May 2021

This May has been a weird month and it is now slowly drawing to an end. It has been unseasonably cold and wet. Which for many people including those suffering with EDS it means our join pain is much worse. There has been a huge study conducted using an app called “cloudy with a chance of pain” and it has asked it’s users to track their pain each day and say what the weather was like. They have proven that there is a link between the weather and peoples joint pain, be that through Arthritis, Ehlers Danlos Syndrome, Mixed Connective Tissue Disorders and many more. Many of us could have told them this, without the need of an app. But hey at least we can’t be laughed at when we say we know that the weather is going to change before it does. We are human barometers.

There is a huge low pressure area that is moving over the UK tomorrow, currently it is sat out in the Atlantic Ocean but it’s effects are already being felt by many of us. My daily exercise was painful from start to finish. It took a considerable amount of effort to keep going. My reward for keeping going is more joint pain not less. Today I have the rare symptom of sole of the foot pain, making it incredibly painful to walk. Even with them elevated the balls of my feet feel like they are throbbing along in time to the music I am listening to as I write my blog post. ( If you are interested Taylor Swift Evermore Album, I have that and Folklore set up back to back on my Amazon music account). 

Photo credit UK Southwest Storm Chasers

The yellow area is the part of the UK that is going to be affected by the low pressure that is moving in. As UK Southwest Storm Chasers say it is an “unusual deep area of low pressure that will sweep slowly across a swathe of the UK from Thursday night into Friday. We will also see some heavy rain and with this some high winds. This will start to affect South Wales and Southwest England first through late Thursday afternoon “

So instead of feeling like I have the body of a 47 year old, I am left feeling like I have the body of an 80 year old torture victim whose feet have been repeatedly beaten with a piece of 2 by 4. I have put Ibuprofen gel on my feet that has menthol in it but I can’t even feel the menthol which is bizarre. It would be easier to tell you what isn’t hurting at the moment and that would be my face. That is the only area of my body that isn’t hurting at all at the moment. Which is weird because I am sporting a lovely bruised eye lid at the morning.

Late on Monday night I noticed that I had a dark purple line on my eye lid. Initially I thought it was ink or something on my eye lid. I had been suffering from really dry eyes all day which always makes them itchy so I had been rubbing them far more than I normally would. I didn’t think any more of it until I woke up Tuesday morning and saw that the purple line was dissipating and the bright purple line was now more of a dark red and no longer had defined edges. Excuse the state of me in the photo I had only just got out of bed and was feeling pretty rough.

It was a tiny bit sore but nothing major. By the end of the day it looked like this.

The bruised area is tiny and it has perplexed me as to how on earth I have managed to damage a blood vessel just rubbing my eyes like I normally would. I have never had anything like it before. My eyes are still really dry at the moment and I am being extremely careful when I rub them just in case! I don’t want a matching pair.

I hate it when I have weather induced joint pain as there really is nothing at all I can do to lessen its impact. Pain relief doesn’t work, keeping mobile doesn’t do anything for the pain but it stops me seizing up. It is a case of dressing in layers and applying hot water bottles to those areas causing me the most issues. On days like today it would be lovely to have a body sized hot water bottle to take the worst of the pain away.

Add in a surprise period from mother nature, I am truly on my way to the menopause with the last one I had being January. So I have the fatigue, stomach cramps, bum and leg ache on top of all the other shit that it going on. It is working it’s way to being a perfect bloody week. No pun intended. Yesterday I could have quite happily spent the day in bed and slept all day, I haven’t felt that tired and drained in a very long time. 

I took a self care day and watched stuff we had recorded on Sky. We are watching Mare of Easttown on Sky Atlantic and really enjoying that. We are also watching a programme on Channel 4 SAS: Who Dares Wins. At the moment a lot of Jay’s days off are spent resting, he is struggling to come to terms with his dad’s passing. Last week was a very tough week as it would have been his dad’s birthday and also his dad’s ashes came home. I am trying very hard to remain the constant, the thing he can rely on and doesn’t have to worry about, as he has enough on his plate to deal with. So despite wanting to crawl into bed all day I stayed downstairs so he didn’t have me to worry about as well.

We will get there but I think I would be lying if I said that we both won’t be glad to see the back of May 2021 or 2021 as a whole.

Just because he is gorgeous and unconditional love is so important.

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