As the year drawing to an end, I am feeling a lot of anxieties… like my head is just so full of thoughts, plans, possibilities, what-ifs, “goals” and “aspirations” for the next year ahead…
I am finding it very difficult to shut down and quiet my mind. I think the busyness of the Christmas and holiday season has triggered the downward spiral of the balance and peace of mind that I have slowly tried to tune into since the beginning of this year.
I have so many books and to-do-lists, some of them usually bring joy and inspiration… but I don’t even want to touch them. The only thing that soothe me for the last few weeks has been listening to On-Being podcasts on my long commute to and from work. I would recommend John O’Donohue and Cloud-Cult episode to listen to first.
This summer, I have also continued to wean down on my steroid dose. I started with 3mg at the start of this year and now at my lowest of 0.5mg (since last weekend)… I have taken the slowest road to get here and yet, I am still finding it extremely challenging.
At the end of October, I started trying acupuncture as a way to help with my energy level. It took a few weeks for things to kick off and some honest discussion with my acupuncturist. For the whole week of November and most of December, I was feeling very good – almost pain free, some digestive issues, sore throat, but the fatigue was kept at bay. It felt so strange to be able to go and do stuff for the whole day without feeling tired. It felt like… almost too good to be true, like I was living in a daze.
But since last week, when I dropped my dose to 0.5mg… the fatigue came to haunt me again. I couldn’t shake off the tiredness… I looked fine, but I couldn’t muster up the energy to strike conversations… I went to get my hair cut yesterday after work and the hair-dresser was very enthusiastic, but I couldn’t matched her enthusiasm even though I do like and appreciate her work and talent. I started judging myself then… on the way home, I played the scenes at the salon in my head, and listened to the different scenarios and judgements I gave to myself… “maybe she thought I was weird…”, “i wonder if she thought I was too pov to pay for her haircut… should I be paying with cash instead of card?”, “why didn’t I say something other than repeating ‘thank-yous’ so many times”
One thing I noticed about my mind or personality since Lupus was the obsessiveness. I often could not stop thinking or playing different scenarios in my head – to the point that it gives me migraines and “foggy-ness”… It feels like, my head is suffocating. Anything can trigger this – if it is something that I can do, like, if I have been thinking about making something, I have to do it straight away to stop myself from the excessive, obsessive thinking… I guess, it has been quite a positive thing so far because I have been getting things done. So, we’ll see if things get any stranger than this from now on.
Another thing that struck me is this:
The weeks when I had my weekly acupuncture therapy and my energy levels were very good, I ended up saying yes to so many things… on top of what I normally do, I also tried to do some housework, baking, crafting, outing… and then future planning and saying yes yes yes to so much more stuff that in the end, I was left breathless again. I stopped listening to my body. I went back to me before Lupus; to pushing myself to please people, to doing things that I do not truthfully enjoy or believe in.
Then there is the guilt-trip that I put on myself. Back then, I was extremely exhausted all the time… but now, even when I still feel the fatigue, I felt that I can still go on… Back then my energy level would be about 5-6 then dropped to 2-3, but now, it probably stayed around 7-8, and dropped to 4-5… so, even though I started feeling very tired, I wouldn’t feel that I deserve to stop and take a break until I hit 2-3. And if I do choose to take a rest, I do not feel good about it.
It’s funny that I felt so much more peaceful about myself when I was sicker, than now, when I feel like I am nearly there – to join the rest of the healthy people, yet, not quite there…
I haven’t had the chance to wish anyone personally, but I sincerely hope that you are all well. I hope that this year has taught a lot of wisdom, love and redemption for ourselves and those around us. I hope that we will continue to forgive ourselves and our body, for not being able to do all the things that we want it to do… and yet, for still being here anyway; fighting to keep us alive, even with all the weaknesses and pain it has to endure.
I am sincerely grateful for your company and support this year with the Lupus Care Community.