Finally some relief, #CmcJointArthritis

Archive, Arthritis, Covid -19 Week Eleven, Covid-19 Lockdown, Health, Hips, Hypermobility, Hip replacement

At long long last, after 7 weeks of #SimplyCBD and 23 weeks of #Etoricoxib I have some relief. Though I really need to add those #Paracetamol to achieve it.

Splints are needed still, and the gel, but I’m not having that absolute bone crushing pain, that makes me want to amputate the hands, so that’s a win.

I had to increase the drops of CBD oil from 1 drop x 3 a day to 2 drops x 3 a day, once I hit that amount, I noticed a change. Beforehand it definitely helped with anxiety around pain, and sleep too. But for pain it didn’t. So upping the dose slowly I gradually saw a difference, and I made sure I did it over a menstrual cycle too,which is when my body overall is more painful.

I would still prefer an steroid injection to really kick the inflammation down, and I wouldn’t need splints as much. But still not an option sadly. But maybe soon, now the lockdown is easing off in places.

A big break for 2 weeks in physio, and walking has helped with getting my shoulders and hip pain under control, which allowed me to really work on getting the thumbs also under control. I’m glad I took the pressure off myself, and gave things time to work as well.

Ehlers Danlos Syndrome Issues

Archive, Arthritis, Covid Week Eight, Covid-19 Lockdown, Health, Hips, Hypermobility

EDS Strike’s back!! This last couple of weeks have been honestly quite hellish. Pain is all consuming and it feels like there’s no end in sight.

This is a dark dark place to find yourself in, felt trapped and lonely and deeply depressed. It’s not often I’m this low, and I usually hide it away from others, except family as they physically see it.

But as it’s May it’s #EhlersDanlosAwareness month I thought I’d share my woes.

I have EDS Hypermobility type, formerly known as EDS type 3.

Hypermobile EDS

People with hEDS may have:

Currently, there are no tests to confirm whether someone has hEDS.

The diagnosis is made based on a person’s medical history and a physical examination.

On top of this I have MCAS too Last Cell Activation Syndrome,in which I can be allergic to the air, a scent, a food, a colouring at any time! Thankfully though mine seems to be more flushing and heating. So it’s manageable.

For my EDS my hips, ankles and shoulders are the most affected. And recently it’s been my shoulders, Ive wanted to amputate them so many times this month already.

To combat the pain and instability, as they are subluxing while dressing or brushing my hair, Ive been going back to basics, to pull the ligaments and tendons back into line to hopefully make the shoulder more stable.

Lying in bed with it just hanging down is literal heaven right now. The arms weight naturally pulls it right in the joint, so it sits comfortable.


With the ball I rotate it in circles going clockwise, then anti clockwise, and gently roll up and down. Though SMALL movements to ensure it stays in joint and not extending too much.

There are some amazing YouTube videos by #JeannieDiBon https://youtu.be/jQjKzp-QxWg

And you can find her on Twitter too, for a wealth of advice and guidance.

@jdibon Twitter.

#Halsey Manic Tour #DateDay

Archive, Family Adventures

It’s finally here!! After the disappointment of the #LanaDelRey concert being cancelled, we’ve literally counted down the days to this event!! Though now it’s here, I’m nervous due to the coronavirus if I’m honest.

Your Visit

Coronavirus (COVID-19) Update

As the coronavirus situation evolves, the safety and wellbeing of our visitors and staff members is our number one priority.

At this time, the risk to individuals is low and all of our events are going ahead as planned. The guidance from the Government to music fans attending music events in the UK and to anyone involved in tours in the UK is to check with the official Government news sources: https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public

We will continue to review our policies and procedures in line with updated health advice and guidance. Which at the moment is recommending the use of tissues if you sneeze or cough and regular hand washing. To this end, we have hand washing facilities in all of our venues and additional signage to highlight these best practices and to reassure the public.

The Government has now produced its coronavirus action plan which you can read here. The 28-page document outlines what people can expect across the UK.

More advice on coronavirus and safety precautions can be found on the website of Public Health England here.

So we went

Instead of all we had planned, we are staying at home for the day and only coming out for this event. So no junkyard golf and club crawl beforehand. Gutted but I understand. After tonight the country may be on lockdown with all events cancelled etc.(nope they haven’t decided to do this yet)

So Manchester here we come.

We had pale waves on as an introduction, supporting act. Loved their sound. So I will look for them on Spotify.

Found our seats easily as they were shown to us, We had a great view as well, super impressed.

My only bugbear was everyone stood up, we had seating for disability so thankfully on the end, so could still see, but I spotted others that couldn’t.

Set List

  1. Nightmare
  2. Castle
  3. Heaven In Hiding
  4. Eyes Closed/ Die for Me
  5. You Should Be Sad
  6. Haunting
  7. Forever… (is a Long Time)
  8. Dominic’s Interlude (interlude)
  9. I Hate Everybody
  10. Colors pt. II / Colors
  11. Walls Could Talk
  12. Bad At Love
  13. 3am
  14. Finally // Beautiful Stranger
  15. 100 Letters (acoustic)
  16. Is There Somewhere
  17. Killing Boys
  18. Hold Me Down
  19. Clementine
  20. Graveyard
  21. 929
  22. Ashley
  23. Gasoline
  24. Without Me

The whole thing went so fast, four outfit changes, moving stages, fabulous visuals and fire. It was high energy, delicate at times, emotional in others, raging and fierce, it was a whole journey she took us on.

I was thoroughly entertained from start to finish. In fact I didn’t want it to end. We had lots of Artist interaction, and talking too. Felt like it was genuine interaction, rather than staged and forced.

And now that’s me not moving for a week, we are staying in to keep our contact with others to a minimum. I cancelled my physio appointments for a month too.