It was lovely to catch up with a mix of people and live out a snapshot of what my summer could have been.
Monday and Tuesday were completely different days, and really captured where my body is at right now. Thought it would be interesting and informative to share them with you.
My norm currently is to nap for about an hour every day.
This sometimes needs to happen in the morning, sometimes the afternoon or the evening. I almost always sleep for a further nine hours at night. This may sound like a luxury, but for me it is a necessity and one I would be happy to trade.
I was unable to nap Saturday and Sunday due to a busy and wonderful social schedule I had put in place. Making the most of the moments with a large group of university friends is important to me, will be harder to do this during our placement year.
This meant that Monday was destined to be crash day, even after eleven hours of sleep.
I slept not once, but twice during the day - this is quite rare, but was absolutely needed.
My first nap had to happen after breakfast, didn't even make it into the shower before I had exhausted myself. I wake from a dreamless nap a bit confused and foggy - but since it isn't much of a choice then it is what it is.
To steal a friends metaphor, then it is a bit like being desperate to go to the loo, you can hold it in but you are always thinking about how quickly you can get there, and then you experience relief when you make it. My exhaustion meant that napping was in the back of my mind both Saturday and Sunday, but I was able to hold myself up.
To steal a friends metaphor, then it is a bit like being desperate to go to the loo, you can hold it in but you are always thinking about how quickly you can get there, and then you experience relief when you make it. My exhaustion meant that napping was in the back of my mind both Saturday and Sunday, but I was able to hold myself up.
Post nap one, I showered and had a deep chat about life, faith and the future with the wonderfully wise Becky.
Then went back to bed for nap two.
On waking had a second deep chat that was pre-scheduled with a university friend (yes, I appreciate not everyone schedules deep chats, but that's a me thing to do).
After this I chilled on the sofa and chatted before helping make supper. Then finished the day over brownies and hot chocolate and a medium level deep chat, the intensity decreased as the hours of the day passed.
I then texted a few Westminster friends knowing that I would be visiting Parliament the following day, thought I would see who was around and decide how to fill my time before meeting a dear friend for drinks that evening.
Was pleasantly surprised to get both a tea and cake invite and a lunch offer - set my alarm and slept.
Got up on Tuesday excited to be adding new experiences to my growing collection of memories in the Palace of Westminster. Before leaving Wimbledon I came up with an exit plan, a way to get back to a bed and nap if I needed to. Was very apparent in this moment that I had made the right decision to cancel my Lib Dem Placement - by Monday to Friday could well have included days at this level of intensity.
Headed into central London feeling optimistic, cheered on by a 10% increase in my average from first year to second year. WOOOHOOO!
Headed into central London feeling optimistic, cheered on by a 10% increase in my average from first year to second year. WOOOHOOO!
Had tea and cake in the House of Lords via the Peers Library with Lorely.
Had lunch in Portculius House with Karen.
Went to a weekly service in St Mary Undercroft's Chapel underneath Parliament.
Went to the Public Gallery in the House of Commons.
Went to a discussion on Mental Health in Young People in Westminster Hall.
Went to the Public Gallery in the House of Lords.
Went to Portculius House to meet Sarah and then for drinks from the Strangers Bar and caught up on the terrace looking onto the Thames.
Went for Pizza with Sarah to celebrate our reunion of just over a year.
Got the tube back to Wimbledon.
So I made it through a crazy day without having to back out part way through, was however absolutely shattered afterwards but managed a one nap day on Wednesday.
Thank you to everyone who played a part in my weeks travels, was a lot of fun!
A metaphor often given to CFS/ME is the idea of spoons. Spoons full of energy, with CFS/ME you start everyday will less spoons then a able bodied person, you have to choose how to spend these carefully because once they are gone they are gone. I used up all my spoons on one day and then had to rest for the next few days working myself slowly back up to active days.
Whilst I was diagnosed at Christmas with CFS/ME I can identify plenty of times where I have had to go intense spoon management. It is always frustrating and can rob you of any sense of control you feel you had over your life. I am still learning how to manage my spoons efficiently.
So there are two days of my life next to each other. I don't write this post out of a sense of pity or regret for my decisions, but as a way of documenting what life was like summer of 2019.
As the week continued there were good days and more challenging ones. I am writing this post now on Sunday evening after a really difficult day, felt physically very weak - standing up/ sitting and walking were all demanding. But in some good news my dress and walking stick were matching paisley - so that's a win!
Some people only had to look at me and know just how much I was struggling, others I imagine had very little idea, this is the nature of invisible illness.
Some people only had to look at me and know just how much I was struggling, others I imagine had very little idea, this is the nature of invisible illness.
I am now editing this at the end of the week, victories of the last five days include:
- Doing my first online shop
- Baking flapjack and lemon cake
- Finally selecting and cutting out the photos for Tom's photo cube, only 7 months after we turned 21
- Making a brave haircut decision
- Walking for one hour on one day
- Doing two shifts at work
- Keeping two rabbits alive
- Finishing and starting a new political book written by awesome feminists role models
- Dancing around the kitchen after 5 hours of straight political coverage watching, the Disney playlist made me human again until I saw the cabinet appointments and then I lost my mind again...
- Managed two days without naps even though I had the time to take them
Who knows what I might achieve next week!
Prayer Requests
- Use time living on my own (for the first time with my family away) as a healthy way to reflect without spiralling unhelpfully
- For my walking capacity to substantially increase
- For my family as they wonder through a jungle and soak up all the delights Costa Rica has to offer
-For my motivation for future plans and responsibilities return
- For our country with Boris Johnson as Prime Minister and the appalling cabinet he has appointed, really hope a general election is called as soon as possible
- A restful and grounding summer recess for MPs and Peers, boy are they going to need their energy when they return!
This is my twenty eighth blog post, thank you for reading, hope you have a restful week!
- Doing my first online shop
- Baking flapjack and lemon cake
- Finally selecting and cutting out the photos for Tom's photo cube, only 7 months after we turned 21
- Making a brave haircut decision
- Walking for one hour on one day
- Doing two shifts at work
- Keeping two rabbits alive
- Finishing and starting a new political book written by awesome feminists role models
- Dancing around the kitchen after 5 hours of straight political coverage watching, the Disney playlist made me human again until I saw the cabinet appointments and then I lost my mind again...
- Managed two days without naps even though I had the time to take them
Who knows what I might achieve next week!
Prayer Requests
- Use time living on my own (for the first time with my family away) as a healthy way to reflect without spiralling unhelpfully
- For my walking capacity to substantially increase
- For my family as they wonder through a jungle and soak up all the delights Costa Rica has to offer
-For my motivation for future plans and responsibilities return
- For our country with Boris Johnson as Prime Minister and the appalling cabinet he has appointed, really hope a general election is called as soon as possible
- A restful and grounding summer recess for MPs and Peers, boy are they going to need their energy when they return!
This is my twenty eighth blog post, thank you for reading, hope you have a restful week!
