So I’ve been told many times that I don’t look like I’m disabled or that there’s anything wrong with me. However, after a stint at the Ottawa pain clinic in their month-long program, I realized that even though others may not classify me as disabled just by looking at me, it’s better for me and for my long-term well-being to accept my limitations and to try to work around them rather than getting frustrated and very angry that they wouldn’t go away. It just became so pointless to try and fight what was going on, so that program taught me that even though I don’t have to give up, I can learn to live within my limitations and to try to work around them as much as possible.
One of the things that I’ve had a real hard time with (one of the many things) is learning how to do daily tasks like using the computer or being creative despite my limitations. Recently, I started trying to use dictation software again – I used Dragon Dictate while I was doing my masters degree to help me with taking notes out of textbooks, but I haven’t used it much since. I can’t really write by hand anymore, nor can I read books unless they’re digital so that I can view them on my computer screen at eye-level. Dragon Dictate is a great program, and I’m really enjoying the fact that recently Mac’s OS X Yosemite has introduced a lower level version of Dragon Dictate (also created by Nuance) so that I can actually speak to the computer and have my words recorded that way rather than using the keyboard. Even right now, this paragraph is being done by dictation rather than by me using the keyboard. It’s actually pretty good – compared to Dragon Dictate it’s not as advanced nor as accurate, but considering the amount of pain that it’s saving me I’m okay with using the built-in dictation software for now. Likely I will end up buying a newer version of Dragon Dictate soon anyway, the built-in software is a good way to practice using the software again.
I’m also using things like remote control apps on my phone and on my iPad to access my computer from a distance. I’ve recently discovered that the set up I have at home with my laptop on a small stand in front of my futon couch is not ideal for protecting me from pain. I bought a hammock-style lawn chair at IKEA and have put that literally into the middle of my little living room as my impromptu lazy boy chair. It’s good and it’s light enough for me to move around and it also has several settings to recline to. I found the back to be much more supportive than my couch, and it seems to be helping with my pain levels a lot. However the apps aren’t very good as far as being able to type much with them, so that’s where the dictation software comes in. The software isn’t perfect and I do have to make the odd correction by hand,* but it’s much better than the alternative of ending up in a lot of pain because of sitting in front of a not-so-greatly set up workstation. I seem to be able to access the internet and my apps fairly easily using the remote control apps, which means that I can do my creative work like using my cross stitch pattern making software or following along with my Craftsy art lessons online by connecting the laptop to my TV using a HDMI cable.
For my scrollbar frame, I’m rotating several stands to allow me to stitch while reclined on the deck chair. The angle was a little bit different than what I was used to while stitching on my couch, so I did a bit of experimentation and have come up with one not too bad solution. Basically I’ve used plastic shelf cube units that I’ve broken in half, taped together into lengths, and constructed a small frame to hold the scroll bar frame. To boost it up a little bit more and give it more stability I’m sitting the frame onto a small “lap shelf” that I bought from Staples – it’s basically a piece of wood with some padding underneath that you would use to create a hard surface on your lap for writing, kind of like a mini portable table. The small shelf allows me to position the scrollbar frame stand in a way that I can stitch without stretching my arms too much or bending my neck too much. So far it’s working well and I’ve made some decent progress on my Michelangelo piece.
So that’s it for now, do you have any special ways that you’ve adapted how you do things?
* As an example of some of the mistakes this software is making, it mistook the words cross stitch for the word prostate. Definitely not what I was trying to say, but pretty funny to read back.
6 Responses
Angana
Hello, Dana! I may be the newest of your fans! I discovered you on Youtube, and have joined your Peacock Lounge. I have done cross stitch and needlepoint off and on since Brownies, and now, several decades later, I want it to be regular part of my life.
I have unique visual impairments, and am also learning to manage the chronic pain and fatigue I experience with autoimmune disease. I like using hoops because then I can flip back and forth to stitch. I am trying to develop a workspace that is cozy, allows me to see all the little things that I drop and that then disappear into cushions, clothes, and carpets… I’m sure you get the idea.
I would appreciate any advice you or your readers might be able to share.
Thanks for being such aneasy-going and fun mentor!
Dana Batho
Hi Angana! I use a Lowery stand next to my chaise lounge couch, I need to recline while stitching. I got the stand from Sew & So in the UK, even with shipping and the exchange rate it was less expensive from there. It’s smaller and more mobile than most floor stands, and can swing away from you when not in use (it clamps onto your hoop, Q-snap, etc). Then you can easily flip your hoop to tie threads off, etc. So I stitch reclined with heat on my neck with the Lowery, and my laptop is on a swinging stand at eye level so I use that for my patterns rather than printing them out. I also have a shelving unit next to my couch (that the laptop stand attaches to) where I can store my floss, needles and pincushion, etc. 🙂
I hope that helps, and I’m sorry you’re having to make some adaptations. 🙁 At least there are lots of options, so you can keep stitching. 🙂
Angana
Dana, thank you for your suggestions. I will look into the Lowery stand and keep experimenting with seating,
I am actually making veru slow but steady progress onmy current project, and your videos and blog are contributing tremendously!
Love ya!
Dana Batho
Awesome, so glad the tutorials are helping Angana! And yes, it’s all trial and error, it took me a long time to figure out what worked for me. 🙂
Brenda
Dana,
We have much in common! I too ride a recumbent trike, due to neck pain (and left sided weakness). I recently added arm supports to my Velotechnic Gekko. What a Godsend, as my left arm was always falling off the handlebar. I tried every ‘sticky’ glove I could find to try to increase my ability to grip. I make about 500 miles/year. Love my Gekko!
I also drag a fold up lawn chair around with me, as I find it has good neck and back support. I have a bit of difficulty getting out of it, but you can’t have everything!
I use Dragon quite extensively to dictate instead of typing. I am a Professor, so I do a lot of typing. I also have a special keyboard, called a ‘half qwerty’ (made in Canada!). It allows me to type everything with only my right hand. I also use a spinner knob on my car, so I can drive with one hand.
Best of luck with your helmet modifications. Stay safe and have fun on your big ride!
Brenda
Dana
Thanks so much Brenda, appreciate your comment! Yes I love Dragon (I just use the version loaded into my Mac at the moment, I’m waiting for my military medical team to approve paying for the full software). I’ve had it before, but my older version is no longer working on my newer operating system. I think it’s great, it saves me a lot of pain when I can’t type properly.
And that’s funny that you ride a HPV, I was seriously torn between the HPV Scorpion and the ICE Sprint FS, and I ended up going with the Sprint for a few reasons (excellent and very helpful customer service who helped me sort out what I needed before I ordered the trike sight unseen, and they were able to get the trike to fit me better because I’m so short). I’m really happy with my Sprint, but I know the HPV machines are also amazing. Unfortunately I can’t drive anymore – well I technically can, but it hurts me with being upright, shoulder checking, holding the steering wheel, etc. Luckily I don’t have a car so I didn’t have to sell it once I got hurt.
I’ve been taking the trike out for some longer rides since I made the helmet modifications, and it seems to allow me to rest my neck a lot more and my head be more stable (and pain-free), so at least that’s working. I know it’s not ideal to have to adapt a piece of safety equipment, but it was either that or just not wear it at all. Hopefully some designers see my post and get the inspiration to help out those of us in this situation, we’d like to be just as safe as other bike riders but not at the expense of added pain. 🙂