need some comfort

hi everyone.i have not been here for a little while due to being sick and in pain.i hope everyone is having a better day today.i am sitting here typing away with my usual lousy headache.i suffer chronic migranes and headaches,chronic bladder pain and ic,ibs,upper tummy pains and bad sinus facial pain.lets just say each day for me sux big time.

waiting on a long list to see an allergist which is about 15 months.tried everything for my migraines and headaches and have resigned myself to the fact that no one can help me.my intercystitis cystitis is a nightmare and often leads me to tears.i am having a drug put into my bladder for the next 28 weeks to see if it can calm my inflammed bladder down a bit.my bladder does not like cathiters and i will be peeing razor blades for the next 7 months.not looking forward to that.i am highly stressed out with 3 teenage kids and it does effect me with my health issues.i have trouble sleeping due to pain.i am on high amounts of codeine everyday but they don't really work.my body can't live without codeine.tried to get off 3 times and just about keeled over from the excruitating pain and always landed in hospital in meltdown mode.

i have no family support at home and i have not worked in 12 years which is making our life really difficult.i just need some comforting and supportive words.i am so lonely in my chronic pain.my hubby thinks i am making up all my chronic pain issues and health issues to get attention and so does my parents.they have all got to be joking.why would i make it all up just to get attention which i could get attention without bring chronic pain and illness into the conversation.

i am struggling so much each day and i am always depressed.i am trying not to whinge as much about my pain at home because my family is sick of me talking about it.i just hurt so bad all the time and i have been like this for over 25 years.i just wish someone would give me a hug and ask how i am.

(Hi Autumn - I hope you don't mind... I broke your post up into smaller paragraphs, just so I could read it better... some of us have problems w/ tracking longer posts. I want as many people to be able to read it and support you. Thanks). --Tina

Post Edited By Moderator (Momto8kids) : 4/16/2012 12:53:33 AM (GMT-6)

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Hi Autumn,

I'm glad you posted and reached out for support. It's really important to do that and let others try to carry you, when you can't do it yourself.

We may have different health/pain issues (well, I do get migraines - so I can definitely relate to that)... I can relate to many of your feelings and circumstances. Probably many here can.

Chronic pain can be very isolating - especially when you don't have a strong support system. And depression is linked hand-in-hand w/ CP many times. Just as a side note on that - have you ever used any medications to try to help w/ the depression? I would be in a deep, DARK hole w/out my anti-depressant.

Raising teenagers can absolutely affect (and cause) health issues! I have 3 teenagers and 1 "pre-teen". While my boys are pretty good kids - they definitely have their moments of moodiness.... trying to find their way in life... not to mention just all the things that kids deal w/ in this generation.

You say about being on high doses of codeine and that it's not really working. Do you have a doctor that might help you explore alternative medications? Many of us here are "dependent" on our narcotic meds... meaning our bodies would rebel if we just stopped. Are you saying that you want to get off these meds.... or just find something that works better?

Re: your family - I'm very sorry you don't have an understanding family... :( Has your husband ever gone w/ you to the doctor - and maybe your doctor can better explain things to him? Or is he unwilling to do this?

The only thing I can share, from my own experiences, is that there just are some people, who unless they've walked in your shoes, just won't or can't understand - and they usually try to pass off their lack of understanding by blaming the person ("she has to be faking it" or whatever). As painful as I know it is.... I would try to build a different type of support system.... be it w/ understanding friends.... or people here on the forum, etc. I know the wonderful friendships I've formed here on the board have gotten me through many bad days.

Many hugs to you, Autumn. Keep reaching out.... --Tina

thanks tina for reminding me to make paragraphs when i post.i keep forgetting.a huge thank you to splashdancer,monto8kids,whitebeard,boxerlover and leebie3 for your wonderful and kind comments.what i am going through is nothing compared to all of you guys.i should be supporting all of you.

boxerlover,from what you said,it might be worth looking into the ic business.i assume you see a urologist?here in australia,you can't get anything stronger than panadeine forte from a general practitioner.you either have to go to a specialist which i can't afford or go to a pain clinic,but the waiting lists are very long to get into those.i am in a lot of pain but i don't really want to take anything stronger.

momto8kids.have you really got 8 kids?amazing if you have.about the antidepressants,i am on a preventative migraine drug called dothep and it is actually an antidepressant so no doctor will put me on more antidepressants even though i do need it.i have not noticed much difference in my depression with taking this drug.i have talked to a lot of coucilers(can't spell)over the years but i have learned that only i can get myself out of my depressive states which i have done a lot over the years.

as everyone said,it is common for family and friends to not understand a person's chronic pain issues and now i am realizing i am just one of the unlucky ones who does not have a supportive family.my twin sister is married to a wonderful man who is supportive of her chronic pain issues,migraines and i think she is very lucky.

thanks again everyone.it is good to know that there are people out there who are supportive of others while suffering themselves and who actually care about strangers.have a nice day everyone.

*hugs Autunm*
I can completely empathize with your Interstitial Cystitis pain- I was diagnosed with it in 2003 after being told I was having UTI's over and over again, when most of the time there was never any bacterial growth. I was one of the lucky ones that got a diagnosis within a year's span- most people don't get a confirmed diagnosis of IC for years. I know how bad that pain is, it is one of the worst pains to have. I am lucky in that mine has not been bothering me for quite some time now, and I take Paxil and Hydroxyzine for it and they both help a lot. I have had SO many bladder installation's done and they hurt so bad. I am very hard to catherize due to my urethra being small and hidden, and I too suffer great pain after being catherized. So sorry you do as well! I hope the bladder installation's help you, they helped me some of the time, but not always, and the pain the same day of was always horrendous for me. I hope you don't have a bad experience with them. Are you on Elmiron for the IC? That's the go to drug for IC. I was able to stop taking it years ago, but most people are not that lucky. I actually stopped taking it because it stopped helping...and then about 1-2 years after I stopped taking it my IC got better. I still have flare up's occasionally, but not very often anymore at all. I do hope you can get some relief from it!

I am sorry that you don't have any support- that is such a hard thing to deal with. When I was first diagnosed with IC a lot of my family did not believe me, and they only started believing me after they would see me suffer from it. I was lucky in that I had my then husbands support. I don't even know what to say for how you can get your family to believe you and be supportive. Maybe print things out for them to read about the conditions you have...I did that and it helped my family get a better understanding of what I was dealing with. All of us here on the forum are here for you and want only the best for you. Please feel free to ask for support anytime you need it!

I do hope things improve for you soon!

hi tina.thanks for the nice words.i honestly don't know how you manage 8 kids and deal with bad health and be a forum moderator as well.are you a supermum or something?myquestion-how do i make all my information about my illnesses show up underneath every post i type each time i reply to something?i am a bit confused.

hi mumto8kids.i still think you are amazing to be able to cope with raising such a large family and being sick yourself.i am struggling to raise 3 teenagers and the stress does make my pain levels a lot higher each day.you should be proud of yourself.thanks for the info.take care.