I want to tell you about how depression has effected me over the past year. I’ve experienced depression & anxiety with a good helping of agraphobia most of my life but I’m going to try to focus on the last year as much as possible.
Although I suffer from depression & anxiety I’m a walking contradiction, as when things are going well I thrive on public speaking & generally voicing my opinion to whoever will listen. You just have to follow my twitter timeline to see this.
Before all my success last year I had been in a very dark place indeed but things were improving as I’d had a full gastric bypass losing over 12 stone in weight thus regaining some of the mobility I lost due to a car crash in 2008. I went on to be nominated by my NHS Trust for the Patient Leader Program run by The Centre for Patient Leadership which opened up my mind & got me realising I had some leadership qualities that I just hadn’t realised due to my lack of self worth.
I completely embraced this programme as it challenged my notions on what leadership is all about. It gave me new found confidence & I could see the potential in the concept of empowering patients to lead change, not be passive recipients of change.
I also saw that social media was essential if I really wanted to achieve meaningful change through connecting & working with others.
I went on to share my knowledge of social media with @JustineNHS whom I met through twitter, we founded #twitterschool hashtag to help encourage more NHS staff to embrace social media as a tool to connect them with their colleagues & patients who were already making the most of social media. Through these free classes our aim was to show the positives of collaboration through social media & provide a hashtag to introduce them to twitter. Dispelling the fear of the unknown & showing the possibilities it can bring was key, plus I like to think we made it fun too!
The whole time all this was happening my depression and mental health hadn’t miraculously vanished, it was always there, sapping me of my energy, ability to focus and continually plaguing me with negative thoughts about my ability to hold it together or succeed in general.
However, I did hold it together, but the cracks were starting to show as I was neglecting the basics. You see it completely sapped me of energy making even small tasks seem insurmountable, yet I seemed to manage to get the big things done such as writing presentations and delivering talks on my personal experiences involving leadership, patients experience, collaborative working, social media and highlighting the growing movement of Patient Leaders which I’m very passionate about.
Looking back I neglected to talk about my current mental health symptoms as I just wanted to show I had the same abilities as anyone else and was “strong”.
I felt talking about my mental health would detract from the important work I was doing. I didn’t want people’s sympathy or pity either!
After NHS Expo I applied for and was accepted to join an “Expert by Experience” group put together by The Kings Fund as part of the independent Future of Health and Social Care Commission, lead by economist Kate Barker & found on twitter with this hashtag #BarkerComm
I met some incredible fellow patients and carers in the group who bought various expertise to the table. I felt incredibly honoured to be among such talented & experienced people.
It was a very challenging process but extremely rewarding in equal measure. I found myself drawing on the leadership skills I’d learned especially the skill of listening and understanding others points of view.
I feel I was at my best when doing this work and went on to be asked to talk at the launch event of the much anticipated interim report on 24th April 2014 at The Kings Fund.
I was at my highest point when doing this work; I truly thrived on it. My talk and blog on the report went down extremely well in the room and on social media leading to me being asked by The Kings Fund to do a talk on leadership at their Change Leaders event that they were putting on for senior managers and staff in the NHS.
So all this success was extremely gratifying. I felt a new found confidence in public speaking and enjoyed talking about my experiences.
However my depression started to really kick in again and my sleeping was becoming even worse than usual. In fact I remember at NHS Expo 2014 rushing to make day two of the conference where I sat down unbeknown to me next to one of my twitter idols @andrewspong. I soon realised who he was and intoduced myself before realising I’d arrived still wearing my PJ top, which made for interesting conversation!
So with my sleep pattern becoming increasingly erratic, I found it extremely hard to accept anymore speaking events. I feared falling apart as the lack of sleep was making me increasingly unstable and I knew it! I’d like to stress this particularly bad bout of depression wasn’t linked to what I was doing. Depression in my experience seems to rear its head with no apparent cause or reason. It almost feels like a cycle that over time I hope to manage but that only comes with more experience I suppose.
I insisted I could no longer do anymore public speaking knowing I was sacrificing something I really enjoyed doing but I knew I had to sort my sleep out so taking time out was right for me.
I got myself readmitted to mental health services and insisted on them giving me some medication so I could finally get the sleep I needed & get back to a regular sleep pattern but I was told after 3 months of waiting that no medication would work as I was already taking existing medication. All I wanted was to be seen quickly & given something to aid my sleeping difficulties but instead I found myself coming up against barriers that only delayed my treatment.
Five months on & following considerable decline in my mental health I finally got the meds I needed. It took me two referals & senior NHS staff whom I knew, to intervene so I could get the help I needed.
The new medication to my surprise worked incredibly well & I now sleep much better at night without waking up at silly o’clock. If only I could’ve had this medicine when I first asked for it months before.
The problem was that due to 5 months fighting depression and the system for treatment, I had continued to decline & although sleeping very well I was in the grip of severe depression feeling I had blown my only opportunity to be a success. I certainly no longer felt like a leader anymore. I was a failure yet again, yes I’d achieved much but I felt I just wasn’t made for this world. I hated myself again & continued to fall into a pit of despair.
I had neglected my personal hygiene & due to not even cleaning my teeth ended up needing extensive dental treatment & teeth pulled.
When depressed, your cognitive function is completely screwed up. I kept trying to read emails but couldn’t concentrate enough to read more than a few lines. In fact just opening my email app was becoming extremely hard as I was in full avoidence mode which is part of my PD diagnosis.
Although I consider myself intelligent & enjoy academic learning I also have issues with my cognitive abilities. After my father died in 1998 when I was 17, I went from recreational drug use to full blown heroin addiction before finally becoming drug & alcohol free in 2007 so my cognitive function could well have been effected by the copious amount of drug use but when depressed my symptoms are more prevalent so whether it’s from previous drug abuse or not, my cognitive function becomes much worse when in the grips of depression, so I strongly believe depression plays a big factor in this. (Also my previous drug use was a way of coping with my MH conditions).
Examples are I get names mixed up & words too. I also find it hard to follow conversations at times.
My thought processes tend to get jumbled & as my very good friend @allyc375 will tell you it can lead to some classic lines she often reminds me of, which make us both laugh!
In fact this brings me to the final stage of my most recent recovery. After many false starts I’m communicating with my very good friends via twitter & as you can see, I’m finally able to concentrate long enough to write this blog!
So this brings me to the end of my blog & I hope it goes some way to helping you the reader to either understand my perspective of depression or if you’re a fellow MH sufferer/survivor like myself you can identify with some bits, but I know we all experience mental health in our own way so possibly not all I’ve described.
Thanks for reading!
Dominic Stenning aka @Patient_Leader