Fall is one of my favourite seasons here in Northern Ontario. I love late summer and winter too, but since getting ill, I don't get outside much in the winter to enjoy it. So I think late summer and fall have moved to the top of my favourite season list.
I'm just posting some photos from the fall. Some from the cabin trip a few weeks ago and others from an outing to a nearby spot.
I had a terrible crash-day on Thanksgiving after my outing Sunday. I just seem to have no stamina for any outings (wi
thout crashing); however, on a positive note, I have found I feel less fluey and weak lately if I just lay around all day. If I do virtually nothing, I've been feeling a bit better.I guess my concern is deconditioning. I've been doing a fair amount of reading on POTS, and one of the main treatments is exercise. Further, deconditioning can exacerbate POTS. It's a bit of a catch-22 isn't it?
On the days I'm able, I've been walking a gentle half block - even if I've spent the rest the day in bed. However, this hardly feels like exercise.
Final thought/question? I finally went and got fitted for my medical compression stockings. I'm wondering if anyone has had success with these for POTS symptoms?
They were very nice in helping me at the store, but only one of the women was familiar with OI. She said she'd fit a female teen with medical stockings for OI (orthostatic intolerance).
My Dr. had indicated 30 mmHg compression and the saleswomen put me in the 30-40 rather than 20-30 because she said for OI, more pressure was probably better.
Funny anecdote. Even after a couple minutes standing to get measured, I noticed my hands had pooled blood - they were purple. Blood pooling in the feet and legs makes sense but in the hands? Has anyone heard of such a thing?
Hi upnorth ~
ReplyDeleteI just googled what you wrote about and up came a forum at Phoenix Rising about blood pooling in both hands and feet. Most had only blue feet but others did speak of blue hands too. It might be worth it to go their site and see what comes up.
So sorry things are so tough. I know 1/2 block seems like nothing, but for me it is my goal for next spring! It will improve and a little is better than none! Hang in there..
and thank you for sharing the pictures. They are beautiful!
Renee,
ReplyDeleteI'm sorry you're not able to walk at all. I hope I don't sound insensitive when I complain how little i can do.
I find it so hard not to be bitter about my situation...I thought I'd do so much with my life: career, family, adventure. Instead I lay in bed feeling so ill.
But I realize it could be worse. How do you deal with being homebound? You are able to do a little yoga and such, right? Are you bed bound or horizontal most the day?
I have M.E. friends younger who are also in wheelchairs or bedbound so I know I should feel grateful about what I CAN do.
I'll do a search on Phoenix Rising, thanks for the idea.
I get the blood pooling in my hands too. I also got the 30-40mmHg stockings. They do help me to stay upright longer but I find that I always get a crash the day after wearing them ... I guess it's because wearing them allows me to do more and my body can't actually take me doing more .. like you said, catch 22 ... Hope they help you!!
ReplyDeleteHi Upnorth
ReplyDeleteBeautiful pictures...thanks for sharing them.
I'm glad you've mentioned the deconditioning thing and POTS as I've been wondering about this very thing. It is a catch 22 for sure.
I hear you too about the little bit of exercise not really feeling like exercise. I've been trying to forget what I used to be able to do and focus/celebrate what I'm able to do/increase now. Easier said than done...this illness is for the birds...it really is.
LeeLee,
ReplyDeleteThat's an interesting point. I remember my specialist telling me when she put me on the anti-viral "now if you feel better, don't go out and do more!". She said it would be like a false improvement and my body wouldn't necessarily be able to handle more activity even if I felt better.
I'll try to be conscious of that with the stockings. the POTS has been really pretty serious so that I'm horizontal close to 23 hours a day....if I do stand, I have to move or I get dizzy and sitting seems as bad as standing.
I'll let you know if they help.
At home on the Rock,
ReplyDeleteI've been telling myself "it's movement", not exercise...it is so hard when what I really want to do is run, or hike or swim etc...? Isn't it? Are you able to do any exercise/movement?
Upnorht~ Please do NOT apologize for sharing how you feel about not being able to exercise the way you used to and feeling like a half a block is nothing...believe you me, I wish I could walk alot farther!! I am so deconditioned and maybe that is part of your worry. I have a friend who made sure she took a short walk every day even if she spent the rest of her time in bed and she is doing much better in her recovery than I am. That may be why!
ReplyDeleteI can be up quite a bit now since the end of August. I sit in my recliner with my feet up alot of the time inbetween trying to walk around the house and sometimes go up
or down our 17 stairs to the bedroom once besides bedtime. So I do walk more than I think....I used to be flat on the sofa all the time and needed help with showering etc. I hope you find some answers at Phoenix Rising.
We all understand completely, upnorth about how you feel and I think that being able to share it with all of us is really important. Thats what makes our community here so great.
Upnorth -- For me it's walking .... I used to walk (very briskly) 5 miles a day...and that was after a full busy day. I never gave it second thought and a brisk walk helped me unwind. Night time was my favourite time to walk...after dark, under the stars. When I first got sick, walking from the bedroom to the living room was a challenge for me.
ReplyDeleteI have made some recovery. Some days I think a lot other days I think barely any. I guess it's all in the way I think about it. If I compare it to what I was before I got sick.....I'm only at a fraction of that. If I compare it to where I was when I was sickest...well I guess I've improved a fair bit. I started with walking lengths of my bedroom and the slowly increasing it.
I can now walk a short distance outside. One night though I was feeling amazingly good....so I went for a long (to me) walk. It was a beautiful night, refreshing ocean breeze, clear night and lots of stars. It felt good inhaling that clean air. Way too much though...I started to feel it before I got back. It went down hill from there and I spent the next two days flat on my back in bed. A real challenge to balance the not pushing it and keeping some level of activity.
I agree, Renee, about having a community where I can express my pain, I just didn't want to seem insensitive is all. I cherish you vitural friendship by the way.
ReplyDeleteIt does sound like you quite a bit more walking just in the house than I do. I usually don't crash from my gentle 1/2 blocks unless I do other things as well during the day. I wish I could find a way to sit up more...
If I'm really crashed I don't walk...but I don't want to loose more function than I have already lost if that makes sense.
Hi UpNorth, I've read your blog for a long time and am finally commenting. I certainly know how upsetting it is to have out of bed time all planned and then a friend calls on the phone and uses up all that long saved energy time ----- I sure felt for you when you wrote that recently. ---- I'm wondering if even getting those elastic stockings on takes too much energy, some of them take strong arms, so hope they help you. Thanks so much for your blog---- Leah
ReplyDeleteI do not have POTS as people have come to know it. I have the opposite. If I stand for too long my blood pressure soars. When I first stand it goes from 120/70 to 145/90.. no biggie really. But the longer I stand, the higher it goes. They stopped the tilt test at 221/191. Immediately put me on clonidine. It still happens but not nearly as much. I kept falling to my knees loosing a few minutes and not remembering doing it. They explained it like having mini black out's and my brain was trying to overcome the demands of my body so it would shut down. I have to be careful about how long I stand still or am on my feet moving slowly. I know i'm in trouble when I start seeing white dots everywhere. I'm adapting but it's not easy.
ReplyDeleteHugs and never feel bad about speaking your truth! tammy
Leah, thanks for stopping by my blog and aslo commenting. Yes, I wonder how much those stocking will take out of me, even just putting them on? I'll post an update here. Actually going down to get measured took a couple months because I've been bedbound and the very occational outing have been for pleasure.
ReplyDeleteI hope you're doing OK these days? I'm guessing you have M.E. too?
Tammy, that's interesting about your BP...I'm glad you were able to find something to help...sounds scary.
ReplyDeleteI wonder, though, if it's also due to messaging. (one theory of POTS and M.E. is that the messaging from the brain to the heart is not working correctly)
Absolutely gorgeous photos!!!!
ReplyDeleteYou know I love the outdoors as much as you do, and I also love photography, so I really enjoyed your pictures here. My favorites are the sunset and the close-up of leaves, etc....but they were all just beautiful. Nature is just so calm and healing, don't you think?
Yup, we are a bundle of paradoxes! Exercise makes us sicker but getting out of shape from not exercising also makes us sicker. What are we to do? I have found that gentle yoga helps - I stick to poses that are sitting or lying down on my bad days. Studies show that yoga does help to build strength as well as improving flexibility. I still have to be careful not to do too much, though.
This is why beta blockers have helped me so much - by keeping my heart rate down, they allow me to exercise (still cautiously and in small doses) without causing a crash.
I have compression knee socks. I wear them when I fly but not much else. Jamie and I didn't notice a big difference but these are just generic compression socks, not specially fitted stockings.
I hope they help!!
Sue
I didn't go through the comments but wanted to share that the stockings, I don't wear because they're such a pain to put on! However I feel they have been a savior when flying.
ReplyDeleteI also get blood pooling in the hands- especially when I am very still-