Good morning world! I'm back from my "holiday".
The next time I suggest it might be a good idea to go camping with two small boys, bowel disease and osteoporosis, could some kind benefactor please send me to the Caribbean instead? First class? With porters? I was so exhausted by the time we went to stay with our friends at the weekend, that I could barely get out of bed.
I valiantly smiled and joked through long days out at Longleat, cold, damp, evenings around the campfire and endless meals I really shouldn't have been eating, but truthfully, I'll need a fortnight to recover.
The only real mishap came after we'd driven through the wonderful safari. After lunch (plastic hotdog with chemical mustard) I just hit the "spoonie wall". I couldn't walk another step and simply had to lie down. Easier said than done in the middle of a several hundred acre estate where, sadly, Lord Bath was not available to offer me a bed for an hour or two. (Though I believe his track record may have made that a rather dangerous proposition in itself.)
We decided that I would get a cup of reviving tea in the beautiful orangery cafe, then find a quiet corner of the "secret garden" for a nap. Dave would take the boys to see the birds of prey. A little embarrassing certainly, but far better than fainting in the middle of the maze. The queue for tea was mighty and I looked at the counter in defeated-dismay. In the end I just collapsed at a cafe table in the beautiful rose garden and fell asleep on my arms, drugged by the roses warming the air with heady scent. After a while a kind waitress walked past and I swallowed my pride to ask if she could get me a drink. I'm disabled, I explained and just couldn't manage the queue.
With my tan and lack of any visible aids, I don't look at all disabled, but I guess falling asleep at the table gave her a clue.
After I'd had a drink, I shuffled painfully towards the beautiful walled gardens and curled up in a corner, the latest display for tourists to gawk and giggle at. I waited for Dave to come back with the boys. And waited. And waited. They just didn't show up! What could I do? I couldn't possibly walk anywhere to go and find them. I wondered if Longleat had a mobility centre? Could I get a wheelchair for the rest of the day? My phone was with Dave, so I couldn't call him, I just had to wait and hope they found me in the end.
It's a scary prospect. Being too "vulnerable" to help myself, suddenly removed from the safety of Dave to help me through, unsure what I'd do or how on earth I would alert anyone to my distress. I went over the options in my mind, frantically trying to form a plan. By this stage, Dave and the boys had been gone for over two hours. The sun was burning me, I was getting weaker. (I may have been cursing myself a little too, for being too proud to even carry a backup folding walking stick...)
I decided there was nothing for it but to throw myself on the mercy of a passing tourist, ask them to get a member of staff and try to arrange some kind of wheelchair (and someone to push it!) until we found my family. Just as I was plucking up my courage to call across the lawns to some random stranger, Dave appeared around the corner with two exhausted little boys. We're still not quite sure how we managed to miss each other - they'd been looking for me for over an hour, but I can't tell you how relieved I was to see them.
This is not the first time I've been stranded in the middle of a theme-park/zoo/play centre wondering why on earth I think I can do these things. Invariably, Dave ends up carrying me back to the car (we pretend it's a game for the kids) or I'm on my own with the boys and feel that same sense of panic - it's terrifying. "There's no such word as can't" is becoming patently less true as the years go by, but I'm too stubborn to admit it.
I cringe when I hear Dave tell the boys "Mummy just needs a little rest" or "Mummy's going to have a quiet day today" as he persuades them boys need boy-time and really, it's nothing to do with Mummy's "poorly" at all.
Still, despite my rather gloomy account, I made it, we had fun when we could, and I'm back in one piece.
I got home to my DLA decision. I'd sent my application off a month or two ago and knew the letter would probably be waiting for me when I got back. Sure enough, there was a brown envelope lurking amongst the flyers from Virgin media and the take-away menus. The brown envelope. Those few square inches of terror that makes any disabled person quake now.
Guess what? I'm fine!! Don't need any help at all, apparently. No help with Longleat-mobility at all. No help with care, nothing. The "reasons" quoted in the rejection letter were exactly the kind of kafka-esque nonsense we have come to expect from the DWP. They bore no relation whatsoever to the answers I'd given on my form - so much so that you'd laugh if it wasn't so depressing.
I have a month to appeal, they say. Great. Yet another hoop to jump through, more forms to fill in, more letters to write. Anyone who's not quite sure why I might need DLA can read my profile on the right hand side of this blog. Yet I don't qualify according to the "decision maker" It makes you wonder who does doesn't it?
We are not too despondent. It's incredibly common for people with long term variable conditions to be excluded from the welfare system. But I do feel a little grubby.
Somehow, being turned down initially makes me feel like a fraud for appealing. It's exactly how those in charge of the process hope I will feel. They know many won't bother. If I could possibly survive any more without acknowledging that my disability is becoming more intrusive, I wouldn't bother either. If I was wealthy, I certainly wouldn't bother to demean myself and my pride, begging for a paltry few quid a month.
But I'm not. And I need a little more help than I used to. It shouldn't really be a big deal should it? I have a severe form of a diagnosed long term condition with a clear, degenerative pathology. People like me are clearly going to need a little help if we're lucky enough to dodge death as adroitly as I have.
Still, I'm not wealthy, and I'm not as able as I used to be and Dave is caring for me more and more, so I shall just have to swallow that huge ball of pride and hold out my begging bowl. I suppose the only silver lining is that the system is now working exactly as those who designed it hoped it would.