Where D'Ya Go, Rho? Ep11 Not Throwing Away My Shot

Hey there, it’s me, Rhona your 46 year old lost Disabled wummin in search of herself after a few years in the wilderness. I have come out of the woods looking a bit like Grizzly Adams if the newly growing chin hair is anything to go by and is now on a path to recovery and finding out Where D’Ya Go, Rho?

First of all, apologies for not blogging on Friday. My aim to was to release blogs on a Friday and a Tuesday in conjunction with the changing of the HRt patch on my arse by means of a symbol of this recovery journey. Friday was unexpectedly exhausting as I needed to recuperate from the week past and prepare for a busy weekend. I had been waiting for this for over a year. I was taking my eldest daughter to see Hamilton the musical in Edinburgh and by hook or by crook I was going to see it.

The whole day was really special. We shopped in the vintage shops, ate delicious food and saw a marvellous performance. We were already big fans of Hamilton prior to going and knew most of the words (some missed only due to the speed of the rapped performance). We missed out on a tour of the set because a production crew member I knew was on their day off but all the same we cheered her on knowing how her role was still vital to this massive show being achieved. If you don’t know of Hamilton, where have you been? Please check it out. They are still showing the original New York performance on Disney Plus.

It was well worth the effort of going and the exhaustion and recuperation required afterwards. My bank balance took a hit but worth it for the smiles on our faces and the memories made. It is also worth my blog being late published.

I am a spoonie, so I need to be mindful of my energy reserves at all times. My ability to count my activity in spoons is not new.

“The Spoon Theory”, a personal story by Christine Miserandino, is popular among many people dealing with chronic illness. It describes perfectly this idea of limited energy, using “spoons” as a unit of energy.

Miserandino, like my own sister, lives with lupus, a chronic autoimmune disease which causes an immune system to attack the body’s healthy cells. One day, Miserandino, while sitting in a cafe with her friend, tries to explain to her and help her better understand the realities of living with a chronic illness.

Miserandino contemplated.“How do I explain every detail of every day being affected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.”

Miserandino goes on to explain how she gathered spoons and used them to represent finite units of energy. Energy, for many of us with chronic illness, is limited and depends on many factors including stress levels, how we’re sleeping, and pain. Miserandino then walked her friend through the friend’s normal day, taking spoons, or energy, away from the friend as the discussion went on. By the end of the day, her friend wasn’t able to do as much as she wanted. When she realized Miserandino went through this every single day, her friend started crying. She understood, then, how precious time was for people like Miserandino, and how few “spoons” she had the luxury of spending.

As a child with Osetogenesis Imperfecta, a rare genetic connective tissue disorder that makes my body hypermobile and can cause fractures from little to no effort eg. sneezing, I couldn’t explain how different my energy levels were. Basically when a “normal” person takes a step and moves their leg mine would hyper extend so the likes of my knee would actually go so far beyond the normal range of motion that it could point backwards and lock. I had a number of party tricks like appearing like my feet were the wrong way round or making my thumb bend at right angles to my wrist. Imagine that in all my joints. The effort taken to then walk meant my step took more effort and energy to achieve. It also created more damage, thus why in my forties I am dealing with osteoarthritis and degeneration from my joints being overused.My condition didn’t stop me as a kid, mainly due to my own stubborn attitude. I did PE in a full leg cast and tried to keep up with my friends knowing I would pay for it later. However, the price began to take its toll. I went from a happy, bubbly kid to one that was lethargic. Prone to napping after the school day or by the time Friday came around being so shattered I was begging for a day off. When I was “tired,” though, people didn’t quite understand the extent of what I meant.It wasn’t until many years later that I found a way to explain my fatigue better. It’s when I found out about the Spoon Theory. Identifying as a “Spoonie”

It’s unlikely Miserandino expected so many people to identify with Spoon Theory when she conceptualised it and wrote about it on her site, But You Don’t Look Sick. But until Spoon Theory, no one else had explained the trials of chronic illness so concisely and, yet, so effectively. It’s been accepted across the world as this amazing tool to describe what life with illness is really like. The Spoon Theory has done some great things since its inception – one of which is providing a way for people to meet others dealing with illness. A quick search on social media will pull up hundreds of thousands of posts from people who identify as a “Spoonie.” I personally wear a beautiful vintage silver spoon round my neck, handcrafted by a wonderful friend Carole Kay I wear it as a symbol that I always have my last spoon on me and to try to be aware of my usable hours (not all the hours I have in a day are usable due to pain and fatigue) and finite resources.

Managing life as a ‘Spoonie is not always straightforward. I have a type A personality and take on a lot of projects,whether that be work or hobby, so life as a Spoonie isn’t always easy. It’s not my choice how many spoons I am allocated, the illness decides how many we have to spend. A “Spoonie” usually has fewer spoons to spend than the things that need to be done in a typical day. Outwith the medications and doctor appointments, our day-to-day lives can be limited and dictated by what our illnesses do to our bodies and minds.

Due to having multiple chronic conditions, I constantly use the concept of spoons as energy with family, friends, and others. When I’m having a rough day, I often express to my husband that I may not have the usable hours to cook dinner or run errands. It isn’t always easy to admit, though, because it can mean missing out on things as a family we really want to take part in. This means that my husband is often lumbered with daily tasks like cooking, cleaning and ensuring our children are sorted for school while I spend my usable hours just keeping myself afloat. It can feel very selfish but without doing that I would be all work and no play so family life would be non existent by me. Instead we play to our strengths and I put effort into taking the girls places and helping them have good experiences with me alone or together as a family to ensure that it’s not essential life only for them.

As someone who has lost key family members early in my life, I am very aware that we walk this way but once and that we mustn’t waste the shot we have in life. This is key to why the past few years have really affected me in a negative way. I have been a busy person in my day to day life often working a full time job while studying part time at night, or having a side job in my spare time like when I was a Disability tribunal panel member. I am a keen crafter so often found in my hobbies when time is at hand. Hobbies have often been things that could be done from the comfort of my bed so physical restriction has not been exclusionary.

However, the vanishing feeling I have experienced in these latter years has been mentally devastating as I would find myself doing nothing. Staring into the abyss or doom scrolling as hours pass by. Bed rotting for days, into weeks, into months. A close friend persuaded me to attend college and as I can look onto the Cardonald campus of Glasgow Clyde College from my front door it seemed a logical choice.

From a look on a Friday afternoon, to a brief interview I was signed up to an NQ Media and Communication course to start on Monday. I relished that year of study, while I was able to have taken on the HND, I reckoned the finance side was too frantic to be solved in a weekend so did the lesser qualification first. I am glad I did as I met some wonderful people as a result of that class. I was charged to then take on the HND the following year but then…coronavirus landed in the mix and my health took a nosedive sending me into a chaos that I was struggling to explain myself.

The bleakness of my mood was a strange thing to take on board. It’s one thing to feel low but to feel blank, forgetful, incompetent, useless and overall pretty worthless, mustering up the confidence to study and produce work I was content to submit was another entirely. I thought going part time would make the difference but mentally if you are not in a place to work, then it’s not going to notice you’ve reduced your hours and throw you a bone. I can handle physical incapacity but when my head follows suit then for me it’s a GAME OVER scenario. No spoons are able to reboot my brain when it has cashed out from the game.

Fearing I would never accomplish my goals, I am thankful for my new medication, new therapy and support from family and friends that I may get there. I have made enquiries to continue my academic journey and hope for positive news on that front.

Currently I am at my sitooterie by the sea, an unexpected trip after going with my former teacher and friend, Iz to see the brilliant NYE as part of National Theatre Live. Michael Sheen stars in this wonderful look at the life of politician Aneurin Bevan. As an extra bonus I was surprised to find two acting mates of mine were in this performance too. It was stunning but saddening that the NHS is being dismantled from from it was created for, back into a system for the haves and the have nots. It is such a special system that creates equity of basic care that we must fight to keep it alive for all classes of people to benefit from.

I was so excited about the performances this week for additional reasons by knowing either cast or crew at each and it made me really cheer for a good show for them too. It also made me realise the shots that I am allowing to slip past me due to this vanishing I encountered. I have acted on some of the most illustrious stages in the country, yet I have been so lacking in confidence I am terrified of standing on a pallet let alone an actual stage. I love live theatre, it creates such a buzz. There is a fear of missing lines but the adrenaline can grab a line from nowhere and see you through. My vanishing caused my memory to be affected but I am noticing that of late it is not so pronounced as it was. I am purposely trying to be more articulate in order to recall the correct word for the exact situation. I am trying to train my brain back into business. I play daily Wordle, and other word and numbers games daily to pump iron in my brain. I not only get enjoyment from it but feel I am trying to get my brain back in shape. The body is another story for another day but without my mind I am nothing so first things first.

I want to go back to acting, performing and stand up as it too is a muscle so while the menopausal pounds are another fight for another day I will at least try to connect again with the life I love. It may be little steps but it is always a tiny step further than I was. I need to be in the room where it happens and by watching more theatre, I am recalling why I loved it in the first place.

So watch this space because like Alexander Hamilton, I am not throwing away my shot. I am gonna be in the room where it happens and I am gonna put myself back in the narrative. If you’ve not seen Hamilton that last part may pass you by but I hope to not pass you by in the future.

CLICK BOOM!