Where D'Ya Go, Rho? Ep9 All Fun & Games

Hello again. It’s me yer friendly wee lost wummin. Rhona, a 40 something who has been lost for a few years but has decided to shake off the camo cloak that has me fading into the background. I now blog on a Tuesday and a Friday to coincide with the changing of the HRT patch on ma arse to explore my week and the ways I attempt to find answers as to where I have been hiding.

Last week was a busy one. I had a fair bit on. I did some modelling with Molke, did some Disability consultancy for individuals and organisations and got a catch up with my school pal when we broke my eldest out of school for a wee hooky day of fun. It may not sound like much to some but as a wee crip, genetic mutant there is often a price to pay for a busy life. I had been feeling pretty good but aware I had piled on the HUFTYS. Huftys are tasks that I cannot put off or reschedule. They hufty be done or else. They are time sensitive or date specific and I have spent much of my working life living by the HUFTYS.

I have worked primarily in welfare rights project work so my life has revolved around working efficiently to meet deadlines in order to get the maximum amount of money for my clients. Time is money and when your money comes from benefits then every penny truly counts. Any error on my part meant that people lost vital cash so I treated every case as though the cash were my own. It often meant I would work beyond my finish time in order to have a case ready for posting. I would use my adrenaline to see me through until I did what I needed to then my body would pay the price later. When the adrenaline would finally peter out I would have no capacity and would be lying almost comatose until my levels would return. At this point, I was capable of perhaps watching TV at most but mainly I would be asleep and in reload mode until able to return to usual.

I have used this method in many areas of my life and not just in relation to work. It’s often how I have managed to rock out at the front of gigs as I have balanced the weight of pain for gain, medicated accordingly and used my adrenaline to do what I hufty to enjoy the gig and get home in one piece. I make the effort and queue early to ensure I get to the front of the gig. At the barrier I can brace myself against the barrier and remain rigid and upright and hopefully right as rain until the end. I don’t relax until I am sure all my huftys are done so I am finally in a safe place to rest, relax and recuperate.

This method has served me well until I didn’t anymore.

Last year was particularly telling. I took my eldest to the Tartan Heart Festival AKA Belladrum up in Beauly, Inverness and my systems were not as robust as they had been in previous years. Initially I thought I was doing well. I brought a couple of small Cath Kidston tents that were easy to build and set up. I created a wee floral camp for us. One tent for supplies and one to sleep in, knowing my kid would no doubt prefer to cuddle into mammy when it got cold at night. Knowing I need some comfort to keep my dodgy brittle bones working, I brought an inflatable mattress that in the past has provided comfort that was almost as good as home. Imagine my disappointment as my expectations deflated as fast as my mattress did in the night. My spine meeting hard ground was as displeased as I was. I creakily tried to move but I have the skeleton of a sheep in that if on my back I am pretty unable to move unless shoved. I woke my kid and got her to shift as I used a drill attachment to inflate our bed. I was hyper aware of the noise made by the inflator but I was left with little choice. 3 times I needed to do that before morning came and the sunlight forced me to awaken.

This left me depleted and running on half a tank the next day. I couldn’t find the source of the leak in the bed and there was much to look forward to so we headed out and I spent the day conserving the energy I could in order to prepare for the day whereby I was set to go upfront for Travis headlining on the last night and I promised I would be in the throng for the last gig of the festival.

On the last day, I medicated 4 times what I normally would take in order to be topped up enough for the energy I was planning on expending. My medication can make me euphoric and if alcohol is in the mix then I can feel like a superhero. However I am a superhero with limited time on her superpowers and the crash is like if Superman just fell out of the sky and smacked himself on the concrete pavement below. Pavement superhero pizza anyone? Thankfully I knew better than to drink but by the end of the festival after being up front for Travis and doing my best at Why Does It Always Rain On Me after 25 years of pogoers knee, I was a very tired wee dude but the thought of another night with my body sleeping on the rough ground meant I was not looking forward to the packing up.

This is when my disability gives me actual super powers. I have the ability to plan ahead, many moves beyond my abled peers. I should be a tremendous chess player but instead I choose to reserve my skills to this alone. Knowing what lies ahead, I had already planned an outfit for leaving in, I had packed up my things and left out only essential items needed for the next day, apart from the actual carting of items to the car I had disassembled many items. However my wee gig buddy was not as efficient because while she has the same condition she hasn’t fallen in the pit enough times to learn the lesson, so her space was all over the place. I am a tody camper and don’t like mess in my area as I need the clear in order to be as safe as I can be. My boots are safely at the entry to the tent, my bag is packed with all my essential items for every weather condition or eventuality. I am a music festival Mary Poppins. I thrive in this environment as I often have the item needed to get others out of a bind.

When the event management company has neglected to stock the toilets with paper or anything else, I am on hand with paper, moist tissue and sanitiser. When someone needs a plaster, I have it. You went over on your ankle? I got you covered. Do you want a bandage or tubigrip? I have both. I am packing ponchos, space blankets and sunscreen so I got you no matter what the issue is. It's supercalifragilisticexpealidocious! It’s from years of going to outdoor gigs and while everyone else was pissed in a field, I was a first aider kicking folks in the Slam tent checking they were not unconscious but merely drunk and by the way, don’t collapse for a kip on the sides of the tent as that is where many have had a cheeky pee so urine trouble falling asleep there as you’ll wake reeking of piss.

So I was prepped to a point but many of the items I would have packed wasn’t done because my wee pal wasn’t thinking about the 4 hour drive home. She would probably just catch a kip in the car, while I drove home. I knew my medication had gone up from previous gigs where I would just double up, I had changed to treble meds and now to quadding up. The problem with this is the come down is horrific. My adrenaline would see me so far but I knew I was time poor overall. Inadequate sleep was depleting my stores and I knew by tomorrow I would run on fumes. So after the gig had finished and my wee pal was in the land of nod, I decided to take it upon myself to cart some of the remaining stuff back to the car to make life easier in the morning. Sadly the cars were a wee distance away so I had to factor many back and forth trips to the car carrying chairs, excess food and then I came up with my ultimate move. I would leave the kid in the tent and I would pack up the other tent, the windbreaker basically everything bar the kid, my essentials bag, basic breakfast supplies and her general mess while she slept. I decided my hufty for the night was to pack all extra items away leaving a bare minimum to accommodate for my low personal fuel gauge.

I started well and got some big items gone and away. The walk back and forth was the killer. I couldn’t get my car much nearer and every trip and task was eating into my reserves. However I knew it was pain for gain. My reward would be sitting in the front seat of my car at the end, recliner on. Sore but smug at having broken the back of the work and howffed my hufties in the car by morning.

I packed my wheelchair away, our excess food and water, our zero gravity chairs, the table, the windbreaker, the solar lights we lit the space with and our bunting flags. Anything not essential was in the boot but each trip was becoming physically slower. My last runs were excruciatingly slow, dragging my carcass along. The medication had me not knowing if I was Arthur or Martha, or even Rhona as my body began to weep at my plan. I was down to the last items and managed to shift my motor to just outside the perimeter to cut the walking down to a minimum when I had a final one or two trips to go. I could feel the finish line. The rain was that fine rain that soaks you through. Not heavy to impede but would subtly soak you and slow you down. Smir was not going to defeat me with only a couple of trips to go when I went to get one of my bags out of the tent my baby was asleep in when… I misstep over a rogue shoe that was in my way. Thanks kid.

My crutches didn’t save me as I went down like a huge sack of Ayrshire tatties. I crashed down on our semi inflated mattress and while my baby remained asleep, probably welcome of the added air she felt on her side, I smacked down like a wrestler on the canvas. The fall was the finish of my momentum. I was unable to roll in any way, my hips were Shakira’d and they didn't lie, they were buggered. I had enough energy to move if unimpeded but this was a knockout move. I was down. I was out. The lady was not for turning or any other movement for that matter. I managed to get a hand in my pocket and managed to lock my car so the last thing I saw before crashing out was the double flash of my indicators.

I was found the next morning in the position I fell in, my wellies half out the tent but still on and thankfully the weather was on my side so the smir was now early morning dew. I was hardly able to move at first but with another dose of meds and 20 minutes to activate I was able to shift enough to sit up and survey the damage. I was bruised where my crutches mangled with my legs but overall it could have been worse.

The event management company hadn’t planned properly for Disabled campers so there were issues regarding who should go where. As a solution the campervans were placed whereby they could get an easy electric hook up but this meant that Disabled patrons were hindered getting to basics like the toilet and such and needed to walk a much longer way round. It also meant that wheelchairs had a longer distance to manoeuvre before reaching hard standing. The solution was easy but to the detriment of a majority. Ideally, they should have been at the campervan site with shuttle transportation for those with mobility issues or a separate site sought but on a basic level there were instructions not to bring such transport to the Disabled Campsite but I take it others don’t read the small print or guides they publish.

Turns out some of the campervan people wanted to leave extremely early (before 7pm) and due to the sheer size of some they needed extra space to shift. Anyway some of these happy campers became unhappy campers as the space for exit was enough for emergency vehicles, cars and most traffic but some of these behemoths were unable to shift due to a red Toyota Corolla that had parked within the car park but just too close to the entrance so they couldn’t exit until the owner of the vehicle was found.

Ooops! My bad. I managed to pull a ninja move whereby I appeared to be heading to the loo but veered off to the car and shifted it before any noticed it was me. I waited for 10 mins in the car after parking- mainly enjoying the heated seat and the radio but also watching the arseholes with their vehicles that were way too large for the space to pull a 432 point turn to get out of the site.

We finally made it home and my reserves of energy saw me get in the door but nod off in the bath and thankfully I had a helping hand in my husband to get me bed ready whereby I stayed for a couple of days. Lessons were learned and this year I hope to be more streamlined so that my energy reserves get me through in one piece.

Little by little over the years the meds have increased and the streamlining has been tightened to the point that it spills into just a typical week and isn't just reserved for large events. Its like a games of snakes and ladders, I experience gains and highs but no sooner have I accelerated, I encounter a chute that drops me down again a snake that slitheres me back to square one. The invisibility I have felt is like being back down the board from where I was but I determined to roil the dice and keep playing until the end. It s all fun and games and I'd rather play than tap out altogether.

Last week I put too many huftys in the diary and my body couldn't handle the limits I had set. My recovery rates are getting longer and longer and basically I've spent the last few days not being at our caravan as planned but I have been asleep most days until around 5pm. My body has been whappit oot and I have no energy to offer until my rest is done. This week I have a few huftys and a couple of last minute huftys so my blogging was put aside but I also have a quality that won’t allow my body to always set the pace.

I have an innate stubbornness that allowed me to miss Friday by having produced a double blog but after that my pig headedness means that I am typing like a mad thing to meet a midnight deadline I have set for myself. I am determined to have a blog for you before Tuesday is out. Firstly because I promised and I don't like breaking anything- bones or promises. Secondly, I think the act of blogging is giving me a focus I look forward to. It is cathartic and is part of my journey out of the darkness and even baby steps of writing this blog has me closer to figuring out where I’ve been and how to return again. It is a form of recuperation so while my body is weak my brain is stubbornly busy so I felt compelled to blog. Tomorrow is busy for me but I can sleep soundly tonight because I accomplished what I set out to do. I did what I hufty and now I can sleep peacefully. Night y’all. x