The last couple of years haven’t been easy. I went through an unhealthy relationship that ended in a not very nice breakup. I moved to another city where I only knew one person who a few months later decided that we couldn’t be friends anymore because of how I deal with my chronic illness/disability. Another friend, whom I had known for 10 years, also ended the friendship, apparently because I had changed. Almost none of my contacts survived my moving away. So I was alone in a new city when Covid arrived. In addition to that my heath got worse. It hadn’t been good for years, but at least I could do some things. But by the end of 2019 I wasn’t able to take care of myself anymore. But a few months had to pass by for me to ask for help. The people who saw that I needed help and supported me saved my life. It’s been a year since and staying at home doing nothing but concentrating on my health really has helped me. It’s been a lonely year, but that’s okay.
Normally I’m not one to make New Year’s resolutions, but when 2021 came around I suddenly had gained enough strength to set three ‘goals’ for this year. Or let’s call them 'projects’, because whether I finish them or not - it will be a better year than the last few were. So the projects are:
- lose weight (yeah, I know, but I’m doing it for me and not because anyone says so)
- declutter my appartment
- get a dog
The last point actually was my therapist’s idea, because it would give me a reason to leave the house. And since I’m capable of taking care of a pet, we decided to put it on my list.
So far, I lost 13 kilos (28 pound), my flat is ¾ done - and I got a dog. It had been a lifelong dream of mine to own one and I still can’t believe it has come true. Her name is Pippa, she’s about 5 months old, and a Hrvatski Ovcar (Croatian Sheepdog). She’s such a lovely dog and I just love her. She spent her first few months roaming the streets of Gospic before being rescued and brought to Austria where I adopted her. She likes to cuddle and play ball and is just so happy all the time. My cat is not as happy as I am, but I’m pretty sure they’ll get along well.
This being said, I will dedicate this blog to Pippa’s and my journey getting to know each other and finding a way to live a life together - despite me having CFS/ME.
It’s been two and a half weeks now since she moved in and there’s one thing that I noticed the most: Some people suffering from CFS/ME say that they really benefit from pacing - doing something for a short while, resting, doing something and so on. I was never able to do that, probably because of my ADHD-brain being not satisfied with 'doing something for a short time and not finishing it before resting’. But ever since Pippa moved in, I’m forced to do pacing: She’s not house-clean yet, so I have to go outside every 1.5 hours. She’s still a puppy so she sleeps a lot - that’s when I can rest for an hour or two, before I have to go outside again. I never thought I would benefit from pacing, but I really do. It’s not that I’m healthy all of a sudden, but it helps me cope with the tiredness and fatigue.
To wrap things up… My life has changed big time and I’m so happy it has.
“It’s OK if your disability stops you from doing things. Not everything can be overcome”
This is just life. That’s what disability means - that there are things that are harder or impossible for you. You don’t have to be “overcoming” everything to be having a good life - do it whatever way works for you.
[Visual description: Cartoon picture of a road meandering over hills. The way forward is blocked by a roadblock with a stop sign on it. At the top of the picture is the above quote]
Please support my close friend, he is a trans man with unsupportive parents. He is also an incredible actor and works hard for what he wants more than anything in his life. He currently needs funds to be in a favourite show of his. Having chronic fatigue this is even harder for him and he has had too work so hard for this. Please support him in anyway you can!
Does anyone else feel stuck at the age they were when their chronic illness started to take over their life? For me it feels like time stopped and I got mentally stuck at that age, even though I’ve obviously been aging physically. Everyone else ages around me physically, mentally, socially and emotionally. Everyone I grew up with has started to build a life for themselves and seems lightyears ahead of me when it comes to life experiences but I’m stuck in this cycle of living the same day over and over and genuinely forgetting how old I actually am.
A lot of people have understandably got upset about “losing over a year of their life” to the pandemic but for chronically ill folks this isn’t new. Many of us have lost years of our life to our illnesses, had the experience of being stuck inside, socially isolated and missing out on things we wanted to do and we had to deal with it alone, while everyone else continued to live their lives and move on while we were left behind. We also didn’t get any empathy, we had to deal with comments about how we are lazy we were or lucky that we “get to stay at home all day”. I feel the same grief as everyone else over the pandemic, the lockdowns and the social isolation but at the same time, I’ve already lived it and I had to go through it alone.
Watching everyone’s end of the year re-caps, I’m realizing how little time I spent this year enjoying myself.
I’m in too much pain to really, authentically enjoy the experiences around me.
It’s like someone taking a hammer to your toe every three seconds and you’re expected to act as if nothing is going on and the event you’re at is more interesting than the throbbing pain in your toe.
It doesn’t work that way.
Pain keeps us from doing things and enjoying ourselves.
Every year I have this great hope that the holidays will be amazing and that events I’m looking forward too will be fun, but I’m always let down, through no fault of myself or loved ones, but simply because my body doesn’t allow me to enjoy myself.
But maybe this year, this year will be the one in my 21 years of living that will be different.
The Lord has blessed me with much music for His glory through the risen Lord Jesus Christ in me. But He only directs me to publish what He wishes according to His plans and purposes. It is as if the Lord uses each song or composition to teach me that not
Album 28 of Music Inspired by the Holy Spirit since 2013
Original Keyboard Instrumental Prayers Featuring the Various Instrumental Voices of Guitar, Strings, & Piano Solos Performed by Suzanne Davis Harden, through the Risen Lord Jesus Christ, Inspired by the Holy Spirit, to the glory of God the Father, In Jesus’ name, amen.
Midnight Prayers and Meditations, Volume 2, is the second chapter of…
