• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Normal Things That Flare Me Up

Yesterday, I did things that normal people take for granted and can do with no problems. I went to the bank, I went to put gas in the car, and I went to the foodstore. I wasn't feeling too bad yesterday. I wasn't lightheaded. I just had bad arthritis pain.

Today, I am so flared up that I can't do anything. I have the light and sound sensitivity so bad that if anyone decides to be loud here today, I'll have to either put in earplugs or put the white noise on. The light hurts my eyes so badly, I've been considering putting on sunglasses in my apartment. Pain all over my body. I am so incredibly ill.

What amazes me is how I can go from being fairly okay and doing things normal people do all the time. To suffering the tortures of hell the next day. I am paying in spades for going out. I didn't do anything different from what a normal person does. They were normal errands. Nothing was very far from where I live and I drove myself. And yet, these normal things flare me up so badly. I don't know how long this flare will last now. I have to spend time resting it out. I don't understand why it has to be this way. Why can't we ever do normal things without paying a horrible price for it?

Comments

Victoria
I guess That's Life for an ICI (invisible chronic illness) sufferer.

You're not alone in your suffering.

We should be grateful for what we CAN do - I am. At least you have a car & can drive. You are so lucky in that.

I envy you.

I would love to be able to drive up the country (out of the city traffic & pollution). I can afford to buy a car, but I couldn't afford to run it for more than a few years.

And the nerve damage in my right foot would probably not allow me to press my foot on the acelerator with any degree of comfort. I had trouble driving from 1998 (when I had a bad fall & surgery) until I eventually sold my car in Nov 2003.
 
Carrigon
I stopped driving for years. I wasn't well enough. When my mother died, I had no choice. That doesn't mean I actually belong driving. My depth perception is bad now. And, I don't know if I will be able to keep the car after this next car inspection. I can't even afford the inspection this year. I only go out two or three times a month just to the store and back. I can't really drive beyond that. I've been looking into the disabled busing they have around here because I don't know if I can keep this car.
 
Nico
I don't have a car. I use a transportation service to get around called "Lift Line". It's for disabled and elderly. This service has been a life-saver. When I do have a car on loan, I too can only do very short trips, or one "longer" trip (i.e. 20 minutes each way). I also have a power wheelchair.... so this service is great because whether I am ambulatory or not, I have an oppty to get out. There are some compromises one must make with this service, but it's better than being stranded alone, relying on others, or buying food online.
 
J
Thanks Carrigon for your words. It actually feels good to hear someone who knows exactly what I'm going through. It always blows my mind how I can feel okay after I've done a few things and then the next day or two I'm so sick I can't get up to eat.

I can drive a car - here in Texas it's a MUST. The grocery store is the closest thing and it's a couple of miles away. But although I can drive a car, I consider myself extremely sick as I can only do a couple of small errands once a week (in a good week) and beyond that I am in bed about 20-22 hours a day. No one can compare themselves in this disease. I look pretty good, but when I listen to some friends who have Lupus or even AIDS, I'm blown away with how much more they can do than me. Some people are severely affected by PEM (exercise intolerance) and some have severe upper respiratory problems, we are all different. I really don't want someone to tell me how lucky I am when I cannot tolerate a telephone call more than five minutes, I live in isolation in bed for days on end, I am in severe pain 24/7, etc. But I myself constantly work on being grateful, which I'm sure you do as well. But that doesn't mean it's easy!
 
S
No its not easy. My counsellor today told me that he sees a woman with MS and she is not nearly as disabled as me. There is a perception that MS is always disabling but I have a friend who manages to work 4 days a week with the help of a drug.

There is no comparable illness and I am glad this guy will come to my home and actually see me. Its taken a year for him to really get it. He lives local and says he thinks about me stuck here in my house. Its so much better than 2 years ago. I can actually make a few phone calls and walk about the house without worrying about collapsing. The typing fluctuates a bit but has stayed with me when other functions dissapear.

Gratitude is good. Lately though I have found a mean and nasty train of thought taking hold and its always when I am in PEM so have to laugh it off and know it not really about me...more like someone who is drunk and has a personality change.
 

Blog entry information

Author
Carrigon
Read time
1 min read
Views
654
Comments
5
Last update

More entries in User Blogs

More entries from Carrigon

Share this entry