Not the kind that you get from drinking a slurpee too quickly; the kind you get from having a chronic illness and for me it is an autoimmune disease called Ankylosing Spondylitis. I hate it when this happens and I really can’t stand admitting it. I’d like to wish it away and tell you that it never happens to me. But it does happen, so let me try to explain what it’s like.
It usually comes with a flare (that is what we call a period of heightened symptoms) or towards the end of my cycle of biologic intravenous medications that I get on a monthly basis. My infusion are typically 4-5 weeks apart and most months I manage quite well but what is really interesting is that if I have extra stress especially of the emotional kind, the level of fatigue can cause me to feel this shutting down of my ability to think clearly and at times it can be especially strong. For those of you who follow along with my blog on a fairly consistent basis, you know that last week I had a shock of a friend passing away unexpectedly. Doug and I went to the services on Saturday and they were beautiful but of course very emotional and on the way home I felt “it” hit me – like a ton of bricks as the saying goes. I could feel the fatigue and “brain freeze” overcome me.
I knew we had a few stops to make on the way home and in years past when this state came over me I had an almost uncontrollable urge to just get home as quickly as possible but as the years have passed and these events have happened, I do know that I can push myself – and survive them. So, although I did say to Doug “can’t we do these later?” and told him how I was doing, he knows I’ll survive too and is extremely in tune with my illness and he said “let’s just get them done” and he was right. But, by the time we got home it was almost 6 pm and I had no apple and my brain freeze was so intense at that point that I knew if I didn’t just immediately come up with something, I was in the biggest danger I’d ever been in of missing my first apple in 324 days. I eked out an apple – that is truly how it felt – and I was actually feeling confused. You see, after I create my apple, my tasks don’t end. I need to do all of the technical things that go along with my blog and daily emails. The process has become almost second nature since I’ve done it so many times and on Saturday I didn’t write anything or add anything extra to The Daily Apple but I had to ask Doug to make sure I had posted them. That is how intense the mental fatigue felt – that although I could see that I had pressed publish on the blog and submit on the email system, I needed him to confirm it for me. That is a very scary and overwhelming feeling but as soon as I was able to shut down and stop thinking and recline my body, I started to slowly recover. And by slowly, I mean I’m still dealing with the current AS fatigue but I’m resting and doing the things necessary to lessen the effects. I also know that my infusion is in a few days and I know it will help me immensely.
I wanted to relay this to you all because I have a tendency to say that I’m fine and wonderful and everything is fabulous. I have a powerful positive psychology that works for me and keeps me going through difficult times but I need people to try to understand that although I receive an amazing medication that puts me back in the game of life at a level that allows me to work and create, as well as a wonderful support system, and a blessed glass half full approach to life, that I still get overcome with times when I cannot function. The pain and exhaustion of this disease rears its ugly head and I slow waaaayyy down. At these times, I adjust my normal routine because I have no choice but to get through until I can get enough rest or medication and most times both.
This brain freeze is really fatigue but its the way I feel it manifest the most in my body. I don’t like it but I’ll survive it and keep going and working to fulfill my dreams and hopes. If you have a friend who lives with a chronic illness please be kind when they tell you they are tired – that doesn’t even begin to explain it. We’ll do our best to bounce back – that’s what we want because we may have AS but it doesn’t have us!
Day 326 was created on my sewing machine!
In The Studio
1. Countdown – 39 days to The Big Apple Paint-A-Thon! – more details are coming together every day!
2. Apple Recipe of the Day – Apple crepes with Calvados Butter
3. Check out the new and improved emails from – The Daily Apple! If you haven’t already done so, please sign up to receive apples in your inbox. The New Daily Apple will include information that I don’t post on my blog including art, health, and of course… apples!
4. New Guest Apples from Artists in Marguerite Jill Dye’s classes at the Killington Summerfest, Killington, Vermont.