Finding Hope19 for 2019 Reviewed
Posted on January 1, 2020
In January, I was inspired to try the 19 for 2019 challenge, setting myself nineteen goals to achieve by the end of the year. They didn’t have to be massive goals; they could be one off things to simply try. I was inspired so I came up with nineteen things and gave it a go. Unfortunately, I wasn’t aware of what a hell of a year I was about to experience.
- Stop pulling my hair out – Complicated. I’ve gone long stretches without pulling my hair out but then the stress induced habit has usually been replaced by another one. Right now I’m going through an incredibly stressful time and have recently started pulling again. Maybe next year’s the year.
- Read ten books – I read a handful of books early in the year but I didn’t really start to enjoy reading again until I read This Is Going To Hurt by Adam Kay. I devoured that: he has a beautifully personal writing style. Not long after that, I started my Masters Degree and I had an overly ambitious reading list so I read a lot. Plus, I had a phase of reading books from my childhood when I went through my bookshelf. So I definitely read more than ten books.
- Get a tattoo – I still haven’t managed to do this. I still like the thought of getting one and have multiple ideas but I really don’t like the way they blur over time. I don’t think I could bear to have a blurred tattoo on my body so I still haven’t gotten one.
- Continue swimming (or let it evolve) – There were periods of the year where I did manage this but sometimes the medication I was on meant I physically didn’t have the energy. And then when the kittens were born, I loved watching them in the early mornings, which was when I swam (before the gym got busy and stressful). Add in doing the Masters and what a drain on my energy that was, I haven’t been swimming half as much as I’d life. It’s definitely something I want to get back into in 2020.
- Write more songs – Given all the changes of medication (something that always seems to affect my songwriting) during the first six months or so of the year, I wasn’t able to write. I tried. I tried really hard and managed a few with the help of some wonderful cowriters. But now that I’m back on the Phenelzine, I am able to write again, alone and with others and I love it. For me, writing a song is the best feeling world; it’s feeling alive, it’s feeling connected to myself, to my soul, to the universe. It’s feeling real. So I’m writing again, as much as I’m able. And as I’ve started my MA, I’m writing for that too. I’m very aware of how much I’m learning and how much my songwriting is developing.
- Get my photo albums up to date – I did. And then they got out of date again. It was something I’d hoped to do over the Christmas break but I’ve literally been working on my assessments every single day. Fortunately my photos are well organised so when I have some time, it won’t be a terrifying task to attempt.
- Pursue the cause of my tiredness – I’ve tried. My god, I’ve tried. I’ve seen doctors and been to the Chronic Fatigue Clinic for a general session but that wasn’t at all helpful. I knew everything they told and have known for years and the other people there hadn’t been dealing with it for a fraction of the time I have been. So I didn’t feel very positive about that experience. I’m waiting for a follow up from them but I had no idea when that will be or how much it will help me.
- Improve my instrument skills – I barely did anything musical for a significant part of the year due to medication side effects and crushing depression so I’ve probably gone backwards in my instrumental skills. Having said that, I have been working on them since I started the Masters (particularly the piano so I didn’t have to carry a guitar up and down from London). So not a total loss. And hopefully this will continue as I continue with the Masters.
- Watch a meteor shower – In January actually, I did manage to catch a meteor shower and it was beautiful. I don’t think I’ll ever get over how magical meteors are; they’re just takes me breath away. And there was one huge one that streaked across the sky, like a knife cutting through the roof of a tent and letting in light. It was one of the most amazing things I’ve ever seen.
- Write more poetry – I did write a little poetry, but that was only during NaPoWriMo. Either my mental health was going down the drain or I was too busy writing songs for poetry. Why is there never enough time? Sometimes I feel like the world is moving really fast around me while I move at an ordinary speed.
- Finishing decorating and organising my room – I started to and then I somewhat undecorated it with the creation of the music video for my single, ‘Bad Night.’ While it’s mostly been returned to rights, there’s still some damage (a fist sized crack in the plaster that I haven’t gotten around to repairing). It’s just one of those things that’s always on the list but slips down to more urgent things. Hopefully I’ll get there at some point.
- Find an alcoholic drink I like – I’m now back on a medication that means I can’t really drink. The odd drink is fine but yeah, I can’t really drink. Before that though, I tried a lot of different types of alcohol and just really hated all of them. I also discovered that I’m allergic to limes, which are in a ridiculous amount of alcoholic drinks, including one that I actually did like. The one drink that I do enjoy is a passionfruit mojito even though it does contain lime extracts. So far, drinking them – and I’m not drinking them very often – doesn’t cause a reaction.
- Find a tea or coffee I like – Nope, they all still taste awful to me. I find it frustrating because drinking coffee is such a ‘normal’ thing and I feel like, having been denied so much by my Autism, it’s unfair that I don’t even get to be normal in this tiny way.
- Get invisible braces – Success! I was fitted for invisible braces and have received the first half of the set. I did really well at wearing them for a while but during the second half of the year, I haven’t done so well. It just felt like too much when I was struggling with serious anxiety. I’m hopeful that, with what seems like a less stressful semester starting January, I’ll be better at wearing them.
- Go rock climbing – Nope. I would’ve loved to but again, all the medication and energy stuff made that impossible. Another dream for another year.
- Participate in FAWM – I tried really, really hard to take part in February Album Writing Month but as it was (obviously) at the beginning of the year when I was trying different medications and therefore really struggling with my writing, I didn’t get far. I made several solid attempts and wrote several parts of songs but I didn’t manage to write even one full song.
- Participate in NaPoWriMo – Again, I tried and did write some poetry but nothing I was terribly enthused by. And I wasn’t particularly consistent and didn’t do it everyday but I tried. I tried.
- Donate blood again – I would’ve loved to have donated blood again but a lot of the medications made me ineligible to donate, which sucks because it’s something that’s really important me. So this is off the cards for the moment but as soon as it’s possible again, I’ll be back.
- Join the bone marrow register – Another one I’ve failed at. There’s just been too much health stuff and I’ve just been too unwell to think about it. Plus there were long stretches where I simply forgot. I want to do it so it will stay on the list until I manage it.
So it’s a pretty mixed bag and considering the year I had, I’m surprised I managed any of them at all. I’ve struggled throughout the year, especially recently, with how little I’m achieving and the frustration and anger and guilt that comes with that, that comes with living with mental health problems and a developmental disability. I’m trying to focus on the fact that, where I could, I tried. I tried to do as many of these things as possible.
Overall, an interesting challenge but I think I’ll try something different for 2020. I haven’t found the right kind of goal system yet so I’m just gonna have to keep looking and keep trying.
Stop Pulling My Hair Out (Attempt 2.0)
Posted on January 25, 2018
My first battle with hair pulling ended after about nine months when somehow, I managed to will myself to stop pulling. Finding my first bald patch, about the size of a 2p coin, had seriously freaked me out and so I’d been determined to stop. The first few days were absolute hell. It was like my fingers were magnetically attracted to my head and the longer I didn’t pull, the stronger it became. Have you ever held two magnets close enough that you can feel the pull between them? It was a bit like that but all through my body. I won’t lie, the thought of shutting my fingers in a door so that I physically wouldn’t be able to do it did occur to me more than once. I couldn’t concentrate on anything; my whole brain was focussed on not pulling out my hair. It becomes a habit and you do it without thinking about it so when you try to stop, you have to think about not doing it all the time, just in case you slip up. And then the need to do it just overwhelms everything.
I’m not sure that feeling exactly faded but I learned to compartmentalize: I managed to cram it into a box and think around it. That sounds impossible now. When I couldn’t do that, I tied my hair up in a ponytail and allowed myself to pull the hair out of that, the resistance from the elastic band fulfilling some of that need. But I wasn’t allowed to pull it out. It wasn’t perfect but it did keep me from relapsing. For a while, that is. I didn’t pull for over a year but then I started again. I’m not even sure why, if I’m honest. I think I was tired. I was tired of fighting it. The urge to pull hadn’t gone anywhere and suddenly I was back in that vicious cycle, pulling and pulling and pulling.
That was about eighteen months ago. I’ve tried all my old tricks: wearing a hat, playing with fidget toys, fiddling with my spinner ring. But so far nothing has really worked. The hat worked best but the anxiety of not being able to get to my hair almost sent me into a meltdown and at the moment, pulling out my hair is the lesser of those two evils. I guess it’s not surprising, considering the amount of anxiety I’ve been dealing with recently.
In the last couple of weeks, I tried (again, hence the 2.1) to stop. In some ways, I was lucky the first time round: when I was pulling, I tended to pull from a point that was hidden by my hair most of the time. I mean, it still sucked but at least I didn’t have to deal with anyone else’s reactions. But this time, I’m pulling from all over my head: my fringe, my parting, my hairline… Literally everywhere. I’m triggered by a change of texture in my hair, from smooth to almost crunchy (if you have any advice on ‘fixing’ this, please let me know!) and that’s not specific to one area. And that means it’s much more likely to be noticed. Maybe it’s vain but that’s my motivation for stopping and I figure any motivation is good motivation.
So last week I tried to redirect my pulling away from my parting and my fringe. I was ‘allowed’ to pull from other areas but not from those two. I thought I was doing okay until I realised that I was chewing the inside of my cheek, with the effort or the redirected urge I don’t know. I stopped as soon as I realised, although not before it had bled quite a bit. Again, I thought it was all okay until a day or so later when the inside of my cheek started to hurt. I figured it was just healing but within a few hours, the pain was blinding. I’m writing this out and thinking, “This is ridiculous. You’re exaggerating. It was just a little gash inside your cheek.” I’ve always been sensitive to pain and easily overwhelmed by it but I don’t think that matters. In all seriousness, it was so bad that it made me cry (which only made it worse because, obviously, you move your mouth when you cry). It was that strong. For three days, it was so bad that I wasn’t able to do anything. I was barely able to eat, or drink, or talk. I almost cancelled an event I was looking forward to because the thought of having to talk and smile all evening was unthinkable. I woke up on that morning feeling a little bit better so I did decide to go but it was still very painful.
A few days on and I’m mostly pain free. That was not something I’d expected when I made the decision to try this again and it was really upsetting. I’m not sure when or what I’ll try next but I’m sure I’ll find something.
Conclusion: Failure.
Lesson learned: Be careful of where you redirect the urge and/or the effect that your attempt is having.
No, I Can’t Stop Pulling My Hair Out
Posted on October 1, 2017
I first started pulling out my hair in August 2014 and looking back at everything that happened that summer, it’s probably not surprising that I developed a compulsive behaviour. I was already struggling with my mental health and then, in the space of a few weeks, an important relationship fell apart and I had to have my cat (who I’d had all my life) put to sleep very suddenly. And I was just about to start university. I was overwhelmed by my anxiety and depression and in the lowest place I’d ever been. I was probably desperate to regain some control and when something started affecting the texture of my hair (my money is on the new medication, Phenelzine, which I’d just started taking), my inner perfectionist went into overdrive, tearing out the hair that felt different. At first I was fixing the problem – getting rid of the hair that felt different to the rest – but, of course, it grew back, creating a whole new problem. Then I was tearing out the regrowth, as well as the rougher stands, and the whole thing snowballed. Very quickly it reached a point where I felt like I physically couldn’t stop pulling, as much as I wanted to.
At that point in time, I didn’t know what Trichotillomania was and I’m still not entirely sure how I came across it but for those of you unfamiliar with it, I’ll give you a little summary. Trichotillomania is a condition where the person feels compelled to pull their hair out (whether it’s from their head or any other part of their body) and is unable to stop themselves from doing so. Although there are different theories (including mental illness, self harm, and addiction), there is still no known cause and there has been very little research into treating it. While checking my facts to write this, I came across a description on the NHS website which, for me, is very accurate to what it feels like: “They will experience an intense urge to pull their hair out and growing tension until they do. After pulling out hair, they’ll feel a sense of relief.” It feels like there’s electricity under my skin and it builds and builds and builds until I can’t bear it anymore; the only way to stop it is to pull out my hair. Then I can breathe again.
I tried to stop but I always ended up pulling again. It honestly felt like it would’ve been easier to break my own fingers than to stop pulling out my hair. It was only the discovery of a bald spot that shocked me into stopping. I don’t know whether it was vanity or anxiety about how out of control it had become but somehow that gave me renewed focus and motivation. I tried everything I could think of: sheer willpower, sitting on my hands, wearing a hat 24/7 (which, bizarrely, has become part of my image as a singersongwriter), fidget toys, jewelry that I could fiddle with. Ultimately I think it was a combination of these that helped me stop pulling.
I managed a whole year. The first few days were awful. The feeling of electricity under my skin magnified, so strong that I couldn’t concentrate, and I’m not sure when that started to fade. But it did. And slowly my hair grew back. But the urge never went away and just passed the year mark, I started pulling again. The relief was huge. And now, over a year later, I’m still struggling with it.
What I think many people don’t understand about this condition is that it’s not voluntary. I’ve had so many people tell me to ‘just stop pulling’ and that’s really upsetting to hear because I don’t want to pull out my hair. I don’t want to sit, surrounded by strands of my own hair. I don’t want this. I can feel myself doing it and I can’t stop. Sometimes I can stop that action but as the tension gets worse, I end up pulling again – it feels like an endless cycle of trying to stop but knowing that I’ll inevitably start again. It’s so hard. And if the bald patches, uneven length, and permanent damage to my hair weren’t enough, that’s only part of it. There’s an emotional impact; it’s not just ‘pulling out hair’. There’s shame, embarrassment, guilt, and frustration. I hate that I can’t stop, that I can’t seem to control my own body. (It’s also worth pointing out that I also struggle with physical pain in my arm and shoulder from the repetitive motion.)
But I’m not giving up. I’m not sure what I’m going to do next but I’ll find something new to try, a different angle to tackle it from. I won’t give up. I can’t, because I don’t want to live like this.
Finding Hope 