Tag: mental illness

It’s Not the Destination, It’s the Journey- An Imaginary Parents Evening.

Today I managed to go on some unescorted leave. It was sunny and subsaharan on the unit because the heating seems to be permanently on full. To say I was desperate to get out is an understatement and in my rush of excitement to go outside I forgot that I don’t know the local area at all. So armed with a very tiny map that I didn’t want to admit I couldn’t read; off I went. A member of staff had marked onto the map in red felt tip a short and simple route to the church and back.

It turns out that there are two churches in the vicinity of the hospital-and of course I initially went to the wrong one which was in completely the wrong direction. I asked for directions from an elderly lady who, after telling me how brave I am for:
a) being blind
b) existing
told me to follow the road until I came across a ‘horsey smell’. Sadly she declined my request for conventional directions. So myself and Noodle stumbled around trying to follow our noses to a smell that never came.

It took about an hour for me to find myself stuck in the graveyard of the church I had initially been looking for. Unable to find my way out of said graveyard and no one live to ask for directions I stumbled into what I thought was a big green field. There appeared to be dogs running around so I let Noodle go for a frolic while I tried to work out where we were and how we could get back.

Splash. A shallow river made itself known and Noodle in all her wisdom decided to swim alongside me as I paced the bank. Still lost I asked a woman for directions to ‘the school’ -which would then point me in the right direction for the unit. She decided to walk me there instead.

“Is there anything on at the school?” She asked as we walked.
“Yeah…” I say accidentally, having just realised that we are at the wrong school and that I’m completely lost. Why did this village insist on having two of everything?
“What’s on?” She asked.
“Parents evening.” I responded. I really don’t know why but that was the first thought in my head. I knew instantly how stupid this sounded but felt too paralysed with awkwardness to do anything. I felt like I had dived into a shark tank of social tension.
“On a bank holiday?” She asked with a slight tone of disbelief, clearly thinking that I am deranged or mourning some imaginary child who attended this school.
I mumbled something along the lines of “yes isn’t it ridiculous” as I kicked myself silently for putting myself in this mess. She eventually left me at the derelict school.

I must have walked miles around the village today because I have never been so completely lost in my life. But I couldn’t have been happier.

My life is bonkers sometimes but I do completely love it. There are many things worse than being lost on a sunny day with my furry colleague. Even if she does decide to go for a dive. I really do need to work on the awkwardness thing though…

I suppose I could use a cheesy recovery quote at this point: “It’s not the destination it’s the journey” etcetera etcetera. But don’t worry. I won’t.


BRAIN BLEED. An Unwanted Hospital Adventure for the Very Anxious.

During a dissociative episode this week I hit my head. It was really frightening and once the episode had died down I found myself very, very concussed. The incident happened between six and seven that evening and by half ten the symptoms still hadn’t calmed down so the on call doctor was called out to the unit. The poor Doctor was a little confused over the event and her assessment was complicated by the fact that I do not remember anything from any of my dissociative spells. Therefore it was very hard to tell the severity of my head injury. Likewise my eyes move constantly, making the eye checks very hard to carry out. I’m never an easy patient! After doing the best she could of an examination she left the room to call A&E to get advice. It was nurse *Stan who broke the news- I had to go to A&E if I had been sick more than once… And I had been sick for the second time during the ten minutes that Stan and the doctor had been talking. Cursing the wall in question and very concussed- off to A&E I went. 

Having been promised by Stan that the trip would be just ‘in and out’ I was not overly surprised to find myself in a very slow moving waiting room. Because I am under eighteen I had to be accompanied by a member of staff from *Cheery Lodge so it was *Emma who had the job of trying to keep me awake during the wait. Suffering with fatigue at the best of times; it was way past my bedtime and the bump was making me yawn non-stop. Myself and Noodle seized a bariatric chair at the back of the waiting room because it was easily wide enough for both of us to sit side by side. I don’t know what it is about general hospitals but they make Noodle very protective, refusing to move out of arms reach of me. Of course I don’t mind this at all, feeling vulnerable her care is very much appreciated.

At around 1am; myself, Emma and Noodle were put into a side room to wait for a doctor. By this point I was beyond exhausted and feeling the effects of not being given my medication. I was certainly not impressed when a very peculiar junior doctor appeared. First he asked me to follow with my eyes a white pen. Against the white wall this would be impossible for me on the best of days. Confused- he decided to move on to questioning my psychiatric history. At one point myself and Emma were convinced he was going to try and refer me for an inpatient assessment- despite us both telling him repeatedly that I am already a patient on a psych unit. He, like the doctor on call, disappeared to consult somebody else on the medicinal chain. 

On returning he asked to see Emma’s papers for me as if I was some kind of antique he was thinking of buying. A photocopy of my drugs chart and details of my illnesses. 

“What kind of OCD is it?” He asked. A question I dread.

“Erm it’s mostly hygiene and health concern based. But other ruminations and fixations too.” I have learned my lines. It was because I told him this quite so clearly that I was surprised at what he said next.

“Right we are going to get you into a CT scan as there is a possibility you may have a brain bleed.” 

“It could be a brain bleed making the hallucinations worse.”

Brain bleed.

Brain bleed.

Brain bleed.

He honestly then continued to use the phrase ‘brain bleed’ at least six times. Leaving me… Anxious. Very much so. I held onto the belief that if he really thought I was going to turn into a gory waterfall he would have done more checks and probably kept an eye on me… Or possibly have offered me a drink of water.

The CT scan was carried out at about 3am- an odd experience which made me feel like I was in some kind of verticle belidrome with the cylindrical spinning and whirring. It was over very quickly but sadly the results took much longer to arrive, leaving poor Emma to reassure me during the wait again and again that it is unlikely that I would have a brain bleed and, yes, CT scans are 100% safe. She was at the stage of pulling up online evidence when the results came through. My brain was 100% ay-okay! Relief hit me like a tidal wave- if nothing else I was just overjoyed. To be allowed to go to sleep. Myself, Emma and a loudly snoring Noodle headed back to Cheery Lodge.

“In and out?!” I asked Stan as we shuffled through reception at 4am. As way of a commiseration he told me he wouldn’t wake me up at 7am that morning. Of course it is much better to be safe than sorry- but I was absolutely exhausted the following day! Medical staff- if you are treating patients with anxiety disorders please be careful of what you say and how you phrase things! 


Angels Can Have Four Paws

I thought I would share this post with UpsideDownChronicles readers as well as people who know me from elsewhere. It’s the next day and I have slept the majority of the day and have lots of aches and pains. Nothing more than what could be expected though. Noodle has waited for me to play all day. She gives me hugs and licks my feet as I sleep; she is never impatient with me. We had a play at lunchtime and she got a good groom and a game of fetch. Now she is sleeping next to me as we watch Mean Girls for what must be the 6th time this week… Night! 

Today I am grateful for my furry colleague and partner in crime. How can this paw perfect little guide dog switch roles so fast? In church she was a guiding dream- she even got blessed. But this evening I had two major dissociation episodes and she turned into my own furry superhero! There was a short time when I came round and it looked like the worst of it was over, so the staff propped the door open with a chair and went to get me a drink. The gremlin gripped me again while they were gone and the last thing I remember was the sound of her scrabbling to get out, under the chair, to find help. If I was fine she would never dream of doing this, It’s against all her training but she knows she must do it if I am going to get help. She went straight to staff and brought them to me. Things could have got so much worse if she hadn’t.

The staff tried to make her calm down but she wouldn’t stop licking and licking me, putting her paws on me. She wanted me back! A member of staff took her out but still she wouldn’t calm. Had I been able I would have told staff that this was pointless- she only calms when she knows I’m supported and safe. Then it died and I was finally okay and she sunk straight back into being a beautifully behaved guide dog. No more craziness from either of us.

Now I’m as tired as if I ran a marathon- but if I stand up she will stand with me. I will slip a finger inside her collar and she will help me. One step at a time. I can’t express how thankful I am to have her in my life right now. I couldn’t do it without her and I certainly don’t say it enough. The nurses are now calling her ‘the super dog’. Anyway this has taken like an hour and a half to type but I just wanted to say thank you to anyone who supports guide dogs in any way. Every single guide dog is a super hero, they are our eyes and so much more. It’s incredible. I am also just so thankful that my little guide dog decided ophthalmology wasn’t enough, and took on the neurological too. Guide Dog of the Year Beyond the Call of Duty? I think it was very much deserved. Who knew angels could have four paws ey?

noodle and human snuggling
Old photo- “If I lay here, if i just lay here, would you lie with me and just forget the world”

To Anyone Considering Working with Mentally Ill Young People

Dear Doctor, Psychiatrist, Occupational Therapist, Nurse, Manager, Health Care Assistant. Or the soon-to-be any of the above.

So you want to work with young people with mental health problems? Or maybe you already do. Welcome to the wonderful world of child and adolescent mental health services.

You are likely to be, or have been, met by a group of young people. Some of whom will be kind and nice to you and some of whom will not. But don’t rule any of them out just yet. Because even the nicest, kindest and friendliest person on this ward will have days where their illness gets in the way of being just that. Mental illness blocks the light and makes pleasantries difficult sometimes. If you are boasting that your experience is all based upon having survived being a teenager yourself- stop. We are ‘average teenagers’ minus the ability to ‘get it together’. We are average teenagers with acute and chronic illness that -were it anywhere else in the body- would lead to hospital tubes and wires. Today the young people are ignoring you, but please don’t take it personally. They aren’t ignoring you- they’re trying to ignore the demons you can’t see. Some illnesses can’t be helped by tubes and wires.

You’re going to work long hours with, I won’t lie, people who will sometimes wish you didn’t bother. You’re an OT pushing a new group, a psychiatrist cutting a medication, a nurse saying no to leave and a HCA pushing dinner. You will be sworn at. You will be insulted. But we need you to keep trying because you can bet that of any group of kids we are the ones who have seen it all. Collectively we’ve had abusers, attackers, family issues, health issues- the works. And if nothing else we have stand alone mental health issues that have bulldozed our lives for a bit. Don’t expect to be told you are doing a good job everyday- but aim to be told you’ve done a good job when your patient goes their own way. You can’t cure us all but you can help us open the box, rearrange the pieces and fill in the gaps.

I wouldn’t fancy your chances in a debate. Especially over issues like suicide. We need you to keep us safe until we can do it for ourselves. One day at a time. If you say something wrong, apologise. If you’re going ‘tough love’ on us don’t be mad when we return it. We’re unreasonable, unlogical and sometimes painfully understanding. It’s you we need to annoy us but not hurt us. Our illnesses are consuming. We need to know that when we shout you will still be back in the morning. We need you to tell us that you are going to do your damnedest to make it okay. If you can’t do this, then you’re in the wrong job. 

… So… Are you in or out? 

I Got Reported Missing

I don’t think when *Cheery Lodge accepted a blind kid and her dog that they expected the duo to be a major abscondssion risk. But- always smashing assumptions, I proved them wrong.

My escape wasn’t cleverly planned, or even remotely smart. In fact I didn’t even escape- I was already out on leave. I don’t want to go into the details of why I ran but something had snapped inside of me.

I’ve talked about my problems with Dissociation before, but at the moment it has hit an all time high. I’m finding I lose a lot of time with no memory of what I have done. I drift away and it is incredibly hard to drift back. I’m lucky that my psychiatrist is really on the ball with this kind of thing, he is helping me understand why it happens and helping me get to a more stable place mentally. This will hopefully limit it’s effect on me. Annoyingly I can’t be discharged from hospital until my mind is fully and consciously in control of my body at all times.

It’s because of this that I don’t remember the build up. I don’t remember how fast I ran or if people were shouting me. It’s like when the cinema screen fades to black. When I came back to my body I had no idea where I was apart from it being green and very, very quiet. My phone was dead and even the ever-knowing Noodle had no idea where we were.

Eventually I found what sounded like a sports field. Cars were coming in and out of a concrete area and the sound of whistles and footballs being kicked was nearby.

“Are you okay?” Says a woman.

“No” I reply in tears. “I’ve run away from a hospital”

“What kind of hospital? Who’s dog is this? Where’s the dog from?” She suddenly developed a harsh and panicked tone.

“I can’t see very well.” I mumbled. And then I ran.

Finally I found my way to a road where, what are the chances, the unit manager caught sight of me from her car on her way home. The police had been out looking for me and staff from the unit had been driving round the area all afternoon. It was accepted that the reason I hadn’t been found was that I was in some kind of woodland away from any streets or roads.

When I turned my phone on I had the following text:

a text message reads not protectively marked. you have been reported missing. please ring the police on 101 to let us know you are ok

I also had a similar answer phone message. For some reason I didn’t think the police did things like message missing people. ‘Reported missing’ sounds so scary, it shocked me to read. To me I had just been lost. But I suppose my lost is everyone else’s missing patient.

Turns out that the lady I spoke to works at the local vets practice. They were contacted the following day about getting Noodle a routine check up and the receptionist said that one of the partners had mentioned seeing a distressed girl and a Labrador that could have been a guide dog. It makes me laugh that this made worthy news to tell her colleagues but not the local police!

My disappearance was in no way as dramatic as some of the ones I have witnessed whilst in hospital. I just got lost. I’ve been put on a higher observation level and I’m not allowed out without a member of staff. I feel quite sad about this, but I guess I’m just too ill at the moment.

I’m not proud of that day. But this blog is my story, and I want people to know just how powerful the brain is and how a problem in the brain can affect people.

‘Metaphorically Working for DynoRod Without a Toolkit’

“No negativity” Karen* says for the fifth time this afternoon. She is doling out post it notes onto the two tables at which we are sitting. She disappears to the lounge, where most of the patients still remain, to remind staff that no fun was to be permitted whilst the group was running. “Let’s make them wish they were here” she whispers to us before closing the door on the group therapy truants.

There are only four of us in the group, it is half term and I do not fancy a ‘Solution Based’ workshop. But I was woken at 8am in order to ‘be on track’ for this 2pm group and not having fun in the lounge sounded even less appetising. Every time Karen barks ‘No Negativity’ I push back my personal tidal wave of hopelessness with copious amounts of tea. The tide thrashing makes me cynical.

“I don’t want to hear about problems!” Karen, the psychologist for the entire unit, announces. In my head are many retorts, most around the fact she is in the wrong career if she is going for a negativity boycott. “This is about SOLUTIONS!” She enthuses.

Task one is working in teams to shout out ‘well done’ in as many different ways as we could. ‘Good job old chap’, ‘excellent’, ‘spiffing’: we had them all. On the compulsory group flip chart Karen listed all of our efforts. And then Karen began explaining to us, for a much longer time than necessary, how the best solution to most things is finding something that works and keeping doing it.

*Unloads barrels of scepticism*

I would say the major flaw in this theory, though I’m no psychologist myself, is that if you don’t have anything that works in the first place you’re stuffed. Considering we are all under eighteens being treated for mental illness, I’d say ‘can do’ strategies were not going to be in abundance for Karen’s niche. We find ourselves metaphorically working for DynoRod (famous sewage problem busters) without a toolkit. To find such solutions I imagine that one would presumably have to go soul searching in Thailand or gain some renewed perspective on life whilst working for a charity on minimum wage.  Karen left us to ponder this issue for a while before she suggested that if you haven’t found anything that helps you, you could ask someone else what helps them..

So in more metaphors:

Everyone has a set of Alan keys lying about somewhere. Most people have no idea which key fits what, but that something you own, somewhere in the house, requires them. If your new bike needs it’s seat heightening you try all your keys but none fit. You know from your own attempts that the key needed would be somewhere between the sizes you’ve got. What I think the message of the group was is that your Alan keys are your solutions and sometimes the ready-made solutions you have won’t fit into every problem. However, go ask your neighbour if you can borrow their useless bunch of Alan keys and you might find the answer.

I guess the theory is that a solution can be found in any problem if you just ask enough people. Which is true, I suppose. At the end of the session Karen asked for feedback.

“But remember we don’t deal with NEGATIVES or PROBLEMS.” She says as she hands out the sticky notes. What a good criteria to give out when asking for a critique!

My Furry Colleague and Her Sneeze of Needing Back Up

Well Noodle has done it again. Worked her way as an assistance dog into yet another hospital! Regular readers will remember the first part of the saga when I battled to keep her with me in a Paediatrics ward. You can read ‘How to Smuggle a Dog into a Hospital’ here.

We had a very difficult first fortnight in my new unit, questions and issues rained down on myself and my furry colleague near constantly. The subsequent flood filled me with hate for the whole hospital and very nearly washed me out the door. But we got through it. We learnt to groom before seeing the staff who will comment on Noodle’s shedding winter coat and we compromised on many an issue.

On admission I told the hospital about Noodle’s magic powers. But I don’t think they really believed that the little dog (rather shabby looking after a seven hour drive) could do all these things I was telling them.

The first time it happened they thought it was a fluke.
The second time they thought it was odd.
The third, they thought it was lucky.
The fourth, they realised that she is amazing.

And then it clicked. When Noodle watches me go into crisis, often dangerous or disabling for me, she will get out of the room. In fact sometimes she predicts it and won’t go in to the room at all. She will then do everything she can to get human assistance for me. In a ward like my current one there are many fire doors, so she is limited to pacing and barking, but at my old open plan unit she could run straight to the office and then straight back to me. Staff find her at the other side of a door and she greets them with what I have coined ‘The Sneeze of Needing Back Up’. It is distinctively loud and repeated over and over. Head up, head down, head up, head down. In all honesty it does look like the dog is trying to tell you she needs to place an urgent last minute bid on EBay. Either that or she has been given some sort of amphetamine.

Naturally, the incoming member of staff is usually slightly surprised at being so enthusiastically greeted by a Guide Dog who is usually the definition of cool, calm and reserved. On realising that I am not with her they begin checking for me everywhere, but I will always be behind the door that the dog runs to.

I have no idea what I would do without her. She’s learnt her technique over time. It has evolved as my health has deteriorated. She has done ambulances, she’s done three hospitals AND survived my final year of secondary school. I am beginning to wonder if there is anything this little dog can’t do?!


Stop the Clock

Not beating about the bush- this is a miserable blog post. I wrote it yesterday when I was freaking out about OCD and recovery and TIME. Time before I have to go into adult inpatient services (which I don’t want to do) and time I need to be getting better in. But I don’t seem to know how to do that… Anyway: here’s the poem.

Stop The Clock
Time is sneaking away from me.
Six months been and gone.
Six months of doors with windows.
And six months of pills in pretty white pots.
Stop the clock- I need to take stock.

Time is pulling me along.
The days are carved into six slices where I must eat and drink,
The place I want to run away from.
But that I hope will save me.
Before I sink.

Time is dragging me down.
Soon I’ll be an adult
Support being switched.
So I am a case number in other people’s books.
If I don’t hurry; In the psych wards where I’m told old men give you funny looks.
It’s the adult services which make my twitter friend’s despair.
Timelines telling tales of a care service without care.
Stop the clock- I need a rock.

Six months of trying.
Six months of fighting.
But my best just isn’t enough.
How can it be- when I’m still laden with all this stuff.
I’m pushing the pedals as hard as I can, Trying to make the damn thing go.
Go somewhere sunny.
Somewhere safe.
But the recovery car just won’t go.

They push my compulsions down like a game of whack-a-rat,
Causing sheer black distress to crash and shatter around me .
It’s torture as they squeeze and pinch at it.
But as the tide settles, the problems just pop up somewhere else.
I tell them “I’d take X symptom over Y“.
But they tell me it is a disease with which you cannot compromise.
“We will get it all. That’s our job.” The nurses say
Six months.
And I’m still waiting for ceasefire day.
The clock won’t stop – and I’m going to pop.

Time is running short.
How can we batter them all?
I’m pushing the pedals so hard.
But I’m scared that maybe it’s the motor that’s broken.
Stop the clock: because I can’t take another knock.


The World’s Worst Kidnap and I

It’s the second of February and finally, after being transferring unit ‘really soon’ since November, I am being moved from Southampton to Yorkshire. On climbing inside the private ambulance at dawn I discovered that I was being transported in what appeared to be a mobile padded cell. The floor to ceiling carpet and barred cage gave an amazingly authentic insane asylum on-the-go vibe. I hasten to add I was not travelling in the cage; though if I had there would at least have been the benefit of being able to face the same way that we were travelling.

It turns out that playing card games at dawn whilst rattling backwards down a motorway is pretty hard. All parties- myself, dog and occupational therapist were unimpressed at the early start. Myself and OT Supremo were travelling backwards with ambulance man Dave, who kept falling asleep in his seat, facing us. When he wasn’t asleep he was telling us about the bit of motorway we were on or beating us both at Uno.

“Is this how they transfer criminals?” I asked, about an hour and several games of uno in to the journey.
“Sometimes… But we’d have them in the cage with a lot more escorts.” Dave replied, as I wasn’t in the cage and had been told I was being transferred by the ‘secure’ service for petrol cost cutting benefits only, I began to feel more at ease.

At the service station a couple of hours later (and now in daylight) I realised that the vehicle looked to all the world like a white, rather grubby, transit van. This coupled with the soundproofed interior, cage and blacked out windows made me wonder if I was in fact involved in the world’s most ineffectual kidnap and whether I would actually ever get to Yorkshire. I decided that most hostages don’t merrily play card games with their abductors, so I was safe.

If given the choice on any long journey, one should always take an Occupational Therapist. The things they hold on their person on a daily basis is undeniably impressive. The OT Supremo I travelled with had in her handbag alone; a colouring book, a large assortment of pens, a decorative fabric heart to be customised, and a multilayer Tupperware box of nuts and seeds. All of which were put to good use on the journey.

Seven hours on, the van pulled up and we all jumped out lead by Brian the driver. With his clipboard in hand he went into a rather decrepit looking building, only to return five minutes later.
“I went in and said we’re here and they says that it was a unit for the deaf… So I think: ‘she’s blind’ and then they tell me that the outpatient bit is Nextdoor. So… I go to outpatient, but I says ‘we don’t need outpatient, we need inpatient’. So they gives me this address.” He recounts whilst gesturing to the mobile padded cell and clutching a street name on the back of a leaflet, clearly a bit perplexed.

“He’s good is Brian. Used to be a traffic cop. Driving’s in his blood.” Dave tells us when we are belted back in the van. “Isn’t that right Bri?!” He shouts through the tiny Perspex hatch which Brian had been silently driving behind all day. Brian then proceeded to sail past my new unit three times, whilst grumbling about not having the post code. It was on the third time that we saw *Cheery Lodge sail by that OT Supreme spoke up and got Brian and Dave to pull up and move my luggage inside.

And then I was there. In the appropriate region and with genuine northern people at last. However I was also saying goodbye to someone who helped me infinitely during my time at *Heron. Saying goodbye to OT Supremo was hard, and with her I said goodbye to my make-shift home for the last six months. And the future, in a brand new unit, seemed a whole lot scarier.