Monday 18 April 2011

Guest Post on Simple Sickie Pleasures, by Kaliya Franklin

Wonderful Weekends

Times are tough for sick and disabled people. A constant onslaught of welfare 'reforms' combined with frequent media outrage about benefit scroungers and increases in disability hate crime mean that many of us feel we are literally fighting for our lives. This harshening of attitude to state provided support not only depresses and scares us but for many of us, means that we fear being seen doing anything 'nice' lest someone should decide to report us for fraud. On blogs and twitter we've discussed 'disability normal' to try and help the wider public understand we have the same hopes, dreams and desires as everyone else, we just have additional pressures not shared by a still able world. At Broken of Britain we've all pretty much worked ourselves into the ground, not because we're truly fit for work but because we recognise that our backs are against the wall and if we do not win this battle, we will face fighting a far greater war for our very existence. Over the past week or so the core BoB group have been hit hard by the health consequences of our work, one has had increased heart problems, another the first signs of a Crohn's flare, one is still recovering from surgery, another still unsure if they'll be homeless in a few weeks and I'm still getting over the breathing problems from a few weeks back.

The flipside of this 'back against the wall' attitude is that sick and disabled people tend to grab life with both hands (metaphorically, we tend to be a bit crap on grip strength) and on the occasions we're well enough, we LIVE. I've just had the busiest, lovliest, happiest weekend I can remember in years, more years than I care to think about. It was packed, and I'm in horrible pain and exhausted, but the happy memories will keep me going for years to come.

Friday started badly. I opened my inbox to find another email from a person disabled by mental health issues explaining that they had already made one suicide attempt and were planning another once their WCA assessment letter arrived. I sobbed down the phone to a friend in impotence and sadness that a Britain, once so great was putting this kind of pressure on it's own citizens, more so when I heard a journalist contact on twitter had also received a similar message that morning. The rest of the day is a bit of a blur, but the time spent with my neighbour's two year old dripping bubble mixture onto my head was just the medicine I needed to recover from such a sad start to the day. The rest of the day is a bit blank, I remember lots of pain and sleepiness and not the skype conversation I had with a friend - most of which didn't make sense when read back. Perhaps that's why, no matter how hard I try I have no recollection at all of Friday night.

Saturday was a beautiful morning. To chase away the need to vomit I went for a deathwalk, setting off thinking as I was in the best part of the month hormone wise I was looking pretty fine. Until my physio neighbour chased after me to express her horror at how floppy my hips were looking and warn me not to go too far. I made it, without need for rescue, but did need two hours in bed afterwards to recover. My upstairs neighbour had asked me to go wedding dress shopping in the afternoon and I was SO excited and honoured she'd asked me. When we arrived at the wedding dress shop, as so many wedding places seem to be, it was upstairs and of course there wasn't a lift. Fortunately the stairs were low rise, with landings in place every few steps so my neighbour and the hand rails got me up, and my bottom got me down. There's a time and a place to make a fuss about the lack of access, and shopping for the biggest day of someone else's life is most certainly  not it. Several dresses, cups of tea and tear stained tissues later we'd found the perfect dress and headed home for the early tea at the pub we'd planned.

We walked and BendyBus'd along the promenade to the busy pub and enjoyed our meal, particularly the 2 for 1 deal the pub run meaning it only cost about a fiver a head, then walked and scooted back to our local where we sat outside with the dog and even I had a drink. I couldn't finish it because it made me feel sick, which is probably fortunate as even that tiny amount of alcohol produces wildly inappropriate one liners to come out of my mouth before I know what I've said!

We headed home around 9pm and sat in my back yard wrapped in blankets listening to music, talking, smoking and drinking. Somehow a gnome ended up looking like it was butt fucking a plastic cat and the snails were holding a full blown festival which we all found highly amusing. Ok, I did. The others just found my snail festival overexcitment highly amusing. By around midnight we all crawled off to bed, and even though it took me two hours to stop shivering and frequent waking later due to being so cold under the two duvets and hot water bottle I'd piled on my bed it was well worth it.

Pain woke me early and feeling rotten but I was so excited about the prospect of my back yard getting the 'ground force' treatment I tuned it all out and focused on that. We loaded up the BendyVan with my wheelchair and headed off to the supermarket and garden centre to stock up with food and plants, intending to have a BBQ later on. I'm so used to having to do things alone that every time I'm with people who automatically support my disability it comes as a huge shock to me how easy life becomes. If I'd wanted to go to the supermarket alone, even with the mobility scooter it would have taken up the entire day and left me exhausted, but with friends to push me and help out I was able to do it all and still have the energy left to do some planting. My friends did all the hard work gardening, lifting, sweeping and sorting while I potted a few plants. Half way through I dislocated my ankle and wobbled wimpily in the middle of the yard until someone sat me down, helped me take my boot off and hung onto my foot as firmly as they could so I could relocate the ankle. It only took a couple of goes but was quite upsetting for the others.

The garden was transformed within an hour or so and we were exhausted, happy and excited for our BBQ. Which was when we discovered the other neighbour who'd been dispatched to buy BBQ's and meat had got a bit puddled in the supermarket and thought we were buying them. Not deterred by this lack of BBQ or food we combined ingredients from various freezers and kitchens and my upstairs neighbour used my kitchen to make a fantastic meal. We sat in the newly sorted out yard, with candles, the gnome shrine* a beautiful meal and wonderful company.

It might not seem much to you, a weekend spent close to home, a meal in the pub, a drink and time with friends. But for me it was wonderful, exhausting, exhilhirating and oh so very special. So special that even the fear of being reported for benefit fraud because I was actually enjoying myself couldn't spoil it. 


  1. Great post! I too live in fear that people judge and resent my nice things time, thinking that my going for coffee and cake once a month is living high on hog's back and paid for by them...

    Ironically though one of the reasons I'm on benefits is severe agoraphobia and I am therapist mandated to do things like go for coffee or lunch or a walk because if I can't learn to do things with a reward at the end of them, I will never be able to face getting to work in the rush hour and rebuilding my life.

    So I feel judged for being ill and judged for trying to get better...

  2. Why do we feel this way, if a brown envelope drops through the door or a stranger knocks, why do we feel despair straight away. Its because the present government and the media are doing a fantastic job in highlighting the fact that people with disabilities may be swinging the lead so to speak. Is there a law that states that a disabled person cannot enjoy life or participte in sport after all dont we have disabled sports. The reason its wrong is because we claim benefits no one would care if you were at work but just cause you may claim benefits you are not completly disabled!!!

  3. yes...different details of story, similar feelings...I had a very lone weekend but I liked it, enjoyed my energy when it was there and the fact I am working through an ear & chest infection both mild at the moment but could flare into hospital time or me resisting going in...unless I need to go on oxygen...don't think it will get to that, not fearing it will or frantically resisting it if it does progress to with uncertainty is all the fun of the fair....smiles...I am meditating a lot and just going with my flow, it gets upsetting feeling like I am punished for that, so I'll now just go back to flow...smiles

  4. Glad to hear you had a super weekend. Me too! :-) Barbecue at new (to us) house with family and twin grandsons, but can barely move today am so stiff. And how lovely to see the sunshine! And the apple tree and crab apple are blossoming, such a beautiful sight. Best wishes from Aigburth, Maggie

  5. Great post glad you had a great weekend.

    All the stress on this subject and feeling like scum - I didnt leave my house much before and now I do even less. I have no friens, no neighbours who i know, nobody near me - I see only my immediate family.

    I am too scared to go anywhere even on a rare good day as I am obviously scrounging scum who is absolutely fine!

    My small and very isolated life has become the smallest of places I have ever known. I will go out tomorrow as I have a hospital visit and anothert very scary hosp visit in about a week. That one is v scary (CIN) and - well I am petrified all over again

    Life is harsh. But it is my life and however small it is - I would like to feel it was worthwhile and that I was MORE than just a firty stain on the life of all else.

    I was a somebody once!

  6. well those of you who read Sue's blog know my story it's my liberty that i have lost over the years and am tied up to all manor of things from the DWP on what i can and cant do
    God give me strength(LOL)