Updated: Dec 8, 2021
...WHEN YOU JUST WANT TO SHAKE YOUR TOOSH!
Today I want to share with you a recent experience I had after being asked to a ball. Living with complex health challenges means I have to pace to be able to do the things I love. I share with you how I manage the emotions, and how alcohol affects my symptoms and how being surrounded with the right people really helps.
The other week I went to a charity ball, it was a last minute invite from a very, very special family who run an amazing charity called ‘Friends of Alfie’, who support disabled children in the Black Country in the West Midlands. This family recently lost their beautiful sister and daughter, Kate, who sadly left this world on the first of December last year.
I was very, very fortunate and privileged to be Kate’s soul midwife at Mary Stephens Hospice and was beside her as she took her journey to her end of life. Kate was such a special soul. So to be invited to a ball where the charity were giving a beautiful memorial to her really was an honour.
Kate was heavily involved in the charity for 10 years or more and left a huge legacy. The ball was a wonderful tribute to her.
For those of you that don't know, I live with a really complicated neurological condition as well as fibromyalgia and M.E. My symptoms intensified following the spinal trauma I experienced, although I actually think I may have had M.E in a mild form before then.
Generally I'm good, I'm really, really good. But of course, I do have to live differently to a lot of people my age. I want to share this right now for anyone who is struggling with low energy for whatever reason. There is not one thing that triggers low energy, because we're all different, we all have very different triggers. Also there is not one thing that will support it, improve it, fix it or cure it. Not one thing. I can only share my experience with you in the hope that it might spark an idea for you to try certain things.
So for me yesterday I had been asked to go to the ball. Events like this can take a lot of energy out of me. I have to manage my spoons, if you don't know what the spoonie theory is go and check it out.
Even getting ready and doing things like washing and drying my hair can take a lot of spoons out. The ball started at 630pm and I just went with the flow and listened to my body. I’ve learnt to listen to my body at all times. I think we left for home around 11pm which is actually a long time for me to be out.
Firstly, all of us probably do have some social fatigue now to some extent, because none of us are used to it. A lot of us aren't used to socialising in big groups anymore. So that is a layer that everybody has to deal with. Staying out and enjoying myself for that amount of time was really good for me with everything that I have to manage health wise. So I'm feeling incredibly proud of myself. I would have loved to have stayed out until the early hours of the morning. I was with some amazing people in a beautiful venue for a wonderful cause. I was really loving it. But I had to listen to my body. And when it was time to go, it was time to go.
How do I deal with the disappointment of limiting my joy?!
There are lots of things you can do.
For me today I am feeling into gratitude for what I can do. I'm very, very grateful that I can still do something. Around five or six years ago I was feeling like if I couldn’t do things how I want to do them then I’m simply wasn’t going to do them at all. I was in this mentality because I was experiencing a lot of pain about how much I had lost socially. However now I'm at the point where I have a lot of gratitude for the things that I can do.
I have adapted and grown into my new life, a life which I actually love. Who knew that having to deal with health trauma would give me a life that I absolutely love?! There is always a positive to be found.
Some days I might pop out for an hour and just as the party is really getting going, I have to leave. But I'm so grateful for that hour. It is important to be grateful for what you can do at that moment.
I wasn't surrounded by all the right people in my life at first. After my condition was diagnosed I wasn't the same person and the people around me were coming to terms with this. Some people would make me feel (and this feeling was coming from myself as well), guilt and shame for leaving and their frustration made the situation worse. Now I pick and choose events I attend carefully and also who I go along with is important as I need to be around friends who will accept and understand my situation.
I don't drink alcohol anymore, and that really bothers some people. It really does! And I don't know why. My body began showing me signs it didn't like me drinking alcohol anymore. I decided to honour my body and help support myself. The last time I took a sip of alcohol, it was gorgeous. We went for some tapas and I had two sips of sangria and temporarily lost my speech and the use of my left arm. This shocked me and made me think “Why am I doing this to my body”? My body was telling me that alcohol wasn’t supporting me. So I gave up and I truly haven’t missed alcohol in my life. This does however have an impact on my social life for example, I don't want to go to bottomless brunches. Why would I? They are something that I'm okay to leave but occasionally that means I don’t get to see the people I love as much or socialise with them.
I surround myself with people that are okay with my new life, who aren't going to try and shame me and make me feel bad for leaving a party early in order to take care of myself. The people that love me want me to look out for myself - they realise what I need and that is wonderful.
If you are struggling with your energy levels, whether that's long COVID, fatigue, anxiety, or anything else. Take baby steps, do what you can and don't force yourself past that point right now because one day you might go out for four hours and be fine. Another day, you'll go out for an hour and it might take you all the next day to recover. Go with the flow. That's my advice.
The day after the ball I took a good full on self-care day. I had breakfast in bed and then I went out in the sun to eat energy boosting foods for lunch. I even had an afternoon nap in the sun.
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