Stop the world, I need a rest! #TBofBTT

While I am sick at home the world doesn’t stop. There are weddings. There are big shows, music festivals and other events. There are protests that I want to attend. There are real-life meet-ups for groups that have been chatting over the internet. My intended schedule for the next month is hectic: First it is the Prescott Bike Festival, to raise money for Blood Bikes. The following weekend some friends are getting married, 180 miles away from here. The week after that, we’re up in court for non-payment of council tax. (Which we disagree that we owe, due to benefit chaos caused by attempting to do the right thing.) Over Easter my wife’s parents will be visiting, and we will have a big dinner together with my parents. The weekend after that I am visiting Brighton for the weekend to meet up with other politically aware people I talk to on twitter. Then there is a gospel choir performance a few days after that. On top of all this, I have jobs that I need to do such as some work on my wife’s motorbike. Oh, and I’m moving house in the next two months.

It just isn’t going to happen like that.

At the moment I can spend around eight hours per day out of bed, and not every day. I can’t predict when I can get out of bed, or when I can do anything that is expected of me. On many days I can choose to either have a shower, OR to wash the dishes, OR to do other things that I want to do. Given that, how can I do any of the big things I just listed? In reality, I have to prioritise. I have to choose what is viable, and what is really important to me. I have to acknowledge that a really big weekend will wipe me out for a week afterwards, likely leaving me unable to even get my own food and drink and struggling to reach the bathroom. Out of all that I listed above, the bike festival will depend entirely on how I feel that day, it is not practical for me to get to the wedding, since the travel and sleeping on a friends floor will destroy me, and I can’t afford it anyway. The visiting family, I can just about handle as I will disappear off to rest lots while they are here. The trip to Brighton, I am going to manage if it kills me. Unfortunately, it just might.

This is the reality of long-term sickness and disability. 

This is #disabilitynormal

Guest post by @latentexistence. The original can be found here

The Brain Fog #TBofBTT

I think I'm the only disabled person I know who doesn't refer to themselves as a Spoonie. It's not that I have anything against the term, and I can understand why people do use it, it's just that I never have. Probably because I'm too lazy to explain the concept to people, tending instead to say "I'm in constant pain and my body is working harder than most, both of which make me very tired". Subtext - I'm not lazy, and I would love to have more energy, so please take your judgement elsewhere!

The term Spoonie hadn't even come to my attention until I joined Twitter, and started speaking to other disabled and ill people about in less than fully functioning bodies. I'd always had contact with other EBers, but if we discussed our health at all, it was always specific to EB and it's complications (blistered eyes, blocked oesophagus etc). By speaking to my Twitter pals, especially those linked to The Broken of Britain, I started to understand life with a disability more than I ever had before. And though I don't call myself a Spoonie, one term took a figurative leap off of the screen and shouted "Yes! I actually exist!" - the Spoonie brain fog (search for #brainfog for evidence).

I don't remember having the brain fog until the end of my first year at university, though I'm sure I had phases of it before that time (my brain has done a fine job of editing my long term memory into snapshots from the past twenty-four years). I know I'm lucky to have gone that long before it hit me properly, but when it did, it hit hard. My renown loquaciousness abandoned me the instant I tried to write essays, leaving me slumped over the keyboard and close to tears, struggling to recall the sentence I had formed in my head ten seconds ago. It didn't occur to me that it was to do with the fatigue of living with a disability, and so I looked for causes for it; in the process I found a major hormone imbalance and was eventually diagnosed with long-term bipolar disorder, but the medications for each of those problems failed to clear the fuzziness in my head. So the sense of relief and belonging I felt when I saw that term, and that hash tag used amongst my Twitter friends, was almost palpable. It wasn't a failure in concentration on my part, it wasn't stupidity, or a willingness to let my perspicacity slide away from me, it was the result of living in a body that has to work its metaphorical socks off just to keep going every day. It sounds awfully self-pitying to explain all of the trappings associated with ones health problems or disability, and so more often than not, we don't. People around us see the surface, but they don't see the frantic paddling our bodies are doing beneath it. When you're born with a disability or illness as I was, it isn't any worse than developing one, it's just maybe more difficult to understand what is usual and what isn't, as there is no 'life before' to use as a point of reference. Though I wish none of my friends were ill or disabled, having their experiences to learn from has been a huge help to me.

After two short spells in hospital recently, I was checking my emails and realised that I had no idea what the ones from my The Broken of Britain cohorts were referring to, and yet I knew I should know. It's a sign of how easy it to throw a brain that is surrounded by the Spoonie brain fog off course - two days away from my emails, and I might as well have been living in a cave for a year for all of the insight I had. But although it still frustrates me, and although I still haven't really accepted that this feeling befuddlement isn't going to leave if I shake my head hard enough, I feel much easier now I can email TBofB team back, as I did last week, and say "I'm out of the loop". And they know exactly why that is, and they pull me straight back in.

NB: I wrote this after five false starts and lots of irritated tutting and cursing!

By Melissa Smith, TBofB. The original can be found here