What do you wear when you’re reeling in pain?
What’s your favorite setting?
Do you want people around you taking care of your every need?
These are just some questions I often ask other sufferers and myself. Just some basic topics that I think everyone should know about. I will discuss what I do to stay comfortable and why, which symptoms I am trying to endure by doing so as well. There are plenty of articles written by people with much bigger names than I on medications and such so I will continue to touch on subjects that are sure to make you more comfortable. Even with all my illnesses having had surgeries, been on feeding tubes, had long hospital stays, and chemotherapy I know what little tips and tricks can bring you that little bit of comfort that might allow you some sleep, or allow you to lay down without having the chills, or what will help you to ignore that loud or obnoxious roommate in your hospital room. We all know there are inevitable and uncomfortable situations with this illness so let’s figure this out together. I’ll give my input and if you have anything to add please feel free to do so in the comments!
To answer the first question I posed to myself “What do you wear when you’re reeling in pain?” it really depends on the season and where I am located at the time. I will say that with my vasculitis and allodynia from migraines my skin is very frail and painful so I am very careful about what I wear. Cotton is my favourite material and when my bones are aching nothing helps more than a warm shower or a dip into the hot tub and then changing into some clean clothing that’s soft. Especially if you are known to sweat whilst in pain you want things you can wash or breathable materials. If you always sit in the same spot like I do to write and sweat from pain then lay down a sheet on the couch or get some covers that are comfortable yet can be washed daily if need be.If you have the chills get some thick warm socks that breathe. Yep spend $20 on one pair of socks it’s to benefit you when you feel like crap and you need superior quality. I’d also recommend a heated blanket and perhaps a heated basin to soak your feet and/or hands if you have problems with the chills like I do. You also probably want to get a soft hoodie which you can unzip and wear partially whilst having BP taken or blood draws or even an IV line put in. As you all know I wear a pair of FL-41 tinted lenses made for me by Axon Optics, I also use their prescription contact lenses which also work quite well. These provide protection from lights especially the plethora of fluorescents hanging in urgent care centers and at the local emergency room. I could write pages more about this topic but I’ll save that for another article so I can maintain your attention for the rest of this article.
This second question is a tough one I have many favorite settings but not many I am comfortable in whilst in severe pain. If I truly had a choice it would be the beach but that just isn’t realistic for me I have had 1 day there in the past 3 years or so. I have several favourite spots in my home depending on how exactly I feel at the time. For example when I am at my worst everything hurts just lying down is painful, heck existing is painful so at those times I choose to be near my parents so they can hear my cries if I need medication or a drink. I also put an ice pack over my eyes I now have 2 that I alternate and I put lotion for my cluster and migraines on my trigger points. This is my typical morning laying on the couch like my spine has shattered not moving and in severe pain. Other times I am simply in too much pain and I hide up in my room with the therapy puppy at my feet keeping an eye on me. This is typically on days when I’m more fatigued than in pain and cannot move so I stay in one place no matter how uncomfortable. This isn’t ideal and I’d recommend a spot more like the first one where you’re in an area where people pass by often and can ask if you need anything. These are really the two only positions I crawl into unless I am severely ill then I am in the fetal position on the bed at the hospital.
The last question I pose to myself here is how often do you want people around, do you want someone tending to your every need? The answer is no most of the time for me I cannot stand having someone pester me about my needs when I am already in a ton of pain. Sure if I call out or ask someone else in the room to get me something having that done is nice, however constantly being asked what’s wrong, or what do you feel, or are you going to vomit those are just questions I do not want to hear when I already feel terrible. What I really want is for someone to read a book quietly or just sit with me and watch TV if my eyes can bear it and just shut up for a while or have a light conversation it all honestly depends on how I am feeling. I am sure others feel the same way and have different opinions based on how they’re feeling at the time. The patient knows their body best and only they can tell you when they feel comfortable and what makes them uncomfortable so if you haven’t had this discussion caregivers please ask! Hope you all have a pain free day and a wonderful weekend, perhaps next week I won’t suffer as much and will be capable of writing more!