It’s been just over a year since I first was diagnosed with exhaustion syndrome. When I got the diagnosis I had been fighting to be up and about as normal for several months. Some days worked better than others, but towards the end of last Winter I felt that each day was a blur and I still don’t understand how I managed to perform at work. I thought it was my normal “end of winter season RA issues” that just had gone over the top. I could not have imagined that one year later I would still be on sick leave. Yes, it’s part time now, and since January I’m able to work 50% which I’m happy about. Last time I saw my doctor and I told him that I was so frustrated that it takes so long time to heal he reminded me that I should be happy that I at least can work 50% instead of nothing! He is right… I should be ecstatic about the fact that I am able to function around 4-6 hours a day pending what activities I’m doing. Last year at this exact time all I did was a daily 2K walk in the woods and then I rested for the rest of the day. It’s just so annoying to feel that I want to do more things than what my body can handle.
I’ve always had to prioritize my health ever since my diagnosis with RA in 2009. I’ve skipped so many fun activities these past years that I’ve lost count. I thought I knew how to handle my illness and keep it “under control”. The RA together with the exhaustion syndrome have forced me to scale down even further. I’ve not had the energy to meet friends nor family. I’ve signed up for events that I’ve had to cancel in the last minute because I had go home and just rest on the sofa. Larger gatherings are now quite impossible for me as loud noises makes my energy levels disappear, actually even being on the subway or bus sometimes feels overwhelming. I’ve not listened to music nor audio books for almost a year. The past months I’ve started trying to every now and then but it works for max 20 minutes before my head feels like it’s going to explode, not because I have a headache but because I just can’t process what I’m hearing and I loose all focus and concentration. Yesterday I actually shocked my husband because when he turned on the car he radio was on and a ABBA song was playing and I actually started singing a little bit. That has not happened in ages! I guess that is a good sign! 🙂
For the past months I’ve started thinking about my life and how I want to live it because as it is right now it is not going in the right direction. I want to work full time, I want to be able to learn new things, I want to see other people on weekdays/weekends and most importantly I want to feel strong and energized. I want to feel happy about the life I’m living. There are lots of “I want” there and in order to be able to say “I am” I need to reprioritize my life and make changes not only related to exercise and food choices. Luckily I have a husband that is all-aboard and understand that we had to regroup and analyze they way we were living. So, long story short, during our one month vacation in February we came to a major decision… we decided it was time to sell our house and move closer to the city to allow an easier and less stressful way of life for both of us. No must-do’s around the house such as yard work and other things we really don’t enjoy doing as home owners, and most importantly no long commute.
2017 is the year when I simplify my life! OUT with all the bad energy and IN with all the new exciting parts… I still need to sort out some bits and pieces, but I can’t wait to have a shorter commute to work, to be able to go to meetings with my RA group on weekdays, to see friends after work, and to fill the free hours of my life with fun things instead of having to commute to the suburb.