and read if I was you and not believe everything the doctors say, I'd look up holistic healing and take warm baths and find a hot tub to soak into... When I went through something painful, I couldn't sleep unless I was in a tub with running water. A sits bath... but, then I would wake up fearing that I could drown.
I am so sorry to hear about all this pain you have to go through. Is surgery at all an option in a situation like this?
In some cases. They usually try meds first but I still need to just get the consultation and then hopefully cystoscopy. :>
Right. But I presume they have tried a few things over the last two years.
I have been suffering for two years I didnt have medical in FL. I only am just starting the process of getting help.
Oh, that sucks.
Sorry to hear that. So Obamacare wasn't an option? I keep hearing of how useless it is - basically, seems like as soon as anything serious comes up, you hardly have a specialist to go through and help is really not available.
Yeah I was having tons of trouble getting any help in FL. MN is way, way better for me while healing. Heck FL for sick poor people.
I wonder if you should see what's available to you in and around Boston. MGH/BWH and a fewe other hospitals are really at the cutting edge in many areas.
I'm in MN. Definitely not relocating again, not that it's really an option. haha I just spend thousands to relocate and get medicaid here. XD
(in FL the test to get diagnosed would have run like $10,000 without insurance and I can't work a normal job. That is why I am now in MN) :)
Yup, sounds like one more case where the whole Obamacare thing ends up being completely useless.
Here in MA I keep hearing that even those insured often find themselves in situations where, say, a specialist they need is 60 miles away and available no sooner than in several months - which in some situations is as good as not available at all.
I am happy you found coverage in MN. Best of luck!
So sorry to hear about your struggles. Suffering with an invisible disability makes things so much harder.