Category: CAMHS Inpatient Chronicles

A Non-Definitive List of Things I Will Not Take for Granted Once I Have Left Hospital

I have now been in CAMHS inpatient care for nine months: AKA far too long. I’m now approaching my discharge and, as it edges closer, I become more and more desperate to get out. The gripes and the grudges build up until I just have to make a list. So here it is.

A Non-Definitive List of Things I Will Not Take for Granted When I Have Left Hospital

  1. Being able to get a drink whenever I am thirsty and not having to wait for staff to be free to get it for me.
  2. Sleeping in when I am tired.
  3. Going to bed when I am sleepy.
  4. Being able to say that I have a headache without a doctor pouncing on me.
  5. Not being questioned on how I care for my dog.
  6. Having the option to be with people or not be with people.
  7. Not being surrounded by distressed people constantly.
  8. Not suffering the horrible noise of the panic alarms which seems to change pitch as you move your head.
  9. Absence of people playing ‘devils advocate’ every time I just want to have a little grumble.
  10. Choosing who I spend my time with.
  11. Going out when I want
  12. Going where I want
  13. Singing at the top of my voice
  14. Going to College
  15. Being with friends
  16. Not being alone
  17. Internet access
  18. Social media support
  19. Independence
  20. Food which isn’t from a silver tray
  21. Privacy
  22. Organisation
  23. The power to change the central heating temperature
  24. Not being observed
  25. Not having an ever changing conveyor belt of staff in charge of my care
  26. Having more than one 16th of control over the television remote
  27. Watching soaps without people moaning
  28. Long dog walks to nowhere in particular
  29. Loud music
  30. Laughter
  31. Doors that aren’t locked
  32. Being able to go and see people
  33. Being stable enough to make plans with more than a 60% chance of it actually being carried out.
  34. Gyms and swims!
  35. Fresh air
  36. Not having visiting times to stick to.
  37. No ‘compulsory’ workshops to go to.
  38. Watching DVDs rated above a U
  39. Not being woken up during night observations (they turn the lights on once an hour)
  40. Not being in hospital!

I am currently camping in a coffee shop making my time off the unit last as long as I can!

If you have been in hospital, what will you never take for granted again?  

Bollocks to BPD

Diagnosis ain’t easy.

I first heard of Borderline Personality Disorder (BPD) at Heron. The psychiatrist there seemed to be trying to fill a ward quota of 25% of female patients being diagnosed with BPD. I wasn’t in that percent.

The next time I heard it I was sitting in my CPA meeting for professionals. My new psychiatrist reeled off my conditions and then the letters- B.P.D. After the meeting was over and myself and my key nurse were on our victory lap around the village I asked if she’d heard it too. She wasn’t sure.

I asked for confirmation when I saw the doctor next. He quickly drew a grid with numbers and the disorders I have come to know. Then there it was- BPD. He said something about how this is what he suspects my problem lies within- my Jabberwocky to fight.

“Personality disorders have a stigma to them.” He added. “But don’t worry, it’s not the one serial killers have.”

Looking it up on the Internet isn’t pleasant. People with BPD were clingy and unstable. All the stories I could find were negative. ‘WHERE ARE THE REAL PEOPLE?!’ I found myself mentally screaming. And I’m ashamed to say I didn’t want to make myself one of the few who spoke up. The stigma seemed huge. But if no one speaks up, who else will be scared into silence by this monster? I tentatively took my first move with my poem borderline and now this.

To make matters worse in my quest for information, symptoms listed on every website I searched seemed increasingly vague or scary. Out of desperation I hit the books and surfaced with “Sometimes I Act Crazy“. Which gave me the broadest picture of the disorder and those living with it. I would highly recommend it for anyone else scared away by the Internet.

I think the description of BPD on rethink is the best:

  • “Borderline personality disorder (BPD) can mean that you are prone to strong emotions, mood swings and feelings you can’t cope with easily and may feel distressed a lot of the time.
  • Around 1 in 100 people have BPD.
  • There may be different reasons why someone develops BPD.
  • There are a number of different approaches to treating BPD, most of which include different types of one-to-one and group talking therapies.
  • Complications can arise if you have BPD, including problems with substance misuse and self-harm.”

It’s still vague; but every warrior is different. The thing with mental illness diagnosis is that it says more about your past than your future. My brain developed a little different. I see and hear things you can’t. My moods swing in ways you can’t predict. But whatever it says about me now, or me then, I am going to have CONQUERED my Jabberwocky soon. Just you wait. It doesn’t matter what it’s name is. If it is one disorder or three. It’s going down.

And then I will stand in the street; in the rain, in bare feet and scream at the top of my lungs: 

“I made it!!”

And I don’t care who hears me. 

 

Because I’m getting out alive.  

Borderline

He looked into my eyes and saw the misconnections behind them.
I know in fifteen minutes he will make his chair do an audible creek;
My queue to leave.

I knew I wouldn’t pass this MOT
Just like at eleven I didn’t pass my cycling proficiency
Because I couldn’t see traffic on my left side and the instructor said “pretend”.
He asks me about what I see and I tell him,
I tell him with a knot in my throat about people
How my mind rotates in oxymoron around my spine and he
He
He tells me I’m crazy.
But that, it’s okay, it’s textbook.

It’s a bad sign when your psychiatrist says
“Don’t worry it’s not the one serial killers have”
It’s a bad sign when your head is hitting the wall again and again
And the fuckers put you in a CT scan to check there is still a brain there.
Of course there is.
That’s the problem.

The diagnosis is accept and live with it.
After all that’s the best prognosis anyone could hope for.
I’m living on the edge.
Borderline.

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A Therapist’s Socks of Mindful Colour

I can’t do mindfulness.
I just can’t.

Even the word makes my heart speed up a beat, which I’m pretty sure isn’t the idea. Therapist after therapist, nurse after nurse, have told me to practice mindfulness. Some of the more mindfully inclined therapists I have encountered made me wonder if it was actually healthy.

They would say things like:
“Don’t think about cooking tea tonight. Just think about your feet on the ground.”
“And how many doors were in the room?”
“Ask each individual muscle in your body to move for you as you are doing a task.”
“…Let the happy light rise and merge.”

I once asked a therapist, bald headed and shod conspicuously with walker’s socks and sandals, if he found that things take a very long time to do due to the slow-moving nature of his art. He chuckled and said that the world is too fast paced anyway. If mindfulness was an Olympic sport he would be on the awards podium, but to me it looked like more of a disability than a honed skill. The day to day functioning of my most ‘mindful’ therapists seemed hindered. Each one that I met seemed slower and slower on the uptake. Pauses in therapy became less reflective and more awkward. They would send me a badly typed email once a month with quotes by Ghandi. As someone who likes to be quick on the uptake, I didn’t see the ‘mindful’ way of life to be even remotely attractive. If mindfulness would make me into a slow moving technophobe with bad taste in footwear I certainly didn’t want it.

When I saw colouring books were coming in trend I was pretty pleased. I LOVED colouring when I was younger and the complex patterns of mandalas had kept me busy during my time at Heron unit. I ordered ‘The Mindfulness Colouring Book’ with my mental auto-block of anything to do with the M Word turned on. But then I fell in love with it. It was addictive filling in the lines with my thick and bright felt tips. When I am stressed colouring feels therapeutic, I just mindlessly fill in the lines. I don’t think about it but I also don’t think about anything else as I try to spread colour through the pattern. My mind doesn’t feel ‘full’, it’s emptier.

So I have got through a fair few colouring books. If you want to try it, my two favourites are The Mindfulness Colouring Book and The Art Therapy Colouring Book.

My view on mindfulness could be changing.

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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.

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The Life of Robyn- Let’s Evaluate and Do Something

This is my blog following the catchily named ‘Discover’ Children and Young People Evaluation Workshop. I hasten to add that there was no ”s’ on the end of ‘people’ on the sheet I have, probably because this was a gathering mostly for professionals who work with and around the Children and Adolescent Mental Health Service. It was not an event for the direct attendance of service users, but it was certainly a day with young people completely central in all points of discussion. Sitting at the tables were the people who can actually change things.

It started at *Cheery Lodge a few weeks ago with a group of patients and a pretty awesome storyteller. We were told about an enquiry into the CAMHS service which is currently taking place in our region. It is called Discover and we spent a very long session discussing the imagery used to represent the process. This was a logo of a missing puzzle piece being slotted into place within a silhouetted head. Is it too simplistic? Is it implying that there is just a missing piece that we as services users need to be given in order to be cured? Does it imply that we are broken? We weren’t sure.

Our awesome storyteller asked us to create a character together to use as an Everyman in all of our stories. We came up with the name of Robyn (unisex) and formulated the average age of sixteen. We left it at that and then set to telling our own stories through the life of the elusive Robyn. Poor Robyn had a multitude of lives- in some making a full recovery, winning the lottery and beating the system and in others being homeless and ending up stuck in an adult inpatient facility. We audio recorded our stories and then added pictures in order to create a presentation.

Myself and *Izzy decided we would quite like to go to present what we had made to the big fishes of CAMHS and other services. A room smelling of coffee and pens was the venue for all the big bosses. As Izzy said: “Adults talking adult stuff”. “They’re just people. Just like you and me.” I whispered back before suggesting we get involved in whatever they were discussing in order to prove this point.

A minor crisis occurred at the start when the audio part of our presentation refused to co-operate with us and despite our increasingly desperate pleas it continued to make demands for a file type we had never even heard of. Having only a first draft of the recording on paper we had to improvise big style by reading the transcript out and improvising the bits we had added in after it had been printed.

Unable to read the tiny words of our notes I had to reduce my non-existent professional image somewhat by borrowing a very kind gentleman’s iPhone, hastily panorama photographing some paragraphs and blowing them up. My own iPhone camera had been disabled on admission to *Cheery Lodge in order to protect patient confidentiality on the unit and such. Thank heavens for understanding and generous people because the loan of the phone was what made it possible for me to take part as planned. We made it through the presentation and got really good feedback.

Suddenly these professionals didn’t seem as big and scary. They were just people. Trying to do their best for so many young people who’s stories are so hard to follow. They did truly listen and pick up on the points that were made- early intervention is needed, more awareness and more training for physical health practitioners. We discussed how differently the subject of mental health is treated in comparison to physical health. One is the train platform, common ground and a safety zone to be observed and preserved. A talking point in a classroom and a measurement in the doctor’s office. The other is the railway track- vital but understated and yet live and silently taking casualties. Sadly the gap between the station platform and the railway track is vast. Far too vast.

When I do this kind of thing I always judge how well a presentation has been received by comparing the initial reaction to my guide dog with the end reaction to the talk. No matter how ignored I am in comparison to my furry companion at the beginning of an event I don’t mind as long as by the end people are more interested in the point that I am making than what my dog eats. Judging by this theory I think myself and Izzy pulled it off big time despite huge initial canine interest!

I did give my blog a cheeky plug at the end as the ‘Inpatient’ blogs I have done recently are all about CAMHS and the opinions of myself and others I have met. I hope they can do some good. If you are here for the first time- welcome. Please take a look around and if you like what you see I would encourage you to subscribe and hang about. The truth is that it’s all very well sitting and talking but mistakes need to be learned from and things need  to be improved. The message of today was definitely one of hope and change. One size will never fit all, but we need to stop so many people slipping through the net and I am so honoured to be a small part of trying to make that happen.

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! 

 

A Gnome-Like Creature Has Not Told Me The Name of This Emotion.

I was sitting in my ward round meeting at *Heron Unit. Scattered around the room were a psychiatrist, occupational therapist, doctor, teacher, a nurse and a secretary whom patients indirectly referred to as ‘skinny cow’. Because she was… Skinny… And we didn’t know much more.

Last week I chose to only speak French at ward round. The week before I brought an elephant finger puppet to confer with. The amount that the professionals listened to patients in ward round was debatable, therefore all patients either humoured it or were fearful of it. This week I’m just tired. It’s 4pm on a Wednesday and I am in my pyjamas. At 4pm of any day I am in my pyjamas. I sleep all day and do mindless and isolating tasks all night until the time just tumble-tails into a non-descriptive blur. I eat the same thing every day and am afraid to leave my room.

“How has your week been?” The psychiatrist asks. He doesn’t read the letter I have handed him explaining exactly how my week has been. My voice feels shrivelled and the usual silence spreads as I feel the heavy weight of being psychoanalysed.

“Erm… It’s been… Okay.” I respond in an unintentionally vague manner as I turn my guide dog’s ear the right way round.

“Okay?” He asks. He gestures for me to elaborate.

“The black hole in my chest is back.” I exhale.

“What do you mean? You feel sadness?” He probes.

“I’m not sure. It’s just a big black hole of nothing in my chest.”

This is the way I describe feelings because to me emotions are never stand-alone words. They are so much more. They make your body feel and function differently and change how you perceive the world around you. They are the most powerful things in your universe. Plus asking me to summarise how my whole body and mind feel with just one word seems silly because I, like most other humans, have not been followed around by a small gnome-like creature holding a placard to tell me which emotion I am feeling every five minutes. Therefore- how does anyone know which word fits what feeling? My perception and experience of ‘sad’ might be at the other end of the spectrum to somebody else’s experience of the three letters.

Hence the big black hole. The big black hole that sucks up my life and leaves me rigid. Other descriptions I have given include: ‘frozen limbs’, ‘the hot coal instead of a heart’ and the ‘burning arms’. I got by in such meetings by just continuing to elaborate on my descriptions until eventually the psychiatrist stuck the described emotion into a pigeon hole with a name and kept it there.

I was shown this picture recently and it made me smile. It is a representation of temperature in the body on feeling certain emotions. Note how ‘Depression’ is cold limbs and literally a big black space spanning across the torso. I guess my description wasn’t too far out.

Feelings aren’t words. They are novels.
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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.