Check out my vlog on relationships/dating and chronic illness and tell me what your opinion is on the subject!
I had a great realationship with my hubby til I was told I have sle. I'm alway tired or moody by the time he gets home. I have 3 kids and a home to run and it is not easy. I have nothing left in my by the time he gets in. Also I feel like he is more my care taker then my mate.I don't like that.I don't like that he does not understand that I hate being the sick wife I just want to be the wife and I'm not in a bad mood I'm exhusted but I do get mad because he always assumes I'm in a bad mood. I'm in pain (I have fibro to) if I wasn't in pain it be in a great mood. This illness takes a toll on relationship I think.
My husband had a history of being bullied at work… Dry mouth dry eyes. He had a butterfly rash on his face that he covered with makeup.He got terrible night sweats, ibs etc. When i was heavily pregnant he collased they ran ecgs they could find nothing. Morefield eye hospital couldnt help the eyes, no skin specialist resolved the skin, we could not longer kiss his mouth was like leather our intimacy was dissolving. He had night sweats. My husband wasnt coping with every day life he had been studying on top of working and wouldnt accept a couple of hours quality time nor would he take proper holiday. His anxiety and stress reached mega levels. For 2.5years on a friday night the lounge crackled with stress he looked at the floor you couldnt remain near him.
We were due to buy a house it fell through and he ran out on us leaving us destitute.
A month before he left he nearly let our then 5.5year old son drown in the pool. There had to be an answer.
At last we saw the gp with me. He nearly got cast aside again, on his nodd i explained the visible items.. the eyes the mouth and the skin. The smell of death and decay despite a hygenist being in place…The gp at last took note as I insisted we got specialist help. Within the week blood test revealed Sjroegens syndrome.
4 more weeks and he left us…. For 5 years he excused or blamed his symtoms on his asthma inhaler.
Recently he has taken me to court for access to our son never asked for. His memory seems more and more chaotic yet me with my worries, not accepting our separation and digging for answers I am the one they seem to worry about….
But I think I know the answers:
The bullying never happened. Even this xmas my husband reported to me an incident in the mens room at work where the man wanted him out of the company and another asked again, a question from his past are you sure you are cut out for this job.
This isnt just Sjroegens its also Lupus (the facial rash) goes back to him being 24 he is now 43 and has gone this long undiagnosed.
I need to see his specialist to explain what episodes I have witnessed the friday nights the electrical charge (thursday nights the feeling of fatigue around him was palpable) only then will they know he has got worse and worse had flare ups brain fogs.
it is not that I doubt my husband the opposite.. My husband doesnt trust my word or doesnt want to believe it he hasnt told the specialist all the other symptoms he said i dont have that now…
He is cutting me out for failings I do not have. I have loved and supported him to the extent I have nothing myself.
Our relationship our child our happiness is paramount to me.If I get him to admit the history admit he has not only Sjroegens but Lupus that his automimmune was the invisible attacker and that we are fine…
May be we can find acceptance and peace. Currently I hurt so much so does our son. He has used our money to buy himself a home and safe restful environment.
He needs to understand that he is now in remission and feels better not he left us and feels better. It took him 5months from diagnosis of basic Sjroegens to even start the mouth and eye substances prescribed.
He is struggling with acceptance – I struggled for answers. Now I think I have all the answers but I need to get them to his specialist and to get someone running from the reality to sit still to really listen.
My husband believes he is perfect. Sjroegens isnt hereditary but Lupus is I believe?! I need to know for our sons sake too….I need to tell you my husband became a control freak to the extent of spreadsheets, rude comments on spending any money yet I worked for him, he never let me out nor exercise so he views me as over weight.
I couldnt do more than give full support to my husband and child.There will be time to exercise when I get this horrid mess sorted out recognised, proper treatment and understanding in place.
I am the last of my worries at present.
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