Sitting in the Mud

This weekend I tried to go to a music festival for the first time since beginning to use the wheelchair. And this happened.




Friday:

Ground beginning to be muddy on arrival but navigable in the chair on arrival and departure.

Went to the Catton stage tent, and were helpfully shown to the disabled ‘safe area’ by a steward who was marking it out by spraying paint on the floor. Four or five of us in chairs, plus our carers who set up their chairs (trust me, if you had been pushing me around a muddy field all day, you too would need to sit down!).  For most of the afternoon/early evening the tent wasn’t packed and the safe area worked well, even though the lines on the ground were hard to see.

Then it was time for Chumabawumba followed by Oysterband - and everything became quite seriously unpleasant for the rest of the evening. People wanted to form a mosh pit, and to get closer to the stage with their chairs. “Can’t you move forward a bit?” was the most polite comment we got. The lines on the floor were totally impossible to see now - no barriers were erected - and not for the whole evening was any steward anywhere near us to see that the safe area was maintained. Nor was a clear path out of the tent created, so trips to the loo were nigh on impossible.

We ended up with the chairs only inches apart (which besides being rather unpleasantly claustrophobic I suspect breaches Health and Safety Guidelines) and we and our carers constantly fending off people who wanted to come into the safe area ‘because there’s a space’ or to go through it (walking on our possessions) rather than the few extra steps it would have taken them to walk round. Our requests to have the space respected were met with everything from martyred sighs and eye-rolling (you know, the ‘sheesh, better humour the bitchy loonies in wheelchairs’ kind?) to aggression and swearing. One highly pleasant individual even tried to climb over our chairs.  It was deeply shocking and very very intimidating.

Oh, and I have a newsflash for the people who behaved like this and then cheered when Wagner at the Opera was played.  Guess what other groups besides Jews were persecuted by the Nazis? Your fake social consciences are showing, you ignorant  hypocritical arseholes.

I’m not really sure how you go about explaining to someone who doesn’t understand why disabled people need a safe area why we do, but I’ll have a go.  Remember when you were little, and being in a crowd was like being surrounded by giant strangers who randomly bump into you and  buffet you with handbags, briefcases and the like, at head height?  Well imagine that...and now imagine your ankles are tied together. Congratulations, you are now in a wheelchair in a crowd. Think it’s much fun?

Saturday

Ground far muddier today, very hard for Anth to push me about the field in the chair.  By the time we leave, it’s almost impossible for him to do so, we have to detour a lot from the main areas, and fairly often pull the chair backwards rather than pushing.  Nothing has been put down on any part of the ground to make it more navigable - not sawdust, not carpet, not bark chips, not roll-out mesh.

Today people with wheelchairs don’t even try to set up in the Catton Tent ‘safe area’ - we just park quite near to one of the marquee doors. This is a lot pleasanter, and for most of the time, it’s possible to get the chair in and out of the tent.  It’s so hard to navigate outside that we just stay in here and listen to some great music. Oh, and I buy a very silly hat.

Then I make the mistake of trying to go for a wee.

By now, people have been allowed to set up chairs behind us, so getting the wheelchair out would involve asking two rows of people if they would mind disrupting themselves. Bearing in mind that, how very difficult getting the chair through the mud is, and the fact that the disabled portaloo (yes, there’s always ever only one - didn’t you know people stop having gender when they start to use a wheelchair?) is fairly close, I decide I’ll just try to make the short walk using my stick.

It’s not easy, my balance issues are bad enough when I’m not ploughing through mud, and I arrive just to see a young boy run into the one disabled loo and shut and lock the door. I’m very shaky now, and I lean on my stick and wait.  Five minutes pass, someone else comes along and tries the door.  “Occupied” I say.  “I’m going to just sit down on the floor to wait soon.”  Which sadly is true, but the queue for the ladies’ loos next to me seems to take it as ‘making a fuss’.

“You do know there are other toilets?” one woman ‘helpfully’ points out to me, indicating the normal portaloos, up their mud-covered set of steps. The ones that might as well be at the top of Scafell Pike, for me.

I point out to her that they are up steps, why does she think I am leaning on a walking stick?  She makes a sound rather like ‘tcha’ and turns her head.

Two other ladies very very kindly ask if I would like them to try to lift me up the steps, so that I can go to the loo before I wet myself.  I thank them, but say I don’t think it would be a good idea to try. I don’t add the reason - which is that them trying could easily cause me to wet myself - because I think that would have embarrassed them as well as me. It’s also not a good idea for untrained people to try lifting another person - in wet and muddy conditions the chance of such an attempt resulting in an injury to someone are fairly high, and I’m no lightweight.  I also don’t want to be manhandled by complete strangers, however blessedly kind they are (and those ladies  were).

“Well if you don’t want anyone to help you, stop making such a fuss!” snaps the 'nice' lady who pointed out the inaccessible loos to me  earlier.

The disabled loo remains occupied and locked.  I sit down on the floor in the mud, not just because my legs and arms are shaking too much to stand, but because I now am beginning to wet myself a little and it’s easier to disguise that sitting down than standing up. The entire queue looks embarrassed. Half of it also looks disgusted with me.

An adult woman arrives to tap on the door, asking if the occupant is ‘all right’.  I ask if she can get them to come out of the disabled toilet, as there is only one and the kid has been in there ten minutes.  I am glared at. “He is very sick, the medic sent him to go in there.”  “Well I’m sorry, but the medic shouldn’t have done that. This is for people who have limited mobility and cannot pee anywhere else. I’ve been waiting here ten minutes, I’ve had to sit on the floor, and I need them to come out or I will have to pee here in the mud.”

Looks of shock and disgust. It’s a sick child. How can I even ask such a thing? I repeat that I am sorry if anyone’s child is sick, but the only disabled loo is not an extension of the medic tent.

One of the medics arrives.  He too is absolutely disgusted with ‘my attitude’. Again I am told how very seriously ill this child is. Which to my mind begs the question - if so, why was the child sent unaccompanied to lock himself in any toilet, where he could have passed out and/or choked on his own vomit? Where no one checked up on him for ten minutes?

Eventually though, they do persuade the boy to unlock the door and come out.  I climb up my stick to standing - no, neither the medic nor the woman with the boy offered to help me - and I ask the medic why he sent someone to occupy the only disabled loo.  “Go and have this pee you apparently want so badly, and we’ll have this conversation when you come out love” he says. “We certainly will,” I say.  But when I come out again, he has vanished as has his patient and the woman (who was apparently ‘not his mother’).

(I cleared up the child’s vomit in there, by the way. Neither the medic nor the woman with the child had seemed to think they should offer to do so.)

Then I make my way back in tears to the Catton tent, and we decide to simply come home. I’m far too distressed to stay and watch Martin Simpson, who was one of the main reasons for buying tickets.  We speak to a steward on the way out of the tent, and he’s horrified - but can’t do anything.

I speak to one of the organising team at the main gate as we leave the site. Again, horrified but insistent there is nothing she can do. “What do you want me to do about it?” As a former professional event organiser, I make several suggestions:

“Ideally, have more than one disabled toilet.”  Too expensive.

“You could put a steward nearby to check the disabled loo is used properly”  No, she can’t, she hasn’t enough volunteers to ‘send one to just police the disabled toilet’.

“All right, I’ll volunteer. Give me a hi-vi and I’ll do the job” No, she can’t do that, we’ve paid for tickets.  (One of which apparently we needn’t have paid for, because it turns out in conversation with other disabled attendees that if you ring up and ask you can bring a carer free. But they don’t advertise that  anywhere, so unless you have telepathic powers, there’s no way to find out in advance).

“You could put an extra notice up on the toilet, asking your customers to please not use the disabled loo if they are not disabled, as you have had complaints.  You could also ask in the programme next time for people to be aware there are disabled attending and ask for some basic compassion and courtesy”.  She doesn’t seem to think this would help (and frankly, having experienced the behaviour of some people at this festival, neither do I).

“And you could tell the medics they must not do this again.  If they want a private area for people who need to vomit, tell them to bring a toilet tent.” If I can describe the medic in question, she says, she will do this. I describe as best I can someone I saw while distressed and sitting in the mud. Eventually, she agrees to go and have a word with all the medics.

Once again, I am subject to the ‘but the poor child’ argument.  “What about the child who was ill? Was he supposed to just vomit in the field?”  Well, no. Presumably he could have vomited into a bucket in the medic tent. Or - being about a quarter my weight - been carried to the normal loos.  I tell her I am sorry and feel for any child who is ill. BUT. A child needing to throw up does not alter one very basic fact:  if i want to pee at this festival, my choices are the disabled loo or the open air in the middle of the field. Which, I ask, would she prefer?  She looks mildly revolted. Yes, that is a nasty, disgusting choice to ask someone to make.

Isn’t it?

(Or perhaps I was just supposed to quietly piss myself? After all, what’s a disabled woman thinking, expecting any right to dignity, eh?)

Mentally Yours

Physical or mental? A perspective on chronic fatigue syndrome

is an excellent paper.  I found it helpful because it looks at why the 'mental or physical' diagnosis matters, as things stand today in the world of medicine, benefits, insurance and public perception.  I am someone who absolutely believes the mind and body are linked and affect one another. I accept that all chronic illnesses are likely to have - or to create - psychological problems in addition to physical ones. Yet I also object to my physical illness being misdiagnosed as purely a mental one.

The following struck me particularly:




"Many patients with CFS mention that they were under considerable stress at the time that they fell ill. But so are people who have heart attacks. The presence of stress leading up to a heart attack does not result in heart attacks bring classified as mental illnesses."




I think most people will know someone close-ish to them who has suffered a heart attack, and am moved to ask one simple question: how many of those people would be happy if after a stress-induced heart attack, their loved one were offered ONLY psychiatric treatment? 


How happy would you be?

'D' is for...near Despair

I have often thought that I would only take up writing here again if provoked by some hopeful development, or some great anger.  But today, I am too deeply sad to even be angry. And hope seems so distant as to be a joke.


In this week when I watched the beginning of the end of the NHS, in this year when government attacks on the disabled have bewildered and terrified sick people, some to the point of suicide, now comes the news that yet another severe ME sufferer, Emily Collingridge,  has died.  And as you will see from her last words, below, she died without any hope at all that our health services and government were working to find out why she was in constant pain, fed by tubes, unable some days to bear even the slightest contact with others.


This isn't a long post from me, because I want to pass on Emily's own words, as her family have asked people to.  And because, frankly, it's hard to have anything to say after you have read them.  Please read them. Please think about them.  If they make you unbearably sad, furiously angry...GOOD.  Hold onto that and pass her words on - to your MP, to friends, to the press, to anyone who says ME sufferers should improve their mental attitudes and take a bit of graded exercise...

Emily was thirty. She was...fucking...thirty. Here are the words she left us. Please read them. Then imagine this was your life, or the life of someone you loved. A life full of pain and a death without hope of cure. I hope it makes you cry.  I hope it makes you angry. Most of all, I hope it makes you act.

Emily’s Appeal

It has been said that the following is hard to read. But that is all we ask you to do: to read it, to forward/re-post it and to pledge your support for the many thousands of people like Emily who have to LIVE it.

“My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME.

ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease.

My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now – it’s like that every single day. After all these years I still struggle to understand how it’s possible to feel so ill so relentlessly.

My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor’s visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I’ll go mad with the suffering. Of course it can also be as bad as this for no particular reason – and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music – the list is long. ME has made my body an agonising prison.

My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I’m on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable – this despite pain levels so high that I hallucinate.

I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration.

Many days I feel utter despair.

But, unlike some sufferers, over the long years in which I’ve had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going.

My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me – severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for – but I don’t. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.

And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:

Please put an end to the abandonment of people with severe ME and give us all real reason to hope.”