Coffee with Esther (April 2023)

Move It or Lose It

Hi everyone,

March has been a very strange month for me. It started with excitement for my birthday and ended in sadness with the loss of my beautiful “Big Dog”.

Throughout the month, I’ve felt more anxious, sadness and stress than I’ve ever felt. I’ve had more bad days than good. The Virtual Coffee Breaks have been a godsend for me. All of the DCM warriors who popped on were so kind, caring, and inspirational. You can never feel alone when you’re talking to someone who knows how you feel. I can’t thank the coffee breakers enough for what they’ve done for me this month. Thank you!

Talking about the bad days, you never feel like you can do anything. Then, at the end of that day, you feel like you have wasted it. But then, on the good days, you feel like you can’t waste it, so the rulebook goes out the window and you forget about your pacing. And the cycle starts again.

One thing I’ve noticed is that if I don’t move around on my bad days, they can turn into bad weeks. Everyone understands that you can never know from day to day if moving is going to be more of a challenge. But we have to try, each and every day. I am so conscious about the statement, “If you don’t move it, you’ll lose it!”

I have decided that I need to be more active. On both the good and bad days. That doesn’t mean I’m going for a 5k hike, a 10-mile bike ride, or a swim in the English Channel. But I’m definitely going to try and be more active.

Trying something new can feel like a big commitment. It can also make you feel negative (I wouldn’t be able to do that).

But the truth is, if you start small, and you don’t force yourself when you don’t feel up to it, being active can help you physically and mentally.

So where do you start?

Do something you actually like. You’re more likely to continue with the activity if you’ve enjoyed yourself and it hasn’t felt like you were at war with your own body. 

What did you used to enjoy before Degenerative Cervical Myelopathy (DCM)? Could this activity be adapted to you and your body? What activity would you like to do with your partner/family or friends? Parachute jumping might not be okay, but what about dancing or armchair aerobics?

Make the most of your good days. Listen to your body and do what’s comfortable for you. But remember you must PACE yourself and rest.

Start slowly and build up your activity. Start with a couple of minutes and then increase the time when you feel your body will allow this.

Think about if you would prefer to do the activities outdoors or indoors. Would you prefer face-to-face classes, online with friends or a group, or in your own home on your own?

Think about how much support you would want or need.

Some DCM sufferers can still run, walk, cycle, or swim, which is fantastic news! For other DCM sufferers, just walking up the stairs can feel like climbing Mount Everest. But if we all, move a bit, wiggle a bit, and giggle a bit, then we can improve our mental and physical health.

In April, is starting free yoga sessions for people who suffer with DCM. When I first thought about trying yoga, my first thoughts were, of course, ‘I can’t do that’. After being involved with this project, however, I’m so excited for the sessions to start. I know I will not be able to do every position, but I’ll be able to do some and still have fun. All whilst being in a group that understands; I don’t have to worry about the ‘normal’ people in the class staring at me and thinking I’m not trying hard enough. The best part is Helen, the yoga instructor, is going to record the yoga sessions. So if I’m having a bad day on the live sessions, I can always catch up on a good day. Perfect!

As we bounce into spring, just take five minutes and think about what activity you could try yourself.

Think positive, be positive, and you may start to have more good days than bad.

Disclaimer – you should always seek advice from your professional health care provider before taking up a new activity. You should never do any activity that causes you pain or discomfort.

If you fancy joining us on the Virtual Coffee Breaks this spring, please join Support Group on Facebook.

Here are the dates for April and May:

  • 20th April at 2pm BST
  • 27th April at 6pm BST
  • 11th May at 11am BST
  • 18th May at 2pm BST
  • 25th May at 6pm BST

(BST – British Summer Time)

I hope to see you there,