Everyday Essentials

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!

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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.

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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.

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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!

One Year of Self Isolating

As of today, I have been self isolating for a whole year. 365 days. In that time, I’ve probably left the house no more than twenty times: for one morning of work (that had to be done out while the rest I’ve been able to do from home), for medical appointments, for swimming/hydrotherapy. And a haircut (when my Trichotillomania was particularly bad) during a period when it was considered safe to have one. But other than that, as a vulnerable person, I’ve stayed home. I worked out the numbers and that means I’ve spent 95% of the last year in my house. I look at that number and it kind of blows my mind. I’ve always been a homebody but this is so not the same thing.

So, to acknowledge the occasion, I thought I’d make a post about it. I thought about doing a list of good things and bad things, but given that the year has been dominated by the pandemic, that just felt wrong. Like, in general, it feels like the bad things carry so much more weight; a list like that just didn’t feel like an appropriate way to look at the last year. So, instead I thought I’d make a list of some of the things I’ve learned this year. There have been so many new experiences, new approaches to everyday tasks, new thoughts, new emotions, and so on. So I thought that might be a better way of looking at things. I doubt I’ll remember everything but I’ll give it a go.


  • ADJUSTMENT TAKES TIME – Going from normal life, the same lives we’d been living for considerable periods of time that rarely changed dramatically, to suddenly spending all of our time inside, missing our friends and family, and dealing with all of the fears and unknowns around COVID-19 was a big deal. A really big deal. And as someone who really struggles with change and uncertainty, this was a nightmare for me. I was barely functional for the first few weeks, if not months, because I was so overwhelmed. Eventually I managed to do the bare minimum but I continued to really struggle with anxiety. And things that had once been normal suddenly felt hard: I couldn’t concentrate enough to read anything; my songwriting felt blocked by my fear around the pandemic; cowriting sessions had to take place over Zoom, which felt awkward and made being creative more difficult; doing therapy via Zoom felt weird and the conversations felt limited and stuck because COVID was obviously the biggest thing going on but I really didn’t want to talk about it because it felt so upsetting. All of these things have gotten better over time (the reading is still a struggle though). At the time, the stagnation was unbearable but slowly I adjusted to each new version of normal and each time, I adjusted more quickly and with less difficulty. It’s all had a cumulative impact on my mental health and it’s gonna take a lot of work to get back to where I was pre-pandemic but I’m coping better than I was earlier on in the pandemic.
  • I HATE HAND SANITISER – I really hate it. I will 100% use it without complaint because I know how important it is in the effort to keep us all safe but oh my god, it feels (and smells) disgusting. As someone so sensitive to sensory stuff, I have really struggled with it but if it’s helpful, if it’s the right thing to do, I will willingly put up with it. I get the impression that it’s going to be a part of our lives for the foreseeable future so I’m going to make it a priority to find one that I don’t hate, just to make the experience less gross.
  • I NEED STRUCTURE BUT I CAN’T DEAL WITH EXACTLY THE SAME THING EVERY DAY – Knowing what is going to happen in my day is a really important part of managing my ASD and my mental health; having structure and certainty helps me to avoid anxiety and be more productive. So planning and a certain amount of routine are massively helpful but having such a strict routine that I do exactly the same thing at the same time everyday isn’t helpful. It just makes me feel trapped and anxious and suffocated.
  • PRE-PANDEMIC, I WAS SO LUCKY TO SEE MY FRIENDS AND FAMILY AS MUCH AS I DID (AND I HOPE THAT THIS WILL CONTINUE ONCE AGAIN WHEN IT’S SAFE) – There’s not much to expand on here. I feel so lucky to be so close to my family, to have always seen them so often before the pandemic. Having to go without seeing so many of them (in person) for so long has been really, really hard. I also feel really lucky because I know that, as soon as it’s safe to do so, this will continue. I can’t wait.
  • I’VE LEARNED WHAT I REALLY NEED IN A FRIENDSHIP – This isn’t related to the pandemic directly (so many of us have been struggling socially so it would be unfair to judge someone on whether they’re a good or bad friend based on this period of time) but it’s something I’d been thinking about before the pandemic and I continued to reflect on it during the lockdowns. I thought about the friendships that have lasted and the friendships that haven’t and had a bit of a revelation about the few fundamental things I need to be getting out of a friendship in order for them to be positive and fulfilling and, in addition, what makes a friendship draining and detrimental. That’s where it turns from a friendship into something unhealthy. But I think I’ll expand on all of this in another post.
  • I’M REALLY LUCKY TO HAVE THE FRIENDS I DO – My friends have been my lifeline to reality over the last year, a year of feeling like I’m trapped in a box (a feeling I’m sure, many, many people can relate to). I haven’t been as good at staying in contact with some as with others but it’s because of them that I’m pretty sure that I haven’t completely fallen apart. I feel really lucky to have a handful of friends from each ‘era’ of my life so far (school, college, university, and now post grad) that I’ve stayed close to but I feel like we’ve become even closer this year, even though we haven’t been spending time actually together. I’m really grateful to have these incredible people in my life and I just hope they know how much they mean to me.
  • SWIMMING MAKES ME FEEL REALLY GOOD, IN MYSELF AND ABOUT MYSELF – Swimming is the only form of exercise that I can do without pain but due to the constantly varying pandemic restrictions around gyms and pools, I haven’t had many chances to swim. But the times I have managed to swim have felt fantastic. It makes me feel almost giddy with joy and it also makes me feel strong and in control of my body, all things that I rarely ever feel. I can’t wait to swim as much as possible (and is sensible) as soon as it’s safe.
  • IT CAN BE SO EMPOWERING TO BE AN INDEPENDENT ARTIST/MUSICIAN – That’s not to say that it’s not hard, or even impossible sometimes, that it’s not utterly terrifying. Because it is. A lot of the time. For me, at least. I can’t speak for anyone else. It is very scary to be the one ultimately in charge of your artistic career because every decision and every consequence comes back to you. And oh my god, it’s incredibly expensive. But putting all of that (and more) aside for a minute, it has felt very empowering over the last year to be that person in charge: no one knows what’s happening, no one knows what’s going to be happening in three months time, so you just have to go with your gut and hope it’s the right choice. If it isn’t, it isn’t and that’s disappointing but being a new, independent artist in a pandemic is hard and possibly the worst time to be starting out so I think we all, at the very least, deserve some credit for even trying. And then there are the choices that do work out and they really make you stop and think because that came down to you or you and the small team you work with and it actually worked. It was actually successful. And that’s pretty mind blowing, especially so in these completely unknown times.
  • ONLINE LEARNING IS HARD, BUT THERE HAVE BEEN SOME BENEFITS – I can’t talk about online learning without recognising that I’m in a very fortunate position compared to many other students: I was and still am living at home, my university and my course are relatively small, my course can be completed remotely (although, of course, I’d much rather be doing it in person) even if it is much more difficult, the available technology has made it possible to continue creating and creating collaboratively, I have a good mental health (and now physical health) support system and so on. I’m very lucky. It’s been painful and difficult at times but less so than it could’ve been, not that I would’ve said so during the painful and difficult times, of course. But I feel closer to my coursemates than I’d have thought possible, given the fact that we’re only ever together via a screen. But we’re all going through this big, unknown, scary, frustrating, upsetting experience together and I think that’s created a unique bond. I can’t say whether or not we’ll all still be in touch in, say, ten years time – I hope so – but if we aren’t, I know I’m going to look back and think, “Those were some of the people that got me through the terrifying experience of the COVID-19 pandemic and for that, they will always be special to me.”
  • ALL OF MY DIAGNOSES ARE CONNECTED – Again, this isn’t pandemic related but I don’t know if it would’ve happened (or, at least, happened now) if not for the pandemic. After years of researching, endless doctors appointments, SO MANY referrals, and talking to various different consultants, we finally struck gold and found a superhero in the form of a hypermobility specialist. She was able to make things happen, move various processes along, and just get people to listen to me. Since meeting her, I’ve had various tests and appointments and a couple of diagnoses that seem to have finally pulled all of my apparently unrelated problems together, which is both overwhelming and… good. I kind of haven’t processed beyond that. Again, I want to go into this in more detail in another post, when I’ve processed it more deeply and where I can go into much more detail. But it’s a big deal. A really big deal.
  • AS PART OF A SOCIETY, WE ARE PART OF SOMETHING SO MUCH BIGGER – I obviously knew this already but that knowledge has felt different since the pandemic began, when it became clear that we were going to have to act as a collective to reduce the effect of the virus and return to something that at least vaguely resembled normal. And in some ways, that’s been a very powerful and emotional experience with people stepping up and helping each other simply because they could and because it was the right thing to do it. Although, having said that, it’s also been hugely frustrating to watch people not do their part when so many people are making such sacrifices. But on the whole, it’s been an honour to be a part of a group doing all they can to end the pandemic. What I personally can do, of course, is not on the same level as the frontline and essential workers – my god, not even close – but if the most I can do is obsessively follow the safety instructions and stay at home unless absolutely necessary, then that’s what I’ll do and I will do it without hesitation. I have such incredible respect for these people who have helped so many, who have made such sacrifices, and who have gone through so much during the pandemic that I will do (or not do) whatever is asked of me to make their lives and their jobs even the slightest bit more manageable. I will never forget what they’ve done for us during this time, not for as long as I live.

As I said, I’m sure there are more things that I’ve learned during this time but I think that these are all of the big ones, the big, personal ones. I’m included in the group currently being vaccinated (although I’ve yet to hear anything) so maybe I will be heading out a little more often once that happens, if only to get some more exercise. But to be honest, given how this last year has affected my mental health, I don’t think I’m going to be exactly quick to adjust to the idea that things are somewhat safer (the government certainly seems to think so, what with their plan to come out of lockdown). As desperate as I am to see my friends and family again and get back to swimming again, I don’t think I’m going to feel safe again for a long time: as I said, I don’t cope well with change.