Not so invisible

I started volunteering for an advice agency here in the UK a while back. After some pretty thorough training I'm now advising independently, though still need a lot of support to find information while the poor clients languish in the interview room - pressure!

There's a great bunch of people there so I really enjoy it. Plus I get to use what is left of my brain while being of some use to other people which is quite satisfying.

Thing is, others there have noticed that I'm up against it. Partly that's due to the bizarre 'dance' I need to do to get moving after sitting down awhile (thanks Jules for the chair yoga link - could prove to be a slightly more dignified substitute!) And also the supervisor's noticed that I get very tired after about 5 hours of frantic toil - which is not so bad, relatively speaking, but clearly although 'nearly in remission' I'm not the resilient person I was once and I don't have the stamina I can muster when I'm working at home taking breaks as and when necessary.

If only paid work always came with the same level of understanding. When people show a bit of concern, without cosseting me, that gives me a lift ... it's actually motivating and brings out the best. I feel a bit sad though, if I'm honest, that PsA's diminished me noticeably. But hey, reality checks - bring 'em on! Anyone else had a bittersweet dose of reality lately?

Hi Sybil,

You know I'm really, really new to this when compared to a lot of you guys. But I had that dose of reality you mentioned recently, when I went to yoga with my mom.

I've always been really flexible. And I used to do almost all of the yoga poses without much strain or struggle. The funny thing is - I'm still really flexible, the stiffness is only bad in the mornings. I forget the pain that will follow and touch the ground with my palms when my PT tells me to bend over a little, or I try making a perfect half circle with my body when she wants me to do the bridge pose - and she only means that I should lift my hips a little!

Anyway, when I went to yoga with my mom, I was a little scared of hurting myself after all that time of being inactive, so I kept telling myself "I shouldn't push myself... I shouldn't push myself...". And you know what, it took all the fun out of it! Not because I couldn't bend over or stand on one foot when I knew I could, but because yoga had always been about exploring my limitations - both body and mind. And there I was, limiting myself mentally and being limited physically by pain... At the end of the session, I couldn't even cross my legs for the meditation, because I was so afraid of the SI pain. And that one hour was both a blissful and a frustrating time for me! That's where I realized my limitations! That's where I realized I had to baby myself from now on...

So, that was the hard moment of truth for me. As I'm unemployed, no one has spent enough time with me to see the signs of my condition, and pretty much all I do is sit at home reading, so my experience is a little different from yours I guess :)

Ugh, it that you need to be in perpetual motion in order to not lock up like the Tin Man? Because you seem to not have much trouble walking! I imagine your volunteer job isn't going to be very enjoyable if you get so horribly stiff sitting at a desk for several hours. I'm lucky I have a desk job but I'm up and down a lot, so I don't get stiff at work.

Reality for me is knowing that there is never a perfect pain-free day anymore. Right now my feet are on fire. Earlier, my knees hurt when I played with our granddaughter. My fingers are stiff and painful from grasping my tablet. There's not a day that goes by where I don't have a certain amount of pain somewhere. Yes, it's nowhere near what it was before I started Enbrel, or when my back was out. But, it is disappointing to be pretty sure the rest of our lives we'll probably deal with pain even though our Enbrel or Humira seems to be working.

I think you have a great attitude, Sybil, and you seem to make the best of things! My bittersweet doses of reality come when my legs go slow even though my brain is saying speed up, I can't live without ice packs and a heating pad, and especially when my daughter tells me I worry too much about my health and I'm not the same fun person I used to be. :-(

Yeah, me too! Knees, feet, elbow !!!!!! Wish I'd know you were also awake we could have had a pow wow to while away the night :-)

Need the additional tiredness like a hole in the head today.

sybil said:

......... I've been having what for me are unusual levels of pain & therefore sleeplessness just recently ...... .... I'm all over the place as it's night time here (thanks for nothing knee and foot!) .......


I've been thinking a lot about the yin/yang nature of this disease lately. While on the outside I think my fingers look weird, apparently my Xrays came back A-OK. Same for my feet. And while I think that to my friends and colleagues I look fine (generally speaking), I know that's not how I feel on the inside. And if, out of nowhere, while walking, my hip goes all squiffy and I start limping, am I injured? Did I overdo it? Should I stop or walk it off? So if, on my better days, no one can tell I have a chronic illness, do I? And if people generally don't notice should I be surprised if they cut me no slack? And on the days that I'm not feeling up to much but I push on through, I suppose I shouldn't feel put off if someone says I look tired. Although it always sounds like I've failed at maintaining the pretense when I hear it.

I've been noticing how paying such close attention to everything going on within my body seems like a vocation of late and I have found that level of hyper-vigilance tiring. And kind of boring. So I'm focusing on shifting my language from "illness" to "health". Thinking about what feels good rather than what feels bad. And putting some thought into how my level of wellness makes me feel in my mood and attitude, rather than operating from a place of illness or disease marked by generating a baseline of pain level, inflamed joint counts and so on. I hope that the shift in language will also shift my thinking. TO see myself as a well person who has moments of illness and whose decisions about life are based on a consideration for how they will affect my health, my well-being.

Then this article was posted online to the Ben's Friends Facebook Mod site. And it so accurately and perfectly described how I've been feeling about how I've been feeling. What's Wrong With Me?

I hope your reality check brings some insights that help you. A heated blanket on my chair which wraps around my hips has made the world of difference to me at work. If they're warm they stay limber. If they're limber they will hold me up!

Flexible thinking is the only way to not punish yourself if your usual way of responding to things doesn't work. We are all usually used to doing things a certain way and finding that the solution we have concocted is more or less successful. But then conditions change. We are less well or suffering more than usual. Resisting the urge to think "well that didn't work" and trying to think "what can work" is a challenge for me. And now I must hike across campus for a meeting in the library. I don;'t feel like working out of late so this mile or so each way will be my exercise for the day.

Sybil, please don't talk bad about my very good friend Dr Google, we go way back :D

Actually, when my rheumy told me to bend over a little at my first visit to see how bad my scoliosis was, and I touched the ground (and I really didn't mean to, I mean, it's filthy, who knows how many people walk on it every day! yuck!), he checked me for hyper mobile joints. Turns out I don't have any, but I'm close :) I think it's quite common with rheumatic conditions, but then again I probably read it somewhere online, so I'm not sure. But I can see why it would be an issue with arthritis.

sybil said:

I'm all over the place as it's night time here (thanks for nothing knee and foot!) but interesting you mention flexibility as I was always very flexible too, with some hyper-mobile joints. I think Dr Google told me that's not great with inflammatory arthritis as joints therefore tend to be a bit unstable or something, but then Dr Google's full of it.

Loving the discussion going on here. :)

Is there a way you could move more at work? Take a lap around the office in between clients? I've found that when I have to sit for long periods, changing my position in the chair works really well - sitting back and relaxing a bit, sitting on the edge of the chair with my feet flat on the ground, etc.

I think I'm long past comparing my current self to where I used to be and just take each day as it comes.