Hello, there! I’m so happy to be back with a fresh video for the new year, all about the little things I’m doing daily to find hope:
Yesterday, I was feeling SO down. The world is just bonkers right now, and it’s hard to stay positive when I see bad news every single day. That’s on top of living with chronic pain and its unpredictable, totally sucky nature! So try as I might, sometimes I just get really low.
So yesterday I did a handful of things that really helped. Probably just one would have done the trick, but… I never like to do things halfway, so I did a bunch of them. This week’s #AWAPwednesday video shares all the details. I hope they inspire you to come up with your own list of hopeful activities!
*AWAP = As Well As Possible
Now it’s your turn:
What kinds of things are YOU doing to inspire hope in your day-to-day? I want to know! Tell me all about it in the comments below.
Want more #AWAPwednesday? Check out our #AWAPwednesday video playlist, which has more than 130 videos packed with practical advice, lots of humor, and bloopers. Lots of bloopers.
Is there a question I can answer for YOU? Add it to the comments below, or shoot me an email.
Until we meet again: Be AWAP! Smooches!
Hi Jenni can’t thank you enough for your inspiring video today was especially uplifting for me I’m truley AWAP Pastor a extremely difficult procedure on my neck yesterday today I am feeling painful but a lot better opened up the blinds and the sun is shining after two days of rain. You made me smile today thanks for YOU
oh hooray, clara! i’m so glad that you’re on the upswing. love the sunshine!
Hey! I’m new to your site as I just read about it in the book “Life Disrputed: Dealing with Chronicr Illness in your 20s and 30s”. I’m excited to learn more about your site, mission and how I can get involved! To answer your question about what I do to find hope…I put up pictures everywhere of trips (active fun trips of climbing mts and hiking) I was on before I became really sick, outings with friends and family, sports I was involved in, etc. Having the photos around helps remind me of the life I’m fighting for, once I get this somewhat under control, and reminds me there is more to life than fighting chronic illness. They also remind me that I’m more than my illness, that there are so many things about life that I enjoy and hopefully some day can be involved in again, in some fashion. 😃
oh, i’m so glad you’re here! that book really reaches a ton of people – i’m lucky to have been included. thanks for sharing what works for you. i also keep a wall of photos in my home, mostly pics of people i love, which help me remember i’m not alone. hugs!
I just saw your name on the Migraine World Summit page, which my cousin sent me. I’m a daily chronic migraine sufferer. They were gifted to me after having a brain hemorrhage at 48 when I was in the best shape of my life, super active, doing everything in life I’d ever dreamed of. Now I live with chronic pain, but dammit I still do what I want to; only it’s about 25% of what I used to do, but it’s still more than most able bodied people do. I run, rock climb, fall off rock walls, work full time (although I may not be able to do that much longer for my quality of life), run a small business on the side (that isn’t doing very well, but makes me happy), and seek every form of treatment for my brain pain.
I love the concept of AWAP! Some days the best I can do is fight through half a day of work and snug with my dogs in a dark room all afternoon. Other days my pain is light and I feel like I can fly.
What I do to feel under control on bad days:
-Music–if I can manage to sing, sometimes it’s uplifting music (La La Land soundtrack and Hamilton are favorites lately), sometimes it’s angry music because I’m mad. Singing along with head banging music when my day has been ruined can really help, even if it makes the pain worse.
-Planning another race or adventure that I’ll do when I know I can–since weather changes impact my pain a lot, I know that summer will be better so I can plan summer hikes or adventures.
-Helping others–One of the things that happened to me after getting out of the hospital was -NOTHING- I was sent home after a brain hemorrhage with a prescription for PT, a walker, and “You should be fine within 4-6 weeks.” In my mind that meant I’d be completely back to normal within 4-6 weeks, and yet I had memory loss, parasthesia, weakness, I was falling down, and I had intractable headaches. I also had no one to explain all these things, or to talk to about them. I never want anyone to go through that, so if I’m having a bad day but I can handle the computer, I will go into groups and talk to people, or check up on people who are going through head trauma or have had SAHs.
Alternatively, I will reach out to my support system who I met while going through this, God bless them. After posting about feeling alone on FB, friends would say “So and so had a stroke, let me put you in touch” and eventually I had a few friends to reach out to, who were lifelines.
-Snug my dogs. I have seven dogs, and I honestly know I have seven because of my brainpan. When I was in the hospital I had three. One, Dot, was even smuggled in to see me. When I realized my pain wasn’t going away I started to get severely depressed the summer after my SAH. A friend had some renters who left a dog behind. He became number four. A stray followed me home…my nephew needed a home for his dog…and we are fostering two others. But they keep me sane and happy when I’m in pain and give me something else to focus on. They keep me from depression.
It’s been five and a half years since the SAH and I’m still not used to living with the pain. There are still days I wonder if it would have been better if I hadn’t made it. (This isn’t a cry for help, just open and honest. I feel like people with chronic pain must have that “Why am I here?” feeling at least once.) Right now it feels like on the other side of the pain is all my possible, but at the same time I’m trying to chip away of that wall to reach it. I’m proud of that, but still resentful. My heart feels like it will always be here and I’d better get used to it (even though my doctors are still seeking treatment). My head still wants to seek the treatments, and has a little guarded hope because I don’t want to give up. I think my heart is afraid to get broken again since everything up to now has failed.
Thank you for this blog. I’m excited to read more. I know my situation is different. I hope that’s okay.
hi tory, what an awesome reply – thanks for sharing so much of what works for you! this is wonderful.
Hi Jenni,
My lower back and I are going through a difficult and painful time in our relationship.
I find that taking time out to deliberately relax helps me. I play the saxophone, so making music or listening to some relaxation music is one of my preferred options. Even siting down ( or in my case laying down on the floor) and having a bit of a Netflix session, or a massage, or a walk, or a large bowl of chocolate ice cream – a conscious bit of “me time” helps.
Thanks,
Matthew
(Melbourne, Australia)