Simplify life

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.




Fighting Fatigue

I’ve been on full-time sick leave for almost 5 months now. I was diagnosed with fatigue syndrome and according to my doctor it is caused by all the pain I have had for more than a year. The pain has lead to severe fatigue–some level of fatigue I’m used to considering my RA–and that in turned has caused me to be stressed out and so exhausted that my body/brain stopped functioning normally.

Before my sick leave I was constantly exhausted and in lack of energy, and my days consisted of either working or resting/sleeping. I slept on the way to work and I slept on my way home from work. As soon as I got home I went to the sofa and rested before dinner. After dinner and the clean up I went back to the sofa and by 9 pm, at the latest, I was in bed. Rest/sleep had the highest priority in my life and it completely took over everything else. I skipped doing things because I had no energy for it. Not even the weekend gave me enough time to be fully rested and ready for work on Monday morning.

I like my job and even though I felt so bad I somehow managed to hang in there for a long period of time. I ignored warning signs and just kept going… some mornings when I woke up I was so exhausted that it felt impossible to get out of bed but somehow I always managed to do so. I did not want to skip work, I needed to be there… I had responsibilities and my job was, what I thought, the only way to keep me sane.

My brain was always foggy, and my ability to concentrate and remember things just got worse and worse. I was sitting in meetings at my job and I knew people were talking because their mouths were moving but I could not register what they were saying. Or, I could sit at the dinner table with my husband and he was talking about something and within minutes it was like my whole brain just shut down and I told him that he could just stop talking because I could not hear what he was saying.

I’m better now… I can hold conversations without any issues. I can sit in front of the computer for longer periods and concentrate on items I’m familiar with. I remember things I hear and things I need to do. I actually enjoy doing things again and I rarely need to take naps now. I’m still not pain free but it is better thanks to higher dosage of cortisone I’ve been on for 1,5 months. I’m working on going back to my normal dosage again though and slowly lower the dose every other week.

My major issue right now is noise/sound… I still have problems in larger groups and when there are different conversations going at the same time. I can barely listen to music in my own house so being in public can some days be difficult–seriously, do there need to be music playing EVERYWHERE?  I always have my ear plugs with me in case the noise is too annoying. A friend of mine recommended listening to rain when I feel stressed and need to calm down and it does actually help, although it is quite weird to sit on the train and listen to rain when it’s sunny outside the window. 🙂

I’m focusing on my sleep and have started to meditate each evening before I go to bed and I’m trying to get a routine of walking and exercising. I’m also back to eating 80% paleo and always dairy free. I’m hoping these things will help me to continue feeling better and getting full control over my body and brain again.

Next week I will be back at the office. I’m scheduled to work 2 hours a day all throughout the month of September. I’m really looking forward to it, and it will be nice to have a daily routine again and to meet my co-workers. I have to confess that I am a bit nervous though, I felt so bad when I left 5 months ago and I really don’t want to feel that way again. I’m keeping an open mind, trying to have positive thoughts and we’ll see how it goes.