Just thought maybe this would be of help to some
The Spoon Theory : Just thought maybe this... - PBC Foundation
The Spoon Theory
Written by
gailann59
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gailann59 - Thank you for this! I have seen it before. I believe it originates from a woman explaining to a friend how polymyalgia affects her. I agree with you, it speaks clearly for PBC too. It helped me understand myself!! 
Personally, there is no one I would explain 'spoons' to because anyone who needs to know (and cares), already knows that I live as best I can. (I have been diagnosed for 8 years.) Whether people "get it" about PBC or not, they, and we make decisions about where and with whom we spend time. PBC has changed the shape of my life but it has made me make better use of my time. I like the sharing of ideas here, and how it helps us, or makes us think. I like the ease of using the internet to connect with people I would never have met who have the same (rare? is it?) disease and are generous and real enough like you to share their experiences and discoveries and offer comfort when needed. And I like the host PBC Foundation that keeps its eye out to inform and advocate for us. Keep posting and thanks again.
PS before diagnosis I was out of spoons before I got home from work! In retirement, I am much better. It's heart rending to hear of those still struggling to reach either or both of these. Where are you on this scale?
gailann59 in reply to
4thPlinth... Oh how I totally relate to all you said above. I, too, am 8 years diagnosed, also live with severe anxiety. I have had to back off socially, emotionally, and physically... was telling most I am fine for far too long. Have the itch, joint, and fatigue issues mainly. Itch has never been worse than this SUmmer with the heat, humidity, and high dew points/
in reply to gailann59
gailann59 - I am sorry that you have all of these. The winter is hard, we look forward to summer, and BAM! it either doesn't get better, or it gets worse. I have fatigue as my most limiting symptom. I have osteoporosis for which I am avoiding bone meds, and hoping that my diet, supplements and exercise will hold down. Have you a plan to manage your anxiety? Have you found the self-management on the PBC App a help?
gailann59 in reply to
One day at a time.. is my mantra. Yes I have lots of support and tools to handle anxiety. The PBC has lots of triggers to get me going, however. Osteo is nothing to fool around with either... Peace be with. Yes I found the self management quite helpful.
mrspeffer2 in reply to
Good morning...I wanted to share my personal experience with osteoporosis. I remember very clearly where I was and what I was doing the day I received a call from my doctor regarding this diagnosis. I was so bummed and scared as I had seen what happens with little old ladies who start to just seemingly crumble. So, I started looking at the options. The first one was pharmaceutical drugs. I always read side effects prior to agreeing to taking meds, so this was no exception. I decided that the cure was worse than the disease. I began attending more yoga classes to calm my mind and ease my anxiety, but also for the strengthening aspects too. Then, my husband, who has heart issues, suggested that maybe taking vitamin k2 would help me. I take large amounts of calcium due to the removal of my parathyroid during a total thyroidectomy. So my replacement dose is 3000 mg calcium daily,. I use a food based one with a perfect magnesium/D3 ratio. K2 helps keep the calcium in our bones and out of the heart. So, time went on with me being leery of climbing on rocks at the beach, looking for cracks in sidewalks much more than usual...just scared to move around, thinking, if I fall, I'm for sure to fracture something. Well, come next bone scan, I'm no longer in the "osteoporosis" range, but at the low end of the "osteopenia" range.
I'd like to think that the combination of diet, exercise, and vitamin K2 are what turned this around. There are many supporting documents available on the internet. Thought I'd share so you have some alternate path to explore. Be well
in reply to mrspeffer2
mrspeffer2 - Great news! Well done. That's what I'm doing. And wearing a weighted vest. And Tai Chi. And making my own kefir daily. I feel so much better for having more protein in my diet. In fact, I feel better than I did ten years ago. I'm working toward not 'needing' the bone meds I'd never take anyway, in one year! I thought the diet change may impact negatively on my fibroscan. It too is lower than 8 years ago. Fear is the crudest weapon in the entire arsenal of governments, and it now it seems, in health authorities. If I take a wrong path, I can live with it. If I'm shooed and pushed, not so much...
mrspeffer2 in reply to
Wow! homemade kefir...care to share the process? I drink goat kefir , actually the only dairy i can tolerate is goat. Anyway, I'm really interested in your recipe if you have a good one...thanks
in reply to mrspeffer2
I made decision to change my diet for the sake of my bones to get what I could from food rather than supplements. Luck was with me, no prob going back to dairy, and luck again, a local herd of milk and beef grass-fed cattle and organic free-range eggs, (not grain-fed) and fresh local kefir grains. (Ninjagirlwebb kindly gave me her kombucha recipe.) So, the kefir grains, start by adding a small amount of full-fat organic milk (250ml) to the grains, stir and leave, covered, at room temp, but not less than 17 or 18 degrees. This process speeds up when your grains adapt to changed environment. To begin, mine were ready at 48 hours, then every 24 hours after 7-10 days. So when the ferment suits your taste, (it can range from sweet to sour to fizzy,) sieve it into a bowl, put the grains in another jar with a portion of the sieved and top up with fresh milk, and off you go again. Over and over. (You can store them in a jar in the fridge if you want a break from making it) All kefir will be good, but this, from cows reared and grazed on 'protected' organic pasture is likely to be rich in natural K2 Mk4, and little else is anymore because the soil is deplete from chemical use. But it would still be worth making if you couldn't get such milk. I take my fat-soluble vitamins with kefir and both types of calcium through the day. I haven't tried natto and I find it easy to take a supplement of K2 Mk 7. I use it in a number of ways with meals and as an alternative to mayonaise adding all sorts. I thought I had a very healthy vegan diet. And I felt well on it. But this change has made a big difference to my energy levels. I've offered to friends - but you can take a horse to water etc....! I wonder if it would suit you? It is way more easily assimilated than unfermented milk. It is perhaps why I had no difficulty going back to dairy after a long break. BTW - I gave it a go with oat milk and almond milk. Both worked.
mrspeffer2 in reply to
Really appreciate your reply. I so enjoy informed, enlightened women. I live near Scottsdale Az, no graa fed dairies I know of that make sense to drive too. How blessed you are to have that resource nearby. Where do you live? I do the best I can with about 3 stores here. Some have what the other doesn't, the prices vary. The one thing I know for sure is I prefer to spend my money on clean, organic foods than not. Some people feel it's too expensive, but compared to what! Anyway...I will do some research about the kefir making process. Thanks again...hope your weekend is easy. Be well
in reply to mrspeffer2
mrspeffer2 - if you like cheese, matured Gouda is a good source of K2 Mk4. As you say, not worth travelling far to buy food. Whole Foods may deliver to you? My weekend - yes, thank you, and the same to you
My friend got the spoon theory tattoo
Never seen this before and as I don’t work (paid that is) as I’m retired I should have 6 spoons to get me through the day!! See to be a few spoons short some days 🤪 it is true as 4thplinth states that some people don’t get the PBC thing my youngest son thinks I’m a hypercondriac (can’t even spell it) and my GP commented yesterday after my latest blood results which were all in range since first diagnosed 10 years ago plus fibroscan showing no liver damage no fibrosis or cirrhosis (which I was over the moon about) what is going on, he must be thinking the same as my son . Hello people this is not funny
Hi
I've never seen this before but thanks for sharing !
Shropshire Star🌟
