Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode I’m going to be chatting to you about Coping with Life Moving on without you.
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Let’s jump straight in.
As I sat and considered this week’s topic, it slowly dawned on me that Saturday was the 24th Anniversary of my life changing. That is to say, it’s 24 years since I was sent home from work with extreme dizziness. Dizziness that would be diagnosed as Labyrinthitis and later, develop into ME.
I’m sure you can imagine, receiving that ME diagnosis led to several changes. All of which I was trying to wrap my head around, so one of the last things to even enter my, somewhat limited brain space, was that my peers, my friends, weren’t going through the same thing. They hadn’t lost the ability to think or plan. They haven’t been accused by strangers on the street of having one too many drinks in a morning as they tried their best to walk to the doctor’s office for yet more tests and check-ups. And none of them had lost their ability to walk.
They were spending their days viewing possible flats to move into now college and university was over. They were wondering if they would qualify for further education or if they should just jump into the world of work. They were planning their next holiday and what to do when there. They were worrying about first dates with new partners and nights out with friends. They were not in the slightest thinking about whether or not they would be able to pull together a coherent sentence or walk across the room to pick up a plate of food.
They had their own new beginnings to concern themselves with. And that’s how it should be. Young adults should be out exploring and experiencing new things. They should be throwing caution to the wind and making mistakes that will give them spectacular stories to recall and laugh at in later life.
But that wasn’t me. That’s not what life had in store. If I had known that my life would be paused for almost 10 years when I first developed Labyrinthitis, I wouldn’t have believed it. It just seemed ridiculous that something that I thought of as a relatively simple condition, should develop into a full body, chronic illness that would rob me of so much.
For the first few weeks of my labyrinthitis and then into my ME, a couple of friends would reach out and invite me on nights out and for various celebration meals as our group progressed with their life goals. I wasn’t fit enough to venture out for a meal and on to a club, so these invitations dried up quickly. I lost touch with the group and couldn’t keep up with their news when it was passed on by others, so, before long, I was isolated.
It was only a few months later that I began to feel frustrated at my lack of recovery that I began to think about some of the things I was missing out on. It was upsetting to think about how many of my friends were doing “normal” 21-year-old things whilst I was struggling to get myself washed at some point throughout the day.
For somebody who was used to setting goals and working towards them, the sudden stop in my activity and the lack of ability to plan more than a few minutes ahead, would make me feel upset, angry and frustrated. I had to learn to stop thinking years ahead and start thinking in much, much smaller amounts of time. Like minutes ahead. And I had to stop thinking about larger goals and learn to lower my expectations.
For example, instead of thinking about the learning and development I would need to reach my goal of becoming a hotel manager within 8 years; I had to change my goal to being able to sit up and watch a 30 mins TV comedy show. This meant that I had to think about being able to tolerate light and sound. I would also have to be able to concentrate and sit in an appropriate way to view the TV screen. Each of these were steps that I would have to work on individually.
This meant starting to build this into my daily activities. So, I would have to work on building my tolerance to noise a little each day. Once I was able to do that, I could then work on doing the same with light and, again, with being able to sit.
As ever, this was not a straightforward process. I would make some headway, then get carried away, over do things and slip backwards.
I didn’t forget about the leaps and bounds that my peers were making but I took some comfort in the fact that I now had my own goals that were working for me in my current state of health.
That didn’t mean that the frustration, anger or sadness magically disappeared. The unfairness of the situation still hurt. But now, I felt like I had the tiniest bit of control back over my own life. It helped to give me some confidence and self-esteem.
That brings me to a few points from today that I’d like you to take away from this:
1. It’s normal to feel frustrated, angry, sad or any other emotion that presents itself.
2. Where you are now may not be what you want, but it may be what you need.
3. Rethink your future plans and review the tools you have to help you cope with how things are for you now.
4. When you review your baseline activities, review your future plans also and see what changes you would like to make.
5. Taking back control of your own capabilities can help you cope when life moves on for others.
So that’s it for today everybody. I’ve talked about my frustrations with others, and myself, as my friendship group moved on with their lives as my stood still. We touched on rethinking our future plans and we looked at some tools that may be helpful.
Thank you for listening. Please review, share and follow Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts and remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk
My Facebook group, Believe in ME Community, can be found by searching for the Believe in ME Community (https://www.facebook.com/groups/716634186122640/about)