Mental Health Lived Experiences

The Case of Psychosis from Anonymous 

''Back in the Summer of 2016, I was having a lot of trouble sleeping.  There was nothing new about this.  My GP and I had tried so many approaches but, especially at times, it remained awful.  I was probably a bit depressed, not helped by not sleeping and not enough structure or activity.  On reflection, I should, over the summer, have been doing more and not dwelling on things, and bottling things up but it was complicated.  One evening in late September, struggling from lack of sleep, I decided I would stop some disability medication (not for mental health) and see if that helped.  I knew the dose was high - very high - and there were lots of side effects.  It was not a medication I wanted at that time, although it is a great medication, like, for managing pain.  The high dose makes concentration harder.  It would not work with my plans just for then.  I thought, what was the worst that could happen?.  I would soon find out!! 

Things started to get very confusing at work.  I was feeling tested by everyone and while I did not see this in a negative way, I did not know how to make it stop.  People tried to help.  I felt everyone knew all my weaknesses, and how reliant I was, I could not cope.  I knew I had to visit the GP but was not sure why. I was not sure I was ill but knew something was wrong.  I could not see my normal GP this one time and had to explain to someone else why I could not work, whilst not understanding why it was a medical issue.  I was not allowing family to help which complicated things and was not expressing my thoughts or concerns.  Anyway, I did get myself signed off.  I sat at home, not really saying much but feeling very confused.

Then things gradually got worse.  Irrational thoughts were developing.  I felt solely responsible for many world events.  Brexit become my fault, Trump was my fault.  I was SURE the election result was meant to be different.  I would watch The Chase and if they did not win, it was because I did not give the correct answers.  Everything was about me.  Everything had a hidden meaning that was exhausting.  If things went wrong, it was my fault I felt because I had failed.  It was terrifying.  I was responsible for every big or small family problem we had.  I did not go to bed.  I did know, on some level, something was medically wrong.  I would phone 111, phone and beg to see my GP (and then sit in silence feeling sensory overload) or get my family to drive me to the hospital.  It was like being on The Truman Show, with everyone knowing everything and me being in the dark. To me, everyone knew what was happening except me and I was being taught some lesson I did not understand. 

It showed me lots of areas for personal development.  It had only been a short time, but it felt like ages.  I recall one evening, shaking a lot and being very cold one night.  By this time, my GP had made an emergency referral.  My mum started giving me my disability medication, the same medication I had stopped. She had not known I had stopped earlier, but knew how unwell I was then.

At the Referral, I sat in a room with two mental health professionals (a nurse and OT) probing questions, it was very sobering.  I did not understand everything but I recall thinking I had well and truly done it this time!  I recall them asking me to explain about Trump and I laughed!  I knew for the first time how ridiculous it sounded.  I had been back on my disability medication for a short while, but at this point, did not realise that this had caused my difficulties.  I was still extremely shaken.  After the appointment, I went home and was starting to feel better.  I would still avoid TV and other activities I was used to doing, very scared it would come back, leaving me lost as to what to do.  My first Psychiatrist appointment got cancelled (ridiculous reason involving a van) and I visited my GP who gave me some activity suggestions for that evening.  This really helped to reduce my anxiety and give me a focus, so I was less worried about irrational thoughts returning.  I also started to take my own action influenced by the need to address my ‘weaknesses’ and reliance, just trying to learn in as positive a way as possible from the experience.  I went to the gym,  I tried Yoga, joining a class.  I even did some pottery and I tried acupuncture.  I was feeling very embarrassed, but I certainly benefited from getting more involved in activities to cope with what had happened.  I wanted to take back control from the illness and build on it. 

I gave myself a structure and work to do. I wanted to keep my mind occupied, still worried about whether I would recognise an anxious thought from an irrational one?  I needed others to have faith in me again, feeling I had broken something (I had not really I was just embarrassed and it felt like a long climb ahead), but more than that, I had to have faith in myself and I had not just been ill, I had been highly self critical and subdued. 

When I saw the Psychiatrist, I already felt better.  It felt the fog had almost lifted but I was very shaken, and realising I had caused the illness, I was very angry with myself.  I had written it all down as the GP suggested (I think she thought I would sit in silence otherwise), but it showed me how unwell I had been.  I think I shocked myself and some were not keen on me writing it down, but I wanted to make sense of it so it had less hold on me and let me move on.  The Psychiatrist did not record my experience accurately, such as, stating I had been doing less for myself due to the episode.  Not true.  I still feel it should have been recorded as it was.

I read about my medication and read of the importance of not coming off the Baclofen unsupervised and the likely issues if you did.  It said ’High fever, altered mental state, muscle rigidity and, in rare cases, organ failure. Psychological symptoms can, in some cases, last for months.’   Oh dear! 

Going back to work was a challenge.  Initially, all I had wanted was to be ready to go back to work, but as time went on, I was worried, what if I could not cope?  The first day back, I was so nervous, but people were supportive.  I had been off for a few months.  My GP made sure I was on a very slow return to work.  It was not easy.  I was very tired and anxious but actually it went well.  I had lost perspective due to the illness and was too sensitive.  Work gave me a needed different focus away from myself towards others and work goals helped me move on and get back to ‘normal’.  I very slowly increased my hours and things were back as they were before but with some positive changes.

I got a lot of conflicting advice from people I trust, "take it easy", "keep yourself busy", "see someone/me regularly", "don’t dwell on it".  It showed me I had a lot of support, so I took each day as it came.  I was worried about being over-dependent amd what that would mean in the future, and still seeing myself ill (and others still seeing me as ill).  Knowing I had this support at this time if I needed it, was enough to reassure me and it was helped by the change of focus work gave me and my own projects I had started as something new when unwell and recovering.  I made a special effort to work on my communication.  I tried focusing on the bigger picture and my future, time just went.

I learnt a lot from the experience.  I got more involved in activities and challenged myself with my own projects.  I found more of a voice, held my own more.  This led to other opportunities and successes.  I strangely, over time, gained confidence, maybe, also because I developed some interests/direction but it had a huge impact on me and still feels very recent.  One of the most effective approaches was helping others to prevent worry of my own concerns and feeling satisfied.  The illness truly shook me. 

It took me months and months to not be so cross with myself for stopping the medication, like I did.  Time went at a different pace, much quicker, still does!  I saw a Consultant for my sleep, even though my sleep was fairly okay for me, I wanted to know I had done everything I could.  I changed the bed!  Worked hard on all things I found challenging, so I could manage more independently.  It made me make changes, but I was too hard on myself.  I wanted to manage things.  I think some people did not fully understand this.  I worked out what I wanted in different ways but how to get there?  It made me more proactive, more willing to take the lead for myself, but I should have possibly asked for help more, accepted help more, as I made it very difficult on myself (but being cross with myself got in the way).  I felt I needed to take a lot more responsibility, so this could lead to other opportunities, knowing that none of my hopes would happen overnight and would be down to me, but I would need support.

I have stayed well, very well, not even had any sickness.  My sleep is fairly okay.  I enjoy the  music, TV and activities I used to before being ill and don’t avoid these but have new interests as well.  I have started to go ahead with other plans that have taken time to get going, but family, the GP and others have been very supportive with my life and, while certain plans have taken longer than I wanted, I’ve tried to accept this and deal with one issue at a time, feeling this was easier.  Just very quietly getting on with things!  

I have done some new projects/interests I had thought up.  I developed some new useful skills from scratch, tried saying yes more than no.  Tried to be more flexible.  I have written things down more as had been suggested and I find it helpful to limit over-thinking.  I had not really tried this before.  I have some exciting plans, but it will not be easy.  I plan what I can, but much of life cannot be planned!  I try not to over-think and dwell on things, or be to hard on myself.  I’s work in progress as I’m sensitive!

I recall my doctors phoning though,to ask me to have a telephone appointment about something.  I disliked telephone appointments, preferring face to face and had not seen the GP in a while, but because of everything, feeling that I should be better at this, I felt I should accept the telephone appointment.  It was shortly after that, I decided I was taking things too far and should have spoken my mind.  I do speak my mind more now and have done projects I never thought I would and I’m okay on the phone!  I’m still learning from the experience but it was not easy. 

I will not want to come off the Baclofen again and will need help if I do!  I have been very busy.  I have maintained change and I'm very thankful to those that helped me, like my family and my GP.  I hope I never experience anything like this again, but you never know with life, at least I know I can get through it.