73/365 -Things I’ve learned from having myasthenia gravis – part 1

While doing my daily scan of social media posts related to myasthenia gravis, I came across this article from a blogger about things she has learned since being diagnosed with MG (and other illnesses).

It made me think about lessons I have learned since my own diagnosis in September 2013. I was surprised by the amount of things that came to mind.

1. The NHS is a wonderful thing

This is probably the most ridiculous bit of personal growth I’ve done, but until you or someone you love becomes dependent on the NHS and medication it’s impossible to appreciate how lucky we are. I was brought up in a household that was very anti- taking medication and visiting health professionals – I was brought up to believe medicine should be a last resort. Because of this, I would only take medicine when it was absolutely essential and as a healthy child and young adult this was extremely rare. Pre MG adulthood, I would visit the doctors rarely, was on no medication and had only taken painkillers a couple of times – for a migraine and for a broken wrist. This  attitude made the drug experimentation very difficult for me in the beginning of my MG treatment and affects me still. But I know that no matter what lifestyle changes I make, medical treatment from experts and medication is far more powerful when it comes to giving me the quality of life I want and need. I understood just how lucky I am to have an expert consultant and to receive his treatment, along with my medication, for free when looking at moving to Ireland. You have to pay for both healthcare and medication there – I realised I couldn’t afford to live there.

2. Make the most of the good times 

Dealing with the fluctuations of the condition has been a real challenge, yet I’ve come to understand that making this most of the good times will help me through the more difficult ones. When my symptoms are reduced and my energy is high, I make sure to put a pretty dress on and go out to have some fun. I socialise and I enjoy myself knowing that it might be a while until I feel this good again. I also do a lot of exercise in these periods to make sure my muscles are as strong as possible for the low times. Saying that, I’m still trying to perfect a Buddhist lack of attachment to the way I look and feel during these good times. 

3. Don’t allow MG to become an excuse

While making the most of the good times is important, I try to stop myself from falling back on using my MG as an excuse when I don’t want to do something. I make sure that each time I do say ‘I’m just not feeling up to it as my MG’s flaring up’ that I really mean it as the last thing I want is to become the girl who cried fatigue. 

4. Learn to listen to your body

Like the above point, I’ve become more attune to my body needs during my year and a half relationship with myasthenia than I have been for the rest of my life. My mind-body relationship previously was definitely a one-sided affair but MG has helped it mature. Sometimes it’s ok to push myself but I can read the signs, mainly limbs like lead and feeling like I’ve been hit by a truck, when I need to rest. I think we still need to work on our communication – I probably should know to rest before I feel like road kill – but there has been a significant improvement. I get a lot more sleep than I used to and I make sure to have at least 2 days without exercise a week. My weekly yoga/pilates sessions are helping me stay focused on looking after my body, and I hope to deepen the connection over the coming years. 

Read part two here. 

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