The Evolution of The New Normal

As someone who has chronic pain conditions and invisible illnesses, there is this feeling of knowing that your life as you know is constantly going to change. You get comfortable with knowing that this is your life now, then something happens and you have to adjust. It’s a constant change in my own life and I know it’s the same for a lot of other fellow spoonies that I know.

During April last year I had a terrible flare up from pain and was absolutely terrified since this had happened many times in the past but my life was very different and I didn’t have the same supports in place that I did before. Over a year ago, I was engaged to a woman who also had a chronic pain condition and she was able to go to appointments with me, absorb all the information since I couldn’t due to memory loss and she was such a huge support. She was able to empathise and understand the process I was going through.

Thankfully I worked through the flare up and was back to feeling slightly human again. Things were going well, I had fallen in love with a wonderful man who I began dating in August but I did had a massive worry since he is able bodied. As a lot of people like me in a new relationship, I tried to hide the pain I was in and act like I was capable of a lot more than I was. He has known since we met that I had chronic pain but didn’t know the full extent of my daily pain. That’s my fault for not being as honest as I should have been. But I personally wanted to protect the man I love from the hell my body puts me through, I have learnt finally that protecting him in that way doesn’t help either of us. I’m learning to be a lot more open about my struggles and it continues to help my relationship every day with the man I love.

Unfortunately, I had another flare up a few months ago that has spiralled and continues to be a terrifying time for me. The things that usually work, haven’t worked. I am incredibly lucky that I have found such a good GP or I would be in an even worse situation than I already am. I thought if I just rode out the pain, it would go away like usual. But it hasn’t.

I’m getting worse and to be honest, it’s really scary. My doctor and I have been trialling new medications, I’ve had scans and tests, we’ve talked about specialists. I’ve been referred to a pain clinic and I’m waiting to hear back. This whole process becomes irritating since I’ve done all of the same things so many times so it can be hard to stay positive. I’ve had wonderful people offer to help me and I’m trying to allow myself to accept the help, rather than pretend that I can do all of this on my own.

My immune system is basically non existent and so I am getting some kind of virus at least once a month which is draining physically and mentally. I’ve been in my house 95% of the time since the flare up happened and the isolation isn’t something I can explain unless you’ve experienced it yourself.

But I have hope. I decided it was time to get a mobility aid to see if I can become more mobile and take baby steps towards being able to leave the house. It’s going to take some time since walking down my driveway is exhausting but I refuse to give up. I don’t know if this heightened pain is now my new normal but if it is, I will learn to live with it. I’m not giving up on myself, not just for myself but for the people who love me.

Giving up would be easy. Staying in the house for the rest of my life would be boring but it wouldn’t hurt as much as forcing myself to move. I’m beginning with the small stuff. Showering daily, doing the washing, wiping down surfaces, making myself lunch, walking to the end of the street and back. These are the things I’m trying to do so I can get my body to a place where I can take my son to lunch, or go on a date with my partner, dinner with our friends, meet new people.

There are going to be a lot more bad days, but there are also going to be so many good moments. Learning not to get angry at myself if I can’t wash my hair or if I have to lie in bed for most of the day so I can have a shower.

I have a wonderful new friend who told me about this brilliant, achievable way of reaching goals called Minimum Positive Action. When she explained how it’s helped her, it clicked in my mind instantly and I got so excited, I felt validated in the difficulties I’m experiencing. So each day, I will have one goal to achieve. Just one. If I achieve anything else, that’s a bonus. But having less pressure and not pushing myself so hard will be an adjustment since it’s so easy to feel like a burden on everyone who loves you when you’re chronically ill; whether that’s physically, mentally or both.

I’m excited about this new journey! I’m going to be sharing it on my Instagram since I recently put up a post about being genuinely authentic. Instagram has become all about unattainable lives and pretending that people’s lives are so perfect. I’ve never been the type of person to pretend I’m okay just to make others more comfortable. I shared a picture of myself, looking how I do every day with my cane and it was overwhelming the response I received, currently it has over 500 likes which isn’t a lot to most people but to me, it’s mind blowing. This is the path I’m going to follow so I can slowly achieve what I want to achieve but without adding pressure to do more than I’m capable of. If you’re in similar situation, please join me on this journey and let’s support one another.

You can follow my journey as a writer and as a chronically ill human being at @jpea1991. I’ll be using the tag #myrealnewnormal and I’d love to see other people become involved. Let’s show the world that invisible illnesses may be difficult but we are stronger than we realise, we all deserve support, love and community. Let’s support each other and create a genuine safe space.