My latest attempt to go outside took a new level of creativity, which involved a massage table and a lot of scooting.
In the last year or so, I haven’t been well enough to walk or use a wheelchair. Orthostatic intolerance, or POTS, makes me sicker the more vertical my body gets. Putting my feet on the floor and trying to stand up usually sends my health into a tailspin. Logically, and as much as I love and miss walking (or at least putting my feet on the floor), I try to avoid it for the sake of my health. That’s at least until I start to feel better.
It wasn’t a perfect solution, but using a massage table gave me the chance to keep my feet elevated and still get outside. Or at least halfway outside.
The problem was: The deck on my side of the house was higher than the floor in my room by half a foot. Every time I wanted to go outside in my wheelchair I couldn’t because the deck was too high. Basically whoever built the deck wasn’t big on consistency.
For awhile I was well enough to take my wheelchair to the other side of the house and go out through the sliding glass door. But in the last couple years it became too taxing. By the time I’d get outside I’d feel sick and need to turn around.
I thought about using a threshold ramp to get the wheelchair on to the deck, but fitting it in my small room at such a steep incline would have been useless. That’s when I realized that if I wanted to go outside anytime soon the deck would need to be lowered. Lowering the deck sounded like a nightmare, or at least a lengthy, noisy process that would happen right outside my door. In the end, it was all of those things, but it was also worth it. Eventually the deck was lowered. Then all I had to do was get myself outside.
The first step was getting my bed as close to the French doors as possible, then my mom pushed the massage table against my bed perpendicularly. Next, I gingerly scooted along the table, but found it less tiring if I was horizontal and on my side. It took several minutes, but finally I scooted all the way to the other end of the massage table.
But, after all that effort, my legs were still inside my room and my torso and head were outside. It wasn’t the best view — all I saw was the inside of my room. I had essentially gone outside to look inside. But when I turned my head and looked outside I could see all kinds of things I had missed when I was stuck in my bed. I could feel the cool breeze swirling around me; I could see hummingbirds buzzing around a tree branch above the roof. I didn’t realize it until later, but it was the first time I had been outside in two years. The last time was in the summer of 2017 when I was able to use a wheelchair for upwards of an hour. Now, two years later, I have to be more creative to escape the confines of my room.
It was refreshing to go outside and see the view I’ve been looking at from my room. For such a long time, it had been an untouchable world. I had forgotten what it felt like.
The down side was that I didn’t have anywhere to go. The massage table, with me on it, was too heavy to move, so I was sort of stuck there, halfway in and halfway out. But, because I’m stubborn or determined or both, I decided I had to get myself all the way outside. So I slowly lifted myself up on the massage table, sat upright, and swung my feet to the edge of the table so my whole body cleared the threshold of my room. I was outside. I was vertical. It felt good. Triumphant. Then I blew it.
I should have had my moment, savored it, then laid down and scooted my ass back to my bed. Instead, and here’s where more stubbornness comes in, I stayed upright and used my upper body to lift my lower body across the massage table and back to my bed. My body wasn’t happy about that. It felt like a boxer used me as a punching bag. But, a few days later, I recovered and tried again. This time mostly staying horizontal. It went better. My body didn’t hate me as much.
Overall it was a success. But one that can, and hopefully will, be improved upon. To make it easier on my body I’m looking at getting a lightweight gurney on wheels. It’s expensive for a gurney made of PVC pipes, but if it makes getting outside easier, it’ll be worth it. And I’ll be sure to let everyone know how it goes.
BEFORE YOU GO…
1. Thanks for reading!
2. If you would like to donate to support this blog I would be so grateful.
3. I am fundraising to pay my medical bills and if you’d like to help out by buying a shirt or hoodie I’d be equally grateful. I get about $5 for every shirt sold.
I am so sorry that just getting outside is so very taxing for you but it was cool to see part of you out in the fresh air……….I prayed for you this morning……….bless you.
I am sorry that this bit of progress took so much out of you, but it sounds as though the benefits far outweighed the struggle. For this, I am truly grateful. Thank you for sharing with us.
Way to go! You look like the cat that got the cream (in a small way) 🙂 I did something new for the first time too, went dating, ended badly, like your first try getting out, but will try again. Enjoy the fresh breeze amap x
Getting outside is psychologically necessary. We keep trying.
Yay Jamison! So nice to see that smile.
Great news! The things it takes for someone with ME to do something as simple as get outside…. So glad you made it though. Just a thought on the gurney table thing. Could you get someone to approach schools/colleges to take on the challenge of building you one? That way it would be free. Fingers crossed you get to go outside again very soon.
So great that you got outside. I know how amazing that can feel. Recently, thanks to my husband, I was able to get to a lake for the first time in over 20 years, and just lie there. It was heaven. I’d like for every doctor who tells us we are depressed, to read your post. A depressed person mostly loses the desire to do stuff. We’re the opposite. We desperately want to do stuff–like just get outside and enjoy nature–but are often too ill to do so.
Good for you, wishing you many more trips outside without pain 💖
This makes me smile, big time. I especially like your half in half out picture. I have this image in my brain of a fold-up stretcher rolling downhill a wee bit too fast, and you curled up in a ball because of the motion. YIKES! Can you imagine? I think you decided to break free of your room to find a new view. Bravo.
Hello.
So nice to meet you and follow your posts. I’m an occupational therapist that happened to learn about you. I couldn’t help but thinking that you can have a better everyday life. Instantly I thought that I would give you a lift in which you can transfer to and from bed with the help of a caregiver but with minimum effort from your side. And a comfortable electric wheelchair which you can drive just by using the tip of your finger, again requiring as little effort as possible from you. Moreover make your home wheelchair accessible and more practical. Maybe then you can save your energy in order to get outside or even manage to move inside the house for a while. Off course all this requires enough space. I was so happy to see you get outside. That smile! I’m so sorry for writing this to you, I’m sure that the solution to your situation is not that easy, but I couldn’t help but thinking what I would do for you. I live in Sweden so please forgive me if I’m suggesting things that don’t really work in the same way in the US. God bless you. /Gina
Have you looked into the Medical Medium? His chronic illness treatments are life-changing and all natural. I highly highly encourage you to look into it if you can!
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