Wednesday, 29 March 2017

Gallery of my Disability/pain related artwork

The Spoons Don’t Work….

Over the last 18 months, I have been reading as much as my tired and foggy little brain will let me, not only about the nuts and bolts of ME (I am all too familiar with that!), but about how to communicate the experience to the average chronic-illness-virgin. I am also a chronic pain sufferer and it is similarly difficult to explain to the average person what it is like to be in constant pain that is apparently not going to get better, and has no specific cause.

Whilst friendships with healthy people have withered and fallen like crusty brown leaves to the ground, I have made new and warm connections with the very elderly and the chronically ill. I do not kid myself that this would have been probable (or even desirable) before I became a refugee, fleeing the uninhabitable world of wellness, and finding a safe haven with those who are generous with the little energy they have.

Nevertheless there IS a need to explain my deeply baffling illness. There are times I need to defend my corner, and need to know how to articulate the fuzziness of our illness to a ‘healthy’.

I have discovered there is a whole new vocabulary for our diminished energy supplies, the best known being the ‘Spoon Theory’. For me at least I find this termanology frustratingly unhelpful. In brief; the idea is that a bunch of spoons, real or imagined, can be used to explain how the energy of a chronically sick person is drained: Eating breakfast: one spoon gone, taking a shower, minus another spoon and so on until I am spread like jam on the nearest mattress-‘spoonless’.

This similie doesn’t work for the simple reason that on any given day I never know how many spoons I have to start with. Sure, I know if I have slept badly and wake grumpy and in pain, it will likely be a beast of a day, but it is not always so easy to predict. Some days are slow to get started and then I find a surprising burst of energy after my nap. Other times I feel quite good and energised first thing, only to crash at 11am and am forced to retreat to my bed for the duration. The explanation is obvious: someone is nicking my spoons!

There is also the Energy Envelope ( the amount of energy I have most days would fit easily into an envelope), Energy Account ( at the bank of un-co-operative. where I can never get an accurate statement and someone keeps withdrawing my money), and Marbles (as with the Spoons, how do I know how many marbles I have or use?)…and don’t get me started on 'losing my marbles' which becomes more likely with every day that passes..

Why am I getting so steamed up about a handful of spoons, a virtual bank account and a lot of glass balls? Maybe it is because if I had a more ‘recognised’ long-term illness I would be getting treatment, not similes.

We are told we must have a new way of seeing things, a new attitude to being sick. We must work 24/7 at being ill and in addition we must advocate for ourselves in a world that is baffled by our illness, and is barely funding research to help us LIVE again.

It seems that when the medical profession can’t understand or cure something, they then turn the responsibility back to the patients. It can only be our own fault to have allowed ourselves to become ill with something that defies explanation: our punishment is to be forced to waste our minuscule energies on into ‘managing’ the unmanageable. Doctors telling us to pace more,is like the captain of the Titanic complaining that the ship is only sinking because the deckchairs are poorly arranged.

It is good that many people find the spoons etc helpful, and yes, I know most of these ideas come from patients themselves. Maybe I was just not drawn that way. I don’t believe that life can be codified so readily. Whilst there are activities that always take up a lot of energy, most things vary according to other elements that are completely outside my control: the season, time of day, other infections, my cycle, OTHER PEOPLE, receiving good/bad news, and for me how Mr H is- as there are two of us chronically ill at the elephant house. I would have to be a master statistician to analyse the spoons out of that lot!

ME is no respecter of our plans, schemes and attitudes. To paraphrase the saying; ‘ ME goes on regardless, whilst you are busy making plans’

Wednesday, 15 March 2017

It’s a Knockout!

You many or may not have memories of watching a TV programme with your parents called ‘It’s a knockout’. The show was hosted in a different UK location each week and featured local ‘ordinary people’ from two nearby locations, competing against each other in teams. The games were outsize versions of a junior school sports day: people were tied together, awkward objects were carried, races were made more difficult by the addition of foam, water or slippery surfaces ( no health and safety in those days)….and to add to the ridiculousness, most people were dressed in enormous foam suits that sagged high over their bodies, and had giant feet to trip them up for the hilarity of all.

During the last few weeks, I have been in a constant race of knockout , as I try to navigate a small flat dressed in baggy leggings and fluffy slippers, whilst slowly steering a bulky walker into door frames, spilling tea on the carpet and watching as my stick clatters to the floor nearly tripping me over. The International IAKO, was called Je sans Frontiers , or Games without Frontiers. The war that I am in is one where the borders are constantly changing, and the rules obscure... until you break them. I am not finding that much hilarity actually.

The times I am not in active combat with carpet rails, door frames and my own bruised body, I remain in a kind of shock at how quickly I have become immobilized. Up until three months ago, I used a stick in my rare forays outside the house, but inside the going was incredibly slow but steady.
Then just before Christmas my body stopped co-operating with its owner. I found myself sinking to the lino or propping myself up on the door frame on a trip to the loo. Pee breaks became something to think about a lot, but only do a little, as raising my frame onto my fragile legs was such a task.

As this sorry state of affairs dragged on I watched myself trying to juggle a stick, a cup of tea, and a bottle of water, then pausing to rest on the stick, and dropping all of them. I have forgotten my stick many times, and ended up stranded in the front room ( no we don’t live in Downton- its a 2 bed flat on a housing estate). I had begun to load myself with bags slung across my body to minimize the number of trips to and from the bed. I felt like a drugs mule.

One day I snapped- I don’t recall the specific straw, but I do remember how the camel’s back felt….yeah- not fun!! The following Monday I called the Occupational Therapist- and voilĂ - I now have the Swiss-army knife of mobility help; loan of wheelchair as needed, Walker ( with seat and bag ), kitchen trolley for transporting stuff...and my old faithfuls, my stick and mobility scooter. And yes….I am still mainly stuck in bed!

So this is life for the time being: I shamble around pausing many times- an absurdist figure that just isn’t funny. When I tell her, a friend offers me the kind loan of a china potty. On second thoughts I prefer to think of myself as a toddler- going from the depths of despair with every fall, but getting up with a big smile to try again.