shinysun

[shinysun]

I have had a couple of “good” days recently, I’ve been able to have a video chat with friends, draw, and sit in the garden. John at the kids are at home so I’m well looked after and well fed! 😀

Today wasn’t so good, it took me much longer than usual to get out of bed but eventually I did. I put on some easy, comfy clothes and went out to the garden. John got out the comfy chair for me and brought me some lunch. So far so good. I’m feeling quite happy with my lot.

John and I were chatting about how much he has enjoyed the last few weeks. He likes to be busy and has got lots done in the house and garden on top of his usual time spent looking after me, the kids, the house and work. At that moment though we were both just sitting contentedly in the garden enjoying the moment of sun between the clouds.

Then our neighbour pops out to do a bit of work in his garden and comments how he only ever sees us sitting still, we assume he is joking as he has seen John out doing the garden, painting the shed and the fence, cleaning the slabs... but no. He goes on and on about how lazy we are while he is working, how he has seen other neighbours go off with rucksacks on a hike, how they are off out getting exercise unlike us. John was still laughing even if it was uncomfortably but by this point I was in tears behind my sunglasses. Just when I think I have come to terms with my illness I get a reminder that I never will. I will always miss being active, I will always miss packing a rucksack and heading out for a long walk, I would dearly love to be off along the coastal path on a perfect day like today.

John is still laughing, he doesn’t correct him, he doesn’t explain.

I come inside, upset, emotional, my energy and peace all gone.

Now John comes in. I’m upset that he didn’t defend me. He is angry with me! I shouldn’t let the neighbour get to me, I should be able to ignore him. Now I’m crying again and I know it’s going to take me days to recover from this.

I should have stayed in bed.

[shinysun]

If I were cured tomorrow...💙💙💙💙💙💙💙💙💙💙💙💙💙

In October 2017, 6 months after I turned 40, I caught a virus. I didn’t die but I didn’t recover and I am now missing from my life. The chance of recovery is very slim but if I were cured tomorrow...

💃🏻I would put on loud music and sing and dance with the kids while John smiles and rolls his eyes.

🥊I would go out to the garage to my kick bag and punch and kick it till I’m exhausted knowing I’ll recover in a minute.

🐚I would walk along the coastal path to Elie and back, paddle in the sea and feel the sand between my toes.

👩‍🍳I would cook a huge meal for my family and sit at the table chatting for hours.

🍸I would see if there is any of my gin collection left.

🧠I would watch the last few Marvel films again and understand them.

📚I would buy all the books I’ve missed and read them all.

💊I would throw out my dosette box!

🚿I would have a long shower and wash my hair.

🏃‍♀️I would climb a mountain then run back down.

☎️I would phone my friends and family for a long chat and, after lockdown, visit and hug every one of them.

⛺️We would go camping and I would pitch the tent. Nobody would think I’m lazy letting John and the kids do it all.

🥳I’d throw a huge house party.

🏸We would all go to the gym, play badminton and go swimming.

😜I would book a hotel room for John and me and not plan on getting any sleep.

🇵🇪 Then I would book a trip to Peru to hike the Inca Trail.

🥋I would get back to karate and get my black belt.

🏰We would go for a family day out to Edinburgh, see everything, walk around all day and race up every staircase on the way.

🎗I would become a disability rights advocate and campaign for more research funding for chronic illness. The fact that M.E. has been around for 200 years and we still don’t know anything about it is shameful. We can’t even agree on a name!

🎸I would go to an eighties festival with my daughter and dance all day.

👩🏻‍🎓I would never miss another parents evening, awards ceremony or orthodontist appointment.

🧸I could look forward to grandchildren without worrying if I’ll be able to play with them. 💔

😭I would be so happy I would cry. 😃

Not necessarily in that order.

☕️ Then I’d win the lottery and have a tea party with Santa and the Loch Ness Monster before I woke up. It was nice while it lasted.

🧜‍♀️ 🦄 🎅🏻 🧚‍♀️ 🙃🙏🏻🦹‍♂️💰 🧞‍♀️🤷🏻‍♀️🐉🍭💷

We are the #MillionsMissing.

[shinysun]

M.E. Awareness Day 12th May

My neighbour thinks I’m lazy because he only ever sees me sitting in the garden.

I wonder what he’d think if he knew that when he doesn’t see me I’m lying down;

If he knew I haven’t managed a shower since Friday;

If he knew I haven’t shampooed my hair for 2 months;

If he knew I haven’t been to work in 9 months and it’s looking unlikely I’ll get back;

If he knew his comments made me cry and I now have a counsellor to help me learn to deal with my feelings about other people’s perceptions of me;

If he knew that John and the kids do all the cooking and cleaning;

If he knew how long it took me to write this;

If he knew the 20 minute phone call with the occupational therapist this morning means I’ll go yet another day without a shower;

If he knew lockdown has meant I’ve seen much more of my friends than usual because video calls from my bed are so much easier than getting out;

If he knew how much I’ll miss everyone when they go back to their busy lives and leave me in my own personal lockdown;

If he knew just how much I miss my old life?

[shinysun]

The Mask

Imagine the feeling of having a colicky baby. You haven’t had any peace or sleep for a month. You have forgotten who you are, how you got here or where here is.

Imagine you overdid it in the gym/ran a marathon yesterday and your whole body aches today.

Imagine you have just done press ups till your arms collapse and you can’t lift them any more. Your arms and legs feel like this just from having a shower.

Imagine that tingly feeling of a cold sore about to appear, you feel that all over. Some of your skin and flesh feels like it is trying to crawl away.

Now add a permanent headache, sore throat and tinnitus.

Oh and someone is messing with gravity too. Most of you feels far too heavy but some bits want to float away.

All your hard earned muscles are dying because you can’t do any proper exercise any more so you keep getting random spasms and cramps.

You are sitting at your desk at work and the noise, light and movement are jangling every one of your nerves as though there is a vibrating tuning fork inside you but you need to concentrate, you have work to do, a mortgage to pay.

Now it’s lunchtime, for some reason you feel the need to write down how you are feeling and that helps a bit. You know you need to drag yourself out for a walk. You would much rather curl up in a ball but you have to keep moving a little at a time or you won’t be able to move at all. So, you’d better make a start.

When I said “Fine thanks, how are you?” That’s what I meant.

(Myalgic Encephalomyelitis (ME) is a severe chronic illness in which symptoms are worsened by physical exertion. In some countries and some literature, ME is referred to as Chronic Fatigue Syndrome (CFS).)