Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode I’m going to be chatting to you about Independence & ME. What I mean by that, is Mental Resilience.
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Let’s jump straight in.
As we all know by now, when you have an ME diagnosis, you lose a lot of things. Aspects of your life that you always believed would be in your control are suddenly being controlled or looked after by other people.
I remember this specifically during my time in hospital. It seemed that my opinion or what I wanted didn’t matter. I was stabbed with needles to have bloods taken. I was wheeled down to an MRI scanner. I was manoeuvred into position to have a lumbar puncture done. None of which was through my own choice. It seemed like, once I was pushed through the hospital doors, I ceased to be a person with thoughts, opinions or choices. It appeared to me, that I was expected to just do what I was told by the experts. What happened to me being my own expert? When did a medical professional’s bedside manner stop being about the patient and start being about the process?
In speaking to other MErs, all of whom are at different levels, their experiences all sound so familiar. With a few exceptions. I don’t want to tar every medical professional with the same brush. After all, they are as different as we MErs and we don’t all like be lumped in together when we are all impacted in a variety of ways.
But it’s not all about the medical side when we think about losing independence. It could be about becoming reliant on your neighbour to walk the dog for you. Or your parents to help you do your food shop. It could be your partner taking over the cooking and cleaning or even needing to brush your teeth from the safety of a wheelchair instead of being able to stand at the sink. All of these aspects can rob us of our independence and that in turn, can weigh on your mind.
Brain fog aside, I’ve spoken previously about living inside my own mind when my body was giving up its control of my legs. For me, no matter what I was facing, and continue to face, controlling my frame of mind and how my emotional state impacts me, has been crucial. That’s resilience. And it can be a vital skill for all of us. We’ve all experienced tough challenges in one way or another and resilience can help to get us through them. It’s also a skill that can be improved with support.
Let’s clear up something first. Being resilient isn’t going to miraculously cure you of ME. I’m sorry. If it was the cure, we’re all looking for, believe me, I’d be shouting it from rooftops! Unfortunately, it’s not. It can be a useful tool to keep at hand, however.
Resilient people are the ones who start to rebuild their lives shortly after a tragedy. So what do these people have, that others don’t?
For starters, having a good insight into your own circumstances and working out how to change them can help. I realise that some of the changes you may want to implement, might be out of your abilities for now, but that doesn’t mean you should dismiss them. Can you break these changes down into smaller parts that you could work towards?
Resilient people have the ability to solve problems and are not afraid to ask for help, support or guidance. So have a think about your support network, or the people you reach out to for help in different situations. Is there anything they are doing for you now, that you’d like to reclaim and try for yourself again? Why not work with them to see what you can put in place?
Resilient people are those who are seen to take daily actions and set goals that they go on to achieve but they are also people who try again when things go wrong without giving up. For me, this is also a core trait of MErs. I think our stubbornness, our determination, is a strength when it comes to finding our resilience and working towards our independence. The tricky part can be knowing when to say “no” because we’ve reached our limit, and when to ask for help again.
What can you do to claim your resilience and begin to take back some independence?
So far, you have survived every challenge you have faced! So there’s strong evidence to suggest that you’ll get through this ME challenge too. Taking things one day at a time, or even one hour at a time will help you to maintain a calm demeanour and recognise your own boundaries.
It’s also key to keep perspective. Our imaginations can run wild when we think about all of the things we want to do and the things we may have lost. We can build them up into huge mountains of disasters and before we know it, we’ve lost sight of where were started and what we can do now, in the present. So try to keep things realistic.
You’d never just decide one day to run a marathon and then go and do it the very next day, would you? You’d break down to main goal in smaller, more manageable parts and work towards them. The same can be done with building your independence and your resilience.
Reclaiming ourselves and the daily tasks we go through can be a pain. There’s up and downs as our condition changes. One of the easiest ways to eliminate pain, is to share it with someone. Talking to someone about your situation has many benefits. Sometimes, just hearing our own words can spur a moment of realisation. It can bring clarity to our thoughts and lets us see that, perhaps, things aren’t as bad as we’ve built them up to be in our minds.
By sharing with another person, they may also share with you. They may share their opinions with could shed some extra light on your situation. Just having somebody listen to you shows that they care for you and you are not alone. We scroll though social media and it seems like everybody else is happy, laughing, loving life but this doesn’t mean that’s their reality. We don’t know what’s going on in their heads if we don’t ask them. The same is true for you. Your family, your friends, your support network, won’t know that you are feeling like you are losing your independence, or that you want to try to do more for yourself, if you don’t share that with them.
That brings me to a few points from today that I’d like you to take away from this:
1. It IS important to have a feeling of independence.
2. You can work towards this be reclaiming small things. Perhaps you’d like to try making yourself lunch a couple of days a week to start with. Or you’d like to take part in 20 mins of family time at the weekend. Think through what you’d like to start with.
3. Being able to say “no” and feeling the power of that “no” can be helpful. No is not a bad word! It helps us.
4. Know your boundaries and recognise when to ask for help again.
5. Find a talk-partner – somebody you can talk and listen to. Or find more than one and create your own group of people who listen to each other’s problems and help each other with solutions.
So that’s it for today everybody. I’ve touched on my frustrations of what losing my independence just in a hospital visit felt like. In doing so, I’ve chatted about what resilience means to me and given some pointers as to how you could begin to build yours and reclaim some independence.
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 or join the Believe in ME Community on Facebook by going to my facebook page (@rhonabartoncoaching)