Woah, it’s February, when did that happen?!
I had a quiet festive season and new year. This was the year that it dawned on me that my partner did not care if I went to bed before the bells. As it happens we were both old cold by 11pm. A good night’s sleep: sponsored by quetiapine and him being raised by his grandparents, respectively. Sandy believes he has wasted the day if he’s not up by 6am at the latest. Due to this the cats are regularly fed at his 4am rising, so, whenever he’s away and I finally crawl up at seven they are NOT impressed. He’s been away a lot this month. First a week down in Wokingham for work and then off to Brussels for a tech conference. This was the longest time I’ve spent by myself in seven years and I survived just fine.
My aunt had a very bad health scare over the last few months. We were told to expect cancer but turned out to be an illness so obscure it was once the plot device on an episode of House. Or so Sophie tells me, I’ve never watched House. Thankfully, it’s nowhere near as serious as cancer but still no fun at all. I left my student fundraiser job as getting home at 10pm was messing up with taking my pills and leaving me exhausted and not able to support my family as much as I’d like. I had wonderful co-workers and supervisors who were incredibly chill with me having schizophrenia so I will miss it. Somehow ended up coming top fundraiser. This entertains my family no end as I was very shy until my early twenties. I’m happy I can be there for them more now.
Exam results are in. Somehow sitting with an overall first. This is very surreal as I did horribly in school. Also I find concentrating really difficult. My aim is to get a 2.1 so I will not be devastated when my GPA inevitably begins to go down a bit. I am so bloody happy I’m even still alive most of the time that everything else seems a bonus.
My wound from surgery on January 11th has still not healed and I’m off running till it does. Miss running. Keeps me sane.
Had my first psychology exam of third year earlier today and I think it went OK. I was very grateful to have a distraction beforehand in the form of being invited along to a CUSP meeting. CUSP stands for Carer & Service User Subgroup and it seems that they are actively involved in training psychologists at Glasgow Uni and giving their wisdom towards the development of research. This kind of stuff gets me really excited as it is a genuine way of involving us folks that have experienced mental health in our care. The thought of people getting psychological therapy from people who have worked with CUSP makes me really hopeful for the future. I was meeting with them as a psychology professor at my university has kindly agreed to support me in applying for a grant to do research into welfare cuts and mental health. The group shared their experiences with me and whilst I listened fine I had a little rant after the meeting as the relentless cruelty folk with a mental health issue face within the benefits system fires me up. This was probably fuelled by my mum’s 6 point Personal Independent Payment decision (new Disabled Living Allowance) last week. She needed 8 points to qualify. I’m going to visit at the weekend to help her wash her feet properly as the lymphedema she has from breast cancer treatment is making that hard for her. Meeting a room full of perfect strangers and hearing how commonplace this brutality is really hammered home why I want to do research in the first place.
One thing that mindfulness practice has really helped me to do is manage my anger. I’m lucky in that I don’t do interpersonal rage and get on easily with people but I often feel furious at the state of the world. Furthermore, being (relatively) powerless to do anything about the amount of suffering that goes on means continuous rage would be a pointless endeavour. I did some meditation on the number 3 bus home at rush hour. The guided meditation I used to do is Headspace’s mindfulness for commuting but I’m now at a stage in my practice I can just zen out (for lack of a better term) when the need arises. I’m glad I can control my anger and instead channel it into useful things such as WestGAP and hopefully this research project. Depending on the funding. Considering doing it for free as I’ve somehow managed every other university summer by being super careful budgeting and I’ll be volunteering doing data entry stuff anyhow. Whilst it would be nice to be paid I’m more keen on getting the grant as the stuff will be published and hopefully get some sort of attention. I genuinely think many people if they could see the stories beyond the benefit scrounger narrative might change their minds. I had a ton of internalised stigma when I was claiming sickness benefit that was hard to overcome but I got there. Despite being mad at the world I am a ridiculous optimist at heart, clearly.
I visited my gran in law in her care home on Sunday again on Sunday. My partner was raised by her so she’s my mum in law, really. Was so happy to see she has made new friends and that the staff are pleasant and try hard to provide a stimulating environment. When I arrived they were watching a documentary on communism and then decamped for a Christmas party with a loaded bar. On my next visit I’m hoping to personalise her room a bit so it feels more like home for her as she is missing her photographs. I bloody hate leaving her in there as she has stated that she doesn’t want to be there and I know what that is like. She almost died of hypothermia in AUGUST due to lacking the capacity to take care of herself so at least we all know she is safe there. I must admit I was worrying a lot when I called and couldn’t get through. Love her loads. She has experienced poor mental health for most of her life and I wish she had the support that I have gotten. Hopefully, with insight from folk like CUSP generations younger than myself will have even better treatment.
My Argentinian friend’s mum is staying with my partner and I for a few days as she cares for her daughter/neighbour/dear friend who is recovering from surgery. She’s really lovely and has awesome stories to tell. I’ve been enjoying having her over and am going for a coffee tomorrow morning to show her some more of where we live. I struggled to speak to new people when I was really psychotic. The fact I can now have someone I don’t know at all staying in my home is lovely. My partner and I are very privileged to have a spare room and are so happy we can help out.
I feel that so far this blog has had a very individualistic focus on recovery. Here is what I have done to make MYSELF feel better and etc. Is it this simple though? I’ve recently had the honour of meeting with an academic who is interested in attachment theory. This led to me being very reflective upon my recovery and to see it almost in a new light. Would the meditation / healthy eating / exercise have been as much useful without the support from those around me? I doubt it. I hadn’t even thought about trying mindfulness until it was suggested to me by my psychologist. The tone of this blog might be changing.
I was very lucky to have friends who came to visit me in hospital. Other patients would remark on how lucky I was to have people who wanted to see me. I was lucky indeed. Psychotic Steph was no fun to be and probably no fun to be with. Still, they came to Parkhead hospital to keep me company. They helped me rediscover who I was without the schizophrenia and were an important part of my recovery. I was of course grateful at the time and since but I haven’t thought of it as being incredibly important. Nice of them to do of course but perhaps not as important as drugs? Those lonely people in the hospital probably had as much of a chance to recover as me, right? Now that I am actively reading research in the subject I’m not quite so sure.
Maslow’s hierarchy of needs is a psychology staple. Someone wittier than me has made the following graphic:
This popped into my head thinking about the others in the hospital with less contact from friends and relatives. We were all getting the same food, shelter and also the shared security of the ward environment. We were all being given some form of medication too. Sadly, there was no Wi-Fi to be had though! We began to differ on the tier of belonging. Psychiatric hospitals can be weird places. Many people in them but it is very easy to feel alone as people have different ages, personalities and diagnoses. Also many of these people aren’t in the mood to be making new buddies which is totally understandable.
Relationships become super important upon discharge as many people with mental health issue may need support with eating and keeping safe so the Belonging tier mediates those below. I was excited to find this article by Ellerby (2013) which discusses this idea quite eloquently in the context of compassionate recovery. It is also an article in a journal which is A) written by someone with lived experience of schizophrenia and B) FREE TO ACCESS. Be still, my nerdy heart.
So, what is the answer to this? My friend (and fellow psych undergrad) Alan volunteers in a locked ward in Glasgow. He has never been treated in this environment so whilst it’s not peer support he seems to have a positive effect on the patients from what he can tell. I could believe this this. Some of my happiest memories in the ward (besides visits from family + friends) involved chatting to nursing students. Whilst all the qualified staff I encountered on the ward were indeed lovely it was a formal relationship. With the students I could relax a little. I might have been unwell but I was still my goofy self. Having the presence of someone who you know isn’t paid to be there but is just there as they want to be a nice human being might be an idea. Volunteering is such a cool thing. This is why I get so angry at things such as the work programme as forcing people to work for benefits is a bastardisation of people who actually do want to give up time for the good of society. Finally, some political chat made it onto the blog. Of course the plural of anecdote is not data. The plural of anecdote is doing some bloody research!
I really want to do research. Ever since I got unwell I’ve made sure all the bad stuff wasn’t pointless. I’ve helped people with mental illnesses get their benefits. I’ve outed myself on national radio (twice, in case anyone missed it) despite it being petrifying because wanting to change the world in regards to mental health stigma means starting with yourself. I remember sitting in my hospital bed some point during my last hospital stay and promising myself that if I ever got well enough to study I’d do psychology and try and help people with schizophrenia. I adored the psychology module that I did as part of the radiotherapy degree and was keen to have that be life plan B. Five years later and I’m hopefully on a path to that. Path is the wrong word as It suggests a lonely journey. I’m probably more on a busy section of the M8 where both the road and traffic are the relationships than inspire me to keep going onward.
Had my first hangover in years on Sunday there. You know how I’m not supposed to drink? Well, my friend Lisa-Marie made some rather potent cocktails at her 33 1/3 birthday party. Having had what, I thought was a modest amount I was rather surprised to realise I’d lost motor control. Lying in bed all Sunday reminded me of the “lost” days I had when I was catatonic with psychosis. Being catatonic because of overindulging in fun is still a bit rubbish. Don’t binge drink. Unless you secretly enjoy throwing up in the street outside your door.
What’s the clichéd saying about these sorts of situations? “Never again!”
My 8km jog on the Monday was hellish due to still having dehydration. Proud I managed it but yeah. It was really hard. My muscles felt so terribly taut afterwards that I decided the time was right to invest in a foam roller. I’d love a massage but I’m poor so DIY it is. What does it do? Well… Self-myofascial release is a fancy term for self-massage to release muscle tightness or trigger points. This method can be performed with a foam roller, lacrosse ball, Theracane, or your own hands. By applying pressure to specific points on your body you are able to aid in the recovery of muscles and assist in returning them to normal function. Normal function means your muscles are elastic, healthy, and ready to perform at a moment’s notice.
The one I bought was a cheap model from TK Maxx but seems to be doing the trick. Both cats looked on amused as I contorted myself on the floor and up against the wall to roll it over areas of tightness. The pain. Oh god, the day after was so painful but I’m now feeling way less tight. I have to admit it’s not just running which makes me tense up. Having to exist as a person with schizophrenia in the environments that I do is a recipe for tense shoulders. Ignoring psychotic experiences that suggest something in the environment is out to get you is often exhausting. The muscles don’t know the problem isn’t real. They sense danger, adrenaline pumps into the system and the physical body is revved up and ready to go. I cannot recommend some kind of massage highly enough for those who store tension in their bodies. The relief afterwards is simply immense.
Since my student loan came in for the month I got a ukulele, a canvas and a pack of drawing crayons. This came to the grand total of £20! I’ve exclusively been playing songs from Steven Universe and it is such a lovely way to relax. Even if my finger tips now hurt from the taut nylon strings. Should it be an ukulele? That just sounds so wrong. The English language is weird.
Wow. The first week of university was more challenging than anticipated. Far from being a couple of lazy “intro” lectures (as it has been) I found myself trying to master a statistical programming language called R in two days. Despite ending up crying some frustrated tears over a stubborn error message I managed to get the hang of it. By that I mean the absolute basics but it is a start. Programming is something I’ve always wanted to do but felt intimidated by so this seems like a great way to learn. We were given the option of using the same statistics package we always have but I am a sucker for open source products. I can now even make it generate box plots.
As part of a Professional Skills course I have to write at least 40 pages about myself in a portfolio linked to my chosen career. I’m still angling towards being a counsellor but haven’t ruled out academia because reasons. More on those another time. I am determined to not focus entirely on having schizophrenia for my personal reflection but I am sure it will feature heavily. Indeed, it is the main reason I decided to study psychology in the first place and inspired me to keep this blog in the first place.
One of our two cats (Sonchi, the big massive bruiser that he is) keeps standing on my laptop as I am trying to write this blog. He is now staring at me wanting to be petted… BLOODY CATS. I guess they have given me brilliant transferable skills such as being able to handle finding myself forcibly awoken at 4am with good grace. My capacity to handle smells and general grossness has been taken up a few notches also. Pain too. Souzen, our female cat has the dubious honour of giving me my first facial scar. Since I started typing this paragraph Sonchi has fallen asleep next to me with his mouth ajar and fangs hanging out. He is the world’s fluffiest vampire.
Enough of the cats.
A classmate told me that drawing smiley faces on your work papers will make you feel happier when you see them. Didn’t have anything to lose do drew a couple. The first one looked a bit constipated more than anything else but the charm was there. I think it’s working. Consider this your mental health tip of the day.
My group for the presentation and qualitative study do seem really lovely. We are expected to develop a critical review for a single area of psychology and have decided to tackle if thinking about problems in a foreign language makes you more logical. Despite tackling the review from the “I have no idea what the devil I’m doing” method I’ve found a few areas which don’t seem convincing. I’ve also found a typo. Seeing as my own grammar and typing skills are notoriously awful it must be a glaringly obvious one and I’m somewhat amused it has managed to get into a big name peer reviewed journal. Coming back to my group – I was advised to speak to them about the speaking issues I’m having and they couldn’t have been nicer. Either that or they think I’ll make an interesting and career enhancing case study. We are studying psychology after all. The qualitative study will focus on what students think of their own sleep. I’m a massive geek so actually being able to do some actual research (even if the kiddie gloves are still securely on) is pretty exciting.
Stats lecture later today and a friend who is feeling a bit low has just asked to meet for coffee so I better get going.
My university didn’t let The Student Loans Company know that I have enrolled this year. Therefore, I had no money. Thankfully, it has been sorted but gave me no end of stress for three solid days. I have also been informed that I’m going on a two day outward bound adventure with the rest of my year group next month. This will be the first time I’ve went away without my partner supporting me every single step of the way. I very rarely leave Glasgow so going to Aberfoyle will be quite the challenge. I’m excited about trying it, though. Socialising with large groups of people can be difficult. I have a plan of attack though and phase one has commenced. I met with my disability convener last week to speak about the palilalia so people assessing me will be aware of it. Way less worried about it now. When I chat about my schizophrenia fighting tactics I sound like I’m sending troops to war. Kind of am though. Those tactics fight for me. If they didn’t I’d get nothing done.
They were on duty this weekend for sure. I was privileged to attend the wedding of Lynsey & Rodti at Summerhall in Edinburgh yesterday. The venue used to be the vet school of the ancient university and we celebrated in the old dissecting room! I cried a little during the vows. Happy tears. Our friend, Marcy, did a beautiful reading from Ann Druyan on her late husband Carl Sagan. I cried at that part too. Both Lynsey and Rodti are scientists (earth and computer, respectively) so it was especially poignant to have such a reading at a humanist ceremony. It reminded me that being a human being is such a strange and sometimes wonderful thing. Since my partner is hard of hearing I searched for it online and have pasted it at the bottom of this blog post as I’d like to share it with everyone. Despite arriving at the wedding in a highly anxious state since large social interactions are challenging my mental state improved by at least a million times once I was at the venue and amongst friends. The date was specifically chosen to fall on as near to the independence referendum anniversary as this was a cause dear to the couple. We might not get to celebrate independence day on September 19th but now we can celebrate their anniversary! That is pretty lovely.
Less lovely, however, was our iPad and laptop being stolen from the place we had been told by staff was secure for leaving bags. Whilst, in the past this would have caused so much stress and given me a guaranteed psychotic breakdown I think I dealt with it pretty well. Mental ill health or not – knowing someone has went through your belongings is not a nice feeling. We managed to hide this from the wedding party quite skilfully as not to put a damper on the best day of their lives. I was so full of gratitude when I realised their wedding present (a personalised bottle of mead) was safe and sound. My secret weapon in this situation was to use the grounding technique. This is quite simple and when I realise that the shit is hitting the metaphorical fan I focus on how my feet feel on the floor. I also like to see how many red things I can see in the room. Or blue. You can have any colour you like. This gives me a few seconds to bring myself back into reality and control my breathing – hopefully preventing stress leading to psychosis. The link I’ve attached is for PTSD but the method has worked well – getting me through some unpleasant experiences. Summerhall were wonderful and the duty manager helped us as much as she could. Luckily, as my partner is Mr. Security Guru all of our electronics are encrypted so our data is safe. No-one will be able to use them without our security keys… unless they sell it for parts.
The iPad was already becoming useful as a study aid as I suffer quite badly from concentration problems and will have a large volume of journal articles to read this term. It allowed me to create digital libraries and bookmarks. Despite having something like this taken from me I am acutely aware that the person who stole it is probably poor. I’ve volunteered with an anti-poverty charity for the past two years and many of the people who use our services are open about their life experiences. A few have been in prison for theft. All of them were varying degrees of desperate due to having been born poor and social mobility now in the dustbin of history. The person could just have been an arsehole (of course) but there is so much desperation around just now that I cannot help but wonder. I hope his life situation improves. I know his gender from what the manager saw on the CCTV. Regardless, this situation has not shaken me. The good outweighed the bad yesterday by a country mile. Seeing my friends as the happiest people in the world and being at the Jarvis Cocker table for the wedding reception will be what my brain places into long term storage.
Now for that lovely speech about Carl Sagan.
“When my husband died, because he was so famous and known for not being a believer, many people would come up to me-it still sometimes happens-and ask me if Carl changed at the end and converted to a belief in an afterlife. They also frequently ask me if I think I will see him again. Carl faced his death with unflagging courage and never sought refuge in illusions. The tragedy was that we knew we would never see each other again. I don’t ever expect to be reunited with Carl. But, the great thing is that when we were together, for nearly twenty years, we lived with a vivid appreciation of how brief and precious life is. We never trivialised the meaning of death by pretending it was anything other than a final parting. Every single moment that we were alive and we were together was miraculous-not miraculous in the sense of inexplicable or supernatural. We knew we were beneficiaries of chance. . . . That pure chance could be so generous and so kind. . . . That we could find each other, as Carl wrote so beautifully in Cosmos, you know, in the vastness of space and the immensity of time. . . . That we could be together for twenty years. That is something which sustains me and it’s much more meaningful. . . . The way he treated me and the way I treated him, the way we took care of each other and our family, while he lived. That is so much more important than the idea I will see him someday. I don’t think I’ll ever see Carl again. But I saw him. We saw each other. We found each other in the cosmos, and that was wonderful.”
I have schizophrenia. I am also a tour guide. With employment statistics for people with my diagnosis dismally hovering at a depressing at 8% I know I’m insanely (ha) lucky to have work at all. The tours I do are of the Gilbert Scott building at The University of Glasgow and also its history more broadly. However, as we frequently have tourists on the tours us guides more often than not end up being general ambassadors for Glasgow and recommending cool stuff to do in the city. I do feel a great deal of pride when I tell visitors that they can enjoy most of our wonderful museums entirely for free. Other than the occasional hoarse throat that comes from projecting my voice to a large group the job is pretty great for a student. Lovely colleagues, interesting and flexible. It is also incredibly part time which is super important as much as I love being able to do any form of work I need to balance my energy. My illness is being a right pain though. I am currently experiencing palilalia. Repeating stuff after I’ve already spoken it involuntary and in a spooky assed voice. Joy. Perhaps everyone just thinks I’m being dramatic? It is a job that requires getting people’s attention after all.
My friends and I experienced a transphobic hate crime on the bus in March. My trans friend was singled out for abuse and the other two of us for “looking like dykes”. For someone prone to paranoia this was devastating and my old fear of public transport being full of bombs temporarily came back. Seeing a long summer break stretching ahead in front of me with plenty of time to hide indoors and become more unwell I decided to make myself do something new. Make myself get out of my bedroom. A week later I attended a focus group asking what Glasgow students knew about The Student Representative Council. Turns out I knew very little and had no idea they had trained welfare rights workers or employed tour guides. Intrigued, I emailed for more information on this and a month later following an interview I found myself employed by them. We have a promo video for the tours and everything. The lady is not me but Stevie, one of my co-workers. I think I have the most stunning work place in the world at times. The university’s bell tower is over 85 metres high so it can be spied from all ends of the city and still catches me by surprise when I see it popping up on the horizon. Did you know the university was founded in 1451 and is the 4th oldest in the english speaking world? Well, you do now.
Tour guiding isn’t all I do though. I’m a psychology student. A psychology student with an aphasia ! (speech disorder caused by brain damage) Palialia is theorised to be caused by low dopamine levels. Seroquel, I’m holding you personably responsible for this. I have been on this particular antipsychotic for over five years now and am pretty worried that it is starting to really mess with my brain’s infrastructure. Seeing the psychiatrist on Tuesday so hoping to come up with a plan of action. Luckily, I’ve always had a good experience with doctors so I’m hoping a medication change or at least a rejig will be on the horizon. I only found out that I was even being allowed to be a psychology student a few days ago as entry to honours is competitive. Unfortunately, an exam was missed in December due to having found out my mum had cancer the evening beforehand and having a panic attack so bad I thought I was actually dying. Luckily, my course head was very supportive and allowed me to sit the exam later as a first attempt. Spent the whole summer nervous as not knowing what the hell I would be doing for the next two years is a bit of a drag. Even if my backup plan of studying sociology would have been AWESOME I had a long think about what I want to do with the rest of my life and felt I needed this degree. Even if it meant studying a lot of statistics. Prior to having the Big C my mum was a cash strapped single parent doing overtime to pay for me to have a private maths tutor for my higher. I failed. Spectacularly. Still, I just got an A for statistics and she no longer has cancer. It’s all coming up family.
As a treat to myself for getting into honours I bought myself some warmer clothes and bedding for autumn. My body appears to have settled down to a relatively stable size so it has been a good excuse to shed ill-fitting jeans. I’ve opted for two neppy material t-shirts in blue and brown which are slightly on the thicker side. I’m doing a tour this week which starts at an ungodly hour in the morning and since I’ve been told to dress casual I hope it keeps out the morning chill which has already came to us in Glasgow. Seriously, I could see my breath yesterday morning. Thankfully Primark had a sale on so I got a cosy duvet for super cheap. You know you are a skint student when you rely on the Primark sale. More university essentials have included pens, notepads and a reusable coffee cup to take out with me on the aforementioned cold mornings.
Really nervous about going back as schizophrenia has been a challenge this year and will no doubt battle me again now that academic pressure is just about to be ramped up a notch. However, I know that I won’t give up. It has been three years since I decided to take better care of my health. I detested myself so much for having developed schizophrenia that I thought I no longer deserved self care. I didn’t care what happened to my body anymore. Something changed though when I finally hit rock bottom. The changes which started off subtle have became very noticeable. So much so that if I bump into someone who I haven’t seen for ages they are visibly shocked. Perhaps the most obvious sign is that I have lost over 70lbs in weight. Whilst this will no doubt come up in my writing I don’t want this to become a weight loss blog. There are plenty out there (if that is what you’re into) which will do a far better job of discussing this issue than myself. I just wanted to feel better. I like to think even if I hadn’t lost a single pound (or had even gained weight) that many of the other healthy habits I’ve developed over the past three years would still have helped me feel less crap. You deserve good mental health no matter your size and shape. I look forward to sharing my journey. There will be recipes too. Every journey made on earth is better after something delicious.