15 juni 2014

My life as a spoonie

I don't really talk about being sick much anymore here on the blog or in different social media networks. About being a spoonie. About having a chronic illness that effects everything about my life. Absolutely everything. But recently I've felt an increasing need to write about it again, to come to terms. 

So here we go again.

To delete or not to delete
After I got my first diagnosis, Cushing's Disease, in 2011, I wrote a whole lot about it here. I used this blog as a platform where I could inform my friends and loved ones what was going on when I was too tired to meet up or even call. I also used it as a tool to help myself understand what was happening. Writing about how I felt was therapeutic - until it wasn't anymore.

Me in 2010, before the Cushing's
started to show. 
Sometime during 2012 I suddenly felt incredibly tired of writing about Cushing's Disease. I felt as if all I wrote about was visits to the doctor's office, different symptoms and general confusion about the future. I really didn't want to run one of those whiney blogs that made people miserable, so I stopped updating alltogether.

During 2013 I posted sporadically about completely different things in my life - like crafting and geekery and motherhood, but I didn't feel as if the blog had any purpose anymore. I even considered closing it for a while, but decided to just keep it as it was since there are so many posts from when my son was a baby. I really didn't want to risk losing those memories, so I chose not to delete.

To make a really long and agonising story short
This isn't going to be a story about my Cushing's. That part of my life is over, I don't have it anymore. (If you're curious you can browse through the posts from 2011 and 2012, they are in Swedish though.) In June 2012, on the day after my 30th birthday, I underwent the surgery that cured me from Cushing's Disease. But that did not in any way mean I was now well, or healthy. And that is what I will be writing about. Being "cured", but still chronically ill.

Me in 2012,
with active Cushing's Disease.
Hooray, I'm cured! Now what?
Shortly after the surgery the doctor's broke the news to me that being cured from Cushing's comes with a few surprises: withdrawal and neuroligical damage. Well, for 50 %v of the patients anyway. Bummer.

During the first six months after the surgery I felt worse than during the time with active Cushing's. My body had to be weened off the extremely high levels of cortisol it had been used to for years and years. I felt like crap to be honest, and spent most days in bed or in front of the tv. 

This sucked, I was supposed to be cured! I was supposed to go back to work, hang out with friends, play with my son and be a loving wife. Instead I was trying to survive another day - every single day.

As the months passed I started feeling better, little by little. But I was still incredibly tired, both physically and mentally. Slowly I started to suspect that life after Cushing's Disease wasn't going to be anything like life before it. 

Me now, 2014.
I'm a spoonie now
It has now been almost exactly two years since the surgery, and I have officially been diagnosed with Chronic Fatigue Syndrome (CFS), as a result of my Cushing's. This makes me a Spoonie, a person who lives with chronic illness; theoretically measuring personal daily abilities much as one would measure the proper amount of spoons needed for an event or occasion. Sometimes having an abundance, other times coming up short. 
And boy do I come up short. 

Don't get me wrong, my life is in no way a black pit of total darkness and misery. I have good days and bad days just like everyone else. I just have a different definition of "good", and a higher tolerance for "bad" than a person not suffering from chronical illness. And herein lies the problem; I don't look like a sick person. I always try my absolute best to keep smiling and to look on the bright side of life. You can't tell on the outside that something is wrong on the inside. I either have to expain everything to people, or just let them think that I am lazy, or stupid, or ignorant. 

So what is CFS anyway?
Chronic fatigue syndrome is a disorder characterized by extreme fatigue that can't be explained by any underlying medical condition. The fatigue worsen with physical or mental activity, but doesn't improve with rest. 

The symptoms are:

  • A new onset of severe fatigue for six consecutive months or greater duration which is unrelated to exertion, is not substantially relieved by rest, and is not a result of other medical conditions. Check!
  • Impaired memory or concentration Check!
  • Post-exertional malaise, where physical or mental exertions bring on "extreme, prolonged exhaustion and sickness" Check!
  • Unrefreshing sleep Check!
  • Muscle pain Check!
  • Pain in multiple joints Check!
  • Headaches of a new kind or greater severity Check!
  • Sore throat
  • Frequent or recurring tender lymph nodes 
  • Brain fog (feeling like you're in a mental fog) Check!
  • Difficulty maintaining an upright position, dizziness, balance problems or fainting 
  • Allergies or sensitivities to foods, odors, chemicals, medications, or noise Check!
  • Irritable bowel syndrome-like symptoms such as bloating, stomach pain, constipation, diarrhoea and nausea Check!
  • Chills and night sweats
  • Visual disturbances (sensitivity to light, blurring, eye pain) 
  • Depression or mood problems (irritability, mood swings, anxiety, panic attacks) Check!
There is no cure for CFS. Treatment focuses on symptom relief. I know, it sucks.

So what now?
I don't know. Time will tell how much I will improve. Perhaps I will wake up one day and feel almost normal. Perhaps this is what life will be like from now on. My plan is to make the most of what I have regardless. At the moment I am working half-time and loving every minute of it. Sure, I am as good as dead when I get home, but it works thanks to my angel of a husband.

It feels pretty good to have written this introduction to my life as it is. Now I can tell you about it a bit more freely. So make sure to come back and hear me compain, it will be a hoot!