An attempt at a good weekend with fiance

Last Wednesday my rheumatologist gave me an injection for pain, by friday I was feeling better than I had in months so my fiance and I decided to take alittle weekend road trip up north, I am from Michigan. The drive up was good until about the 3rd hr of being in a truck. We finally found a hotel,unloaded the truck and went to dinner. Dinner was ok, went back to room and went to bed. Saturday we decided to go alittle further north, just sightseeing, not good .....the ride home was horrible. My feet,ankles and legs were swollen, I hurt everywhere. My desire to try to have a semi-normal weekend didn't go so well. It is heart breaking for me and my fiance. This disease has so dramatically changed everything. Somedays my tears just won't stop flowing ........I pray for strength and positivity but I seem to struggle more than anything.

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  • So wish I had great words of wisdom to share with you but all I've got is a BIG Hug as I'm in the same boat.

    We have 5 children ages 19-31. I always thought NOW would be our time to "go and see" when ever where ever. However 3 little letters....PBC.... has changed everything. Most days I find myself sitting on the sofa like a 2 year old with a pout on my face saying IT'S NOT FAIR!!!!!

    The only thing that snaps me out of it is when I research PBC and all the nasty things that comes with cirrhosis that I don't have now and prayerfully will never progress to.

    "Want to make God laugh, make plans" and "Life one day at a time" smacked me right in the face about 2 years ago. Life it's been said many times, "It is what it is".

    Hope it will help a bit to know that I will be praying for you and all my PBC buddies.

  • It has also been said, in the most popular book in the world, that "He will not give you more than you can handle." I truly believe that He has a whole lot more confidence in us than we do in ourselves. -:) There are times when it's "Why me, Lord?!?!?!?" Then I come on a site like this and if I didn't have PBC (and AIH and a whole load of other stuff) I wouldn't have met any of you and that would have been a shame. -:)

    And - - Life is what you make it - good or bad. HUGS!!

  • Thank you kosy2....I know the 2 yr old pout....somedays I just sit and wonder why! ? The cirrhosis part I totally understand. Three years ago I sat for 4 days with my mom as she died from cirrhosis ....another part of this disease I constantly worry about. It is nice though knowing there actually are people who understand.

    Stay strong!

  • Hello.

    I too would like to do a lot of things now I am 48 with no dependent children as my 2 are grown up BUT I find as excited as my thinking gets to do certain things, I know that come the day/time never know just how I'll be feeling.

    I only feel tired later in the day if not slept great the previous night usually if a night where I have the itch but I know it makes a whole heap of difference when you are going round feeling constantly whacked out.

    I steet clear of perhaps reaching the cirrhosis stage myself, put it out of my mind as I think at present I'm doing fine, well as fine as can be regardless.

    I find the most heartbreaking is the fact I used to whizz about all over the place, have constant energy so it seemed and now tho' I look great, I can feel that I'm being pulled back or am winding down at certain times in the day. I find myself yawning continually come 3-ish in the aft and then start to take on a tired look come teatime.

    I KNOW things could be a whole lot tougher than they seem for me at present but tho' I'd rather be normal like I thought before I started with the itch sympton 2yrs ago, it often gets me when some of my family (my sister in particular) just don't seem to 'get it'. They don't seem to realise how serious PBC may become and that every time there's a bad day I am trying to get by thinking, 'But this is today and you're fine for now....'

  • This is the trouble no one understands how serious it can become,I didn't even get it myself at first, I came back from my diagnosis and put a message on the forum of the on line auction site ebid.net and the response I got from the other forum members was astounding, they realized the seriousness of it more than me and sent me alsorts of gifts and flowers, really lovely people all of them, I could not believe it, I could not understand why they were so concerned and then I started to read the PBC info and wow it hit me.

    I also thought I was going to have a lovely retirement with my husband and wham my life just went to bits and i can hardly go anywhere, it's either the computer, bed or cry apart from GP and hospital, I am so fed up.

  • Thank you both for your responses. I have had a rough weekend and it looks like I am heading into a tough week. Last night was one of my "wishing I could go to sleep and not wake up! " I don't even know if that is a common feeling, normal, no, but common?

  • If you feel really low you could go and see your doctor - depression/anxiety go hand in hand with cronic illnesses and your doctor should understand that. My doctor put me on a small dose of amitriptyline "to help things tick along". It does work for me and made my mood more even.

  • I send you a big hug too. This disease is crap. Hope you don't have a tough week. I can understand why you feel like that, I have some down days too.

    take care.

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