PsA has challenged me in a number of ways, none of you will be surprised to hear that! One of the least significant things is the struggle I have with monitoring my disease. I lived for 50+ years (depending on when I date the onset from, another tricky thing to pin down) with a body that was fairly predictable and therefore I can't entirely grasp the unpredictability of PsA's effects & tend to veer wildly between thinking I'm cured & thinking I'm going to hell in a handcart.
Then there's the meds. Some of them work so slowly that by the time something improves I've very nearly forgotten that the problem ever existed. Just occasionally though, something happens that acts as a marker, a milestone.
Every morning for nearly 3 years I've tried to take all the stuff I may need for the day downstairs. I rarely manage, but I've tried. The days of having to crawl up stairs are long gone, but it has remained more difficult than it would be without PsA, though I don't think anyone else would have really noticed lately. Then, last Saturday, I forgot to bring down x, y and probably z as well - brain like a sieve! Same old thought pattern "Damn, should have fetched them down first thing". Followed by a little revelation "Does not matter! I'll just pop upstairs if I need anything". That's right - 'pop up'!
It's just occurred to me why this new stair-popping ability seems so significant. Quite a while before diagnosis I started to really struggle with the stairs at school (I was a teacher). I remember one member of staff saying "You all right dear?" In what I took to be a very patronising manner, as if I was doing an impression of a centenarian for fun. It was all the more humiliating because at the time I hadn't clocked that there was anything wrong with me either. I've come a long way, I really have.
Isn't it wonderful when you realize that what had been so challenging is no longer? I have kids, so I frequently send them on the stairs errands, mostly due to fatigue. And yes, my steps are littered with things that need to go up or down. The kids still are not fully trained to move things.
It is definitely a catalyst for change, whether we like it or not. Stairs are a biggie. I used to have a second story office area. I remember the night I came home from the store and my husband and son had moved my office and computer into the family room on the main floor. I was furious. I took it as them being mean and it humiliated me as well. Up to that point I had always considered myself strong and athletic. It took a while before I finally accepted that they were just trying to be kind to me. They were tired of watching me do that centenarian impression as well.
I wish this was like facebook and I could LIKE or even LOVE your post!!! It really is the little things, the little progresses.
I know how you feel when I first get out of my car in the work parking garage after a one-hour commute, my legs are so stiff I'm walking like a robot to the building. So many days someone will say, "Oh did you hurt yourself, why are you limping" and of course I don't want to give my life story. So I just say I hurt my knee. LOL
That is awesome, sybil! Sometimes the little things are actually HUGE things!
As my health declines (ankylosing spondylitis issues - currently undergoing testing), I'm on crutches or in a wheelchair most of the time. I still walk around my own house, where I can grab onto things, but have stopped doing laundry (in the basement) and am limited to what I can do. With my neck issues, even computer time is at a minimum (not to mention my kids need "my" computer for homeschooling purposes since our other computers are broken), but I'm always excited when I can get on and get things done for our church's Tuesday Night Sunday School because I can be a huge help to them with minimal effort on my part - and I get to use my creativity, which boosts my mood.
I found that finding the right Yoga instructor and practicing easy gentle Yoga exercises for balance & strength gave me back a lot of my mobility. All seemed hopeless before that.
nym said:
That is awesome, sybil! Sometimes the little things are actually HUGE things!
As my health declines (ankylosing spondylitis issues - currently undergoing testing), I'm on crutches or in a wheelchair most of the time. I still walk around my own house, where I can grab onto things, but have stopped doing laundry (in the basement) and am limited to what I can do. With my neck issues, even computer time is at a minimum (not to mention my kids need "my" computer for homeschooling purposes since our other computers are broken), but I'm always excited when I can get on and get things done for our church's Tuesday Night Sunday School because I can be a huge help to them with minimal effort on my part - and I get to use my creativity, which boosts my mood.
Exactly! We are like two different people Before and After loosening up!!!!
sybil said:
Of course! Car journeys .... long journeys started stiffening me up too, possibly as long as 15 years ago: getting out at motorway service stations, advancing towards building aged 125, then returning with the coffees in an age-appropriate manner. Got a lot worse in recent years but definitely goes back a while. Now I want to go on a long trip ASAP to test that out too!
We so don't need any comments first thing in the morning. Sorry about those thoughtless types.
Faye said:
I wish this was like facebook and I could LIKE or even LOVE your post!!! It really is the little things, the little progresses.
I know how you feel when I first get out of my car in the work parking garage after a one-hour commute, my legs are so stiff I'm walking like a robot to the building. So many days someone will say, "Oh did you hurt yourself, why are you limping" and of course I don't want to give my life story. So I just say I hurt my knee. LOL
After 2 years of pain, I started using Enbrel 6 months ago and have had significant improvements. Your post reminded me of how things change and you don't realize it, until you start to feel a little worse again. On days when I feel more aches and pains, I remember the little things I struggled with. Just a few months ago, I could hardly stand and hold my youngest children in church. I dreaded buckling and unbuckling their car seats. I couldn't walk around the office without limping. There were days I just looked at the computer wishing I felt like typing. I would go home and spend the evening on the couch while my wife fed and bathed the kids. I stopped cooking. I also avoided the stairs, and still do a lot of the time. PsA affects a lot of little things, which combined are a BIG deal. I'm thankful to be doing much better, but your post reminded me to be more thankful.
Oh and as far as your question is concerned; standing to cook…didn’t realise until fairly recently that I’m now standing the entire time when cooking instead of sitting every few minutes at the kitchen table
Stair popping is still awkward but because of breathlessness not pain. Have only just admitted the breathlessness to anyone now that I’ve found out it is due to some fibro effects and not that I’m grossly unfit!..honest guvnor!(sorry, Brit humour)
Hi Faye, well as far as meds relating to PsA I’m on 25mg subcutaneous injections of MTX, Arcoxia, and Amitriptyline (plus a huge dose of humour!) and the Rheumatologist says my PsA is in remission now and has been for a good few months. Still have quite a few issues which seem to be relating to Fibromyalgia which I’ve only fairly recently been diagnosed with so am still at the “suck it and see” stage with meds.
sybil - I didn't take it that way at all (about mobility issues). :) I have no problem with my crutches or Ziggy (my wheelchair) and actually gave them both a makeover recently. No boring metal crutches for me! LOL
Lousie - great news! Sorry to hear about the fibro diagnosis throwing a wrench in your PsA remission celebration!
Cooking - I rarely stand at the stove to cook. I make many meals in crockpots and leave the meals that require standing at the stove to my kids. Many times they'll whip up the sides to go with my crockpot chicken or the like. :)
I’m in the UK Faye, I know there have been concerns in US about safely of Arcoxia (etoricoxib) but its worked very well for me where other Antiinflammatory meds haven’t…my feet were so much better within a few weeks of starting it
Faye said:
Awesome Louise! Thank you! I don’t think we can get Arcoxia in the US market it isn’t approved by the FDA or are you in US?
Cooking, for me, was the last thing I had left that I felt really good about. It seemed like even if I couldn't work or clean house, or do all the other things I used to do to be supportive of my family, I could still cook. Unfortunately seems to be going by the wayside now as well. I am no longer able to stand and prepare some of the elaborate family favorites...but I am making adjustments and doing what I can. My mother in law bought a stool for me to sit on while prepping and cooking, and she also got me a pressure cooker (that thing is AMAZING). I also recently bought some new knives that are designed for people with mobility issues - but I got them for myself for Christmas, so I have to wait. Often if I'm feeling really rotten my kids will do much of the prep work (chopping, slicing, dicing: these things are impossible with ouchie wrists and fingers!) and will sometimes go all out and make a meal. I have noticed that I have been injuring myself an awful lot during food prep in the last few months - cuts, burns, etc. - almost every time I try and cook something. I currently have 4 pretty deep cuts on fingers, and about 6 spots that I burned last night when trying to brown the stuffed cabbage rolls in the pressure cooker. Makes me wonder if I might be better off using only the microwave and toaster!
My mother in law used to cook once a week in order to give me a break, but she is having some serious health complications herself and hasn't been up to it, so now she buys dinner once a week for us. Oh...FYI, my mother in law lives with us :)
I can't wait until my PsA gets sorted enough that I start feeling like I'm making some progress. I'm so glad you all tell us these things so that we have something to look forward to! And Sybil, I am truly truly happy that you are feeling better and making progress. Gives me hope for the future!!
<3 Music to everyone's ears! Humira is working well for you! It is almost unbelievable that one can go from barely able to make a flight of stairs to climbing them without difficulty! And, just from that little concoction some smart people in a lab brewed up from mice embryos and/or who knows what weird mix of chemicals and secret ingredients. Lol j/k !!! But, again I say, its nearly miraculous when you can go from feeling like your body is slowly crumbling to feeling really alive again! That's how Enbrel has made me feel, too. The biggest improvements are in how my hands and feet were swollen and sooooooo stiff. I used to hate at night waking up to such stiff fingers and stretching them so they wouldn't lock up completely. And, they look skinny now--I can see the bones in the tops of my hands and feet!
Shopping and carrying my purse was such a pain, too, and now I don't even notice it!!
It is a few little things that make a heck of an improvement on the quality of life! Especially when you never expected you could feel so "normal" again.
Great discussion, Sybil. Would you also say that somehow humira has raised your spirits, or didn't you have that feeling of almost being depressed?
Bless you Grandma J & I'm so happy for your improvements with Enbrel especially your hands and feet! I may have to take the plunge soon myself. Faye
Grandma J said:
<3 Music to everyone's ears! Humira is working well for you! It is almost unbelievable that one can go from barely able to make a flight of stairs to climbing them without difficulty! And, just from that little concoction some smart people in a lab brewed up from mice embryos and/or who knows what weird mix of chemicals and secret ingredients. Lol j/k !!! But, again I say, its nearly miraculous when you can go from feeling like your body is slowly crumbling to feeling really alive again! That's how Enbrel has made me feel, too. The biggest improvements are in how my hands and feet were swollen and sooooooo stiff. I used to hate at night waking up to such stiff fingers and stretching them so they wouldn't lock up completely. And, they look skinny now--I can see the bones in the tops of my hands and feet!
Shopping and carrying my purse was such a pain, too, and now I don't even notice it!!
It is a few little things that make a heck of an improvement on the quality of life! Especially when you never expected you could feel so "normal" again.
Great discussion, Sybil. Would you also say that somehow humira has raised your spirits, or didn't you have that feeling of almost being depressed?
Well if I can fly over the pond one day and try Arcoxia I will! I have good luck with really only one antiinflammatory - Mobic also known as Meloxicam.
Louise Hoy said:
I'm in the UK Faye, I know there have been concerns in US about safely of Arcoxia (etoricoxib) but its worked very well for me where other Antiinflammatory meds haven't.....my feet were so much better within a few weeks of starting it :) Faye said:
Awesome Louise! Thank you! I don't think we can get Arcoxia in the US market it isn't approved by the FDA or are you in US?
I agree, Sybil. While there are days that are clearly sent to try my patience, they are just that: DAYS. Not weeks or months. Just simply a day or two here and there. Cooking is not a problem and cleaning is no problem either since (a while ago) we decided that my illness made being predictably well and not fatigued enough to clean every week and now have a cleaning lady twice a month.
I think one of the things that happens is that you find yourself so sick and debilitated that you get grace and humility (eventually) about your illness and you learn to accept your limitations. Equally, as you get better and your limitations decrease and you feel well enough to take on new things or resume old ones, the grace and humility you've learned don't leave you. So you might find yourself not recognizing that you can do more as you've become habituated to doing less. It is in those small moments of realization that the Pyrrhic victories over PSA are won. One trek up the stairs, one load of laundry, one stove-top dinner, one walk in the park, one day wearing shoes with laces instead of slip-ons, one yoga class, one date with friends, one good night's sleep at a time
