Month: Feb 2023

Moving the Goalposts

My card games have come up with a new wrinkle. You’ll tell me it’s not new and I’m just unobservant. I get extra points for doing odd things. For instance, 50 gold coins for clearing 8 spades in a row, random or what? That appeared today after I happen to clear 8 spades in a row. They are fitting the scoring to my achievements: moving the goalposts. Moving goalposts to fit your achievements is not a bad idea when you are limited/disabled.

Before I was ill, I hardly ever sat down, hated doing nothing. I hardly ever watched TV. I was always up and about, doing major DIY projects, re-building car engines, walking great distances, swimming, exploring, etc. When I became ill the hardest thing was being forced to stop. I had to move the goal posts. For me, writing has been a life changer. Something that occupies my brain and uses my imagination. I have always loved writing, but never sat still long enough to do much of it. Instead of focussing of the loss of my mobility, I focus on writing.

If you have recently had a limitation dropped upon you; and it can feel like that: As if a great weight has been dropped upon you. If that has happened to you, then my advice is this:

1/ Take a bit of time, you will need to grieve; but don’t stay in that grief; don’t wallow.

2/ After taking that time, grieving about the loss (I know that to a degree, that is ongoing) look at what you can do, not what you can’t.

3/ Think of practical or mental things to do. Hobbies you have long since let go of, maybe from childhood. Things you always wanted to do, but lacked time for. The very first thing I did was lay in bed listening to podcasts (you might prefer music, or audio books.) Then I read all the classic books that I had always wanted to read.

Remember, that is just what I did. You will have your own ideas. From reading to puzzle books, watching every movie you wanted to see; to listening to audio books. If your hands work well enough you might do jigsaws or knitting. Perhaps a craft or model making (these also depend on dexterity and sight, find what works for where you are.) If your brain is up to it you might study. I am only throwing ideas around.

The OU (Open University) or an equivalent in your country, are brilliant if you are up to studying. The OU make adaptations for disabled people, both in time allowance and physical needs. Maybe you could do that course you always wanted. It’s online, done at home, from your bed if needed.

Remember, the important thing is to adjust your perspective, your expectation, your goals.

I have already said that we need time to acknowledge our loss and grieve. But after that, no amount of shouting, screaming, saying ‘it’s unfair,’ or ‘why me?’ will make any difference to our lot. It just makes you feel worse.

Put the goal post somewhere else and score a goal.

Move the winning line and cross it.

Set up that target in a place you are aiming and hit the bullseye.

But this is not a contest, the goals and winning I am talking about are not competing against anyone else. You are just achieving something, taking back control. The sense of hopelessness and failing that we can go through with the disability/limitation of illness or following life changing accidents knock us flat. It can give us a sense of powerlessness.

I am saying this: you can take control again. Even if it is an activity that is totally in your head. No physical movement at all. I began this process before I could even leave my bed, by listening to podcasts, then music. I moved the goal posts. Achievement was no longer how far I could walk. Nor what I could physically do. I changed the goal to one I could achieve. Make those goals achievable and you have taken control again.

Any achievement can be a mountain climbed when you are seriously ill or disabled.

Each small step is a marathon completed.

Move the finish line and feel the sense of being back in control.

I know that illness robs us of a sense of being in control.

These small steps help us in feeling empowerment and purpose.

I have written this last series of blogs because I believe they are universally true. I hope they can be of help to some.

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Waves of Change

I often hear people ask questions about how to cope once they are stuck at home due to illness, accident or disability.

First, briefly you need to know that I understand. I live a life of limitation. Even though we now live in an accessible home, I still spend a massive amount of time limited to my bed. Pain dominates my days. I really do understand. I have learnt a thing or two about coping over the years. These are the things that helped me.

The first thing to say is that it’s OK to grieve over loss. In fact it is healthy to do so. Acknowledging our loss is an important step in moving forward. But staying in that grief and sadness forever is not healthy or helpful. So I have found that I needed to tackle my attitude.

Attitude is the biggest key to how we feel. Look at it this way, when your life falls apart and everything changes you still have choice about how you think. You still have some control. You have a choice of how you look at things. You can control how you think about what has happened. I made a conscious decision to be positive. I do not feel sorry for myself. That way lies despair and hopelessness. Every day when I wake up I have that choice. I have found it is not a one time thing. When I am hit anew by pain. When I feel afresh my limitations. I have to remind myself:

I am NOT going to give up.

I am NOT going to feel sorry for myself.

I am NOT going to focus on the negative.

Instead I DO focus on the positive, however small that is. (Warm blankets, a glass of water, programmes I enjoy on TV, friendly faces… whatever it is)

I DO keep going.

I DO feel joy. Joy is the result of all the other things I outlined above.

If you rail and rant and fight against the limitations that only leads to frustration and pain. I liken it to the way you deal with a massive wave in the sea. Can you picture that?

If you try and stand up when a giant wave comes at you, then you get knocked over and winded. If you float over it and go with it then you will not be flattened or winded, you will be lifted up by it and float upwards. Go with the difficulty rather than fight it. Allow new ways of coping to naturally show themselves after you have had the old ones washed away. They say change is painful, yes it is. But it is even more painful when you resist it. It’s easier to get through difficult times if you stay positive looking for the good that will come of it.

Attitude is the key to everything. It changes how we feel and how we act. Once we have acknowledged the pain and loss. We choose how we react to it. Then we can live a life within those new limitations and still find joy. I don’t claim it is easy, but you will find it better than sinking beneath the waves of despair.

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Avatar 2

No, this isn’t about the movie, just thought I’d copy the name. Hands up who knows what an avatar is. OK, you didn’t really have to put your hand up. There will be some who don’t know what an avatar is. Which is ironic because if you are reading this on social media you already have one. You may not have realised it. Let’s use The Cambridge dictionary definition:

“An image that represents you in online games, chat rooms etc…” That picture at the top of social media is your avatar.

I like that definition, there are more and fuller ones. Very few avatars are actual true to life photographs of the person. Mine is of course 100% the way I look, rugged good looks and all. What most people do is to create a representation of themselves on their Social Media. But even if you post a photo, it is a staged or your best photo. We choose one that shows us as we want to be seen. Pouting, staring manfully into the distance, smiling, smouldering, eyebrows raised, shoulders back chest out, wistful, wise, you get the picture; no, you are the picture.

What’s the harm in that, you say? Nothing, but it does mean that for anyone we have not met in person, only online, will have a view of us based only upon our avatar.

Let me paint two pictures:

1/ The date: You start to get to know someone online. You like how they look; or at least their avatar, and you get on with them. All your chats are in tune with each other. You like the same music, films, places, activities, this is a perfect match. So you plan to meet. Arriving at the pub you both look around for each other. No need for roses in button holes, or any of that old fashioned nonsense. This is 2023, you know what each other looks like. She is beautiful, he is a hunk. Twenty minutes go by, you pass each other several times; even bump into each other. The average looking girl and the guy with a paunch. You both end up at the bar asking different bar staff if anyone has been asking for you. Overhearing each other you look across in shock. How can these faces, these bodies have been made to look so good. You both glance at you phones, the avatars, turn them around to show the other, then burst out laughing. You are the same people after all.

 

2/ The disguise: there are many people who don’t like the idea of putting a photo of themselves up as an avatar at all. They use all sorts of alternatives. Cartoons, photos of their children, photos of pets, photos of animals, famous people, quotes, or they do put a photo of themselves as a child or a young adult. Not everyone wants to advertise what they look like to the world. After all, not everyone can take the adulation and praise that some of us get on a daily basis. Wait a minute, did I mean adulation and praise? Not everyone has aged as well as me… I wish. Obviously, I do understand the real reasons people chose other avatars. Everyone has a right to their anonymity. Many people are shy of their image. Plus, some of the cartoons and pictures people choose are great fun. I have often thought of changing mine to a cartoon.

I am sure there was also a serious point that I had. Oh yes, disability and illness. It’s a big reason that people use alternate avatars. I understand, being visible as you are when you feel others may judge you, is hard. Having family and friends see you so changed is never easy. You may just not feel up to having a photo. Who am I to make any suggestions here. We all make our own choices. For myself I probably hit a mid point with my avatar. It is a photo of me in my wheelchair, but it is not too recent. I wear a hat to hide part of my face and the fact someone has stolen my hair… oh yes that age, not illness. I wear a bright coloured coat to distract the eye. I am smiling, that is a choice. Does that sound like an odd comment? If you have ever been long term ill and in serious pain, you will understand. You see, I am aware of my own attempts to hide. Put on a brave face to the world. Avatars are the masks we wear and yet they still say something about us.

Well I am off to change my avatar to one of superman, make it more accurate.

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