dont think anyone understands

[shellemo]

just feeling like a burden because my 'get up and go' has got up and gone ive literally no energy to do anything . Even housework is such hard work and makes me really sweat . Even tho im sleeping all night exept getting up 4 times to pee lol . All i want to do is lie on the sofa all day with my hot water bottle . My boyfriend keeps saying im lazy i dont think he will ever understand :(

[Tuckersmom]

Do you think it could be a side-effect of some of your meds?

[shellemo]

no as im not on any meds yet im still waiting for my cytoscopy and urodynamics xxxx

[VickiB]

I take it these feelings and lack of energy is new for you? This is probably something you should mention to your doctor if it continues.

My boyfriend keeps saying im lazy i dont think he will ever understand
It sounds like he's grabbing on to the easiest explanation to define his situation. Maybe thinking any further, considering other possibilities, is just too scary for him at this point.

I'm sorry you are feeling this way!
Vicki

[maryla]

I read a study here somewhere a while back that there are those of us that do have fatigue with IC as a symptom. YES, the fatigue is HORRIBLE with me as well. STOP beating yourself up and please do not allow others words to harm you. We deal with enough on a daily basis, we don't have to let anyone else define us!!

My MIL said I wasn't sick I was just lazy too. I was just married a little over 5yrs ago to my sweety. Basically I just considered the source so to speak. That women has no idea who I am. A lot of people judge, without knowing what we really deal with. And it is sad for them, not us! The lose in the long run.

No, no one really understands, unless they have BEEN there! Take care of you.

Maybe you could invite your BF on line here. Maybe that would give him a better understanding.

Hugs and blessings,

[Snowden1]

shellemo,
I agree with Mary. Many days I cannot get off the couch because of pain, fatigue or just depression caused by the way I must live now. No one in my immediate family says a thing. As a matter of fact my 8 year old asks, "What's your pain level mom?" Also, she says, "If you need to, just lay there until you feel better (and she rubs me).

My mom (when I stayed there) would constantly tell me, "It's not good to sleep during the day." But, I don't get much sleep at night. She thought I was lazy if I was on the couch. Oh, well. I have learned that just getting through the day, however I can do that is most important. Again, as Mary said, "Take Care of Yourself."
Teresa

[shellemo]

you guys are the best thankyou for all the support . I think i may invite him on here in the future x love and hugs <3

[statesboro]

It is not the first thread that we have had about people being more tired. Besides, I used to get in my car and go places without too much hesitation. (and no IC) OK. I used to have some sleep deprivation due to IC. That would be because I had to go to work on less than 6 hours of sleep many times thanks to having to urinate so much. Yep! I finally got to where I can usually stay asleep once I get to sleep. Of course, I usually got up before I ever fall asleep. Anyhow, I finally got told chronic fatigue after going to my primary care doctor more than once complaining of more tiredness.(and getting proper sleep by then) Actually, the nurse had said chronic fatigue, but she did speak to doctor first. Geez! I slept like a big dog, but I feel like I could not have slept over 6 hours.(although I really did) Yep! I did get up around 8:00 to pee, but I was able to sleep some more. Life goes on. Many people will never understand. I just get by. I actually feel like tiredness should be a symptom of IC sometimes. (if I had not been told CFS) Ok. Many of us do have other conditions as well.

[maryla]

SB

Yes, I was also D'xed with chronic fatigue as well. But I think IC really takes a HUGE toll on our bodies with hurting and no sleep. It takes a lot out of us just hurting!! Then add the no sleep part??

I don't know how you do it? Working and evrything I mean. I had to quit my job and go on SS> I really hate it! I love working! I'm getting my bladder out soon and one of my goals is to go back to work, at least part-time. I miss people!

hugs and blessings

[statesboro]

I don't always know how I am able to do it, either. Oh! I am a custodian; therefore, I can get to a bathroom easily enough. Many people on the 6:00pm-2:00am shift have been more tired because some changes were made that had some people having to clean more buildings.(in a group)Ok. The absenteeisms even went up.(and working short sometimes) We are going back to the way that we had been doing it after we get back.(off all next week) Yep! The custodial manager had been in hospital and convalescing, but she is back now. The changes were made while she was gone. Regardless, many people on the shift don't even know I deal with a chronic illness.(or illnesses) By the way, I have got some Provigil to take. It helps some. My parents want for me to keep working and never bought the CFS conclusion. (as my mother just said depression and not CFS) Ok. My mother has said back in my day and back in my late parents day and so and so. (whatever) I have been on depression medicine.(more than one) Yep! I often felt like sleeping more.?(hmmm) I was taking off of Cymbalta and told I don't need it any longer. I did not think I was needing it, but my mother tried convincing phyciatrist mainly because she was not believing chronic fatigue.(or so I thought) Oh, well! My dad actually said they don't want me to be sitting at home on disability. Geez! Oh! I don't wanna make anybody in the family look bad.(some bigwigs in the family) My parents act like I just overplay and so forth sometimes. Yep! I was dozing a little bit ago. I do get tired at work and feel like I just wanna close my eyes. (some shifts) Anyway, I did notice your bladder was coming out. Of course, I just wanna be over IC and CFS for good. Some people just don't "get it". Oh, yeah! I probably do more than some people would do with all that I go through.(like sinus trouble all week now) Hey! I went to football game today. Ok. I am currently wearing a sweatshirt with something about IC on it. Oh, well!

[CloverGirl]

I know how you feel. Sometimes it feels like almost no one in the outside world (outside of this site!) has even the slightest clue what IC is all about. I also get the tiredness quite a bit. It gets the worst when I have been flaring for a while. I think our bodies just get plain tired after dealing with pain like that so much. It's weakening. And it stresses you out. AND can make you depressed which makes it all worse! I have been taking Zoloft for a while and it seems to help to a point sometimes, so I don't get QUITE as tired as I used to, but there are some days it just feels like too much to take and you just want to lay under the covers and hide from everything. I have read many, many posts on here with others feeling the same as you, and me, and everyone on this thread. I think in any illness you generally will feel run down after dealing with it for a lengthy amount of time.
As far as your boyfriend's comment, I think maybe he should put himself in your shoes. You are dealing with a chronic pain condition and the stress that goes along with it, not to mention all of life in general, and to just say you're lazy is kind of unfair and rather hurtful. He should be supporting you and trying to help you deal! People in general just do not understand. No one can understand this, truly, unless they are coping with it day to day. It is even difficult finding doctors who seem to care. At least it has been for me. I see my GYN, the one who diagnosed me, as the uro I had went to made me feel like I was a crazy loon imagining what I was going through. You just have to find the right people and right support system to help you through. I was feeling pretty terrible about myself until I found this site. It has changed my life and view of myself.

[Mrs. Peel]

If you're just starting out, I can tell you the fatigue gets better. It all gets better. There may be some people who didn't improve after their IC was diagnosed and treated, but not many.

[Calinda]

Yes, it's hard when others don't understand. I think for guys it's harder for them--because they feel like they are so tough and if they had it--well they'd be able to tough it out.

I'm not sure what can help others--I think the one suggestion was made to have him really learn about this illness himself. For some people it actually takes them having something wrong with them to finally understand other peoples struggles.

Some people are more naturally "sympathetic" than others. Also, I think it takes people time to absorb it.

For my husband it took him time to understand another illness I had at first which was Multiple Chemical Sensitivity. It took him about 5 years to finally be totally supportive. With my IC I've had since June (the pain part) I try not to dwell on it too much. I sort of don't talk about it much. Then if I'm in a ton of pain--and just want him to know that I'm not my usual self I will mention it. Since there is alot of pain sometimes--I just didn't want to sound like a broken record, because that can be annoying. He's funny though he still offers me coffee to drink because he forgets I can't have it.

[statesboro]

I happen to be a dude, by the way. Oh! I happen to have IC as well. I do know some dudes try to be macho and act like nothing is wrong. Geez! I have lost count of how many doctor visits have been made by me during the year so far. I do know the year is getting closer to being over by now. I'll probably be going again. I am at home instead of at work right now. Vertigo hit at work once again. I was not feeling fantastic before going in. The meclizine has kicked in. It seems to do some good, but I am getting drowsy by now.(why I don't take one at work and try staying) What am I gonna do? I have left work early 3 times due to vertigo by now. (only started last month) Ok. I am a male that really does understand. It may have taken IC and CFS, but I do now. Oh! People may think I am whimpy and overplaying, but I really felt like I was riding the tilta whirl earlier. Geez! I just realized it is my third post now. Oh, well!

[Mothergoose]

For some people especially if it their S.O. denial is a way of coping for them, they can't really take you pain away, and some people just don't get it or don't want to get it.

I too try not to complain too much so my husband does know if I an complaining it is bad. But his has back fired on me too, we went away for xmas one year our whole family, I decided before going I would not complain at all if I could, at the time I also had a constant migraine and did not sleep.

When we got home we were at the dr's and my husband said that he thought we needed to move somewhere warm because I was just fine while we were away, I tried to tell both of them that I still had the headache and the Ic problems that I had just not said anything trying not to ruin the holiday for the rest of them and tring to be a good sport and push myself beyond my capablilities. I don't think either of them believed me, so I guess there is a fine line to tread.

MG

[Snowden1]

Yes, I get this from people much of the time. You can't see pain, so everyone thinks you are o.k. I feel bad everyday, but don't think I should complain about it everyday.
Teresa

[Talula]

Pain can be very draining, I feel like I have the least energy on the days I hurt the most (like today) and the days following.