I haven’t posted in a very long while, and I feel this may be one of my last posts (or my posts will continue to be as intermittent as this). But I have realised something recently that I thought was important to share.

 

 

So I recently had a conversatio with an old friend who has been diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) since she had an opperation, so I thought I would do a summary of thigns that I've found help me with my sypmtoms. Keep in mind, some of these suggestions you'll need to try and do consistently as they can take time to have an effect, so don't give up straight away. 

Summary of what POTS is in non-medical terms

This week is invisible illness awareness week, and also happens to mark 1 year since I started my blog (happy coincidence!). I usually make sure that my blog posts have a more positive slant than this, but I wanted to give an insight into my invisible flight and to raise awareness of invisible illnesses. I wrote this poem years ago, when my pain was dominating my life. It took so many things from me, it made me give so many things up and it made me change who I was. But over time I’ve been able to rebuild my life and improve my health.

I find talking with people who deal with similar health issues to me really therapeutic. I also know that talking about it other people can harder and a bit depressing (for lack of a better word) – it puts a dampener on the conversation. It's hard to try make people understanding without sounding really depressing. So doesn't always leave you feeling good. 

For people with POTS (Postural Orthostatic Tachycardia Syndrome) or Dysautonomia, a key part of symptom control is maintaining your blood volume & blood pressure. So it's really important to keep your fluids and electrolytes up, but just plain water doesn't replenish the electrolytes that are lost. In fact, drinking water alone can actually dilute or water down the body’s normal electrolyte balance. Also, does anyone else notice that when they’re trying to rehydrate they have to pee a lot more?

I have been increasingly stressed lately primarily with uni work, and I don’t really manage my stress well. So last night, I felt exhausted and sore but so stressed because of all the things I had to do for uni. But instead of pushing myself and trying to get them done when I wouldn’t have been able to concentrate or do them properly anyway, I lit a candle and read a book, and then went to bed early.

Something that I’ve realised lately is that I’m not very good at allocating ‘rest/recovery’ time.

After years of having meditation stuffed down my throat, tonight I have decided to try a different approach – mindfulness.

When I went to see specialists, many (if not all) would give me a list of things I needed to do to get better, and almost always that list would include meditation. However, while they would heavily reccommend I try it, they didn't give much help with the actual how or why of it all.

To me, the sunflower is a symbol of hope. The idea of it was first conveyed to me by a quote from the movie Calendar Girls:

I have only recently come across The Spoon Theory by Christine Miserandino, and already think it is one of the greatest things in all existence. It gives a simple yet effective way of explaining how it feels to live with and manage a chronic illness on a daily basis, for unless you have experienced it yourself it is almost impossible to understand. If you haven’t read it already, I truly recommend you do.

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