Well clearly I’m doing well at keeping to a schedule…. not. It’s a good thing I don’t have a huge following behind this or I’d likely be nagged by people about when my next post was going to be. So yes once again I’m late…. deal with it?
One thing I identify strongly with is the ‘Spoon analogy’ and anyone who knows me or follows me on Instagram knows that I use the # for it a lot. Here is the link to the original definition of the spoon analogy, but if you don’t want to read it I generally summaries it as the following:
Everybody gets a certain amount of spoons a day and doing day to day tasks costs a number of spoons. For an abled/non-spoonie, their spoons can be limitless and/or the cost of using a spoon is smaller. For someone like me we have a limited number of spoons a day and when we use them up … well generally it means we’re too low on energy to do anything. (https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)
For this past week I used up all of my spoons. It was a good week, don’t get me wrong…I got a lot achieved and I got to socialise with some of my closest friends… but it was still a lot for me to go through mentally and physically. Which is why I spent the entirety of Sunday (after dropping off birthday presents to one friend) laying in bed and binge watching Netflix. I tried to write a blog post but honestly my brain could barely handle speaking coherently let alone typing. And the thing with chronic illnesses is is that the punishments for enjoying oneself don’t go away after one day of rest. Generally I have found that I suffer more the second and third day after a social/active day. Like so many others I really have to plan when I’m going to do certain activities that I know will have a negative impact on me afterwards – such as seeing more than two people a week.
AUDREY IS ALIVE
Audrey is alive. For the moment. I’m due to feed her tomorrow as she now resides in the fridge, although there is an awful lot of water sitting on top of her so I’m not sure if that is normal? I’ll have to look it up. Regardless she is ready for some baking to happen so once I have the mental focus and physical energy to make some sourdough bread I will!
However I did do some baking last week! As said it was three friend’s birthday’s. Unfortunately I was only able to make one cake for two of my Harry Potter nerds, so the other got a shop bought cake called Eric (caterpillar cake). My cake tasted great, especially for being both gluten and dairy free, but unfortunately I’m not the greatest decorator in the world… and my dairy free buttercream really didn’t want to cooperate with me. So it sort of splurged out. Regardless it was the thought that counted and they both seemed to enjoy it!
I am also very lucky in that my parents decided to buy a hot tub last year and I love it. It is a great help for when my joints decide that they want to complain and when my muscles join in as well. But it’s also great for socialising in and generally relaxing. During the hot weather in the UK we managed to turn it right down so that it was actually cooler in the hot tub than it was everywhere else. I’ll often sit in the tub during the early hours of the morning if I can’t sleep as it’s wonderfully relaxing and really peaceful at 3am.
I think my friends just like it because it’s a hot tub. It’s very much a luxury item to most people, but for my it’s now an essential. Especially since we’re getting rid of our bath tub soon.
Another thing my friends and I all have in common is our love of board games! They’re definitely something people need to get into more. I’m not the best, especially when it comes to things like monopoly but they’re definitely still fun. My Harry Potter nerdy friends brought over some of her HP related board games so they were very fun!
So here’s to a calmer week and catching up on some much needed ‘me’ time.
I’ve already been far more productive today that I thought I would be considering I’m completely out of spoons. I’ve been for a walk, completed my physio exercises for my shoulder and I managed to do a blog post! Yay! It’s the small wins you need to keep a track of.
Stay happy. Stay Healthy. Stay Beautiful!
Everything will be alright in the end. If it’s not alright, then it is not the end.
We’ll see how long this goes for, but I’m hoping that for once in my life I’m able to stick to something like this. I tried a blog post in the past but it lasted for all of 2 weeks to the point where I can’t even remember the site I used anymore. I’m hoping because I’ve invested money into this I’ll at least stick with it for the year I’ve paid for. That’s my goal. Stick with it for a year and see how it goes.
The purpose of this site is mostly to act as a sort of open diary from myself to the world. I often struggle, like so many people, to voice the thoughts bouncing around my head and find it easier to type them instead. But generally there won’t be any aesthetic to this… it’ll be thoughts, feelings, reviews of new items/clothes/films… a little about me, about my friends and about my life. I’ll be including my struggles with dealing with Chronic Illness and with dealing with my family, whom I love dearly but sometimes they really drive me up the wall. I’ll be posting updates on my theatre hobbies, information of shows I am assisting in/performing in. I might even post the odd poem or two, although I’m not much of a fiction/poet at the moment. My hopes are that by having a space where I can voice my chaotic voices, and maybe just talk about my struggles a little, I might be able to not only help myself but someone else in a similar situation to myself.
So let’s start at the beginning.
My name is Jess, or Jessica when I am in trouble. I am 24 years old, currently unemployed and living with my parents. I come from a crappy little city called Peterborough in the East of England, UK (ranked no’1 worst city to live in for 2 years running! Woo!). I have a BA (Hons) in Acting, that I received from the University of Wales, Trinity Saint David; a tiny campus in Carmarthen, Wales, that I adored and still do to this day. I wear glasses, thanks genetics, and at the moment have pink hair – although generally my hair will reflect my mental state in the fact that it’s constantly changing colour and is rarely ever ‘normal’.
My favourite colour is purple, my favourite food is Chinese/Cantonese style cuisine and my favourite animal is the Otter.
And I have Ehler’s Danlos Syndrome (EDS).
Notice how I tried to mention that one last. As much as I do not want to be defined by a disability and chronic illness it unfortunately takes up a huge part of my life. I’ve tried ignoring it but unfortunately real life doesn’t work that like that. Whilst I am very fortunate with the severity of my EDS, such as being able to still walk 90% of the time, I still have many issues. Issues ranging from chronic pain and fatigue to depression and anxiety. I was diagnosed in 2018 after I unfortunately lost a job due to long-term sickness. It was during that time my family and I decided we needed to figure out what was going on with me, as this wasn’t the first episode I had suffered with. Even now I still struggle some days and still fight to get myself out of bed. I have lost two jobs because of my illness and lost many more opportunities for work due to not being able to physically do the work. I can no longer work behind a bar or in a restaurant without needing to sit down every twenty minutes. I struggle in office environments where I am either stationary for too long or I get headaches and migraines from staring at computer screens. I have yet to find something that works for me. And no employer in their right mind would higher someone who is going to be off sick a lot.
However I am too ‘abled’ to be able to apply for disability. It’s a struggle so many people face and I know so many people in worse positions than I who are unable to get disability. The fact that I can walk and shower myself most of the time instantly rules me out. What people don’t see is the battle going on inside my mind. The struggle I face when my joints are constantly popping in and out of their sockets, constantly cracking and clicking. The constant pain I have 24/7. That some days just getting out of bed and down stairs is an accomplishment for me. That some days I am too tired to even think straight let alone try and work out how to be a productive human being for the day.
One thing I have realised is the little things people take for granted. How easy it is for some people to just get up, shower, get dressed and make breakfast. What may take someone an hour to do all that would take me all morning and by that point breakfast has become lunch. For one person it could take 20 minutes to fall asleep, for me it depends on the temperature of the room, what I’m wearing to bed, is it hot or cold outside, what have I done in the day, how much pain I’m in, how active my brain is, am I comfortable, do I have enough pillows? do I have too many pillows? — I’m lucky if I fall asleep within an hour of going to bed. Usually it’d take 2-3 hours of lying there in the darkness with my own thoughts before finally drifting to sleep. Only to be woken up an hour or so later because I’ve dislocated my shoulder or knee just by rolling over…and then people wonder why I don’t get up until 10am!
If you hadn’t noticed I sort of get in the habit of rambling from time to time so don’t be surprised when content just becomes utter rambling gibberish. This especially happens when I am upset or passionate about a particular topic. I suppose the point is is that this is my safe place to ramble and slurry a stream of thoughts onto a page in hopes that either it’ll help me in my day to day life or someone somewhere out there might understand.
I think for today this is enough.
Stay happy. Stay Healthy. Stay Beautiful.
And remember, ‘everything will be alright in the end… if it’s not alright. It’s not the end’.