A Chronic Voice – Link Up Party
Every month, Sheryl from A Chronic Voice provides prompts for people to write
“It is a monthly get together for anyone with chronic illnesses. An opportunity to share, to listen, and to learn from one another. It is a great way to provide insight into life with chronic pain, from many different points of view.”
This is my first month taking part, so here goes…
Reminding
I often have to remind myself how far I have come. My symptoms started in August 2014 and May the 10th 2018 was my second year anniversary of open back surgery. Although I still have multiple symptoms I have come so far from the early days of my illness.
I have had to deal with quite a lot of different things going wrong and upsetting my apple cart! At one point I felt so alone and vulnerable that I thought my life was over. But on the flip side, all these things have helped shape me into who I am today. I have finally found my passion in life, learnt new skills, got a new career and I have met some amazing people along the way that have helped me to create a new and improved Feel Good future for myself.
I am not saying everything is tickety-boo. There are still ups and downs. Good days and bad days. Tears and plenty of pain! However, if I keep reminding myself how far I have come it makes me feel good at all that has been achieved in such a short space of time.
Pacing
Starting a new job as a Community Organiser for long-term health conditions/ disabilities at Grapevine Coventry & Warwickshire has meant I have had to up my pacing game! For those of you who are unsure of what pacing is, take a look at the spoon theory by Christine Miserandino
It is a technique they taught me when I first got diagnosed with ME. It has also helped me cope better with the pain caused by Symptomatic Tarlov Cysts and subsequent nerve and scar damage. It is not an easy task to do. Mainly because you always want to do more and often don’t accept the limitations your body is putting on you. Also, when you are feeling OK you don’t want to slow down or rest which can result in a flare-up and not always on the same day. Sometimes flares can happen days afterwards, which is kind of annoying and inconvenient!
So for me to be able to work part-time and also work on Feel Good in my spare time I have had to think carefully about how I pace myself and structure this into my diary. It is a huge learning curve and I often don’t get it quite right but I am extremely mindful it is what my body needs to be able to function.
Surrendering
Sometimes you just have to give in and surrender to whatever is causing your pain. I find running a hot bath filled with Epsom salts and lavender helps, or lying on the sofa and zoning out whilst watching trash TV. My family laugh at me as I watch every single version of The Real Housewives, Love Island, Ex On The Beach, Geordie Shore, Little women, etc, etc! But the reason is simple, I can switch off an not have to think! If all else fails I surrender the day and go to bed!
Improving
Last month my other half and I enrolled at a local gym, mainly so we could use the pool. As some of you know my sister, Mel is a keen wild swimmer and has started a supportive Swim & Tonic Facebook group and blog.
I am inspired by their stories, photos and energy for swimming. I have tried wild swimming myself, so far I have swum at Dosthill Quarry, Cliff Lakes, The River Avon and the Welsh Sea. However, I haven’t entered any wild waters this year – mainly because it has been too cold but also because I haven’t had much strength since starting part-time work.
As I want to immerse myself in the warmer wilder waters once again I thought the best way to improve was to start with gentle pool sessions. At first, I only managed a couple of lengths as I was scared of increasing my pain levels. But the other day I managed 50 lengths of a 20-metre pool. Each time I go I feel my stroke, strength and stamina are improving. I am also feeling the extended wellbeing benefits swimming can bring including a better nights sleep!
I think I will only need a few more pool sessions before I can brave the wild waters, so watch this space…
Flowing
Flow – Being completely involved in an activity for its own sake. The ego falls away. Time flies. Every action, movement, and thought follows inevitably from the previous one. Your whole being is involved, and you’re using your skills to the utmost. Mihaly Csikszentmihalyi
When I put pen or pencil to paper I enter into a state of flow. For me, doodling has helped me to take my mind off my pain, erase my anxieties and help me to forget about my problems. The ink covers the page and leaves behind marks that mean something at that particular time.
For you to see what I mean I thought I would try out my new tripod and record you a little time-lapse video. I am hoping they will get better with time and I will learn from my mistakes – Next time I will make sure my iPhone is horizontal, not vertical so that it fills the screen!
Get Involved
I have really enjoyed using Sheryl’s prompts if you would like to give it a go find out more by clicking here. The rules are simple and there are new prompts at the start of every month.
Thank you so much for reading – I am hoping to get involved with Sheryl’s link up parties more often as well as publishing more blog posts written by me and the #FeelGoodCom guest bloggers. If you would like to join our growing community drop me a line or subscribe to our monthly newsletter…
Sheryl
June 22, 2018 @ 4:29 pm
Hi Melissa,
Thanks so much for deciding to join us for the June linkup, it’s always a treat to read every single person’s blog entry! It’s interesting to see how each and every single one of us that has written an entry are all struggling with the pacing bit 😉 It’s definitely tough to do. I wish you all the best at your job, and also with the wild swimming – that sounds exciting!
Melissa Smith
June 23, 2018 @ 12:03 pm
Thank you so much for starting the link ups – I think it is a fab way to get the conversations started! Unfortunately, pacing is hard – maybe because it is about acceptance? Will keep you posted with the swimming…