Feeling so down

[Mc2203]

Past few days I have been so very upset. I had been so strong before this but now I just feel hopeless. I sometimes think that if I had gotten this disease when I was a little older, I could have coped but at 23 years old- my life was just begginning... And now I feel like it is over. Im so bitter about being ill that I am driving my freinds, family, boyfriend away. I try & be positive but it's so hard when you feel like there is little hope. I jusy sit and watch tv but Im not really watching it- Im worrying. When Im watching TV, I get jealous of all the 'normal' people I am watching.. How crazy is that?!? IC is turning me into a bitter person. It is draining all of my energy. I am 2 months from finishing my postgraduate degree in Social Work but feel like giving up. Whats the point in doing all of this hard work. I wouldnt be able to have such a hard job with this illness- I dont know who Im trying to kid. Just feel like Im watching everybody around me live their life & I am sick & tired.. I swear if I ever feel better, I will NEVER take anything for granted again. I was soo spoilt before this. Didnt know how good I had it...
Goodnight everybody- thanks for listening...

[Linda May]

WE ALL UNDERSTAND, IT IS A LIFE ALTERING CHANGE, OTHER PEOPLE WILL NEVER IMAGINE WHAT WE DO GO THROUGH. YOU CAN TALK TO US AT ANYTIME AND GET ALOT OF INFO HERE. I WAS WONDERING WHAT KIND OF TREATMENT PLAN DOE'S YOUR URO HAVE YOU ON? HOPE AND PRAY YOU FEEL BETTER SOON.

[ICNDonna]

I'm so sorry you're feeling so sad. Are you on any treatments for your IC?


Donna

[Snowden1]

I am so sorry you are feeling so bad. You are not weird for looking at normal people on t.v. and wanting to be normal. I am totally jealous too to the point where I can only watch certain shows and I have to skip through all the comercials or turn them off. I can't look at them. What have you tried in terms of treatments? There are some out there that many have had good success with. You are so close to finishing don't give up that is quite an accomplishment and it is possible you may be able to work in that area or close to that area after graduation.

[Mc2203]

Thanks Linda, Donna & Snowden for your replies & kind words. I am sorry it has taken so long to write back, its 8am here- Ive only just woken up! I am onto my 3rd Uro- Im waiting for his secretary to ring me with the appointment (everyday she says she will call then doesnt!). I have some hope in this uro- he is on the medical advisory board in the UK for ic ( so he knows what it is which is a start!). He is also part of an International IC group that I noticed Dr Moldwin is part of. I hear his name mentioned here alot. So I supposed I should try & be hopeful. I had success with cystoprotek for 4 months but now its back with avengence! Been flaring for just over a month & seem to only be getting worse. I tried adding Atarax but it caused me worse burning. I know there are lots of treatments but Im panicking because of the posts Ive read where Elavil causes sometimes unexplained weightgain. I want to try Elmiron but its so hard to get it over here. Im going to stay in bed all day & try & relax.
Thanks- feeling a little better today

[ABliske]

Sorry to hear this! I've had IC for about 6 years now. I get down about it too!! And why don't those medical assistants ever call back!!!! Or it takes ages.
I work full time. I want to go back to school because I don't feel like I can get ahead. I have a 2 year old and I feel drained a lot of the time! I don't know how I'll ever manage to get in more schooling. I just have an AA.
So, I definitley encourage you to stick with it and get the postgrad degree. I was interested in sociallogy (SP?) too.
Keep your head up. There are many of us in this for a loooong time.

[Jinny Jean]

similar

I am sorry you are feeling so down .... I am also 23, and I am also just finishing my social work degree as well! I grad in June!! I first started having symptoms in Dec, and I literally did not feel or think that I could finish my degree that I worked so hard for 4 years for!! I was inches away from failing my last year, and I have NO idea how I kept it together long enough to start seeing the light at the end of the tunnel. I was in bed for 2 MONTHS. I wanted to give you a little bit of hope.. because not to long ago I wanted to give up. I just started Elmiron, after trying the diet alone... I have been on it one week and I already feel like it is doing something. I dont even know if this is possible, but I am not running to the bathroom other than normal.... Maby I have a mild case and I all I need is some Elmiron, I dont know! I was desperate for something to make me feel like a normal person, and I was doing (and still sometimes do) get bitter at the normal people with normal bladders..... I find myself wondering... hmmmm "i wonder if SHE has a normal bladder" ...ugh... I feel really down alot too... and I NEVER take my good days for granted!! My advice would be to try Elmiron, it might help you see the light too! If you ever want to chat please PM me! I am sure I can relate ...

Take care!

[cjhsmith]

I feel the same way. I just now got my life on track after my husband died. Now I have this. I don't know how I will function alone. I'll pray for better days for both of us.
Hugs!

[Mc2203]

Hi guys sorry, I did not check this post for a while have just seen replies. Thanks everyone for the support. I am seeing a new uro so hopefully can start tryin different things soon. Jinny jean- I sooo want to try Elmiron but it isnt available in England without a fight & because I dont have pain with my ic, I doubt I'll be a candidate for it. Im having some up days with down days inbetween. Trying to stay positive, I know some are worse than me. Im just full of self pity at the mo!

Sarah

[me123]

I am 26, so I can relate. I am also in a job considered stressful. I manage to cope, somehow. I have days that I just think, "why bother". I sometimes take more meds than I probably should to control the symptoms. My doctor asks why and I say, "what is the alternative, its is the only way I can live". I have had problems since I was 15 and they have gotten worse. Luckily the worste of it last about 10 days, but I get about 8 flare ups a year.

I have yet to be diagnosed and receive medical treatment. I am also with a new urologist and have testing scheduled next week.

I wish you luck on getting approval for your medication!

[Snowden1]

me123,
Why do you think your flares last like 10 days - then they go away? What do you think makes them go away?

cjhsmith,
Did your symptoms come on suddenly? Did you wake up like I did one day in severe pain or did it progress?

[me123]

Sometimes I can tell a flareup is coming if I listen to my instincts. My legs feel really tired and weak. Then an hour to 12 hours later it hits me hard. Sometimes I do not realize my legs are tired and such. Now I try to take Benedryl and two Peridine as soon as I notice my legs having problems. I think the minor discomfort before (maybe weeks) and after (sometimes weeks) is part of the flareup, but it is not enough to take anything for. It is just severe for about 10 days. The Benedryl at night seems to help with the flareups.

Soda of any kind is a trigger for me.

This time around it appears Effexor triggered my flareup, which lasted longer than usual. I just found out I am allergic to the Effexor.

For minor discomfort I use a body pillow. I sleep on my side with one leg straight and the other with my knee bent and seperated from the other by 90 degrees. It seems to help the muscles from tensing while I sleep.

[123456]

Remember those people you are jealous of may have "something" you don't know about that is just as bad in their lives. I always try to remember that when I find myself longing to be in someone elses body. They too, may have IC and are making the best of it. They could be fighting cancer or have some other painful disease. You just never know what others are going through. Trust me, everybody has been through something!

[Mc2203]

You're so right

Thanks Michelle. You are right. Its just easy to have a pity party sometimes. Ive just been watching a tv programme about a beautiful model who had acid thrown in her face by her ex boyfriend. She is badly disfiguered now. I had to put it into perspective. There are always people worse off...

Sarah

[Capey]

Past few days I have been so very upset. I had been so strong before this but now I just feel hopeless. I sometimes think that if I had gotten this disease when I was a little older, I could have coped but at 23 years old- my life was just begginning... And now I feel like it is over. Im so bitter about being ill that I am driving my freinds, family, boyfriend away. I try & be positive but it's so hard when you feel like there is little hope. I jusy sit and watch tv but Im not really watching it- Im worrying. When Im watching TV, I get jealous of all the 'normal' people I am watching.. How crazy is that?!? IC is turning me into a bitter person. It is draining all of my energy. I am 2 months from finishing my postgraduate degree in Social Work but feel like giving up. Whats the point in doing all of this hard work. I wouldnt be able to have such a hard job with this illness- I dont know who Im trying to kid. Just feel like Im watching everybody around me live their life & I am sick & tired.. I swear if I ever feel better, I will NEVER take anything for granted again. I was soo spoilt before this. Didnt know how good I had it...
Goodnight everybody- thanks for listening...

Hi there hope you dont mind me contacting you direct like this, I am also in Manchester UK. I saw Mr Montague at Withington - he is also great. There is another young lady like yourself who I keep in close contact with who is just grduating now, she has written an amazing blog and if you really want to lift your spirits and realise that there is life after this.....and that healing is possible, just read her here. http://inflamedlining.blogspot.com/2...m-on-mend.html I am sure she will be happy to stay in contact with you too. He has been to Hale Clinic in London and also had some accupuncture, which I tried as well, and it helped so much its incredible.
Unfortunatly we are not always able to get the same drugs as the USA does and often our doctors are not as clued up (don't you just love the NHS) - but being on a forum like this one and the COB in the UK literally saved my life.PS I have been symptom free now since October last year. Oh whereabouts in Manchester are you??