Mibrofyalgia

The rolercoaster of mood swings has finished but left me in a low.  Having the cold hasn’t helped because I can’t really go out and do things, which usually helps me feel better.  It’s very cold outside and I don’t want this cold to get any worse.  The depression has kicked in good and proper.  I don’t enjoy things, that is when I can motivate myself to do anything, I can’t think of stuff to fill my time, when I do think of something I try it and either get frustrated or hate doing it-things I would have previously enjoyed.  I can’t concentrate and keep waking up too early in the morning.  I feel persistently sad or empty.  I need to try and nip this in the bud, so I’m going to harrang my doctor to see if I can see a psychologist, I’ve been on the waiting list for about a year and have heard nothing.  To be honest I’m not very impressed with the NHS, I’ve got schizo-affective disorder, a serious mental illness and I have to wait this long for help.  If I had the money I would pay to see someone privately but I’m on benefits so there’s no chance of that.

Once I had been moved to the psychiatric ward near home, my psychosis receded but I sank into a deep depression with anxiety.  I was in over the Christmas and new year period so the normal activities were not on and so I became very, very bored.  So I spent my days chain smoking.  There was a TV but I couldn’t concentrate on it and sometimes found it to be distressing.  I would go to bed as early as I could to try and shut myself off from the world, but I had to wait to be given my medication first.

I started to get home leave which meant I could go home for a few hours to start with and then I got a whole day and night.  I was so anxious about just about everything.  After a few weeks I broke down in front of the psychiatrist (a different one from the previous ward, who would become my outpatient doctor) and said that I just wanted to go home.  I was to my amazement allowed to go home that day.  I had to see my social worker before I could go.  I was elated.  It didn’t last long.  I got a taxi home and sunk even deeper into depression which lasted for two years.  I won’t go into much detail but it’s by far the worst depression I’ve ever had.  Unfortunately I didn’t tell my psychiatrist how bad it was because I was afraid of being hospitalised again.  This in retrospect was a mistake because I could have been put on antidepressants earlier if I’d been more open.

I had my anipsychotics changed because they were putting me at risk of osteoperosis and were also making me feel so flat that I couldn’t function.  I was then changed again because the new ones were causing terrible nightmares and significant weight gain.  I went from a size 10 to a size 18 without any change in diet.  Once on the new antipsychotic I dropped most of the weight to a size 12, again without any change in diet.  I was then put on an antidepressant and rapidly gained back all the weight I had lost.  They helped my mood to a degree but not enough so I was changed again, twice.  Now I’m on an antidepressant which helps my mood but I get a lot of dreams and am still overweight.  I’ve tried eating a sensible diet, that had no effect, so I tried reducing my calories again and again, no effect.  I noticed I was eating very little and became concerned about slipping back into old habits and decided just to eat a sensible diet and just try to come to terms with being overweight.

I started having mood swings again about two years ago and was put on a mood stabilizer which seems to have helped as long as I don’t get too stressed.

I’m relatively stable now and starting to piece together my life bit by bit, but it’s taking longer than I had hoped.  I’m also hoping that my next post will be “my recovery from mental illness part 1″ 

I don’t remember much in the weeks after getting the forcible injection.  It’s all a bit of a blur.  My first memories are about a month later and people coming to visit me.  I was still psychotic but it was slowly receding.  I was on a heavy dose of olanzipine (an anti-psychotic medication).  I was being hostile to some of my friends and family and just withdrawn with others.  The ward I was in was a mixed   gender ward and had beds for 12 “inmates”.  This in reality meant usually 10 males and 2 females (including myself) but at one point there were 3 of us.  In my opinion it is wrong to mix females and males when they are as ill and vulnerable as this.  Most medical wards (although not all) are separated so why not psychiatric wards?  I reckon it’s to do with money rather than the welfare of the patients.  There were supposed to be separate toilets, showers and baths for each gender but this was not the case, the male shower room and toilet was broken and the female bath room was broken so there was only one of each so they were shared, which meant pee all over the floor in the bath room.  The enamel on the bath had all worn away.  The shower was in a state of disrepair and was more of a trickle than a shower with a disgusting floor.  It could take a whole day of waiting to get a wash in either room.

The ward consisted of a day area, with an area for eating which was also used for art therapy which was for one hour a week.  There was an area for watching TV and two very small “quiet rooms” (one was the designated smoking room) with glass walls so the nurses could see from their station what was going on.  There were two corridors to each side where the bedrooms and and bathroom down one corridor and the shower room down the other.  There was a very small garden but one was only allowed out once you were deemed safe and with a nurse maybe two.  I found this very difficult as I wasn’t allowed outside for a long time and became very claustrophbic being contained in such a small space with so many people and no fresh air.

There were some very unwell people in the ward (obviously) some were quite improved and lucid but others were in various stages of psychosis.  One in particular was very manic and was pronouncing his delusions and these fed my delusions.  He was very helpful in that when I said I had a bit of a sore tooth he insisted that I say to the nurses and get taken to the dentist.  I did this and it turned out I had two impacted wisdom teeth which may have been what had been causing my “sinusitis” headaches before I was admitted.  I had to go under general anaesthetic to have these out.

The food was atrocious so I ate very little, especially because I now had delicate gums.  But because I was on anti-psychotics I gained weight anyway.  I usually missed breakfast because I was unable to get up in time because I was so sedated.  I would have a small amount of soup and a yoghurt for lunch, something vile which I would poke at for tea and at pill time I would have some toast to try and soak up the medication a bit.

Pill time was an unpleasant affair.  Two nurses would wheel out the medicine cabinet.  Sometimes it was one of the few nice nurses, those times I would be ok.  But there were several who thought it was ok to dispense the tablets into their hands instead of the little cups provided.  I was very paranoid about germs and refused to take the tablets if they had done this and this made them very grumpy indeed.  Even now I don’t think anyone would want to take tablets out of a relative strangers grubby hands, but maybe that’s just me?

Once a week everyone would see the consultant psychiatrist.  I don’t really remember much of our short conversations but inevitibly I would leave crying.  I don’t know why.  She was unpleasant and patronizing and I found out later that I wasn’t very communicative, oh well.

The new consultant psychiatrist from my home area came to visit me at some point and she was very polite and understanding.  I still didn’t really know what was going on at that point but it turns out she wanted me moved to a ward closer to home and where she was the consultant.  Unfortunately the ward psychiatrist managed to stall this for a good six weeks.

In that time I was changed to a different drug rispiradone I think because the olanzipine wasn’t doing the trick.  Once I was on this drug, every morning I would wake with a very sharp spasm in my calf muscles, it felt like they were going to snap it was very painful.  It did however work for the psychosis.  I became very depressed and anxious.  My hands were raw from constanly washing them.

Then a new patient was admitted.  He was probably about 50ish.  He had long grey hair and a grey beard.  He cornered me and said that he was going to kill me.  I was terrified.  He then said it again but this time in front of others.  One of the other patients told the nurses.  They did nothing about it.  They managed to wheedle out of me that it had happened and said I should tell them if it happened again, I was terrified to say anything.  I did tell my sister who came to visit , she was my named person (the person who is supposed to stand up for your wishes while you are not well).  I eventually persuaded her to say something to the nurses and they said I was perfectly safe and that they would watch him 24 hours a day.  That lasted about 12 hours and he cornered me again saying he was going to crucify me.  I told the nurses and said I wanted a transfer to a different ward immediately because I didn’t feel safe.  I was moved 3 terrifying days and nights later.  He urinated in my room, luckily when I wasn’t there.  So much for 24 hour observation and so much for locking our rooms when we weren’t there.  I couldn’t go for meals because he would threaten me.  It’s pretty hard to avoid someone in such a small ward.

Finally I was moved to the ward near my home and I was so relieved.

I broke out of the unalarmed fire door and somehow managed to scale the rather large fence surrounding the hospital.  I thought I was being chased by the evil family and kept hiding in dark doorways.  I thought I could see camera’s watching me so kept running through the streets.  I ran as well as I could and stopped at the top of a hill.  I had no idea where I was and noticed a man in a van following me.  He kept stopping and as I moved on he would come closer.  To this day I have no idea if that was a hallucination or not.  I saw a phonebox and dialled 999 and probably incoherently told the police that someone was following me and I was scared.  They asked me where I was, I had no idea, I looked about and told them what I could see around me, what landmarks there were.  They arrived quickly and bustled me into their car.  I told them about the hidden place where there were fake doctors and where they were doing horrible things.  We arrived back at the hospital and I was frogmarched into the lobby.  I was then taken into an interview room with who I now know to be the consultant psychiatist on duty.  I told them my theories and I do remember him looking quite alarmed.  He said I was to go into the secure ward.  Once I arrived in the locked ward I believed that I was here to be killed.  If I went down the corridor to the bedroom I would die.  So I stayed awake the whole night in the small smoking room, pronouncing to some other poor patient that we would all be free soon.  I started to believe I was Jesus and that I had great power and talked incessantly.  As morning came my mood darkened again and I believed I was being shot at, so of course I began hurling myself around to dodge the bullets.  At this point I must have been “taken” to my room as the next thing I remember is being pinned to my bed by bending my arm backwards.  I couldn’t stop crying and thought I was doing some great deed by being in pain that I was somehow protecting someone else.  I’m not really sure what exactly I mean by that but that’s how i remember it.  I also remember looking round and seeing 3 other staff grinning to each other.  Then I was forcibly injected and everything went black…

I had been swinging up and down for a long time and had terrible anxiety.  My antidepressants had been changed a few times but were not doing the trick.  I then stopped sleeping properly, I thought people on TV were talking directly to me and that lyrics in songs were special messages to me.  For a while I had religious delusions.  Then due to other health problems I had to stay at my parents home for a while.  I started having very paranoid delusions and hearing voices and thinking that I’d been attacked.  I thought there were vampires chasing me and that someone was stopping and rewinding time.  The 2004 Athens Olympics were on at the time and I was convinced that I was taking part in some of the events.  I thought the ceiling was leaking blood.  I became very difficult to deal with and wasn’t very easy to be about.  I kept trying to “go on the run” from the lurking horrors.

I eventually after 3 months I was starting to be more lucid and went home.  I got in touch with my Psychiatric nurse and got an appointment with one of the locum psychiatrists.  I told her all that had happened, her response was “I don’t know what that was” and sent me away with a low dose of mood stabilisers with my anti-depressants.  I dropped into a devastating low.

I moved house to where I live now in the summer of 2005 to be nearer family and to somewhere that had regular buses and a shop, a bit of a novelty after living in remote parts of the country. I became high again but it turned into psychosis after a few months.  I had terrible headaches that made me cry in pain.  I believed I was in a fake house and that I was being drugged when I was asleep.  I believed the phones were tapped and that someone was out to get me.  I saw my GP who said it was a sinus headache, it got worse and couldn’t sleep for the pain, I had an unpleasant run in with an out of hours GP who was very mean.  At home again I phoned the police (Ihave no idea why) who put me through to the ambulance service and they sent me an ambulance.  I had locked myself in the house and lost the keys so they had to climb in the window to pick me up.  Once in A&E I babbled about my fears and was sent to a psychiatric unit.  By this time I hadn’t slept for 4 days and still wouldn’t sleep I was too scared.

I became paranoid about the place I was in.  I believed that it was run in secret by an evil family who were drugging people into submission, restricting the air and that the doctors weren’t doctors at all.  I believed I had special powers.

I broke out the unalarmed fire door and ran away…

The psychiatrist decided that hospitalisation under the mental health act would only make me worse.  I was very pleased.  He decided to keep seeing me several times a week to see how I got on.  I started to improve on the antidepressants and my eating habits and weight also improved.

I quit two of my jobs and continued with the first one selling silver jewellery.  I was still in a bad relationship but still couldn’t muster the courage to leave.  I found having to quit college very hard and spent a lot of time obsessing about what on earth I was going to do with myself as a career.  I should have been resting and probably should have gone home to my parents but I was relishing my independence too much.

The next few months are a bit of a blur, I was quite numb but to me that was better than how I had been feeling.  I decided to retry the college course I had dropped out of, which started in the autumn of 1998.

I was starting to have what I now realise were mood swings.

I managed to complete the college course which finished in March 1999.  I finally mustered the confidence to leave the bad relationship.  Unfortunately I decided I didn’t need antidepressants any more and stopped going to see the psychiatrist.  I quickly dropped into a deep depression after a heady high.  Then proceeded to get high again, then delved into a deeper depression.  During one of my highs I decided to move to another city and do a course in illustration.

I swung between depression, being high and started to get bouts of paranoia.  My GP put me on Prozac but didn’t send me to a psychiatrist.

I wasn’t enjoying city life especially because I was living in a very tough housing estate so moved 36 miles from college to the country.  Not long after that I became very ill with fibromyalgia (which I will not go into much here-see fibrmyalgia post).  Due to the fibromyalgia I couldn’t get out of bed let alone go to college so had to drop out.  Depression ensued and I was referred to the psychiatric day hospital nearby.  Initially I just saw nurses but eventually saw a string of different locum psychiatrists.  They focused on the depression.  I kept telling them that I was getting mood swings and feeling elated but this did not interest them.  Because I only ever saw each psychiatrist once none of them got to know me well enough.

Another move and more swings, each getting stronger in intensity.  When down I would sleep all the time, lose pleasure in things I had always enjoyed, panic attacks, dark thoughts, low mood, very little talking.  When I was high I would think up wild schemes, stay up until all hours, lose my appetite and talk incessantly, not really making much sense.

Then I lost touch with all reality…

When I was 14 I felt something was terribly wrong.  I told mum that I was very unhappy and it had been going on for some time. I had been having panic attacks and sleeping very badly with crazy nightmares.  She took me to the doctor who sent me to see a psychologist, who I saw once asked very few questions and was very unhelpful.  When I was 15 I was put on prozac.  I took it for 3 days and by day 3 I was catatonic, I wouldn’t eat, drink, talk, get out of bed, I just stared at the wall in my bedroom.  I was hallucinating.  I was taken off Prozac.

I started eating less on a day to day basis and became obsessed with trying to limit the amount I ate.  I kept checking myself in the mirror and was convinced I was overweight.  I hated school and couldn’t be bothered with it.  I drank far too much every weekend.  I started seeing a guy who was 18.  I started skiving off school and was only interested in art class when I did turn up.

I had to stay at school until I was 16 and somehow managed to sit my Higher exams.  The day of my last exam in May I moved away from home.  I had signed up for a college course which started in September.  I got a part time job and got more and more down.  The guy I was seeing was not a very nice guy but I was so depressed I could not see a way out.  I continued to skip meals and lost more and more weight but was still convinced that I was fat.  I would spend each morning in bed not able to face the day, go to work and then drink too much in the evening.

When college time came around I managed to scrape my way through 2 weeks but had to drop out because I couldn’t cope.

I decided that I needed another job to justify my existence.  So I got another part-time job.  And then another.  I was working 7 days a week during the day and doing 3 night shifts as well.  At this point I was surviving on grapes and polo mints.

One day at work I got this terrible pain in my stomach, then my hearing went all muffled, then my sight went, I shouted for help (I was working on my own at a cart in a shopping mall), someone came over and asked if I was alright.  The next thing I remember is lying on the floor with the paramedics asking me questions.  They couldn’t get a proper pulse and took me to hospital.

I was referred to a psychiatrist who diagnosed clinical depression with anorexia.  I had to see the psychiatrist every day to start with, getting weighed every week.  He started me on Prozac.  This time I felt sick for the first two weeks but none of the strange effects it had the first time.  When seeing the psychiatrist one day I got a strange feeling, I can’t put my finger on what it was but I decided that weekend to take a trip down south to visit relatives.  It turns out when I got back he had been considering sectioning me under the mental health act.