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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Things that I wish I knew about before

Written from the perspective of me now, to me 18 months ago
  1. There are sports bottles with straws which mean you don't have to put up with spilling water on your face when you drink in bed. Check out One Green Bottle for pretty ones.
  2. That discomfort you feel all the time - discomfort is low level pain. So you might not realise that you are experiencing what is called pain, but if you're experiencing discomfort regularly, that's enough to count as pain - it's worth doing something about.
  3. There is no one right way. People will swear blind that their way is the right way, other people's ways are damaging and wrong. In reality, some things will work for some people and not for others.
  4. There are SO many possible treatment options to explore. Given that you are likely to be ill for a long time, you have time to explore these options. You do not need to rush. Most people will agree that trying to rush while you have ME could make your symptoms worse.
  5. There's a lot of politics within the ME/CFS community, and by researching treatments online you will come across it. You don't have to get involved if you don't want to. The politics might poison you against a treatment that might actually work for you. Keep an open mind.
  6. Getting ill can change the paradigm you're in, big time. I had a year or so of making misjudgements pretty much constantly about how much I could do. This meant I cancelled on people a lot, and I overdid it a lot. I was late a lot too. I wasn't used to making so many mistakes, since I had such control over myself before. I didn't handle being late very well - I didn't know how to effectively apologise for it, because I was so frustrated at myself, and confused about what was happening - what was me, what was M.E. Regardless of my good intentions and the fact I was limited by disability, apologies for inconveniencing other people were still necessary, because consequences of actions count. Mostly people don't expect apologies, but I reckon it's good form.
  7. Staying warm is actually important. Being cold can be energy sapping. Being hot can make you feel fried. Staying the right temperature is important.
  8. Food safety around freezing and expiry etc. And being in the habit of freezing food. This took a long time to get to.
  9. How to prioritise. I reckon this is something many people learn at work in their 20s. My prioritising skills are reaching new heights, with so little energy currency to work with.
  10. Being assertive is more difficult when you are extra exhausted. Forgive yourself.
  11. Emotional work is more difficult. Progress in therapy slows right down. Forgive yourself. Eating and resting well every day have to take priority.
  12. Art helps drive sadness away.
  13. Dying your hair is way more expensive and complicated than you realise - it takes quite a bit of research to work out how to do it well. Don't bother getting your roots done, especially by a trainee, it will take forever and the result will not be great. Also, bleach feels really unpleasant, and sitting up for hours will make you crash. Having coloured hair IS fun but it's also ongoing work to keep the colour topped up.
  14. There are services out there for you. You can get discounts on taxis and there's a homebound library service. Google 'homebound services', 'services for disabled people' etc.
  15. You are one of the lucky ones that doesn't put on much weight. Your yoga-toned muscles will fade, but during times where you're able to exercise a bit more with your home yoga practice, they will strengthen. Just a little bit of exercise CAN make a difference.
More another day :)


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