Category: fatigue

9 Helpful Gifts for Your Disabled Loved One

Posted on by Grayson

'9 Helpful Gifts for Your Disabled Loved One' written against a wooden background with wrapped presents

While I normally don’t talk about what gifts are helpful for those of us living with disabilities or chronic illnesses, I wanted to break with tradition this year and share some of my favorite gadgets and gizmos.

What changed my mind? Well, I’ve spent the last few weeks taking care of one of my guinea pigs. He’s been dealing with inflammation, pain, and an infection since the week of Halloween. If I could, I would love to get anything and everything that would be able to help him get lower pain levels.

This post contains affiliate links. That means I may monetarily benefit from you purchasing anything on this list. That said, payment for affiliates never comes at your expense. I also would not be promoting anything I didn’t personally appreciate, agree with, or review.

 

Benepod

Benepod is a new type of contrast therapy device which utilizes both hot and cold simultaneously to fight pain. By applying both hot and cold at the same time to a particular point on your body, the Benepod engages your bodies natural healing abilities by introducing a sensation known as the thermal grill illusion.

This device is used with a USB-C cable and must be plugged into a power source during use.

The research for the Benepod started back in the 1990s, meaning the company has been working hard at improving the device design to bring us the best possible one.

You can read my review or snag the Benepod on Amazon.

 

lotion bottle

Fay Farm CBD Rejuvenation Lotion

This lotion contains CBD, essential oils, and even magnesium. It leaves the skin happy and healthy without the greasy feeling a lot of powerful lotions can leave behind.

You can read my review and snag this in 2 oz or 8 oz.

 

 

Tens Unit screen lit up blue

Tech Care Pro TENS Unit

I’ve tried a number of TENS units, and this is the best one I’ve found for my own pain. The unit itself is light, compact, and easy to use. While it doesn’t have a pause button, it is powerful and I’ve never had to use it on medium levels at all.

You can read my review and snag your own on Amazon.

 

Oska Pulse with box, charging cable, and strap

Oska

The Oska Pulse has the cutest name backstory involving helping a koala recover from injury.

The research is there that Oska works – they have a ton of journal articles and research on their site for your perusal. It’s much more a device for preventing pain than treating immediate pain.

You can read my review and SAVE big! For the rest of the year, Oska is on sale for $344 if you use the code NSSD here.

 

Image result for quell

Quell

While my review was on their first edition, the new model is 50% smaller. It’s comparable to the size of a credit card now, making it less obvious that you’re wearing something on your leg. It has more power and more intuitive – it can adjust power on its own depending on your body positioning.

You can read my review. The code HOLIDAY30 saves you $30 off the Quell starter kit for the rest of 2018 here.

 

axon optics box with glasses case

Axon Optics

I would not be alive if it weren’t for my Axon Optics and, no, that’s not an exaggeration.

My migraines were so awful over the last year that I was in a really bad place. My glasses were one the one thing that helped me get through my day. They help filter out some layers of light which have been shown to cause or worsen migraines. While these may not work for everyone, they’re a must – especially for those of us who stare at screens all day.

You can read my review and snag yours on Amazon.

 

selfie of K with short black/brown/purple hair sticking up; they have on a brown paisley Vog mask

Vogmask

Thanks to Kenzie, I got my first Vogmask. As I’ve started to remove allergens from my life due to MCAS, it’s become incredibly important for me to have a mask on me at all times. The Vogmask is compact, easy-to-carry in my bag or pocket, and look snazzy.

You can get yours from Amazon.

 

FaSoLa Portable Weekly 7 Days Pills Organizer Case Round Medicine for Travel Drug Holder

FaSoLa Pill Organizer

I love this round pill organizer! I put all of my emergency medications in them – and, yes, I have seven now. It’s compact enough to fit in my bag, but big enough to hold what I need. Plus, you push the button and the circle advances to the next compartment.

You can snag this on Amazon or at Walgreens.

 

Books

I love reading. While I haven’t read all of these books, they’re all sitting on my bookshelf waiting for when I have more time.

  • Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine | Amazon
  • Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain | Amazon
  • Backbone: Living with Chronic Pain without Turning into One by Karen Duffy | Amazon
  • When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests by Leana Wen & Joshua Kosowsky review | Amazon
  • Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery | Amazon
  • Sick: A Memoir by Porochista Khakpor | Amazon
  • A Disability History of the United States by Kim E Nielsen | Amazon
  • The Ultimate Guide to Sex and Disability by Miriam Kaufman, Cory Silverberg, and Fran Odette | Amazon

Of course, gift cards and quality time are always appreciated, too.

Looking for more chronically helpful gifts? Check out this list I curated on Amazon!

Like, Seriously?

Posted on by Grayson

My RA keeps getting worse and worse. It improved for a bit a few days ago, but I can’t tell if that was good or bad, since it’s now terrible again… in a different way than before – not necessarily a worse way, but definitely not good. And, I fully expect it to be a little worse, because I’m almost at that time of the month (too much information?) and RA tends to get worse for most people then.

I’m sick to my stomach, and I keep getting dizzy. I have no appetite and, as much as I try to make myself eat, I get full so quickly. I’m drinking water more than anything else, and keeping as hydrated as possible.

My legs are hurting differently than normal – more of an ache and stabbing pain, than a numb and throbby pain. I’m getting more cramps too. The achy feeling is starting to affect more places on my body now too.

And my freaking kidney was hurting the other night. It felt like I was being shived (think prisoners being stabbed with sharpened toothbrushes) hard core. I guess it wasn’t that bad, except that I was driving. Oh, and it’s totally happening right now. Awesome.

Also, the zappy pain is back. It’s not making things easy at all. I feel like a million needles keep poking me randomly, and I don’t know what to do. That’s one of the signs of MS, which my great grandma had. It’s hard enough dealing with just the RA, and envisioning what my future will look like then… To think that I could possibly go through the same things as her… I just don’t know if I could take wasting away like that…

I’m really trying hard to not let everything that’s going on affect other things in my life, but I can’t control it. I can’t control that I can’t sleep a lot lately either, which is just making things that much worse. I’m usually pretty good about being optimistic, but right now that’s just a little hard to do.

I can’t help but thinking that the people in my life are going to have to help me do things in the not-too-distant future. This isn’t about dignity – I really could care less about that (to a point, I suppose). But I’m stubborn, which is going to be difficult… And I feel like everyone will start to resent me. I know I shouldn’t worry about things I can’t control/try to predict the future, but I’ve seen it happen so many times in the other people I read about/talk to with chronic diseases.

UGH.

I either need a really good nap, a bunch of Reese’s peanut butter cups, or (another) really good, really long cry.

Storms

Posted on by Grayson

So I knew last night that it was at least going to rain, which it managed to do while I was sleeping. But it’s been non-stop storming in my area for the past seven hours or so.

I felt great earlier today, but then as I drove into the Madison area to spend time with the boyfriend, I just started to feel downright gross. I was extra tired, hurting in odd spots (one kidney, really?), and just started getting irritable.
Driving back home later, in the middle of the thunderstorms, I started to feel nauseous and slightly dizzy because of all the flashing lights. I’m really sensitive to light, so I’m sure that didn’t help either.
Neither does the thought of having to wake up at 5 in the morning. Stupid work.
We’re gonna see if I can avoid throwing up tonight. I hate it, which is why I avoid it at all costs, but I’m just not sure how well that’s gonna work right now.
Blech.

Fatigue

Posted on by Grayson

I was trying to figure out what the worst part of the arthritis seems to be. It’s difficult to decide – I mean, there are so many factors to decide between, right?

Obviously, the joint pain/freeze has got to be the worst right? For example, I stayed over at the boyfriend’s last night. As I was getting up this morning to get ready from work, I nearly fell down because my knees and hips were not willing to cooperate at all. Not being able to do something that everyone takes for granted definitely sucks.

But the fatigue is pretty crappy too. I almost feel like I could deal with the pain if I wasn’t so tired all the time. The biggest thing I did yesterday, aside from putting things away in the boyfriend’s apartment, was laundry… Oh, and we went to a baseball game – A nice, sit-down-and-watch-people kind of thing. Why was I so tired? It’s ridiculous.

But then I was thinking that the emotional debilitation was probably the worst. I mean, the fatigue makes that worse for sure, but that makes the pain worse, which makes the fatigue worse, right? I feel upset about the things I’m going through, or like I’m not good enough for anything – that never makes things better.

So what’s the worst part about RA? It doesn’t seem like one single thing can be pinpointed. It’s too bad – maybe if something could be, that would help find a cure more quickly.

Chronic Pain and Your Friends

Posted on by Grayson

Okay, so we’ve all been there. Someone new comes into your life and you feel close enough to tell them about your RA. Or maybe, like some, you wear your RA on your sleeve and proudly (maybe the wrong word) let everyone know about Arthur and you.

It’s hard to explain what chronic pain feels like. Obviously, there’s the physical pain. A lot of people can’t really comprehend how badly that feels. But even more debilitating (in some cases) is the emotional and mental anguish caused by a chronic pain condition. It’s hard to explain what it’s like to feel left out because you can’t play on a jungle gym or participate in sports… or even go out sometimes. I came across this story, The Spoon Theory, from a Facebook page (I Love Someone With Rheumatoid Arthritis – you should join. I mean, clearly you’re here and you love me, so there. Okay, maybe not me.) It really does a good job of depicting the planning that has to go into certain days. I’m lucky enough (at least right now) that I have more than 12 spoons and I usually know which activities suck up more spoons, avoiding them whenever possible. But there are definitely days when I don’t know how I got from sunrise to sunset without an IV of coffee.

FML

Posted on by Grayson

Sunday, I had a pretty swollen ankle – to the point that I actually broke out the ACE bandage/wrap thing. Monday, the pain had traveled into my knee and was pretty bad. Today, though, I almost couldn’t take a shower because I couldn’t lift my knee high enough to clear the tub. Unfortunately, my ankle is hurting now too. There’s just no good way to deal with this. I’ve taken two Aleve and two ibuprofen and been using my Liquid Freeze.

I need better painkillers or possibly a new left leg… though I’m sure the latter would require the former.
Also, I’m pretty exhausted/tired.
Blech.

Oi!

Posted on by Grayson

One of the hardest things to deal with when you have arthritis, especially at a younger age, is the opinion of the people around you. It can be really difficult on days where an ACE wrap around your elbow or another visible spot could help with the pain. You get odd questions – “Oh.my.gosh, what happened to your arm? Are you okay?” It’s hard to explain why the wrap may be there one day and not the next.

Taking pills and other medicines can also be a problem. I take OTC pain meds, which are not as noticeable but can be if you end up having to take them a lot. It can also be embarrassing when you use ointments like Bengay or Icy Hot. Going to class smelling like a poor person’s version of a York Peppermint Patty always gets exciting.
And then there’s the fatigue. You can’t do a whole lot to combat this except to try and push through it. Unfortunately, that doesn’t always work. Others probably shouldn’t follow my example, but I tend to drink a lot of high caffeine beverages as a result – coffee, Dr. Pepper, Mountain Dew, etc. I probably crash pretty hard because of that when I do crash, but for me right now there seems to be no other alternative.
Working out can give normal people more energy, but it seems as though the opposite is true for many with arthritis. When I work out, I feel great right after (unless I manage to hurt myself doing, which as a clumsy person is very possible). The next day and the day after though, I’m completely wiped out. This doesn’t even take into account the pain that happens while working out. The best types of workouts for people with arthritis tend to be those that improve range of motion (dance), strengthening (weight training), and aerobics (bike riding). If you have bad knees, however, dancing and bike riding don’t help a ton. One of the hard things about working out is knowing how far to push yourself also. “No pain, no gain” can only go so far before there’s negative gain.
So why this focus right now? I should be getting ready to go play with a bunch of awesome second-graders a few blocks away. Instead, I’m sitting in my apartment with ice on my knees, an ACE wrap on my elbow, and Liquid Freeze on my shoulder. It’s hard to know when to push yourself and when to sit out unless things get really painful/bad. Usually, I can tell when things are going to end up affecting me this way later. Unfortunately for me, this is how I woke up today.
Even when you try to plan for everything, it’s hard to remember that arthritis can be such a random disease. Planning won’t help with everything.

Update

Posted on by Grayson

We’re down to the final two big-name celebrities (that I can find) with RA. Look for those sometime soon.

Unfortunately, I’m super exhausted and it’s only Monday night (Tuesday morning?). My right shoulder started aching like crazy Friday night and it’s been pretty difficult to keep the pain under control – something made worse my pain in my knees and ankles. I’ll be honest, I’m trying to not take medicine as often because I know I’m taking more than the recommended dosage. I also know that I’ve built up a tolerance and have to take more in order to get the desired effect.
One of the most useful tools in my pain-fighting arsenal is a minty roll-on liquid. I have no clue where or when my mom found this wonderful thing, but it has definitely saved my sanity on more than one occasion. There is a spray and a roll-on. I only have experience with the latter. I have only ever had two problems with it – reaching the right spots on certain joints (i.e., my shoulder) and a minimal amount of spillage. That said, the product is a wonderful thing to keep with you just in case you have a flare-up that doesn’t seem to respond as well to medicine… or if, like me, you have a somewhat unhealthy relationship with your OTC pills.

Physical Activity

Posted on by Grayson

I am really frustrated with my body right now.

I haven’t really done a lot physically since I came down with bronchitis right before Christmas. I’m really at the tail end of it right now, so it’s more like I just have a cold. The last big physical thing I did was go to the mall a few weeks ago.
Yesterday, while showering, I totally nicked the back of my left ankle in a couple of spots. It bled for a while and didn’t seem to want to stop. I had to tape some gauze on the back of my heel to stop the bleeding after a good ten minutes of applying pressure.
Last night I went to a basketball game with the boyfriend and his dad at my university. It was pretty cool. My school won and all in all it was a pretty great game. We got to sit court-side, which was pretty awesome. The seats weren’t the most comfortable, which was not a big deal. I was pretty worried about how close we were because I didn’t want to get in the players’ way, so I kind of twisted and bent my ankles to keep them off the court. Apparently, that was a really stupid idea.
The boyfriend and I went to Discovery World today, which was pretty awesome. If you haven’t gone, it’s definitely a fun thing to eat up a couple hours of your day. It does involve a fair amount of walking though… which shouldn’t have been a problem right?
Apparently, I’m wrong about that. I am super wiped out physically right now. We were only in DW for not even three hours and I was wearing sneakers. I started feeling the urge to limp pretty quickly, unfortunately, but I wasn’t going to let it stop me from enjoying my time.
I feel fatigued, sick to my stomach, and I definitely have rash all over my face. My eyes have also been redder, which worries me since I have had a history of arthritis interacting with my eyes. It always bothers me when I feel like I can’t do normal people things without feeling completely and utterly wiped out.
It’s not just how I feel physically though. How do I go about turning down something fun because of how I think I might feel? I’m one of those people who likes to try new things all the time and go out and be active. Unfortunately, it seems as though my body doesn’t quite share my enthusiasm.
Since I fell down the stairs right before Christmas, my arthritis has gotten worse. I guess that, in the past, I haven’t really had to put very many limits on my physical activity. Unfortunately, until (or, the worse option – unless) the disease begins to be more dormant again, it seems like I’m going to have to learn to listen to my body’s warning signs just a little better. For now, I have an ankle to ice and keep up.

Update

Posted on by Grayson

It’s been a while since I wrote again. I’ve been hard(ly) at work on my capstone paper, doing research, and working.

I’ve had to keep taking a lot of medicine since the last time I wrote. I generally try to not take any medicine because I hate it. I have been taking anywhere from 6-12 pills a day now though and I’m slightly worried about that.
Like clockwork, my shoulder problems are back. This time they have been so bad that I cannot sleep and am having a lot of problems doing everyday things. This morning it took me ten minutes (not kidding) to change shirts because my arm just wouldn’t move the right way. My other shoulder is having problems too, but definitely not to the extent of the right one. A big problem with my shoulder having issues is that the same feeling tends to spread throughout my arm (i.e., my wrist is aching pretty often also).
For one of the first times in my life, I can say that I feel handicapped. My arm hurts so bad that I can’t really do normal everyday things right (or at all, in some cases). I feel as though some people think I am exaggerating or making up problems since they are not readily seen. This is, I feel, the most problematic effect of the disease. I can handle the pain to a point and I can handle not being able to do certain things, but for people to doubt me makes all the other problems seem that much worse.