I have been diagnosed with PBC for 20 years now. I only found out 10 years ago but that was my own fault and another story. I met my husband 10 years ago and we were together when i found out about PBC and have told him the ins and outs of PBC till im blue in the face. I have given him all the literature I can get my hands on, made him watch videos and blogs but he still doesn't get it.
I have recently (since Christmas) become more tired and feel a lot sicker than I usually would. I sleep a LOT these days averaging 10 awake hours per day half of these being at my work. Work is in no way a problem as I reduced my hours to suite my needs and its perfect. I drop my 5yr old son off to school in the morning and collect him wen im finished work. then we get home and ill make him snacks then sleep for a few hours before I get up to make dinner. Its a routine that's working fine but my husband isn't happy.
I do have more energy at the weekend as i can chill at home and have a few more hours with my family which is great.
Hubby is getting frustrated at the amount of sleeping im doing and the quantity of medication im taking. he said the other day this is going on far too long and something needs to be done about it. Says im taking too much medication and it couldn't be good for me?? And that its affection everyone! He said this is ridiculous!
I had an awful bout of sickness during the week there were it woke me up in the middle of the night and I nearly passed out when I went for a glass of water. I felt so sick in the morning that I said to my hubby I wanted to stay at home and not go to work. he said and I quote 'sure whats different today from any other day, why is ur sickness so bad today? get up and get on with it, sure you only work a few hours anyway! the sickness will pass'
I went to work but ended up having to go to my GP's office for an antisickness injection straight after work and my consultant at the hospital has had to change my cyclizine and has prescribed me Ondansetron. I collect my script for this today and pray that I get some relief as I am nauseous all week and have barely been able to eat. Im drinking lucozade which helps a bit, don't know why but guess my body is used to cyclizine after 10yrs!
Hubbys lack of understanding or ignorance is driving me insane and I cant cope with how blasé he is about this. I guess he thinks in his head....shes taking medication she should be getting better! Im not looking for sympathy from him just support. And im not getting any!
I was shocked but not surprised, I have a notion he thinks this is all in my head as on the outside I look great. I explained to him AGAIN that PBC is an incurable disease and that the medication I take is to help my liver function properly to slow down the disease and prolong my life. I take Ursofolk, folic acid, omeprazole, cyclizine, antihistamine and Fluoxetiene. I also have systemic schleroderma which was an additional diagnosis a year and a half ago and Arthritis in my spine.
I take my Urso and folic acid in the morning and I throw in a capsule of oil of primrose as I also have arthritis of the spine. These I take in the morning. My folic acid levels were low and this can contribute to fatigue.
At night I take cyclizine for sickness, fluoxetiene which can help the schleroderma and antihistamine (if I don't take this I itch and sneeze a million times a day) and omeprazole as schleroderma affects my gut. if i am sore i will take co-codamol but only one. I take these at night as they can make you drowsy so were killing me during the day as im tired anyway.
Think this is more of a vent than anything else. Just good to get it off my chest.......If you are reading this to the end then I thank you..........just having a bad week, love to all.....Suzanne xxx