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brett88

Member
Joined
Aug 18, 2016
Messages
13
Reason
DX FIBRO
Diagnosis
7/2009
Country
US
State
PA
Hello. Thanks for allowing me to post on the board. I was the 2nd rated player on my college tennis team, I ran a church softball league, I love the Philadelphia Eagles, and I love reptiles, amphibians, and all animals. I used to play sports a lot but cannot now.

Unfortunately, after a long 13 month bout with CMV virus in college, a cousin to mono, I 7 years later started having my first symptoms of fibro, lightheadedness, pressure in my ears, headaches during a tennis match...after many appointments and trips to Texas and Colorado with every test imaginable done, I was diagnosed with fibromyalgia twice in 2009. Along the way I have developed hypothyroidism, sleep apnea, and interstitial cystitis. I've had a failed back surgery and recently nasal surgery. I have literally no social, work, and sex drive. I am tired and in pain all the time. I am married with two kids but obviously feel like a bad father and husband.

There are literally only a few things that make me happy, even if momentarily. Watching the Eagles when they win, a massage, and a Cola Slurpee or Icee. And perhaps finding a rare animal and getting a photo. I do some surveying for the state of Pennsylvania and other states with reptiles and amphibians, when I have enough energy to.
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,549
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Welcome to our family.sorry it's a rotten one hehe.
Ok the cystitis .cut out All salt from your diet. It's a real pain but cut it out.you should find it helps a lot. Do it 100 percent and with in two weeks u should start to feel alittle better. Trust me I been where u are. Also the stress of having this illness can give you cystitis .it was only when I found the one big stress factor in my life and deal with it did it start to ease.it took me well over a year. But the salt thing really helped big time.look it up if u want .
Stick with the hobbie.even on days u can't go out ,there's always penty of online sites to read up or chat to.
I used to have 7 tarantula now I just have the one. But she still give me a trill when she comes out for a cuddle.yes I said cuddle readers .
She calms me down. U can't hold something so delicate and be uptight.one drop and she would die..so for me I find her very calming.do u have any pets at home.
As for sex.well sweetie.no one can have cystitis and want sex. It's not going to happen is it.thats like asking your wife to have sex when she got her worse period. And I'm pretty sure she's smart enough to no you can't.pls do t take it the wrong way, but man tend to worry about not being a man , more then a women worrys about u not being a men.
I say this so much .and I even need to remind my self offen. Take one day at a time.tackle one problem at a time.
 

brett88

Member
Joined
Aug 18, 2016
Messages
13
Reason
DX FIBRO
Diagnosis
7/2009
Country
US
State
PA
Thanks forgetmenot. Right now my pain and sleep apnea is even worse than my IC. A couple months ago, my IC was worse. It just seems like when I try to help one thing, it hurts another thing I have. I really don't have much salt as it is. You are 100% right, men worry about being men. We are driven by our jobs and sex, and when we can't do either well or at all, it's quite psychologically damaging. Women are more driven by relationships and their loss of them, from what I have been told.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Yes relationships and loss of them...rejection and not being cared for and shown understanding counts a lot to me.

So sorry Brett for how things are.....Forgetmenot is right keep up with anything hobby wise that makes you feel good.....sex is pretty much down the list when you are in so much pain IC or otherwise.

You are no less a man and any woman worth her salt will be caring about your health and wellbeing ....there are other ways to get your rocks off !

You are not a bad husband or father but we all feel like that because of the worlds expectations and our own.

Show you love your family in the ways you can...it may not be physically vigorous ways....but do it in little ways..reading or board games with the children and small gifts or flowers for your wife....probably as good as sex for her!

Even if you have to lay in bed you could all watch a funny movie cuddled up together or cartoons with the children.

Children just love talking and cuddles sometimes even if that's lounging on the sofa or bed on a bad day.

Try heating pad or hot water bottles for pelvic pain.
 

brett88

Member
Joined
Aug 18, 2016
Messages
13
Reason
DX FIBRO
Diagnosis
7/2009
Country
US
State
PA
Yes relationships and loss of them...rejection and not being cared for and shown understanding counts a lot to me.

So sorry Brett for how things are.....Forgetmenot is right keep up with anything hobby wise that makes you feel good.....sex is pretty much down the list when you are in so much pain IC or otherwise.

You are no less a man and any woman worth her salt will be caring about your health and wellbeing ....there are other ways to get your rocks off !

You are not a bad husband or father but we all feel like that because of the worlds expectations and our own.

Show you love your family in the ways you can...it may not be physically vigorous ways....but do it in little ways..reading or board games with the children and small gifts or flowers for your wife....probably as good as sex for her!

Even if you have to lay in bed you could all watch a funny movie cuddled up together or cartoons with the children.

Children just love talking and cuddles sometimes even if that's lounging on the sofa or bed on a bad day.

Try heating pad or hot water bottles for pelvic pain.

Right now, my fatigue and brain fog are so bad I feel like I can't do anything. I struggle with relationships because I simply don't have the energy. Fibromyalgia was bad enough, but getting diagnosed with interstitial cystitis was twice as bad, because it prevents me from doing the things I like to do. I feel like life will never be good because of that. I'm tired, aggravated, and depressed (not in a suicidal way, just how anyone would be)

My wife has been understanding as far as all my medical appointments and allowing me to go to X and Y, but she hasn't really gotten involved. She's busy with the kids and hasn't been the complete support I need. But I know she has her hands full with running the house and taking care of the kids and I feel like I should just be grateful for that. I feel like a bad husband who will never be able to give her what she deserves.
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,549
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Your wife is coping the best way she can.kids house work are as hard as any mans job,
I'm sure she as tired as u feel.
It's hard for any parter to understand what we go through,it is a illness that cuts u off from everyone.
I'm lucky I don't have a man ,I don't have to worry about keeping up if I hurt.but I do have four lovely kids.
Well I say kids ,ones 20 ones 18 and ones 14. It's the little one who's four that takes all my energy.
Buy the time I get her to bed ,I want to die with the pain.
There's no easy way.it really is one day at a time.
 

fibromomof2

Member
Joined
Sep 6, 2016
Messages
17
Reason
DX FIBRO
Diagnosis
04/2004
Country
US
State
IL
brett,

it's difficult because with fibro and associated conditions, we have to grieve and mourn the loss of our former selves. I used to bike ride, do aerobics, weight lifting, dance, bake, make quilts....the list goes on and on of the things I *used* to be able to do. I, too, have IC and it can be a monster that's for sure. I've been having lots of trouble over the last several months which I think is related to the med combinations that the various doctors have me on all of which the doctors said "oh there are no interactions you need worry about." Somehow I don't think that is true.

Maybe you could open up conversation with your wife about what your needs are. Maybe make some notes for yourself before you talk to her. Sadly, my husband doesn't get fibro. He travels for work and I am here to take care of my kids as best I can. It's lonely and frustrating, but I just keep doing to the best I can.

I like Cola Icees too! Do you have a Sonic Drive In near you? Sonic makes awesome slushees too.
 
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