Tag: mental illness

This Isn’t Me- It’s OCD.

When I was discharged from hospital my keyworker and I did the masses of paperwork in a visiting room with a lumpy sofa. Working our way through 1-5 scales and word selections we came to it: “I help other people when in need”. We paused.

OCD is a gremlin. It tells you what to do, how to act and who to be. It’s more than just anxiety- it twists your arm into doing what is *best* but the success never comes.

We paused on that question because we both knew that I love to help people. I love it when people take comfort in me and seek my support. I like the toasty feeling of being given trust to hold on to. I go out of my way to help other people. But there are many scenarios where I won’t help someone. Quite pathetically- It’s because OCD won’t let me do what I want to do.

If someone is feeling down I sometimes am so scared I will say the wrong thing and that they might kill themselves that I have to walk away. If they are ill I am afraid it might be contagious and deadly. If they are hungry I can’t offer food because I’m scared they might be allergic to what I give them. OCD loves hyperbole and the cold seasons make me cold too. I’ll avoid stuff, if I can’t avoid it I’ll panic, and if that goes on for too long I’ll end up hyperventilating.

I’m writing this because one of the carers I am close to has a bug. She had been physically sick but was on the night shift so couldn’t go home. I wanted to give her a hug. It’s the day after and I still want to give her a hug like I usually do. But instead I spent the night making my room reek of disinfectant and scrubbing the germs off door handles. I am too scared to eat the food in the fridge for fear it has been contaminated. A person that I am so close to, and love to bits, is now terrifying.

I feel like a bitch. I’m scared to let her near me and scared to touch anything she has touched. I’m hoping she doesn’t take this personally. I know I would if I was her. I’m angry that this disorder controls me and what I do and how I act. How I can’t touch anything with my bare hand until 48hrs have passed. I rationally know that even if I did get the bug it wouldn’t kill me. I’d recover. So why does this fear grip me so tight? Frustrated is not the word. I am cold because I am so frozen with fear.

That pause still upsets me. What a mess. 

Maybe I’m A Party Pooper… But…

I don’t *get* Halloween. I don’t understand it and I don’t like it. Why do we have a day to celebrate scary things? Where is the joy in scaring people and being petrified? More importantly why have we been bombarded with it since ‘back to school’ left the shelves back in September ?

I don’t think myself, as an anxious person, and Halloween mix. I’m dreading the knocks on the door tomorrow night; figures in black and masks, drinking and noise. Even if it is just kids from down the road- it sounds like a recipe for panic attacks.

The one thing I hate the most is that there is no ‘Halloween Opt Out Scheme’. I can’t wear some kind of badge that says “Please do not scream stuff at me- I may have a brake down”. There is no way to get across that you are genuinely terrified on a night that glorifies being genuinely terrified. Some people seem to believe that Halloweeen gives them the God given right to be nasty. Teasing spooking and scaring- “AH COME ON ITS HALLOWEEN.”

It’s not that I’m a wimp or a spoilsport- but I find something very unsavoury about the celebration. People seem to think it is a lisence to do anything they like to whoever they like. Just bear in mind that not everyone is ‘in the spirit’ -pun- of Halloween. So just be respectful, okay?
I’m probably spending this year with a book and hoping to all the lucky stars that no one knocks on the door. Can’t we hibernate until Bonfire Night is over?


I’d love to know if anyone else with anxiety/mental health problems feels this way too, at the moment I feel like a massive party pooper and a rubbish teenager. I did however feel the need to take this cute snap of little Mél inside a pumpkin bag from Tesco!

Why I Might Need to Say Goodbye

Through being in hospital I have come into contact with around a hundred other young people. Possibly more. Some were just brief acquaintances- admitted for a day or so and some I built friendships with.  But there are a lot of people who I won’t stay in contact with post-discharge. I have to let go.

In particular I am talking about people who I follow online who share their struggle with the world. Like me they share experiences but most do it through social networks. Minute by minute highs and terrifying lows. Rushed instagrams about pills and razors. I have called the police several times for several people who said they were trying to end their lives online. Every time I stayed up all night until the police got back to me and said that they were fine. My OCD goes overboard with the worry and it is frustrating to be so useless in a situation. I know these posts are sometimes cries for help or attention but if something happened I couldn’t live with myself. What if they are doing something bad but no one else hears the cry? 

I’m not going to lie- this action is completely selfish. I can’t cope with what I’m seeing. I know that some people feel great benefit from lsharing during their deepest darkest moments but I personally don’t. This blog is written in hindsight. I would never post anything that would make people concerned to the point that they would phone the police. Truthfully this is because in those times I don’t want anyone to save me so posting would be an unnecessary risk. It has never occurred to me to publish that I am in the process of, or planning to, hurt myself. I talk about the times I have been- but I am always standing in a better place when I do. Sharing my story and my experience is my attempt at awareness raising so I try hard to keep my blog rational, honest and informative. 

When I go on social media I don’t want to be reminded of my time in hospital. Hypocritical as it sounds from a mental health blogger, I don’t want to look at it. I’ve had traumatic experiences involving other patients in hospital and though people didn’t mean to hurt me the memories spark from the smallest of posts. I need to process my experiences for myself and having other people rip off the metaphoric plaster and making me remember is hard. Plus when you struggle with thoughts about weight and food the last thing you need is a selfie by someone who hasn’t eaten for a week or a picture of a salad they’ve nibbled when you just fought the demons and ate a burger. I know that behind the usernames they are struggling, even if they do not realise it. However, for people trying to recover, following those accounts is the equivalent of swigging G&T at the back of Alcoholics Anonymous. 

I want to make clear that I do genuinely care about everyone who I have met during this process. I really do. I wish them nothing but positive things. But I’m not able to actually help any of them, and by trying to I am hurting myself. I write letters to people I want to stay in contact with because the fact that they take a while to produce and arrive means they are less spontaneous. Where as with a few taps of a finger you can share your perils online. I might follow people on some platforms (the ones they share with family and real life friends) but not the ones they use to network with other warriors or vent. I feel safer like this because there are other followers who would be much more of a help than I if a crisis came about. I don’t even know the addresses of the people I was in hospital with and if something happens I can only offer the police a mobile number at best.

I won’t forget those I’ve met and I’m so angry that these illnesses have intruded into such vibrant young lives. I wish I could help more. If I do step away from you online; I hope you can understand that I wish nothing but the absolute best for you, but this is a step I have to take for my own recovery and I hope one day you will take it too.

  

Do What You Have To, Get Out That Door

At the bottom of the washing machine is a very unappetising pulp stuck onto the ankle of my jeans. It is one of those days where bailing on checking the pockets of my washing pile has come back to bite me. These sluggish remains of yellow paper have been hiding in the back pockets of my jeans. They are instructions for my brain.

It may sound bizarre but for the last few months when going out I have made myself a crib sheet to follow on how to function, like the kind you would need if you were using a very temperamental second hand computer. On some sheets are just the basics- “You need to get the number 6 bus before 5pm” or “return library books so they don’t fine you”. On others the detail is much more and without that scrap of paper I wouldn’t be able to get out of the door.

Take this weekend for example- Gay Pride. A familiar bus ride and then a one hour train journey to a familiar city. A whole day out, which I had been mentally planning for a fortnight. My yellow piece of paper is A4 and double sided. It gives a complete itinerary for the day with planned times to make sure I eat something to avoid blood sugar crashes. It even suggests what to eat and where from, avoiding foods which will trigger OCD thoughts and cause unnecessary stress on an already daunting day. There are multiple choice, step by step instructions of all the things I usually do without batting an eyelid; worst case scenarios, distraction ideas and helpful thoughts to tell myself. It all sounds odd. I know.

But actually this is a coping strategy that I have learnt and it works. It means I can get out and about and do things I want to do. Granted with limited spontaneity. It isn’t something that I have been told to do by any therapist, it’s just what I taught myself. There have been, and are, times where I need much more than my plans. Backpacks with enough water to end a hosepipe ban and enough hand sanitiser to supply a particularly hygiene conscious surgeon operating in a swamp. Sometimes just to go down to the shops I take half my sensory box and something to cuddle. I won’t use even a quarter of these things but it’s knowing I have them which allows me to go out.

My point here is do what you have to do. Survival, backpacking mode. At the end of the day nobody knows or cares what you have in your bag. No one knows how much you have planned the day or how many things you had to do things to make it happen. Do what you have to do to get out the door and have a good time. I had a pretty awesome time at pride, my plans worked fine and I didn’t use any of the listed distractions for train journeys or the second battery pack for my phone.

I repeat I am not a therapist, or qualified with anything other than experience. I just want to share what I have found to help my neuroboiler to keep ticking on. Maybe it will help someone. 

 

Kids in Crisis: The Bits It Missed

Channel 4 recently showed a documentary discussing problems in Child and Adolescent Mental Health Services, focusing mainly on the country’s overall lack of child inpatient psychiatric beds and lack of early intervention provision. Over the past year I have noticed many news articles and reports on these subjects. But there is one thing I think they missed.

Yes there aren’t enough CAMHS inpatient beds, but there also aren’t enough staff to cover the ones we’ve got.

In both CAMHS inpatient units I have been to there have been serious problems with staffing. Friends of mine have confirmed experiencing the same problems in other units. There are often not enough regular staff who work on the ward on shift, so numbers have to be topped up with bank or agency staff. Sometimes these workers become regulars on the unit, thus getting to know patients. However a lot of the time they are coming on to the unit for the first time, know none of the patients and have very limited experience of the setting. In one of the CAMHS units I went to, which was a closed unit, patients used to use the ignorance of the agency staff to break the rules. One of the most notable examples I remember of this was a member of agency staff being persuaded by patients that the toaster could be plugged in in various bizarre places around the ward. This resulted in patients being found smoking in an ensuing after lighting cigarettes from the toaster. It’s funny but there are many other examples I could give ended with a patient getting hurt.

Having a team of regular staff covering a shift is vastly different to having numbers topped up by agency or bank. Funnily enough patients, often with complex past relationships with adults, tend not to open up to relative strangers. Though these workers count as bodies on the ward a lot of their work is observation and directing regular staff to the young people who need them.

If there were enough staff in each unit the quality of care and patient turnover would be much higher. The increased knowledge built up over time of patient’s case alone can make a huge difference to care. Bank and agency staff get a short handover about the ward and the patients however the information given is based on what has happened recently. Staff nurses and health care assistants who work on units regularly will build up the trust and the life story (often quite complicated) of a patient; thus helping them identify crisis triggers, early warning signs and risks.

The documentary did portray really well other points, such as how children and young people can be moved all over the country from hospital to hospital and how this is often a fast decision based on their condition fluctuating. I felt sorry for parents who had to deal with their child being passed around, sometimes hundreds of miles away from home. Dealing with relapse is hard enough but if it results in more moves and being further away from home it will be even more devistating for patients.

Some psychologists are campaigning for CAMHS services to cover up to the age of twenty five. I will probably write another blog about this soon as it is something I believe passionately in. The move from children to adult services is drastic and for many traumatic. The attitude appears to shift from CAMHS teaching you to cope with what you have to adult telling you to just deal with it. There is a huge difference.

A mother expressing her concerns over her daughter becoming institutionalised made me think of the many, many, young people I have met for whom moving from unit to unit has become a way of life. I have met patients who have been in hospital for years at a time. That is years of living away from home, years out of education and years without socialising with people who are mentally healthy. Who can blame these young people for becoming comforted by the safety and routine? Especially when many will have had bad experiences with outpatient care or have difficult home lives. These units are vital but there needs to be clear paths for patients to move on.

To sum up:

  • We need to staff the beds we have appropriately to improve the safety and the treatment of young inpatients. Then we need more beds.
  • Families should not have to wait for a young person to deteriorate in order for them to become an inpatient to get the treatment they need. Early intervention must improve.
  • Ideally every region should have some sort of provision for mentally ill young people.
  • Where possible young people should go directly to the most suitable security level provision to avoid more moving, and disrupting other patient’s care in lower security units.
  • Young people should be covered by children’s and a transitional service until the age of 25. The 18 – 25’s bracket could be used as a transitional stage between the two services and their massively different approaches.
  • There are so many things that need to change. 6% of the Mental Health budget is not enough to support the country’s mentally ill young people. 

 

So Called Safe

Times like this I shouldn’t be here
Its not stopping my stress it’s stemming it
I’ve been helped
alongside the girls who eat tape measures
and the boys who breathe fire.

But I’m angry that as I lie in bed
I’m whispering to my pillow
“The door’s locked.
The door’s locked.
The door’s locked.”
And for once it’s not the OCD talking.

I’m scared because they’ve been kicking the doors in for hours
and we are three members of staff down
and as they storm the siren screaming doors
the agency blokes don’t know their names
to phone for the police.

But what are parents supposed to do?
When Seb is sixteen and suicidal so sent to be safe.
The psychiatrist is supposedly stalling their son’s surge for suicide.
But in a moment Finn throws a fist and Seb’s got stitches.
Seb’s mind must be bad for six stitches to be the safest.
How scary is that?

The ceiling screams when we do,
Staff scatter.
Skin splits.
And sewn on the skin of my teeth
Are slideshows of scenarios
Seen in children’s psychiatric settings.

But we’re safe. Right?

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.  

What to Do When a Mind is Struggling

It’s mental health awareness week! Wahoo! To celebrate, for the first time ever, I opened up my blog to my Facebook friends. I asked what they wanted to see more of- and I got a brilliant response! The thing I want to tackle first is how exactly people can help someone with a mental illness. It was in demand and it is so great that people want to help.

First, three important words:

“I believe you.”

Never underestimate this statement. It is subtle yet effective in the way that it works. You see, a lot of people with mental illness feel like they are misunderstood or not believed. Just these words can make all the difference.

You can’t fix it

If you ask a mentally ill person what’s wrong you may get a variety of answers. Some of the problem might be abstract- dark feelings or hallucinations. If this is the case listen. You can’t get rid of these things but you can get rid of the loneliness that person has in the situation. Good things to say are: “That must be really hard”, “You do so well to fight all this.”, “I can see how hard it must be.” And “It will pass soon and I’m here until it does”. Notice there are no questions? Questions can make the person feel interrogated or judged. Listening is your best bet.

If there is a physical problem that is ongoing, making the person distressed, you may be tempted to leap on it. Just because it isn’t as abstract as the above it doesn’t mean you can solve it. If the issue has got the person to the point of complete distress then it is not something easily solved. Mentally ill- not stupid. For some of us logic goes out the window when in crisis, to you the issue may seem to have been completely blown out of proportion but be patient! I’d encourage you to think of what kind of situation would make you feel that distressed, and act how you would want to be treated. It might be that a mug has broken, but the distress may seem equivalent to how you’d feel if you had a near miss on a motorway. As a last thought on this- problem solving at its most effective usually takes place when all parties involved are dry-eyed and rational.

Distraction

Use with caution. Never give the impression that you want the person to stop talking to you or that you have heard enough. Hear them out and then, when things start to slow and calm a bit suggest doing something. “Shall we put a film on for a bit?”, “Is there anything that might make you feel a bit better now?”, “what should we do now?”. Preferably stay with them, do something else and try to promote different topics. If the problem does raise its ugly head, talk about it and then move on. Don’t make the person feel that the problem is being belittled.

Breathing

If the person is out of breath or has irregular breathing then try to encourage a calming breath. Use your voice to calm and instruct in and out breath to a slow count of three. Do it yourself. You can quietly do this without saying anything, just by beginning the exercise yourself and making the breaths audible.

Reassurance

Reassurance is always good. You might be asked for reassurance or you might feel like it is needed. If you are being asked for reassurance- don’t even think before giving it. Say what you have to to get the person to calm down but If the person needs reassurance a lot, and not just in crisis, think more carefully. Don’t use blanket reassurance. I’m going to use an example.

Emergency reassurance:

*person showing distress, irregular breathing etc*: “I won’t be sick will I?!”
Friend: “No, don’t worry you won’t be sick. You’re fine.”

This is the blanket method. It helps when the person is panicking about something very unlikely and the fear or panic is intense not ongoing. If by some chance the person’s fear actualises don’t worry about covering your back. When your friend has calmed down they will realise that you were trying to help and that if anything you were both very unlucky that on this occasion the fear actually happened!

Using this example, if someone is in need of regular reassurance because they have a phobia or perhaps OCD a different tactic is needed. You can’t assure someone they will never, ever, be ill because both you and they will know that that just isn’t true. It can also not be productive to treatment to rely completely on other people’s reassurance.

An Example: “Will this make me sick?”
Answer: “Well you have felt this way before and you are usually fine once you’ve calmed down. Even if you are sick- it’s fine. It happens.”

See how you are trying to make the scary a little less so? This also can become an internal monologue of reassurance.

Mood lifts

If someone is suffering from low mood or depression remember that it isn’t always a case of pulling yourself together and getting on with it. Anything you say to this affect won’t be taken very well by the person at all. This is by far the topic I find most difficult to write on because there is no clear solution. All I can say is try and think of it as like having flu. It’s one of those things, but you can help it get a little better by doing basics. Bathing, fresh air, healthy food and water. Keep in mind that all these things are probably not very appetising to your friend right now so coaxing and persuading might be necessary. Go back to the distraction section of this post and get something light going.

I hope this helps. This is all written from my personal experience so I can’t promise it will work for everyone but if nothing else it’s a start. Let me know if you would like to request any other topics or anything to be covered in more detail. Anyway- happy mental health awareness week!

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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