I was on this site a while back. In one of my GCA pred induced anti-social hate the world moments I took myself off of all social media. A few weeks back my husband looked at me one day and said, " now what is the name of that thing you have"? Are you kidding me? The thing that has consumed me, that I have been working sooo hard to conquer, that thing? In that moment I realized the importance of community and I missed it. So here I am, back again to share the good and the bad. It is almost 3 years since this beast came to live in me and I am starting to feel human again, my good days outnumber my bad days. I know that one day I will leave the door open and the beast will leave on its own and I will be a better person having learned so much on this journey! My best to all of you that you continue to improve every day.
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fmkkm
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I’ve been on this journey for three with GCA and now recently PMR, I regularly get asked why do I take medication I look ‘ so well ‘ . That’s from my family !!!!
Welcome back and glad to see that you are having more good days than bad now. I totally get how annoyed you would be when your hubby asked what that thing is called. They can't do right for doing wrong eh! But at least he asked 🙄 Anyway welcome back into the fold. It has been a godsend for so many of us. I have PMR but have never met anyone with it or GCA so this forum is a lifeline. Great place for a rant and/or a laugh.
It is indeed crazy. I've said before that I used to the easy going one between us but my hubby loves to rant at the moon 😏 he does love a moan. However...... Don't know whether to blame the PMR or the steroids but I can get just as snappy as him now when he starts to rant 😂🤣😂 oh to be a fly on the wall when we start. 2 years married bliss, the other 45 years well.............😆
Welcome Back 🌺
You’ll find some of us long timers still here rattling around & a good few new members. The forum is very active, always something going on, queries, questions, general Chit Chat & a few laughs!
Husband's can be so frustrating can't they. I've been wheat intolerant for years and always drink decaff coffee but mine often doesn't remember. When he buys ground coffee he goes by the colour of the label not what it says on it. At the same time he expects me to remember personal stuff like collar size for him! I think on the whole I accept it now (after very nearly 49 years!). I wouldn't have been able to do half what I've done in life without him and I'd find it really difficult now if he wasn't around.
Like when we went on the Cruise after Oncologist said I was ‘free to go’ we arrived on the ship & DH said ‘Where’s the Shampoo?’ I just looked at him, took my wig off & said ‘I don’t need shampoo, why would l pack it?’ We both laughed 😂
Love this site but not a huge fan of Facebook, mind you I wish I'd checked in today - I'd have found out my yoga class was cancelled....an hour wasted in the car. Sometimes social media has to be done! Glad you have rejoined. Keeps me sane - more info and help here than from the doctor.
Welcome back! Input from fellow sufferers makes the journey more bearable! Had a few husbands, now I have a live in housekeeper (and a dog). It’s like having a wife! Far easier to deal with my personality on Prednisone!
Hello...so glad you are experiencing some better days. I agree that this condition is difficult for people to understand all involved. But hang in there! May I say that for most men, it's just in their DNA to have tunnel vision about anything not relating to them. Ok I said it. Just know you do have support on this site. Hope you have a wonderful day
Husband’s are all very well, but we really, really, really understand. 😊
Don’t moan too much about him....one day he will not be there, and you do miss them...warts and all!
As mine used to say - “we have a marriage based on trust and understanding - she doesn’t trust me and I don’t understand her!” Still miss him after 5 years.
Thanks DL, such sweet thoughts. We have been together 45 years and really do like each other a lot ! He has gotten pretty good at weathering my steroid storms, and thankfully they are not as frequent.
My beloved hubby (and best friend) died on our 46th anniversary. I like to think he went that day, so I wouldn’t have 2 “sad” days close together - he would have said “get it all over in one!”
We had a very strong loving (although at times tempestuous) marriage, unfortunately his last few years weren’t as good for him health wise, but we lived life to the full every day - as he used to say ‘this isn’t a dress rehearsal, this is it!”
I guess I am one of the lucky ones... it scared my husband silly when I came down with PMR and then even worse when GCA set in... he would be happy for me to sit and never do a thing and he will wait on me hand and foot... of course as much as I appreciate it, that just isn't my style... never have been the sit down type so I push myself too hard sometimes, but then I know I can rest as much as I want or need to. Even my kids are so attentive and telling me don't over do it all the time.. I sure do feel loved... sometimes not sure that I deserve that though.
I wish you all the very best and a good rant is good medicine !!
So glad you are feeling better. It gives me hope. I just went on a prednisone rant week. My poor husband has been an angel thru all of this and he didn't deserve what he got last week. I started Rayos and it has taken a while to get the dose correct. Was on prednisone 11mg and doing fair. Started the Rayos and everything went bonkers. No one told me I was to take most of my dose the night before. What a difference it made this morning by taking it that way. Morning Pain down by 70%-80%. Actually got up and made my bed first thing and put in some wash. I feel much more stable.
Sounds like your plate is full right now! I am by no means to the end of this but a little better than the first year. More moments with a clear head but still a day once in a while that feels like my brain just went through a paper shredder. I feel like I bought the 5 year plan!
My husband of 50 years hates illness. Tended to ignore PMR at first, but 3 years down the line I needed hip replacements, and he had a steep learning curve of care and shopping and cooking.
We have always been best friends and described as" very couply".......do everything together. Studied Chemistry at Uni, where we met, side by side all day. Followed each other's hobbies closely........I learnt to score at cricket! Never ever argued till.......... PMR or steroids or lately the strong pain medication!
Hopefully, we will survive these conditions and be stronger for it. As DL says we would not like to be without them.
With apologies to Hubbie for my ranting, temper and blue moods......I hope they are temporary.
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