Finding HopeEveryday 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 