Finding HopeWorld Mental Health Day 2023
Posted on October 10, 2023
If you’ve been following me for a while, you’ll know that I find awareness days, like World Mental Health Awareness Day and Mental Health Awareness Week, really hard. I find it really frustrating to watch so many people – businesses, celebrities, every man and his dog, etc – jump on the #MentalHealthAwareness bandwagon just to show that they really do care about mental health, to prove that they are socially engaged and empathetic (before reverting to their previous routine of never discussing the subject). I have absolutely no problem with people not making it their primary social cause; I do have a problem with people trying to claim social credit by talking about it for one day a year.
I also struggle with the consistently vague annual themes that many charities and organisations stand behind. This year, the World Federation for Mental Health announced that their theme for 2023 is ‘mental health is a universal right,’ to which my immediate reaction was, ‘No shit.’ What is that supposed to mean? That everyone deserves to have good mental health? That everyone should have access to mental health support? Isn’t this blatantly obvious? The problem is that we’re stuck with outdated medical education, out of touch care providers, no support services, and no money to fix any of it. So how does this vague statement help? What does it change? We need more. We need better. We need support and education and resources. We need a government that cares about the people it serves, that cares about the wellbeing of the people it serves. But instead, we have a group of entitled, morally-bankrupt, evil narcissists who only care about money and power.
I’m sick of feeling so angry and I’m sick of feeling so powerless. I doubt there’s anything that can truly change that, aside from massive institutional change. But it doesn’t seem like that’s coming from the government any time soon so I’m trying to channel my focus and my energy and my feelings into doing what I can as an individual. The proceeds from my single, ‘Invisible,’ go to YoungMinds of course but that’s in place and I want to do more. I want to do everything I can. So, this year, I decided to raise money for Mind (Charity Number: 219830) by swimming 5km. Because of my hEDS, I knew I wasn’t going to be able to swim more than a kilometre at a time without potentially aggravating my chronic fatigue and chronic pain so I planned to do the 5km over a series of nights, completing the 5km in time for World Mental Health Day on the 10th October. There’s a nagging voice in my head that keeps snarkily pointing out that I should’ve been doing this for years but I know logically that I couldn’t even have done it last year because of both my physical and mental health. So I’m trying not to beat myself up for not doing it sooner. I’m doing it now.
I really had no idea what to expect in terms of raising so I set it at £150. That seemed doable since most of my friends are still struggling financially post university and we are all in a cost of living crisis. While this also affects the more financially established people in my life, I knew that there were people who were more able to help me achieve this. That, I think, is a big part of why I didn’t set a super ambitious target; the cost of living crisis is hitting everyone hard (apart from the incredibly wealthy Tory politicians, it seems) so I felt that raising any money at all was an achievement; I was deeply appreciative of every donation, whatever the amount. I figured out the details and set up my JustGiving page:
“For World Mental Health Day 2023, I will be swimming 5km in aid of Mind (charity number: 219830), a charity that supports those struggling with their mental health. As a person with Ehlers-Danlos Syndrome who suffers from chronic pain and chronic fatigue, I will be swimming this distance over a week in order to avoid worsening these conditions. It has taken me over a year to reach this point, where I am physically fit and healthy enough to do this, and I want to celebrate this and honour World Mental Health Day by challenging myself with this swim and raising money to support a charity that helps those who are struggling with issues that I have struggled with myself.
I know that times are really tough and that we are all affected by the cost of living crisis but even a few pounds can make a difference. If you can’t afford to donate, please help me to reach more people by sharing this page on your social media.
Thank you for reading this post and for whatever help you can manage. I truly and deeply appreciate it.“
And then it was time to swim the thing!
SWIM 1
The first swim was at the longer, lane swimming pool that I go to, which meant swimming fifty lengths to achieve the first of the five kilometres. I had, in typical fashion, slipped off an uneven curb earlier in the day (right before my first ever sponsored 5k ever, of course); fortunately I was fine, if a little sore, because I wasn’t changing the plan for anything. I’d swum the distance a few times already and found it a challenge but a doable one; I expected the same for each of the five nights. But it was surprisingly smooth-going. I was tired at the end, my muscles a bit shaky, but I was excited and energised by it; I couldn’t wait to do the rest of them.
SWIM 2
For the second swim, I was in the smaller pool, the one that’s more suited to and where I usually do my hydrotherapy exercises. It’s short – only 8.5m – so the amount of times you have to turn in order to swim a kilometre can get a bit tedious but it’s a beautiful little pool. This kilometre was harder. Given that it was the second of two nights swimming a kilometre, I was tired before I started and my arm and leg were actually more painful than the night before, presumably because I hadn’t been able to rest them post fall. So it was a bit of a struggle but I made it! Two down, three to go!
SWIM 3
I had a night off and then I was swimming again, another kilometre in the small pool. Having had a break and some time to rest my sore arm and leg, I felt better and stronger in the face of the swim and, unsurprisingly, it was easier than both I’d done so far. That said, I was exhausted by the time I was done and fell asleep on the sofa when I got home. My body definitely isn’t used to this. But it was very exciting to have passed the halfway point! And I was at almost £500 with my fundraising when I hadn’t even expected to break £200!
SWIM 4
For the fourth of the five kilometres, I was back in the long pool. Despite having a few days off, this one felt really hard: it wasn’t that the lengths felt longer but more that my arms and legs were heavy and tired and it took more effort to pull myself through the water. I think I got tired faster too. But I managed it, even if only just in time before I had to get out of the pool. Four kilometres in a week! Even though I was exhausted with another kilometre to go, I still felt energised and excited about going to the pool. And so motivated to finish the 5k.
SWIM 5
Because I’m me and apparently really can’t go a week without falling over, tripping on something, or colliding with a door frame, I managed to trip in the street on my way back from the pool the night before (because I was so tired, I think). I twisted my ankle and landed on my knee and although I hadn’t done any serious damage – thank goodness – I did go into the last kilometre feeling sore and a little wobbly. But I was so excited to do it, both to complete the challenge and fulfil the promise I’d made to Mind and to all of the wonderful people who’d donated. I was so proud to be earning that money, the total having reached £500 that morning!
1km later and I’d done it! 5km! It felt so good. It hadn’t felt as hard as the night before either, maybe because I was back in the groove, maybe because I was so close to achieving the goal and was therefore more motivated and noticed my fatigue less. Whatever, it was done and I didn’t feel too exhausted to actually get out of the pool. The lifeguard was really nice about it when we realised we confused the time of our slot and even donated before we left!
By the end of the day, with the swim completed, the total donation sat at £510. I was very, very proud of that, having never thought I’d reach such a number. And I was really proud of myself: I’d done it. I’d completed the challenge I’d set for myself. I’d swum 5km when, just several months ago, I wouldn’t have been able to swim half that. It’s a big milestone in terms of my fitness.
It’s been a really positive experience, even if – at times – I was tired or sore or anxious that I wouldn’t raise the money. So much work has gone into the week, into these five kilometres; it’s taken so much time and effort to get physically healthy and fit enough (plus in a healthy enough mental state) to do this. I’m really, really proud of myself for getting to this point and I’m really, really proud of completing the 5k; I can’t think of a better way to celebrate all of that than by challenging myself with this swim and raising money to support a charity as important as Mind.
There is still time to donate – the page is here – but at the time of posting this blog, the total raised is £620. That is so incredible to me and I’m so moved by the generosity of human beings and their desire to support each other. Thank you so much to everyone who has donated and to those who weren’t able to but shared the link, helping this fundraiser to reach a wider audience. While I’m sure there are many, many things that this money can go towards, these are some of the ways that the money we’ve raised together will help people…
As I said, I’ve been struggling with awareness days like this one for the last several years, feeling powerless and frustrated. But this year has been different and that’s because of this fundraising challenge. Not only am I proud of completing the physical challenge and blowing the fundraising target out of the water (that pun was originally accidental but it’s too funny to me to take out), I feel like I’ve made a difference. It might be a small one in the grand scheme of things but it’ll be no small thing to the individual(s) Mind is able to help because of this donation. So, with that in mind, Happy World Health Awareness Day. We made a difference.
A Fibromyalgia Diagnosis Was Not On My 2023 Bingo Card…
Posted on September 9, 2023
I’ve been trying to write this post for a couple of weeks now but I’ve been finding it difficult to accurately describe my feelings about the whole experience. To cut a long story short, I have been diagnosed with Fibromyalgia (on top of the Hypermobile Ehlers-Danlos Syndrome and Chronic Fatigue Syndrome) but, given my traumatic history with doctors and the medical system, it’s left me feeling shaken up and vulnerable…
Several weeks ago, I went to the hospital for an appointment with the Rheumatology Department. It was my annual follow up, post my diagnosis and then confirmation of Hypermobile Ehlers-Danlos Syndrome, despite it being a different hospital, a different doctor, and having had no support for it since the diagnosis. I was, let’s say, perplexed by the purpose of the appointment, given the lack of contact with them but apparently the appointment was important to insure that I wasn’t discharged from the system; I’m not entirely sure how being in the system is helpful (given the lack of contact and support) but I wearily (and warily – I’ve had so many traumatic experiences at the hands of medical professional that just walking through the door can trigger a panic attack or a meltdown) agreed to go.
I’m not sure the doctor knew exactly what the purpose of the appointment was either because he meandered through a series of questions without an apparent destination. But when he asked about pain and I described the ebb and flow of the chronic pain I live with day-to-day, he started talking about Fibromyalgia, whether I’d heard of it, and whether I’d ever been assessed for it. I told him that I had been and wasn’t found to have it, a snarky comment – “I thought doctors didn’t believe in Fibromyalgia” – slipping out. Over the last decade or so, my apprehension (read: trauma response and resulting severe anxiety) in medical situations tends to manifest either as becoming non-verbal or triggers a snarky, provocative attitude (depending, I think, on whether I’m more upset or angry – what determines that, I’m not really sure). That day, apparently, the snark was winning out. I don’t particularly like this about myself but the emotions are always so overwhelming that I feel about as in control of it as I do the non-verbal periods – as in, not at all. My therapist and I are talking about it but sixteen years of traumatic experiences aren’t going to be solved in a handful of sessions. Fortunately the doctor didn’t seem offended.
He asked me to fill out a couple of questionnaires and I scored ridiculously high on both of them, indicating Fibromyalgia. He asked me a few more questions and then had me lie on the gurney, pressing on the Fibromyalgia Tender Points and rotating various joints. To his credit, he told me exactly what he was going to do before he did it – with the explicit option to say no – and he was as careful and gentle as was probably possible while still learning was he needed to. Usually an appointment that involves a medical professional touching me ends in emotional disaster (panic attacks, meltdowns, etc) and while there’s no world in which I could describe myself as relaxed during the exam, it didn’t end in tears, literally or figuratively. He also carefully examined my hands, given how much pain I have in them. He couldn’t find anything specific but acknowledged that that didn’t mean there wasn’t a problem and said he’d arrange an ultrasound to be sure. That surprised me; in my experience, most doctors stop at not finding a problem. I don’t think I’ve ever had a doctor run tests ‘to be sure.’
He diagnosed me with Fibromyalgia (my thoughts on that in a moment) and ran through the (limited) available options. He listed various medications to manage the pain, none of which I can take due to previous bad reactions or because they’re contraindicated with my anti-depressants; he said he’d look into some funding for more hydrotherapy since the NHS only gives you maximum two, although I’d be very surprised if he managed that; and he said he’d refer me to an inpatient centre that specifically takes people with hEDS (but just the thought of the inpatient format makes me very anxious, unsurprising as an autistic person who finds change difficult to say the least). So I don’t feel particularly convinced by any of that but I have to give him credit for trying; I don’t usually get even that.
So, according to at least five different doctors, I have Chronic Fatigue Syndrome, Chronic Pain, Hypermobile Ehlers-Danlos Syndrome, and now Fibromyalgia. These conditions can and do exist together but I remain unconvinced that I have all of these conditions when so many of the same symptoms occur in all or multiple conditions, such as pain (in both joints and muscle), muscle stiffness and/or weakness, severe fatigue, difficulty sleeping, difficulty with concentration and memory, headaches, heart rate irregularities, dizziness, and low mood. I feel reasonably sure about the hEDS – given the joint hypermobility and instability, as well as the autonomic dysfunction, the postural tachycardia (and the connection with neurodiversity makes for an even stronger case) – and I definitely struggle with something or some things that involve severe pain and severe fatigue, but I don’t know how to be sure which diagnosis or diagnoses those fall under. In an ideal world, I’d be able to trust these doctors and the diagnoses they bestow upon me, even if the number of them and the overlap of symptoms feels unlikely (to my admittedly untrained eye). But my experience and the trauma I live with as a result of how medical professionals have treated me, reinforced by the all but unanimous lack of support, has left me unable to trust them and trust them with something as precious and fragile as my health, physical and mental. So I find it very, very hard to take any of them at their word and then to believe that they’ll do what they say they’ll do; I’ve long stopped having expectations.
Even though I remain skeptical about the Fibromyalgia diagnosis and the options I’ve been presented with, I was reassured a little when the doctor asked if I’d mind having a series of blood tests done (including ones for thyroid function, liver function, and cortisol) and more so when he was happy to include a couple more – ones relating to my ADHD – that I’d been waiting to ask my GP about; I was more than a little taken aback that he was listening and willing to help, even though it wasn’t a part of his job. I was surprised again when he rang to check whether there were any problems because he was still waiting on the results (I’d had to postpone the tests when I was felled by an ear infection); that’s a diligence I’ve seen so rarely that I could probably count the occasions on one hand. So I am grateful for that, even though I find it unsettling, even though the whole thing was very stressful.
A new diagnosis (and yet more time in medical establishments with medical professionals) isn’t a road I wanted to go down and the confusion and internal conflict over how Fibromyalgia fits into the picture (especially since I’ve been told in the past that I don’t have it, making the whole thing even more confusing) have been really draining; my anxiety has been running high, especially around medical stuff (which made going to the doctor for the aforementioned ear infection a difficult and distressing experience). I’ve been talking to my therapist a lot about these experiences (more on this in a separate post, I think) but, given how long this traumatic cycle has been going on, it’s not something that I can simply deep breathe my way through. No, it’s going to take rather more than that, I think.
Everyday Essentials
Posted on July 1, 2023
Given my health situation – living with multiple chronic illnesses that require daily management – I thought it might be interesting to make a list of the things I need and use everyday and maybe if any of you guys live with chronic illnesses, you could compare it to what you use. Are these things helpful to you? Might they be? Are there things that are helpful to you that aren’t on this list?
GLASSES – This is a pretty obvious one. I can’t see three feet in front of my face without them; I am incredibly short-sighted. Both of my biological parents are or were short sighted and I believe that certain forms of Ehlers Danlos Syndrome (EDS) can affect your eyesight. Regardless, I’m not going anywhere without my glasses.
MEDICATION – I have certain medications that I have to take everyday, as well as some that are situation dependent. The most important are my anti-depressant, Phenelzine, and the beta-blocker, Propranolol, and I really feel it if I don’t take them; while it took them a while to take effect at the beginning, it can through everything off course if I miss a day. So taking your meds… very important!
PAINKILLERS – Okay, this isn’t an everyday occurrence but it’s very common, especially at the moment (I hurt my back about a month ago – a story for another time). I have them on me all the time and I regret it if I don’t. Pain can be so debilitating and if I don’t have something to manage them, if only to get home, then I’m in really trouble. I also get migraines that absolutely incapacitate me so having the pills that help with those is vital. I often feel like a walking pharmacy but I’ve learned the hard way – several times – that it’s better to be prepared.
LOTS OF WATER – Generally, none of us are drinking enough water but as a person with Hypermobile Ehlers Danlos Syndrome (hEDS), I’m sure I’m not, as hard as I try. When I was diagnosed, the recommendation was that I drink more than double what a person without hEDS is supposed to drink (x); I’ve been trying to build up my water intake but it’s a slow process. I also have Postural Orthostatic Tachycardia Syndrome (POTS), which often occurs with hEDS, and includes symptoms like dizziness, light-headedness, swelling in the legs after standing for short periods of time, palpitations, fainting, and more, all of which can increase in intensity when a person is dehydrated, after exercising, or during hot weather (I want to write a more in depth post about all of this when I have more time). Dehydration has also been linked to an increase in pain sensitivity (x). Increasing water intake has proven to help POTS symptoms so I’m doing my best to always have water with me (or cordial if the taste of water becomes a struggle, something my nutritionist okayed, given that I’d still be getting the fluids) and I think it’s helping me to drink more (x). It’s surprisingly hard though, to drink that much water.
MY PHONE – I know that many people talk about needing breaks and time away from their phones but, in general, having my phone around is more helpful than it isn’t. I find social media pretty triggering for my anxiety so I rarely find myself scrolling through Facebook or Twitter or Instagram (and I hate TikTok more than I can even articulate) whereas I find the apps for setting alarms and timers helpful, Duolingo really good for my anxiety (and mental health in general), and the Notes app vital to writing down thoughts and ideas to follow up on. I do find it stressful that it means anyone has access to me, can contact me whenever they want, but then Airplane Mode is right there… But generally, my phone is more helpful than not.
MY BULLET JOURNAL – Between my ADHD and my general anxiety about being organised, my bullet journal (or what began as a bullet journal and has evolved into a more personalised version of the system) is all but permanently attached to me. It has my list of commitments, the list of things I want to get done during the day, and anything else that might be relevant, like stuff to do with the cats or the house. I honestly don’t know what I’d do without it.
FIDGET TOYS – My hair pulling has been particularly bad recently (plus I’ve seriously struggled with chewing the callouses on my fingertips and tearing at a scar on my face) and after years of dealing with it, I have a slightly ridiculous collection of fidget toys that I rotate using as the urge to pull varies; sometimes certain fidgets are more effective than others. So I usually have at least within reach, whether that’s wherever I am or in my bag.
NOISE-CANCELLING HEADPHONES – Having had some very unpleasant experiences with just how loud the world is (you may remember this particular disaster), I got an amazing set of noise-cancelling headphones that have made navigating my hometown, London, transport systems, etc so much easier. I’ve recommended them to multiple people and those who got them have agreed that they make life – and all of its noise – a lot more manageable.
FACE MASK AND HAND SANITISER – I know that, for a lot of people, it feels like the pandemic has ended but, for many, many others, it hasn’t. I know immunocompromised people, those struggling with Long COVID, people who are still getting COVID and getting seriously sick so it certainly doesn’t feel over to me. If I’m out, I’m pretty neurotic about hand sanitiser and wearing a mask; I’m not perfect and I do sometimes forget, especially if I’m feeling overwhelmed in a social situation and there’s no prompt of other people wearing masks, but I’m still pretty on the case about it all.
A HIDDEN DISABILITIES SUNFLOWER LANYARD – I’m not sure when I first got my sunflower lanyard and I can’t honestly say it’s changed my life but there are certain places that it does make life easier, like at airports and concerts (and getting support in those sorts of places is so important). Mostly I wear it when travelling around London because having a big ‘autistic’ label around my neck reminds people to take care and hopefully be a bit more aware of what they’re doing and what’s going on around them. I’m sure there are people who see it and it makes them uncomfortable or contrary or belligerent (because, in my experience, those people tend to be everywhere) and I think there are places where it probably makes me more vulnerable but, on the whole, it tends to be helpful if I use my judgement.
JOINT SUPPORTS – Because of my hEDS, I struggle with a lot of pain in my joints (the gift that keeps on giving) so I have a handful of different supports and braces. I mainly use them for my knee and for my wrists, but I also have one for my back. They not only really help with my stability – something I’m struggling with more and more – but, as with my sunflower lanyard, they remind people that I am kind of fragile and that they need to be careful around me, especially on trains and the underground etc.
POLARISED SUNGLASSES – The last time I went to get new glasses, I mentioned that I have hEDS and the optician recommended getting polarised sunglasses because they can help with light sensitivity, something that many people with EDS struggle with: our eyes are sensitive can get really tired because they are made up of 80% collagen, which is – as we know – what EDS negatively affects. And if you can reduce the strain on your eyes – which these glasses do, even if you’re inside but it’s still very bright – then you can hopefully reduce the chances of developing problems with your eyes (again, EDS: the gift that keeps on giving).
LIP BALM – A common symptom of multiple types of EDS is sensitive skin and that can manifest as dry lips (and cracked lips that take ages to heal) so I try to always have a good lip balm around. My personal preference is the EOS Crystal Lip Balm in Hibiscus Peach, which I’m not totally sure they make anymore but it’s still available through various online stores. But it’s their crystal lip balms that are best for hydrating your lips (but it’s worth reading this article because some people have had allergic reactions to certain ingredients); the previous, more waxy versions were nice but I didn’t find them to be super effective. This one helps my skin recover really quickly (and stay hydrated) and I can barely feel it on my lips, a plus considering that the sensory experience of make up and skincare can be really difficult for me. But there are a lot of great ones out there; I’ve used several from The Body Shop that I would recommend too.
CBD GUMMIES – Over the last couple of years, my sleep schedule – for the most part – has been awful. Most nights I was getting a fractured few hours and then there were nights where I didn’t sleep at all. It was horrible and it just made my mental health even worse, which was pretty impressive given how bad it was when my sleep was at its worst. I felt like I’d tried every strategy ever suggested, including some pretty strong prescription sleeping pills; they worked-ish but I suffered from some pretty miserable side effects for not much reward. I’d always been vaguely resistant to trying CBD based products for some reason – I’m not really sure why – but I was desperate and ended up trying a few different types of CBD gummies. Within a few days, my sleep was deep and reliable again. Months later, it’s remained pretty good. Plus it’s helped me avoid relying on prescription pills, which I’ve had to do in the past even though it’s not generally advised (this was with the approval of my doctor); taking them every night can increase your tolerance and so they stop working and no one really knows what the long term effects are, although some people become addicted and can experience symptoms like hallucinations. So avoiding that is definitely a pro on the pro-con list. Research is still being done around CBD but so far it seems that the only problems are certain drug interactions, which would just involve a conversation with a doctor. None of those interactions were a problem for me so I’ve been taking them consistently ever since and my sleep has been so much better. They’re a constant presence on my bedside table.
So I hope that was of some interest, at least. As I said in my introduction, let me know if you use these things; let me know if you use other things; let me know if there are things that might work better than the ones on this list! Over to you!
Finding Hope 