ME Group AGM, A Stumble, Followed by a Fall

Alright perhaps I did try too hard to go outside, I pushed.  I thought sitting down in a community hall for an hour would not be too bad.  It shouldn't be after all, sitting down for an hour listening to someone speak and then afterwards having some light snacks, with tea and coffee.  How mistaken I was.

 Charity helping Aucklanders with Chronic Fatigue Syndrome (ME/CFS) and/or Fibromyalgia

The ME CFS Auckland support AGM was a shared food event so hubby has made some amazing hummus and cauliflower and thyme purée with some common allergens removed so safer to eat for those like me.  I was so appreciative and proud of his skills I really wanted to share with others.  Hubby likes to give gifts of food made with love and for an event in NZ it is considered a good form of koha, a gift to hosts, (like a gold coin donation or wine etc).  I was going to share the beauty and flavour of hubbies cooking with some safe dipping food and listen to one of the more renown doctors around the condition of ME in NZ, Dr Rosamund Vallings, speak on medical updates and answer questions.  It feels silly now.  No one in the end got to try any of the food hubby made at all and I could barely listen. Trying so hard to focus on the words.  In the end the food was packed up with me to be taken back home.  In the later days hubby and I had to chip away at it all ourselves, er with chips.  I feel like I failed a lot.  Failed in the ability to give thanks to those running the event, failed to thank those who helped me and failed to network with fellow sufferers.

Sure I was a bit woozy, when I got there but I put that down to having to dress myself on the day and the journey out to the AGM.  I thought well since I had that walking cane to help with balance, and sitting down with rest & tea would not be so bad.  But no.  It got incredibly bad fast.  Too fast.  I felt like nausea incarnate, had incredible difficulty staying upright, pain, trouble standing, far too much trouble walking.  I could not speak normally, annoyingly.  I had to make whole sentences fit into two words.  Two words that would be drawn out and slurred, half muttered.  Some lovely ladies, who had experience with the illness (either themselves previously or more commonly had patients & family who had it), aided me in standing and getting into one of their cars parked right outside.  To collapse into the chair diagonally, then horizontally.  They drove me home early.

I felt so bad as I had taken them away from the event.  That hubby had put that effort in to share food with them.  I felt so grateful for help.  That I had not expected this quick descent would be an understatement.  It took days to recover.  Vision completely blurred, hands not working right, unable to make or carry food, ice pick through the eye migraines, infections, walking issues along with a couple falls at home, digestion messed up.  It was worse even a couple days after the event, then it was at the event.  I thought it would be fine to go outside.  I want to be able to go out with my grandparents one day near the end of the month to a small art gallery.  So I thought sitting in a small hall for an hour would be ok to work up to that.

In the end it was the getting dressed & journey which took a bad symptom day and made it worse.  The effects being so far away from my hopes.  Surely sitting down and listening for an hour or having a shower should be achievable.  So embarrassing, this illness.  Because the simple ability to sit & have a cup of tea, or do a 15 sec walk is an achievement.  Much like the joke Xbox achievements.  Sat up unaided, achievement.  Went to toilet, achievement.  Ate some food & drank fluids, achievement.  Listen to meditation music, achievement.  Write a couple of paragraphs, achievement. Read a simple page, achievement.  For most people they are a joke, but for me they are dead serious achievements.  I am fighting to keep going and struggling to do everything I can to be healthy.  Sure some days are limited to just those few achievements.  But I try everyday to do more.  I know I should not be so hard on myself but when your life is limited to just a handful of things, you too would be willing to risk a few more days of pain and suffering, not being able to do those things, for just one short moment of hope. 

Spoon theory applies for many illnesses. Image by the Dysautonomia International Org

Maybe later on I will recover enough to watch the talk.  But not this day or the other days I write this post.  Because it is a trade off (commonly known as the spoon theory, except I often have 6 spoons only and a shower costs me 5 spoons).  If I choose to do one thing like a shower I end up not being able to do something else like get dressed, & get food.  In fact a shower often takes practically all my other achievements away & requires recovery days.  Hence I cannot shower often.  Did I mention this illness was embarrassing.  If I watch the AGM talk of an hour I cannot read that day or write even a little.  I have to make a trade with such small achievements it feels like I am haggling with the universe.  Listening for 40mins knowing that you will lose the ability to speak sentences, is annoying.  It is not me.  It was not me before.  But I have to accept that is my body now.  Even though I struggle against the chains of illness that bind I have to recognise they are there.  Take a step back and take everyday as it comes.  Some days with more chains, some days with less.  Keep on haggling with the universe to lift a chain when it can.

At least it was really good hummus and purée with saltly healthy quinoa & chia seed chips.  Shown above was a big hummus related meal for the day.  The hummus was made with a touch of fresh orange zest & juice for a little sweetness as well as lemon & tahini.