Having UCTD has changed my life; some ways for the better and some not so. Here I want to write about how I learned to relax and love myself, and it’s not as cliche as it sounds.
This is part of my continuing series on Things I’ve Learned with Undifferentiated Connective Tissue Disease (UCTD) - an autoimmune disease. UCTD is a lifelong disease that has no cure, but its manageable. You can read more in this series - see the published articles next to this on the right.
I’m the type of person who is always busy and on the go, doing too much at work, taking on too many projects, fast thinker even faster talker, always got some plans for the weekend, and ready to be there to help friends. You could go so far as to say I was the stereotypical definition of an extrovert who just also happens to have ADHD.
But something material has changed: with UCTD, my autoimmune system is working over time attacking my body, and instead of being able to carry on the way I was; my body dictates otherwise. Each new day requires coping with pain, physical symptoms of UCTD, impact of medications and all this before a day of work, staying healthy and spending time with my partner.
‘If you don’t love yourself, how can you expect anyone to love you’
There are days I think I’m doing ok: life is on track, so is work, everything is normal. Then someone will ask me a question on a video conference but my response is out of character: abrupt and my body language shows things are not normal. I started to reflect on this and take a mental note of why I was abrupt and what else was going on (for me).
At home, things changed - I’d be more tense and on edge. This turned into a bad-reaction when my partner would try to give me a hug and I’d jump. At the time, my mind was a million miles away, blocking out and ignoring pain signals, and my body was just trying cope with pain, by becoming even more more tense.
Reflection and Mindfullness
This was a bit of a revelation - Some days I will feel crap cause of the pain, symptoms or drugs I take. To counter this, What I need to do is reflect and check-in with myself throughout the day, just to see where I am at …
- Have I had a difficult night, with little sleep (happens frequently)?
- Am I feeling more uncomfortable today because of joint pain?
- Am I bothered by my cold hands or feet (Raynauds)?
- If I do feel sick, is it just before or just after I take Methotrexate? Is that making me feel sick?
- Why am I tense? Is it because of the Covid-19 Lockdowns? Do I need to change what Im doing or go for exercise?
The people I love the most and my colleagues at work who I spend the most time with know I have UCTD - they see the same person, day in day out. So when I know I’m feel crap, I also know these people don’t deserve moody, crabby me. I guess that’s being mindful.
What has the biggest impact on me, funnily enough is me. All the stuff I used to do, all the running around, having fun, working and living life - burning the candle at both ends, just intensifies my UCTD symptoms.
I’m learning to love myself - to focus only on things I want to do, and understand I have a limited amount of daily energy (not a limitless well).
This also means I have time for people who love me and support me. These are the friends and colleagues who are ok if I pass on meeting up and say I’m tired and not had a good day. This also goes for so called friends and acquaintances - they drain me and don’t support me, so I spend less time with them.
Learning to love myself has been so important, and its a big change for me.
Moderate Social Media Usage
You’ll easily find me on social media - Twitter and Instagram in particular. When I was first diagnosed with UCTD I went to these places to find what others had to say and share.
An important aspect of ‘Loving myself’ includes not spending too much time trawling through the scare stories on the internet. It’s very easy to read stories or look at pictures and think ‘this is what is going to happen to me’.
Many of the people on social media who are posting horrific, graphic stories have a combination of illnesses and are going through a hard time - they don’t just have UCTD, they’ve been let down by medical professionals, national medical systems and just want to share their suffering with someone and have it validated.
If you’ve read this far - This most likely will not be you. Just remember that.
You are not insane, UCTD is real - be mindfull, show grattitude towards yourself and living with UCTD will be easier.
I was diagnosed with UCTD in 2019, one thing I have noticed is a lack of information specific to UCTD. If you found this helpful, please let me know … it’s encouragement to keep writing.