GCA/PMR changes plans

[Spanky2019]

I've read many posts of other sufferers lamenting to do past activities. This post may seem crazy, sad or possibly familiar. I was dx with gca 8 months ago. I also have several other medical issues including osteoporosis & esophagus issues. In my young years I taught & wrote books on Aging. Lol! I'm probably a workaholic now being forced into submission. I can't/couldnt wait to wake up every morning & get busy on a project even if I didn't feel well. Love active work building things. I'm a very small person. Perfectly built for insulating attics, blocking/bracing support beams under houses & swinging off cables chinking/ repairing chimneys. Our kids/gkids laughed and at times were mortified at what grandma was doing. I'm 66. I'm maintaining my hope to do one more build - A log sauna. In my mind "a house isn't a home without a sauna" for an American with scandinavian descent. Miniscus tear in knee & cartilage tear in ankle is from peeling logs last winter. Can't be repaired until on lower dose pred. In reality I'm just now able to walk to the car b/c of gca & pred effects. Can't make it to the edge of the woods, not yet. This is not a disease for the weak or faint of heart no matter what your aspirations. Our hopes and dreams and activities may be different; but our reluctance, and the anguish of giving up old ways is poignant and grievous. Not the same to have someone else build it, carry it, run it do it. Difficult not to indulge in the hope for normalcy, and repudiate disease and weakness and it's effects on body, mind and spirit.

[SheffieldJane]

What a great post Spanky2019. There is certainly nothing wrong with your indomitable spirit. Hats off to you!

[Spanky2019 in reply to SheffieldJane]

Thank you SheffieldJane. You are such a lovely person and your posts are always so compassionate. I'm getting better in many ways and adjusting to the things I can't.

[Mary63]

Couldn’t agree more, and elegantly expressed.

[Hidden]

Your mind is obviously sharp! 🌻

[Spanky2019 in reply to Hidden]

Thank you Poopadoops. Just love your support through all these months. I'm feeling better in many ways. Just have to remind myself everyday how sick I was and be grateful for what I can do.

[Hidden in reply to Spanky2019]

Yes we have look back sometimes to see how far we have come. 😘

[Louisepenygraig]

I love your post. It's difficult isn't it. I've never been very strong and would have ups and downs in energy level but I used to plough through and get things done somehow. I never did 'run up' mountains as I fondly imagine but I did get to the top eventually. I have sort of come to terms with not doing too much 'up' any more, even my husband, at 73, has decided not to go up so high once he's done the last route on Snowdon that he has yet to do. Next time I go up Snowdon I'm afraid it'll be on the train! I do hope to go walking in the mountains again though and hope to get back to more, no dig, gardening. I never did go in for all the things you did but I was quite good at knocking things down and breaking up concrete and using the debris to build walls and rockeries.

[Spanky2019 in reply to Louisepenygraig]

So nice to hear from you. We're all so different in our interests, energy and even our responses to prednisone, aren't we. I hope you get to wherever it is or whatever you want to do with the modifications necessary. My husband is 74 & had total knee replacement 3 months ago. That slowed him down a bit too. Have a lovely day.

[Louisepenygraig in reply to Spanky2019]

My husband has had 2 hip replacements which is what spurred him to go up Snowdon by all the routes he hadn't tackled before! He's also done the Heart of Wales long distance footpath since then as well. Pity there isn't a fix like that for PMR

[Whitner]

Good for you Spanky2019 for working toward your goal! I’m 66 and a month into my PMR diagnosis trying to learn what I can and can’t do. I am still able to walk 2 1/2 miles every weekday without any real problems so I’m very thankful for that! I find I can do most everything I want but will have pain the next day. Hard to know when I’m overdoing it until the next day 🥴

[PMRpro Ambassador in reply to Whitner]

"Hard to know when I’m overdoing it until the next day "

Which is where keeping a diary helps - so you can learn YOUR limitations and know what you can manage without unacceptable payback. Avoiding the pain payback means that over time you will increase what you can do - because pain inevitably limits you for a while and can create a downward spiral. Maybe you can do the same amount but without pain simply by breaking up an activity into smaller bites - for example, I was able to walk much further by walking to somewhere, having an extended rest over lunch and then walking back.

[susieq051]

You took every word out of my mouth!!! Can't wait to get back to doing what I want. But it will take time. These disorders are not for the faint of heart.

[Devonspinner]

On I do agree on everything that you have said. I'm 66 like you. I am still going running 3 times a week but slowly and no further than 3 miles. When I get fed up, I tell myself that my mum didn't run after she left school! Sometimes I think we expect too much from ourselves . Keep smiling x

[Magnoli-a1]

I hear you well. Your words are my thoughts exactly. I was diagnosed in January 219 and suffered greatly until June with flares and pain, although I have to say that the 15 mg of Prednisone that the doc started me on, gave me a lot of my life back. In June, I began a anti-inflammatory/keto diet. That has been nothing short of miraculous for me. Although I am still cautious about doing as much as I did before, I have done hours of gardening, washed windows, cleaned house, do yoga and running and lifted 50 lbs of feed and hay bales for my horse, I have no pain and no stiffness. My caution comes from all the things that I have read here. I am now at 3mg of Pred and hope to be off of the med by January. My CRP is 1.6. There is hope. All the best.

[_multistrada]

I’m am absolutely with you 100% never give up

Martin

[PMR2011]

My PMR and GCA diagnosis turned our build a summer home on the coast in 3 years to a 5 year plan. I’m still moving rocks, swinging a hammer, pouring concrete, painting etc. Just at a slower pace and with a little more help. I figure we need to keep doing what we love albeit more thoughtfully! Go for it!

[Spanky2019 in reply to PMR2011]

Love it. Go for it a little slower, a little help, takes a little longer! Got it!🔨