micaela-macdougall
Forum Replies Created
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Everything’s working for me.
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I’ve been working on my new chair for the last year. I’ve been losing arm strength slowly for the last 8 years, and I’m scared that if my new chair is even a tiny bit off, my body won’t adjust and I’ll lose my last remaining ability to feed myself. And it’s so hard to put into words what doesn’t feel right. The chair is in the shop now getting some major adjustments, so fingers crossed that does the trick. At least my old chair is still functional, so I have time to figure it out.
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Maybe it’s because I’m from Philadelphia originally, but your response seems entirely appropriate to me (and maybe even not harsh enough). My dad and I have a running joke where he tells me to be more grateful and patient, and I roll my eyes and tell him to hurry up with whatever I asked him to do. It’s good practice at reducing the shame I feel when people use those words seriously, at realizing that I don’t deserve that criticism.
If you feel like there’s still tension, and your PCA is important enough for you to make to the effort, you could ask to talk to her at a time when you’re not doing other caregiving activities. You could say that you may have expressed yourself crudely, but it’s hard to be emotionally mature when you’re just trying to go to bed and you feel like your whole life is being scrutinized. And that you stand by the sentiment – you could explain the difficulty of managing finances with a disability, how you have to keep yourself in poverty so that you don’t lose services you could never afford otherwise, etc. – and/or you could get into how the word “grateful” is a trigger in the disability community and how we are always expected to be grateful for services that just bring us up to the same baseline as everyone else.
DeAnn, I think the only person you owe an apology is yourself – for valuing yourself so little that you give this much weight to other people’s totally uneducated, invalid criticisms. You are not getting paid to take care of your PCA’s emotional needs. They are getting paid to take care of your physical needs. Maybe understanding what your life is like would help them do a better job, but that’s up to you if you want to spend your energy on that conversation.
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I’m sorry you’re dealing with this! I don’t have a spinal brace, so I’m not sure how helpful I am. But one idea that comes to mind is to offer to do the tests twice a few times, both their way and your way. That would give them hard data that your way is actually better. It would also create a transition period – in my mind, the numbers from those tests are useful because they establish what your baseline is, and doing it both ways would help everyone understand how the new method creates a new baseline that is actually equivalent to your old baseline.
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I’ve found a massage therapist I really like who comes to my house every two or three weeks. She works on my neck, shoulders, arms, legs, and belly, and I’m able to stay in my chair or my bed. I can’t say for sure how much it helps my muscles, but it feels so good and I’ve realized how psychologically healing it is to experience touch that is pleasant rather than clinical.
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Thought I’d post a little update here.
I’ve had my Garmin Vivosmart 5 for about 6 weeks, and I really like it.
- I’ve learned that my “body battery” (Garmin’s proprietary algorithm) is consistently low and my “stress” (based on HRV) is consistently high. So far those numbers aren’t precise enough that I could use them to predict my fatigue for the day, but it is nice to see data confirmation that I am dealing with more fatigue than the average person.
- I’ve learned that doing my stander and PT exercises gets my heart rate high enough to count as cardio. Turns out I’m more active than I thought!
- Not all the time, but when I’m reading in bed or sometimes when I’m especially fatigued, it will think I’m asleep when I’m not. However, the app lets you adjust sleep time manually.
- The one button is too hard for me to push, but I can use the edge of my desk to push it if my wheelchair is tilted to just the right angle. The button is only necessary for workouts or changing settings. If I just want to see my current stats, I can just rotate my wrist a little (which is easier than I expected) or double tap the touchscreen (which takes a little pressure – but once it’s woken up, it’s a perfectly normal touchscreen).
- One surprising benefit is the alarm. I get up at 8:30, but I set my alarm for 8:10. It vibrates 10-20 times and then snoozes automatically without me having to do a thing – it repeats this every 10 minutes until I get up and turn it off. I’ve found this to be a really nice way to wake up gradually.
So I’m enjoying it. Even though I’m not sure how much it’s actually changing anything, having this data makes me feel more in control of my body, which is worth it for me.
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Thanks to everyone who suggested a humidifier! I recently realized I can change the humidity setting on my bipap itself, and that seems to have fixed it.
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I’ve been on the pill for almost 15 years now, because my first periods were so unmanageable. (My bleeding was so heavy that I was changing a heavy duty pad every couple hours.) After a few months on a standard combined pill, I switched to one where I only got my period every three months (and it was a much easier experience when it happened). This worked for a long time, until 8 years ago I got a period that just wouldn’t stop. I had to have a D&C to stop the bleeding, and then my gynecologist put me on continuous birth control (no placebo pills, no periods, only occasional minor spotting). A year and a half ago, I switched gynecologists when I finally found one that had a hoyer lift – she switched me to a progestin-only pill because of my blood pressure. At first, I had a very light period and increased irritability, but my body quickly got used to it.
For me, I’m really glad that my body has tolerated the pill this long and that I don’t have to deal with periods. My current doc has told me that there are a lot of different options now for dealing with periods – you can try different types of pills, or even other kinds of contraception (like IUDs or an arm implant) sometimes make periods easier. It’s a bit of trial and error to find what works for your body, but there are solutions out there!
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I feel you, DeAnn, I do not have much energy for a long style routine. Besides getting dressed and brushing my teeth, I have a 10 minute routine of washing my face, putting clips in my hair to keep it out of my face, and putting on eyeliner and earrings. These little things make me feel like I look good and make me more motivated. It definitely helps that my mom is still my caregiver – she knows exactly how to do my eyeliner and hair without needing a lot of instructions. And I don’t shower every day, it’s too much of a hassle.
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I’m totally in for any book clubs or Zoom meetups!
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Alyssa, I really agree with you that “dressing up” makes me feel more motivated and confident. I plan outfits for doctors appointments or even just for days of getting things done at home.
My goal is not to follow trends, but to look and feel like my best self. I like this typing system: https://www.truth-is-beauty.com/blog/dress-for-your-face-not-for-your-body, and it’s great that I have a lot of “natural” in that terminology – it makes it easy to look good without sacrificing any comfort!
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This stage of the pandemic feels way more isolating than the beginning. I’m grateful that my doctors haven’t gotten tired of me emailing them every month with a new question about the risk level of a specific scenario. Like Anna said, they’ve been reluctant to give me definite answers about risk levels, but I finally got some clearer recommendations from them at my last appointment in September:
- Make sure to stay up to date on boosters for COVID and flu – they said this is the biggest factor for how severe a bout of illness can be.
- Wear a well-fitting mask in all public spaces or around anyone you are not sure is vaccinated.
- It’s fairly low risk to have people over inside if they are also up to date on their COVID shots, especially the latest bivalent booster.
So, yeah, it really feels like the rest of the world has moved on without us. At the same time, I’m grateful for my few friends who trust my doctors as much as I do and care enough about me to get the bivalent booster so they can come over.
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Absolutely! Only certain people are worth having that kind of conversation.
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I honestly can’t remember how I found her, it was probably through my parents (they seem to know everyone). Her rate is $80/hour.
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Yep, you can check heart rate, respiratory rate, and blood oxygen levels. I don’t know for sure how accurate they are, but the numbers are generally comparable to my vitals at my doctors appointments.
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I’m sorry, I don’t remember the name, but I’m sure your doctor would know about it.
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Seconded!
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I was emailing with my pulmonologist today, and he suggested a nasal steroid spray… I’ll probably try a humidifier first.
Do you mean changing to a different kind of mask? My current setup is kind of set in stone to keep my neck comfortable. But I do change the nasal pillows every two weeks, as frequently as my insurance will let me.
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Not right now, I’m looking into getting a humidifier.
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Good suggestions – I was wondering about humidity. I’ll check in with my pulmonologist, I just wanted to see if anyone here had any good tips.
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It’s a fun system! If you’re interested, turtlenecks are associated with the “dramatic” style type (think Angelica Houston), so that’s an easy way to rule out which types don’t work for you.
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Yeah, I wish I had more answers too, other than just blaming it on SMA. After doing some more research, I found a Garmin tracker on the lower end of the price range. Apparently, Garmin’s body battery feature gets a lot of praise from the chronic fatigue community. I’m going to try it out for a few weeks, and I’ll try to remember to post on here how it goes.
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I don’t mind! Yes, I often have bad fatigue. It’s funny to me how little people realize that fatigue is a much bigger barrier to working than just being a wheelchair user. I’ve actually been having a really bad bout of fatigue this whole week (a combo of stressors in my personal life and the time change), which probably motivated this question.
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Yeah, that’s kind of what I’m thinking. I love data, but I just don’t think it’s worth the high price. For now, I’ll watch and see where the tech is headed. Maybe someday they’ll add more features that will be more useful.
