Psoriatic Arthritis Journal - 2.5 year Update Page 63

[lmggallagher]

Hi Nicole:

This update and explanation was amazing to read. Particularly because I really understand so clearly how this treats you over time. As oppoed to tracking you day by day. I now get an idea of the ups and downs and how similar in some respects = post exertion we are!

also - oddly we were kind of doing the same post in some respects at the exact same time. As I was just over there - recalibrating what fatigue really means for me - as it's clear I have been doing it wrong

Now my perspective is still skewed. I still measure things by how much better they are compared to the bad periods of illness instead of my how I was before I got sick, but I am undeniably better and really to a very-high functioning point. For the most part, I would be fine at a regular job, except for that I still get really tired sometimes, and need to recover or I will feel badly - have more pain, perhaps even have a flare up. And the things that make me really tired like that are things that a "normie" could bounce back from waaaaay quicker - my mother has more resilience than I do! And by recover i mean it might take a few days of doing almost nothing, just hanging in bed. Looks lazy from the outside! Not lazy. My medicine.

Gezus - I was just realizing that exct thing. It's so helpful to know that we have to recalibrate our heads to match our bodies all the time too.

That said so sorry for those really bad headaches - I would like those to vanish permanently and immediately. Just get to complete detox and be done with those, okey dokey! OK dreamin is a good thing - would that it were so though!

((((hugs))))

[lmggallagher]

Hi Nicole:

This update and explanation was amazing to read. Particularly, because I really understand so clearly now how this treats you over time. As opposed to tracking you day by day. I now get an idea of the ups and downs and how similar in some respects = post exertion we are!

Also - oddly, we were kind of doing the same post in some respects at the exact same time. As I was just over there - recalibrating what fatigue really means for me - as it's clear I have been doing it all wrong too.

Now my perspective is still skewed. I still measure things by how much better they are compared to the bad periods of illness instead of my how I was before I got sick, but I am undeniably better and really to a very-high functioning point. For the most part, I would be fine at a regular job, except for that I still get really tired sometimes, and need to recover or I will feel badly - have more pain, perhaps even have a flare up. And the things that make me really tired like that are things that a "normie" could bounce back from waaaaay quicker - my mother has more resilience than I do! And by recover i mean it might take a few days of doing almost nothing, just hanging in bed. Looks lazy from the outside! Not lazy. My medicine.

Gezus - I was just realizing that exact thing. It's so helpful to know that we have to recalibrate our heads to match our bodies all the time too.

That said - so very sorry for those really bad headaches - I would like those to vanish permanently and immediately. Just get to complete detox and be done with those, okey dokey! OK, dreamin is a good thing - would that it were so though!

((((hugs))))

[moonwatcher]

I am kind of OK that I have this because it feels to me like the disease is regressing rather than progressing. Like it is a time-travel backwards or an unwinding of layers of illness. This is just how I feel about it, no science to back that up. I intuit that part

I love this, Nicole. Especially the "unwinding of layers of illness."
"Unwinding" is actually the name of a technique used in some forms of integrative manual therapy, too. Anyway, I can relate. In my last blog post, I even wrote about something I have done that I've NEVER been able to do with the hand affected by the cerebral palsy. So somehow I'm both time-traveling backward but also moving forward into completely new territory. It may be at an incremental rate, but it's still pretty damn miraculous.

Thanks for all you shared here.

xoxo

moonwatcher

[jamietwo]

Wow. What an outpouring of love and support. I'd like to add my ((((((hugs)))))). Nicole, you are truly one of my role models. Its amazing to me that not everyone IRL sees you the same way I do. I love your positive attitude, your willingness to share your experience, strength and hope, your encouragement, your beautiful pictures, your sense of humor ... and your "human-ness" when things get you down. Much love ...

[nicoles]

Michelle - I am glad to have your company in figuring out this fatigue thing at the same time! Thanks about the headaches. I don't mind the ocular migraines as long as I am not driving - they are trippy-ish fun - but the other migraines are not fun.

Moonwatcher, integrative manual therapy just sounds better and better! I have to go read your latest post - that is amazing about your hand! You are time traveling all over the place!

Aw, thank you so much, Jamietwo! I am blushing over here. I am so glad everyone is here, too. I love how we can all help each other here in this forum!

[moonwatcher]

Oh, Nicole, I loved that Back to the Future teaser!! I laughed out loud at the end! Those movies were among Mike's favorites when he was growing up, and we watched them together many times. Thanks!!

I'm excited for you to read the new post. And thanks for your comment on the yoga one. I'm just remembering now that we actually "crossed" late last night--you were commenting there while I was commenting here!! I was too tired to respond, but now I'm remembering so will hop over to say thanks. Getting ready for another level of time travel. . .the wedding. . .I leave day after tomorrow morning. . so much to do!!

xoxo

moonwatcher

ps: and yes, manual therapy was a pretty darn fascinating experience. . . . .I'm still "unwinding" it. . .

[nicoles]

Right on, MW, we all love BTTF's! DH owns them all and puts them on whenever he needs cheering up

This clip from the movie Samsara is, well, depressing. It would be worse if I were eating meat still. The movie itself looks pretty breathtaking, however.

[moonwatcher]

Thanks, Nicole, love the thought of you and DH watching all the Back to the Future flicks. I have exhausted myself from trying to prepare for this trip--time to sleep! We leave tomorrow morning, so to be continued!! So excited about it all, but now must rest.

xoxo

moonwatcher

[nicoles]

Update to my Update the other day - I forgot to add that I can:

Go hiking 1-3x a week

Sometimes walk more that 3 miles in a day - 3 is the minimum, although it took a couple of months to build up to that.

Do yoga either daily or alternating daily, including: Standing poses - Mountain, Mountain with arms up*, Warrior II, Extended Side angle pose*, Triangle pose*, Tree or baby Dancer pose (balance poses) Warrior I, Parsvottanasana*, Prasarita Padottanasana, Downward Dog*, Standing forward bend, some sitting hip and hamstring stretches*, a seated twist*, a supine leg stretch and a supine twist, and legs up the wall *(Easy inversion that is not as intense as a shoulder stand or a headstand, but is quite restorative and has similar benefits to the immune and endocrine systems) and Savasana.

NO sun salutations yet, though

* Modified versions, not the full deal

[Lesliec1]

How do you do a modified down dog? With hands on blocks? Or on furniture? What prevents you from the full one? hips? Just curious. Id like to be able to do this stretch.

[nicoles]

Hey Leslie - I need to modify the Down Dog because my arms are not very strong (since my calves and hamstrings got tight, they tend to push too much weight forwardon the arms for me to really carry)

I do two things to modify it:

1) I use the wall as a brace, by putting my hands right at the corner where the wall meets the floor, but my palms are on the floor, like so:

*That is not a picture of me, it is from this excellent page with many good yoga modifications listed for many poses

2) I wrap a strap that is tied to shoulder width around my upper arms, just above the elbow, and press out on the strap when I am in the pose to add strength and stability to the arms, and also to help keep the elbows straight, like so:


* this is also not me, but is from this fine post on modifications and exercises for tight shoulders/weak arms

[Loveskale]

That is so great to hear Nicoles, way to go!!!

[nicoles]

Thanks LK!

[nicoles]

I love astronomy and space. I love beautiful images. And now I love that there is a new astro-camera that can take pictures of the universe sharper and clearer than anything seen before.

See what I mean?

[jamietwo]

Wow! Way to go with your hiking and yoga, Nicole!