I originally became sick almost 12 years ago when I caught the flu. Sounds simple. Stay hydrated, take medication, rest and wait it out. But I never got better. I felt hot all the time (but no fever), had a bobbing-in-my-head feeling (just imagine those bobbing puppy dogs that people had in their cars), tired and slept 10-12 hours a day. I was able to return to my job for 2 – 3 weeks and only half-days at that. I was just really, really tired and woozy.
It was also the start of my journey with invisible chronic illness.
It took five years but I finally had a diagnosis of balance issues due to my wonderful ears. Can’t give you a specific name because the ENT doctor couldn’t give me a name or cause. Just that more people have balance problems than what the healthy folk realize.
No one can tell me what else is going on with me but things such as MS and CFS were ruled out early on. Lucky me, I also started going through peri-menopause after I got sick. Because…why not. Other times, my body’s reactions to my ears would send my adrenaline and whatever else into overdrive if the world started getting off-kilter. It’s made for an interesting combination.
It also made me appreciate some of the things in my life before I was approved for disability and for the things I could get after approval.
In no particular order:
I take this on walks with me, appointments and for when I’m on the porch or lying down. Also, fantastic to have when I’m somewhere and I start to feel like I’m starting to tip over. I can lean against a building or sit down somewhere, change the music to calm and soothing, concentrate on my breathing and let the world calm down in my head before I start walking again.
My Left Hand
Yes, my left hand is one of my greatest must-haves. I have gone from lying down most of the day to only some of the day. I can sit at my desk for longer periods of time while on the computer because I will place my chin in my left hand so that my head doesn’t move and I don’t get dizzy. Which leads me to my…
For my left shoulder and neck because some days I will push it and sit at my desk for too long with head in hand.
My Laptop and Kindle for PC App
For those times when I don’t want to, or can’t sit at my desk. I can see what’s going on in the world or, since I downloaded the Kindle app a few days ago, I can read a book on my laptop (and PC) without having a Kindle. Although, I do sense a Kindle with a lovely burgundy red leather cover in my future.
Tank Tops and Shorts
All the tops I have bought since I became sick have been tank tops. I still get too hot when I wear something with sleeves or a style such as turtlenecks so I don’t bother anymore. Even in the middle of Winter in Canada I will wear tank tops at home and when going out. I can always add a sweater or hoodie when needed. I wear my shorts when I go outside for as long as I can get away with it.
Yes, I am one of those people you see on colder days wearing a coat and shorts.
The Front Porch/Balcony
I can hang out on when it’s too hot and humid to go anywhere, I’m too off-kilter or tired to go for a walk, or to just people watch. People watching…great hobby to have while sitting with dark sunglasses on. Just sayin’.
I never thought I’d say this but I love living downtown. Almost everything I need is within a 2 or 3 block walking distance yet I am in a family-friendly neighbourhood with green lawns and flowers and trees and some really nice neighbours.
2 Cold Packs/Face Cloth
When I know I’ll be going out for a while I always put two cold packs in my purse in case I start to feel hot. The larger one is cold and originally used for a knee brace. The other is a smaller one that was left in the back of the freezer one day, froze and I now keep frozen. I leave them in a freezer bag with the large one wrapped around the smaller, frozen one.
After using it for about 10 minutes, I just flip the large one around so that I always have the cold side against the back of my neck and the frozen one is cooling the just used side. I am usually not out long enough for it to thaw. If I know I will be, I also take a wash cloth so that I can wet that with cold water and put on my neck.
2 Fans and a Spray Bottle
I have a box fan that I will put in my window when the weather warms up as we are not allowed air conditioners where I live. Except for late afternoon when it is the hottest part of the day, the box fan sucks in air and keeps the room cooler. The second fan is an oscillating fan that I keep on my desk and aim at me. The spray bottle I use when it’s ridiculously hot and humid and I will lay down, spray myself down with water and let the fan blow on me.
I will spend an afternoon or two doing batch cooking so I don’t have to stand over a hot stove each day. Frozen veggies and a baked potato done in the microwave and I have a balanced meal.
Two flavours of Stash brand tea, Chai and Chocolate Hazelnut (reminds me of Frangelico) calms me. Any brand of Peppermint tea calms my tummy.
Denim Pencil Skirts
One is black, the other blue and I feel sexy wearing them.
I try to use is it as regularly as I can and in conjunction with walking and strength exercises. If I’m not feeling good enough to go for a walk or the sidewalks are too snowy/icy, it’s great to have right in my room. I’ll read, watch tv or listen to music while I ride.
I have a Vonage phone line and a cell phone that I use as an emergency/backup phone that I ALWAYS take with me when I go out, even if it’s for 5 minutes, just in case I start getting dizzy and I can call a cab.
Vonage, taxes included, is $22.59 each month. The cell phone has a .30¢ per minute plan with Virgin Mobile that I put $100 per year and, for me, lasts until the one year anniversary date where I’ll add another $100. I don’t use up all the money, so the dollar amount that remains is rolled over to the next year. Only a couple of people have that phone number.
Budget-wise, it’s perfect for me. Having just one cell phone before was costing me $60-75 per month depending on how many minutes I used over and above the plan’s allowed minutes per month. Having Vonage is cheaper than a land line and combined with having the cell phone as my emergency/backup I am saving over $400 per year.
FYI, all the above prices are in Canadian dollars.
Buses make me dizzy and in winter, with the heavy coat, I can overheat. I don’t go many places by cab so it’s no big expense for me, but yet so vital if I want or need to go somewhere.
Network with People Like…
The pharmacist from the drug store in the medical building across the street from me. He referred me to my new family doctor who is also in the same building. As is my dentist. And I go there for most x-rays, ultrasounds and lab work that needs to be done. Another benefit of living downtown.
Credit Card and Internet
This makes shopping for so many things so convenient and cheaper than taking a cab everywhere if I want or need to get something.
Well, that’s my list of must-haves that save me in so many ways. I hope you find something that you can use or pass along to someone.