Finding HopeAn Assessment With A Difference
Posted on October 28, 2020
Over the summer, I received a letter from the local Neurobehavioral Unit. My GP had referred me to them for specialist support for pain (joint pain and pain in general) and I had an appointment with a psychiatrist there who specialises in and has done extensive research into hypermobility, pain, fatigue, and anxiety. I had no idea what to expect or what I was going to get out of it but I’m always willing (even if sometimes a little wary of) trying new things that might help.
My GP had recommended I have a full set of blood tests first so that we had the full, up to date picture before the appointment so I had that done at my local doctors’ surgery. I was a bit nervous about going – with the pandemic and all – but it was quick and easy. I was in and out in less than fifteen minutes. We got the results back a week later: for the most part they were good (my iron is back within the normal range, which was the problem last time) but my Vitamin D was seriously low, so low that I’ve been prescribed a ten week course of Vitamin D supplements.
And then this week, I had the actual appointment.
It was an online appointment but the conversation felt surprisingly easy and natural. Dr J (I’ve decided to refer to her this way to protect my privacy, even though doctor-patient records are, of course, confidential) introduced herself and we talked a bit about her work and what we could potentially get out of the session.
We talked about my Autism diagnosis and she had me do a series of movements with my hands and arms, all of which confirmed a diagnosis of hypermobility. As far as I’m aware it was in the notes from my Autism assessment but it hadn’t been officially diagnosed in its own right. She told me that people with a diagnosis of hypermobility are seven times more likely to have a form of Autism. Seven times! She asked me lots of questions about pain and fatigue (both of which I seriously struggle with) and went on to explain that hypermobile people have weak core muscles which often results in fatigue and pain in other areas as the body compensates. That makes so much sense. It’s all so fascinating to learn. The more I learn about the things I’ve been diagnosed with, the more I understand how they’re all part of a bigger picture, how they link together like the strands of a spider’s web or stars in a galaxy. It all gets clearer and I feel less overwhelmed and less lost; it feels like seeing order in things that used to look random and that is so incredibly helpful. All of the things I struggle with often make me feel broken and moments like this help me in the slow shift from ‘broken’ to… ‘incompatible,’ or something like that. Something less personal. Is it a program’s fault if it isn’t compatible with the computer? No. And with that in mind, it all becomes more about problem solving and work arounds and less about right and wrong. At least, that’s the concept I’m trying to work towards.
She said she would write to my GP and have me referred for pain management, specifically for hydrotherapy. I’ve just started swimming again – Mum and I finally managed to find a pool with a set up that feels safe, or as safe as is possible right now and safer than the others we’ve spoken to – so that would be perfect; I would love to do it, to get fitter and stronger through exercise I enjoy (and that doesn’t cause me ongoing physical pain). I don’t know if it’s available right now – with the pandemic and social distancing measures – but I can’t wait to do it whenever it is. But in the meantime, Dr J recommended some exercises to do in the pool, as well as some very gentle floor based core-strengthening pilates.
She also asked questions about sensitivities, allergies, hay fever, dizziness on standing, lightheadedness, and symptoms like that. I’ve definitely experienced all of those, although not all consistently. When I’d answered all of those questions, she recommended I have a heart rate test and a blood pressure check and said she’d include that recommendation in the notes she’d send to my GP. If they showed numbers within a specific range, given the other symptoms we’d talked about, that could apparently give us another area to explore, health wise.
We also talked about my anxiety and the medication I take for it. She suggested an alternative that might be better suited to my situation so that’s something we’ll discuss with my psychiatrist when I next speak to him.
So Mum and I learned a lot and we have plenty of avenues to explore…
- Continue swimming, adding in the exercises she suggested to strengthen my core muscles.
- Pursue the pain management route, particularly hydrotherapy (as available with the lockdown).
- Try gentle pilates exercises for core muscles.
- Get a heart rate test and a blood pressure check and see where that leads us.
- Talk to my regular psychiatrist about the other anxiety medication.
To be completely honest, it was a bit of a strange experience. I mean, it was really helpful and productive but it was odd for a very specific reason. It was easy. It was a conversation. She asked me things and I answered them. She believed me; she offered lots of advice and suggestions; she’s writing everything up and sending it to my GP. It wasn’t a fight… when up until now, it’s always been a fight. It was this beautiful, precious thing: to ask for help and have someone give it to me, with kindness and understanding and generosity. There will be more fights, I’m sure… more battles, but for now, I’m going to hold onto this feeling and memorise it so that I have it in my pocket like a touchstone for the next time I have to fight to get someone to stop and listen.
Musicians And The US Election
Posted on October 17, 2020
I think it’s safe to say that a significant number of us, in the US and abroad, are terrified of what will happen if Donald Trump wins the upcoming election and so a vast number of public figures are becoming more politically vocal than they ever have before, at least as far as I can tell. People from all kinds of professions are speaking out and sharing their views, sharing information, and encouraging people to vote. And for what feels like the first time, there’s a lot less of the ‘vote according to your beliefs’ and a hell of a lot more ‘vote Biden because voting for Trump will cause irrevocable damage, including the deaths of thousands of people.’ Personally, I’m grateful for that. It’s one thing to tell people to vote for the party they believe in when the parties just prioritise different aspects of society, it’s another when people’s lives, their families, their very homes and livelihoods are at stake. This isn’t about priorities; this is about turning a blind eye to greed and corruption or putting people’s lives above all else. Because that’s what this will come down to. Donald Trump does not care for the American people and that will affect everyone in America, regardless of whether you voted Democrat or Republican.
I accidentally went off on a bit of an emotional tangent there. What I really wanted to talk about are some of the people making political statements and taking political action and how they’re going about it, specifically musicians…
Sara Bareilles – While Sara has never shied away from posting about politics, she has dedicated her social media almost entirely to politics in recent months. She tweets and retweets a lot of political discussion and resources and continually calls out Trump – and other Republicans – for their terrible behaviour. She also doesn’t just share the major, nation-wide stuff; she shares state specific stuff as well, which I imagine is really useful to her American followers. She’s unapologetically loud and it’s fantastic to see.
She also recently started the #MoreLoveCampaign – named after her recent album but apt for the current times – encouraging people to vote…
Taylor Swift – While Taylor is relatively new to talking about politics, she is absolutely serious now. She did post about and encourage people to vote in the last election but she didn’t publicly endorse Hillary Clinton, who she’s since said she supported. During a recent interview, she said that she felt her endorsement could’ve been damaging:
“The summer before that election, all people were saying was, ‘[Taylor’s] calculated. She’s manipulative. She’s not what she seems. She’s a snake. She’s a liar,’” the pop star told Vogue. “These are the same exact insults people were hurling at Hillary. Would I be an endorsement or would I be a liability?” She described how the attacks might have gone: “‘Look, snakes of a feather flock together. Look, the two lying women. The two nasty women.’”
She’s since said that, regardless of that, she regrets not clearly stating that she was voting for Hillary.
In the last two years, she’s become increasingly political but she is very strategic about it. She doesn’t post about it a lot on social media but then again, she doesn’t post a lot on social media at all. So when she does, it’s pretty big deal, especially if it’s about politics. She publishes targeted, impactful posts that, as you can imagine, get a lot of attention, on social media and in the press. It’s a different approach to that of Sara Bareilles’ but with Taylor’s megastar status, that’s not surprising. It doesn’t make one strategy better than the other though.
She’s also recently been featured in V Magazine’s Thought Leaders Issue, which included multiple public figures and their views on the election and encouraging people to vote.
She’s also talked about the election repeatedly in interviews and has even been including ‘vote’ cards in her merchandise deliveries as reminders to fans.
Maren Morris – Maren is another musician who has been consistently posting about politics on social media. I don’t recall seeing anything that directly states she’s voting for Biden but everything she posts and reposts, tweets and retweets implies that she is: she’s talked about having a voting plan, the debates, voter suppression, publicly (and I assume privately) mourned Ruth Bader Ginsburg, shared posts about how Trump’s people were manipulating photos and videos of support, and so on. She’s not sitting back and staying quiet as country artists are so often encouraged to do.
But I think her biggest contribution has been her recent song, ‘Better Than We Found It,’ and its accompanying music video. The song itself is more general in its message, a message of always striving for a better world, but certain lyrics – “When the wolf’s at the door all covered in blue,” “America, America, divided we fall,” and “God save us all from ourselves and the Hell that we’ve built for our kids, America, America, we’re better than this” – point to this specific moment in time. It’s a very powerful song but the music video is more powerful still, highlighting three different stories, all far too common today: two young Mexican boys, beneficiaries of the Dream Act, who are being forced to return to Mexico; footage from the Black Lives Matter protests; family members of Daniel Hambrick, who was shot and killed by Nashville police in 2018, talking about his death. It’s a very emotional video. It makes me cry every time I watch it; I cried just writing about it.
As well as spreading an important political message, some of the proceeds from ‘Better Than We Found It’ are being donated to the Black Women’s Health Imperative.
You can listen to/buy the song here.
Halsey – Halsey has always been an activist but it’s never been more obvious than it has over the last few months. She marched in the Black Lives Matter protests in LA where she was hit twice with rubber bullets, going back the next day with medical supplies to help treat the injured protesters. She’s been very vocal about the movement:
“I’m mixed-race and white-passing, and part of the [Black Lives Matter] protests put me in a position where I was subject to being shot with rubber bullets, and where I was subject to violence. Part of the reason for my participation is because my family is Black. Every time I see a name in the news, it could be my family. Being subject to violence [at the protests] gave me a lot of perspective. I’ve always been a part of an activity like that since I was a pre-teen—I was in the streets for Occupy Wall Street—so I’m a seasoned protester.”
She’s since set up the Black Creators Funding Initiative to award $10,000 grants to Black artists.
She’s been featured in V Magazine’s Thought Leaders Issue and was on the cover of Time Magazine as one of their ten Next Generation Leaders. She’s constantly using her social media accounts to share information and resources about the political situation and the election, as well as challenging those who share problematic or hateful views, and she’s currently releasing a series of videos where she discusses different elements of American society with Bernie Sanders, while encouraging viewers to vote.
“You vote for humanity, or you don’t,” she says. “You vote for a racist or you don’t. That’s the black and white of it to me.”
Of course, there are multiple others in the music industry doing the same or similar, including Carole King, The Chicks, John Legend, Cher, Madonna, James Taylor, P!nk, Billie Eilish, Lin-Manuel Miranda, and so on. I chose these four because I know more about what they’re doing and so can more personally speak to their actions and motivations and also because writing about everyone who has been getting involved would probably result in this post going up after the election…
And a quick side note:
It also makes me really happy and proud that some of my favourite actors (including those behind some of my favourite characters) have also been using their platform to encourage people to vote and especially to vote for Biden. For example…
Mariska Hargitay (Olivia Benson from Law & Order: Special Victims Unit) has been posting consistently about the election, endorsing Biden, and providing resources through her social media. She’s also engaging with (the respectful) people in the comments about why Biden is the better choice and why Trump getting in again will be so damaging. Given what I know of her as a person through interviews and so on, this doesn’t surprise me but it means a lot to me to see someone I respect so much putting so much effort into this.
And Chloe Bennet (the actress behind my absolute favourite character ever, Daisy Johnson from Agents of S.H.I.E.L.D.) has also been very vocal about the election and about voting Democrat.
She’s been politically active for as long as I’ve been aware of her, and longer if you scroll back through her social media. Something I particularly like and relate to in her approach to politics is that she’s equally as emotional as she is thoughtful and strategic. She gets sad and angry and she rages about the unfairness but she also finds ways to help and engages with organisations (even co-founding one, RUN AAPI) that will improve people’s lives. I think a lot of people need to see that: that you can be emotional about it but that that doesn’t have to leave you frozen. You can both feel and act.
She’s also been calling out Trump for almost as long as she’s had social media, the earliest one I could find being in 2013. If we didn’t know already, I think we could safely say who she’s not voting for…
It’s hard to be in the UK and not be able to do anything, as far as I can tell. We can speak out on social media, share resources for our American friends, and so on, but we can’t actually DO anything. It’s scary and I know I’m not the only one feeling helpless, waiting for this one moment that will change everything, one way or the other, without being able to affect the result.
Celebrating My 26th Birthday in Lockdown
Posted on October 3, 2020
When we went into lockdown in March, I never thought that I’d be celebrating my birthday (roughly six months later) still in lockdown. I just hadn’t thought that far ahead. I know that lockdown has loosened over the last few months but I still don’t feel as though it’s safe enough or socially responsible to do something as casual as going out for my birthday when, fingers crossed, I’ll have many more. So we had to get creative with the birthday celebrations but I feel like I still followed my birthday rules and feel good about how I celebrated my birthday even though it was a bit different than I’d have expected it to be.
So, to refresh our memories, these birthday rules that I discovered several years ago are: do something you wouldn’t normally do and buy yourself something you wouldn’t normally buy. So here we go…
Rule #1: Do something you wouldn’t normally do.
Finding something to do at home was a bit of a challenge because, after six months of staying inside, we’ve really done everything possible to do, from the mundane to the more interesting. So I did find it hard to come up with something. But then I had a sudden flash of inspiration. We always have homemade cake on birthdays but we thought that, rather than going out to do something special, we’d have something special brought to us and so we ordered a beautiful, more extravagant cake for the day of my birthday (we will still have homemade cake because it’s a family tradition – we’ll just do it later on). I got to choose it and I was very excited for it to arrive.
I had classes (online) all day on my birthday but when I came downstairs after the second one, this beautiful cake – chocolate cake, chocolate icing, and maltesers (available here from Betsy’s Bake) – was sitting on the counter. I had a couple of hours before my next class and one of my parents dropped in briefly for what we had officially named ‘the cake break.’ It was really, really good. I had cut myself far too big a slice to get through (it was very rich) so I tucked it away and did my last class of the day, before having dinner and finishing it off.
Because there was much more than we could eat ourselves, it was really fun to share with people and witness their excitement and enjoyment. That was a really nice part of it that I hadn’t expected, thinking we’d get through it all as a family. In general, I think I prefer our simpler, homemade cakes but I did really, really enjoy this as a fancy birthday treat, which, afterall, was the point.
Rule #2: Buy yourself something you wouldn’t normally buy.
Having received the two big items that I would have chosen to spend money on for my birthday (and technically I am contributing to the electric guitar because it is an expensive purchase), I was a bit lost as to what to do for this second rule. I feel very fortunate for my birthday presents but I have also really come to enjoy this tradition and so I still wanted to buy myself something I wouldn’t normally buy; I just wasn’t sure what to buy as there weren’t any big things I wanted and it would be a waste to buy something I only just kind of wanted. So instead of buying one thing, I looked at what I’d spent in previous years and once I had an estimate of what to spend, I decided to dedicate that money to my attempt during lockdown to finally finish decorating my room. It does mean these things won’t all arrive at once and it won’t be the traditional ‘the thing has arrived!’ but if there was ever a time to bend rules like these, this is it.
I haven’t spent all of the allotted money yet but so far, I’m getting a suncatcher, some sea glass to put in jars to place around the room, some small prints to go on the walls, and a cool candle. I’m not sure what else I’ll choose yet but I’m so excited to have my room start to feel truly like my space. It’s gonna be so great.
This is the guitar that was my main birthday present, which I’m paying for in part because it was pretty expensive.
My actual birthday was A LOT. I had some lovely messages and cards and gifts from family and friends and the amazing cake so there was a lot of good. But it was also very hard work. I had three university classes, one of which was kind of like a personal development seminar and that got very emotional. I felt drained and completely exhausted afterwards, even though it had been a positive experience. But it was hard and upsetting to dig so deep. Plus I have this weird anxiety about turning twenty-six when I feel like I haven’t done all the growing I’m supposed to do at twenty-five due to the pandemic. I ended the day falling asleep on the sofa with the beginning of what turned into a several day long migraine. So, yeah, it was a lot. But I do genuinely think I will always look back at it and remember a really good, really special birthday.
Finding Hope 