Disability issues

How it feels to live with chronic illness

Six things I learned that may help

“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?

Photo by Dimitri Schemelev on Unsplash

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:

  1. Always listen to what your body is telling you. Whatever type of disability you have your body can always tell you something.
  2. Don’t push yourself beyond your physical and/or mental capabilities.
  3. 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.
  4. 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.
  5. 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.
  6. 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.

Tomorrow is another day!

Photo by Sincerely Media on Unsplash

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