Hey Poo,
Pacing? Yea, I pace the room regularly
I think you are correct though. I think my problem is that because I feel okay, I think I can and because my limits can vary wildly, what seems simple one day, can be overwhelming the next. Trying to pace around such a variable can be difficult to define. That’s why I need to read my own signs of pending doom. I get warning signs, but think ‘I’ll just finish this bit/task…’ and it’s that bit too much.
What I now try to do is break the tasks up into steps, then complete the steps I can, before I become symptomatic. Mentally, I can accept I completed ‘some’ steps, rather then looking at the entire task which I may not have fully completed.
And, OHH, I know the ‘Spoon Theory’ very well. I don’t like it at all, it’s all a bit too real. It used to be I had 2 speeds, Full tilt and stopped. Now, even 1/2 speed can be a bit much some days. My wife is a bit older (Lots older ) than me and I often gave her a bit of stick about being the ‘older’ generation Now, I’m the one having balance issues, eyes not working properly, memory issues etc and she’s OK. Tsk.
Who stole all of my spoons? I want that cupboard full of spoons I used to have
Hey Amos,
There’s a definition of stupidity: Doing the same thing over and over, but expecting a different result…
…and STILL, I keep doing it. What does that tell you???
At one point early on I’d convinced myself I was building stamina by pushing my limits. The reality was I was burning myself out, driving myself into the ground. I couldn’t see it, it was wifey who saw it. Then I collapsed, wifey then put her foot down and told me straight up “Stop it”. I was trying to get myself back to work, but she put a stop to that too.
Now, I ‘try’ (not always successfully, and that’s OK too) to do something each day. It may not be monumental, but do something. I have a decent sized yard, 1.5 acres, it takes a bit to keep tidy. I have a shed full of tools and bits’n’bobs to keep my mind occupied. For me, if I sit down and let my mind wonder and think about it all, it can lead me down some awful dark holes. I also know crawling out of those deep, dark holes ain’t nice. I NEED to keep my mind occupied, so I don’t go there.
Sometimes I remind myself that not all things are PsA…Many of my friends are ailing in other ways just due to the aging process that seems to “win” in the end. I tend to compare myself though, to the 95 year old Swede daily doing up-hill skiing while encouraging his mountain dog to keep up. Sigh…I’m just like him, I also enjoy a good sauna. Knowing limits tends to be an experience thing…accepting them is my big problem. When initially diagnosed, I genuinely grieved the loss of certain function and stamina, which was normal. The losses caused by something like PsA, requires a constant return to “grieving” the next loss of things that we loved to do. I admire people like @seenie, @Stoney, @Poo_therapy@tntlamb and yourself and more who take time and mental energy to use this safe place to dialogue with a genuine handle on life in the face of difficulty. This takes character, faith and fortitude. Living in despair is indeed a black hole, having hope each day is life giving. So, celebrate the small victories, whatever that “something” is…and some days all that gets done is opening the shed door, counting the tools and walking away…knowing that they are all there ready for another day! And none of us need to be the sharpest tool in the shed. It is really quite marvelous to live with pain, uncertainty, med juggling, lack of sleep, more pain, fear of deterioration, AND still say, “Life is good”! (I hope this is me talking, not the prednisone!) A big “thank you” to the folks at Ben’s Friends making a difference in individual lives
Was doing a flyby and caught this thread yup you certainly never know what life will bring or whats around the next corner. As many of you know Life became just too much on our Montana Mountain Top especially when our youngest joined the list of missing indigenous women and were suddenly raising 2 Grand Children.
We sold out and moved to tha pan handle of Texas. Turned out to be a great move on most accounts but not for the reasons we thought. My plan WAS that as my AS prgressed (The spinal fusion process started) a small one level house with no snow in small town great facilites would take the load off my wife
Well thats not how it went. The change in weathe, the heat. The humidity agreed with me. Yup the fusion is happening but in the right way so I have less pain than in 40 years. My soon to have been replace hip really likes no stairs or hills
But the move was perfect for another reason speaking of Rare Disease. My wife the future care giver got a surprise which sirta changed things. What was blown off as old age turned out to be a rare form of Polymyositis and anaggresive one. 100mg of prednisone/day a weekly transufsion of Rituxan, a MTX has her stabelized enough she is still at home with a less than competent caregiver. Her most recent muscle biopsies are srble with previous and no disease progression to the chest. I can get her up and down and one streched out she can get around. I do have a bath aid for her dignity. The main problem is groceries. NEVER enough and she need help when the 3 AM munchies com. Hopefully we can cut back the predi (100mg was not a typo) as her endriconologist, chairman of the endriconolgy dep at the Med School up the road, is about to have a nervous breakdown being as he says “her adrenals AND her thyoid” Gotta like him, he got me into the local Scotch club. The Walmart Pharmacist lives next door and brings both our scripts to the house. So all is good.
OHH… …now that’s funny, a handle on life? Some days it handles me rather than me having the handle or it all gets a bit overwhelming and I ‘…fly off the handle…’, say exactly what’s on my mind and offend everybody. For me, that ‘acceptance’ thing is on a sliding scale and some days it drags me to the bottom of the deepest hole known to man. I don’t want to accept ‘THIS’, the reality is I have no choice, but some days I fight like hell against it, burn myself out in the process, then kick myself for pushing my limits. Tsk. When you learn that ‘Full’ acceptance thing, can you please tell me how
Having a rare condition can be VERY isolating, others often don’t understand, how can they unless they have been in a similar position? I think the sharing of our experiences along this journey can assist others to reduce some of that isolation, ‘Ohh PHEW, So, I’m not the only one…’ The medicos have often made out ‘That’s not normal, It must just be you…’ like we choose to be here, we choose to be in pain. I think by sharing our experiences it can give other people differing ways to manage, different coping skills that they otherwise may not have considered. And by no means is it altruistic, in other words, I get as much out of sharing my experiences and reading others too, so it benefits everybody, me included. That’s a win/win and I don’t get many of those.
Gosh that surely wasn’t in the plan. But glad you’re on the level, without snow and your wife is stablising and most importantly you found a Scotch club. Hopefully the groceries get delivered too. Take care Tom.
Frankly I need to look out not in. But thank you for the lovely words. There’s nothing worse than festering in my own thoughts. And I truly refuse to live in any despair. And I can cope with just about anything once I can get out and play ball with my dog, even if I’m just standing in a field if I can’t walk far. And working helps enormously which is also about sorting out people’s complaints.
I’m blessed with an excellent rheumy though so I know and trust my meds progress, the analysis of my disease activity and its progression. So many people aren’t that lucky and feel far more adrift and alone with this weird and pretty awful disease. So I try and share what good rheumy PsA practice is and how to try and get your doctors to give it to you.
I am a demanding patient though and I deal ruthlessly with any crappy medical service. I’ve no time for the medics egos at all and I make that abundantly clear at every encounter. But when I receive decent care I make sure they know how I much I appreciate it. Or rather I make sure they know I think they’ve stepped up to the mark they should always be trying to attain given what they do for a living.
need help with nighttime stiffness and pain. just had my first shot of skyrizi. currently just got off a four week predisone taper so just have prescription strength motrin and tylenol with pain. the doctors are at loss! don’t want to put me back on predisone because of the taper but don’t want me to be in an uncontrolled state. any suggestions for me to talk to the doctor would help. trying third biologic.
That’s quite a move. I’m glad the change has had such positive effects on you. I guess the universe knew that you needed to be in good shape to take care of your wife.
That’s a boat load of change @tntlamb. Sorry to hear of your new challenges and hope you can find people to draw close and help in practical ways as time goes on. Pretty serious meds for your wife, maybe things will settle quickly for her. Good for you to open your home to give stability to your grandchildren. Will pray for daily strength in the amount you both need!
A 4 week course of pred will give you steroid kickback sadly where things will feel worse for a couple of weeks before things settle a little better. So you just need to plough through it. Your doctors should be well aware of what a ‘steroid kickback’ is and yes it happens even though you were tapered down.
There are lots better anti-inflammatories out there than prescribed motrin, ask them for arcoxia/etoricoxib or celebrex. I’ve told you about them before. And of course we’ve discussed the issues of getting better pain relief in the USA and the fact it’s virtually impossible sadly.
Skyrizi is an interleukin 23 inhibitor. These interleukin meds can take a long time to work for PsA. As indeed can any biologic. No Biologic reaches full effifacy until the 12 month mark. I’m on Cosentyx another interleukin med. It started working for me sustainably at the end of month of 8 after starting it. Before that it was a little hit and miss but definitely helping. But I’m now on it 4 years and it’s still working well. So sadly your first dose of Syrizi isn’t going to do anything much. I believe it’s first review date is 16 weeks too.
Zero point in trying yet another biologic as none of them will work fast for you. That’s just the way of it. Patients need decent anti-inflammatory meds and pain meds throughout the waiting period too.
Nightime pain and stiffness simply needs better anti-inflammatories and pain meds really. Are you taking the tylenol as prescribed as in every 4 hours?
yes having a plan helps i knew it would not work instantly for this is my third biologic but first time having a full body pain. this biologic has not been around long for PsA but the doctor is liking what he is seeing with his patients.
Hi @Rebel_mom
I haven’t been around here much for quite awhile. I got lucky with Enbrel 10 years ago and your story is exactly why I hope to heaven I never need to switch to a different biologic. I guess if things get bad the hopelessness takes over and it’s not that you want to switch, it’s that you need to switch. My psoriasis, especially on my legs and my nails, is always acting up, and many times my rheumy has suggested trying a different biologic for that reason. But I tell him every time I’d rather put up with a little psoriasis than end up with a new biologic not working for my psoriatic arthritis! So, I’m hoping Enbrel keeps working. And, I hope your new biologic kicks in and gives you good relief. I’ve aged and am 70 now. I was around 60 and a lot younger and stronger when my PsA was getting bad. IDK how much of that pain, stiffness and fatigue I could take anymore.
I’m sure it’s hard not to get depressed, but hang in there.
) than me and I often gave her a bit of stick about being the ‘older’ generation