I’ve made a big decision. I’m going to do something fairly drastic. I’m hoping it’s going to change a part of myself I am very unhappy with.
I’m going to have a ‘buzz’ cut. I’m going to cut my hair to within an inch of it’s life! What on earth is a buzz cut I hear you ask. Here’s an example. I might end up looking like this, or could go even shorter.
Now imagine this. I am 65. I have naturally white hair which all my friends say they love it and they wish they had it. Worst of all I have my Father’s face (triple-chinned and jowly!). God bless you Dad.
Add to that the bloated and blotchy effect from the meds I take and there you go. Keep looking at the image above and pretend it’s me!
I hate my hair. Worse than that I hate my scalp. Like many people with neurological disorders, I have a dermatological condition which is difficult to manage.
It causes my scalp to itch constantly. If I scratch it it gets worse and sometimes it will bleed because I’ve scratched it too much in one spot. Don’t think that I’m covered in scabs. I’m not. But I am being driven slowly insane.
So this is why I need to shave as much of my head as I dare. I need to be able to treat it with product that hopefully will help.
My disability means I am unable to shower and washing my hair relies on my husband or my daughters. Sometimes it just isn’t possible. It’s also a bit of a palaver! Either I get soaked or the floor does. So managing my hair generally is not easy. Managing it with a scalp condition is almost impossible.
“Begin at once to live, and count each separate day as a separate life”. –
Seneca – Letters from a Stoic
These are wise words indeed, especially if you are living with a chronic illness or are a disabled person, when everyday can bring different symptoms, different feelings and obstacles. Not so easy though is it?
Yesterday, I gave in. For two days I had been feeling awful, deep down I knew why, but, as usual, I kept going.
For two weeks before Christmas I was busy as we all are. Being in a wheelchair doesn’t mean I get away with not planning and buying presents and food like everybody else. Plus, my mother turned 90 in December and my daughters and I organised a family party for her.
I do find social occasions a bit exhausting even if it’s just family. I had to be in my manual chair because the house has steps up to the front door! This means I usually get put in a convenient corner out of the way of everyone milling, but of course I can’t do any milling of my own!
Because of all the festivities, I didn’t do any writing for two weeks. I took the time to read about improving my writing. That was exhausting because I had to concentrate!
After New Year I managed to get out two or three pieces but then – nothing. I dried up and I could not motivate myself.
I found myself reading articles about optimising my blog, as I had convinced myself that that was my goal for 2020.
I can’t believe some of the things I have read these last few weeks, getting deeper in to marketing strategies that in no way do I want to follow, and am in no way ready for. Don’t get me wrong, the material was very well written by people who know what they are talking about, but the jargon being used was beyond me!
So I stressed about never being able to get people to read my blog or my articles if I didn’t master the jargon. Result: increasing anxiety, till my head hurt and my stomach was churning.
I’m now two weeks into a very unproductive January, and I found myself feeling out of sorts, not being able to eat much with aches and pains. I was suffering extreme anxiety.
What I hadn’t learned
I couldn’t believe that I had fallen for this old MS trick again, when it’s been happening for years. I hadn’t learned that when you live with a chronic illness it’s important to do what you know is right.
All I needed was to take a day in bed to just watch a bit of tv, listen to some music and sleep. So that’s what I did. I was warm comfortable and relaxed.
It’s amazing that just taking one day completely away from e mails, social media etc can make such a difference. What I can’t get my head around is why I didn’t recognise what was happening and allowed myself to get into such a dark place
Today – new person. Like Phoenix rising from the ashes I’m ready to take on the world! Well, not really but I got up this morning desperate to write.
Here are the things I’ve learned from this:
Always listen to what your body is telling you. Whatever type of disability you have your body can always tell you something.
Don’t push yourself beyond your physical and/or mental capabilities.
Learn what your main limitations are, and own them. They are yours and yours alone. That way it’s easier to avoid pushing yourself too far.
If you do beyond the limit take time to recover. Take a walk if you are able to, stay in bed for as long as you need, do what you want.
Don’t think it’s your fault if you have to step away from things for a while. No one knows your condition like you do – do what you have to do.
Self care is the single most important thing you can give yourself when you are a disabled person.
I can’t believe it’s taken me so long to learn this. I think it’s because I felt I was giving in, I wanted to fight my MS, not let it beat me and so on.
If you are, perhaps, newly diagnosed you may feel some or all of these things too. These six tips can help you realise that having a chronic illness isn’t going to stop you doing things, but may help you learn from what your body is telling you to make sure you are living your best life.
I read an article two or three days ago about how Stoicism can help you be the person you want to be. I took quite a lot from it and considered how I could apply it to my own life
Under the heading ‘View from above’ the writer suggests re-evaluating ones life; perhaps in the evening, you review your day and how you feel about things that may have taken place. He writes:
‘How many times have you had a conversation or an interaction with someone and thought afterward “oh man, I should have said that”, or “I wish I hadn’t done that”?‘
(Toby Carr on Medium.com)
That has happened to me so many times. Indeed I used to spend hours after a conversation reviewing it in my mind and feeling cringingly embarrassed at the way I had conducted myself in the interaction.
Weird?! Not so, but the result of a complete lack of self confidence and extreme self-consciousness.
What the Stoics can teach us
I began reading the Letters of Seneca, another great Stoic. In three brief letters on the shortness of life he said:
We are not given a short life but we make it short, and we are not ill-supplied but wasteful of it.”
(Seneca: The Shortness of Life)
I realised over time, reading Marcus Aurelius as well, that life was too short to worry about things I had said and was not able to take back, things I had worried about unnecessarily, situations I had handled badly. All the things that makes us human and fallible.
But I was soon to learn about the shortness of life in a dramatic fashion, which forced me to re-evaluate every single aspect of my life. My active life was cut short through illness and disability at the age of 48.
Although it has taken me 15 years to learn to live with my rapidly progressing paralysis, eventually I found a way to practice the teachings of the Stoics, just as I had always tried to do, to get over the self consciousness issues of my younger self, and all the things I wished had had different or better outcomes. Believe me, there is nothing that makes you more self conscious than suddenly having to live your life in a wheelchair!!
‘Exercise helps with mental clarity as well as general physical health’ and ‘Physical exercise should be a staple in everyone’s life’.
Obviously, for me, physical exercise was out of the question. Gone was the opportunity to take long walks to clear my head and do my thinking. Even now it’s difficult for me to find a private space to think.
I’ve always loved classical music, so with a pair of headphones I am able to get some thinking space listening to music that inspires me. That’s the nearest thing to a walk!
In addition, I can listen to the Letters and the Meditations of the Stoics on audiobooks.
So, despite my limitations, I still try to live and be the best I can be. I always try to think of something that makes me smile before I go to sleep. I don’t dwell on negative thoughts, or things I have said during the day or things that worry me, but to be in a positive frame of mind as I drift off.
None of it is easy – every slight movement or nerve pain reminds me I have MS and I will always have it. But, as someone close to me is fond of saying ‘life was never meant to be easy’. I’m sure everyone would agree with that.
Be kind to yourself, live your best life and, of course be kind to everyone else.