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!
Grateful 2018
Posted on December 24, 2018
Last year, I posted on Christmas Eve about the things I was grateful for (here) and I really liked it as a practice. Since we don’t have Thanksgiving in the UK, there’s no holiday directly related to being thankful and I think it’s important to make time to think and feel these things. And I always feel overwhelmed by how lucky I am at Christmas so this seems like a good time to do it, to do this post.
My family – I am endlessly grateful to my family. They have loved and supported me through some really difficult times this year and even though that’s what family should do, I’m so, so grateful to them for doing that. I don’t take them for granted. A particular shout out to my Mum for going above and beyond. She’s my hero.
My friends – I am also endlessly grateful to my friends. I haven’t seen as much of them as I would’ve liked this year but I’ve been doing my best to stay in touch. They mean so much to me and I hope they know that. Again, a particular shout out to Richard because he has been incredible this year, supporting me as a friend and a writing partner. I’m more grateful than I can say.
My therapist – I’ve said it before and I’ll say it again: I am so grateful for my therapist. My depression has been brutal this year and there were more than a few moments where I had no idea how I was going to survive (I say that like it’s over and I’m not sure whether it’s over or not). I absolutely wouldn’t have made it through that without her.
Song Suffragettes – If you don’t know what Song Suffragettes is, prepare to have your musical life changed. It’s an organisation in Nashville that focuses on boosting the up and coming female songwriting talent and they have weekly shows showcasing these awesome women. I was lucky enough to join them on my last trip to Nashville and it was definitely the best day of my year (and one of the best in my life). Everyone involved is so lovely and they are doing such important work. Check them out on Twitter here.
Claire Wineland – I’ve written about Claire quite a bit (here, here, here, and here if you’re interested) but she’s been on my mind a lot. I miss her – her presence in my life – more than I know what to do with but I am so grateful to have had her at all. That doesn’t make me okay with what happened (not at all) but I am grateful. She was an incredible human being and she’s still helping people even though she’s no longer here.
Flowers – This is a simple one but having beautiful, colourful flowers around improves my mood and improves my day. In a year that’s felt very dark and colourless, having flowers in the house has made a noticeable difference to my day-to-day life.
My bullet journal – Having somewhere to organise my thoughts and my life has been so helpful. Up until now I’ve never had a system that really worked for me so this is a big deal. I’ve written more about it here.
Lauren Kaech – I discovered Lauren on YouTube earlier this year and I have found her videos and her attitude really inspiring. I talked about her in my post about social media favourites and she makes videos about her experience of living with an eating disorder. And while that’s not an experience I can directly relate to, there are aspects that I can. She talks about facing the things that scare you, the realities of happiness, and a whole host of recovery related topics that apply to anxiety and depression as well as eating disorders. I’m so grateful to have had this in my life this year and at my very worst (in the very worst of my depression), looking forward to her videos got me through the day and kept me going.
Swimming – I’ve written a whole post about this (here) but I wanted to include it here because I’m so, so grateful for it. Almost every morning, I get up and go to the pool and do something that makes sense. Even if the rest of the day doesn’t, that does. I’m also really proud of myself for keeping this up for six months, especially given how bad my depression has been.
Taylor Swift – Miss Swift was on my grateful list last year and the reasons are all still relevant. But this year, I got to see her live (twice!) and that experience was so much fun in the middle of a really dark place. I felt all that weight lift for a couple of hours and that is a big deal. I’m also really grateful to her for voicing her political opinions (breaking her career long silence on the subject) and encouraging young people to vote. In the twenty four hours after she made her Instagram post on the subject, 65,000 people registered to vote, which is just incredible. It made me really proud to be a fan. I don’t think I can say more than, as always, I am grateful for Taylor Swift.
So there you have it. I could write more – there are so many things to be grateful for – but I’ll stop there. I’m wishing you all a safe, happy, and healthy Christmas and I’ll see you in the next post.
A First Attempt at Bullet Journalling
Posted on September 15, 2018
As you guys have probably guessed, I’m a stationary enthusiast and over the years, I’ve gone through many, many notebooks and diaries and planners. I’m pretty picky about the kind of books I like and that’s probably why I’ve never found a planner that really works for me. The layout didn’t work or the writing spaces weren’t big enough and so on. So I was always on the lookout for the right one.
I started looking into bullet journaling after seeing photos and videos of bullet journal ‘spreads’ on social media: pages to track spending, sleep, mood… As well as monthly and weekly logs to keep track of what they were doing. It seemed to be a way of creating a very personal, tailored planner and that appealed to me, although I’m definitely not artistic enough to compete with the ones I’ve seen on Instagram and YouTube. But since it seemed to work for so many people, I thought I’d give it a try.
A lot of thought went into the bullet journal format (the official website is very informative) but in short, it’s a flexible system to “track the past, organise the present, and plan for the future.” Most people seem to use dotted notebooks (like the ones that Leuchtturm make) and dedicate pages to calendars (future log, monthly log, daily log) and trackers (habits, sleep patterns). I’ve found this incredibly helpful so I thought I’d share how I use it. Maybe this would be more easily done in video format but here we are.
At the beginning of the year, I bought a Leuchtturm notebook (dotted, navy blue, A5 – available here) and got to work. I looked at photos on Instagram and watched a tonne of videos on YouTube (AmandaRachLee is my favourite) and that really helped me to figure out what bullet journalling could be for me. I set up the index at the front and created several general spreads, including my new years resolutions, all the birthdays in the year, books to read, and things to watch. Carrying all of this around is so helpful and it has definitely made me more organised. And motivated.
One of my favourite spreads is the one for blog post ideas (and it actually spilled over into a second spread because I ran out of space). I find it so inspiring and motivating to look at. I’ve always been a list maker and I LOVE being able to tick things off a list; I’m always more motivated and productive when I’m working from a list. Having all of these ideas in one place has made blog writing much more efficient.
Many people do a monthly mood tracker but I did one for the whole year because I thought it would be easier to detect any trends in my mood and compare month to month. If I could do it again, there would be less categories. It took a while to figure out how broad each emotion had to be and as someone who feels emotions (and their subtleties) very strongly, it was very easy to create more categories than I necessarily needed. And I think a smaller spectrum of colours would make the whole thing clearer.
I found this particularly helpful when trying to judge my reaction to a medication: I could literally track my mood through each dose increase and assess how helpful it was. Sometimes it’s easy to get lost in one side effect or judge it based on the most recent feelings rather than the overall experience. So it was really helpful in regards to that.
Now to the month-to-month, week-to-week stuff.
It’s pretty standard to do a monthly log: a month at a glance of sorts so that you can see everything you’re doing during that period of time.
One thing that I love about bullet journalling is that you can refine your style and system as you go, to make it more useful to you. I went through several different layouts before I found the one that really works for me, at the moment at least. And you can be as creative as you want or feel capable of being. I’m not very artistic – in the drawing/painting sense of the word – but it’s been fun (and oddly empowering) to try my hand at something I don’t usually do.
Again, it took me a while to find a weekly set up that I liked. But I really like the one I’m using at the moment. It’s simple and quick to fill out and not overwhelming to look at.
The official bullet journalling style involves a system of categorising all the information (tasks, events, appointments, etc), checking off tasks, ‘migrating’ them to a later date… Personally I found it overcomplicated and just not necessary. I know that there are people who like it, people who don’t, and people who have either simplified the official key or created their own version. But this is what’s great about this whole format: you can tailor it to what you need.
And lastly, I’ve recently started using trackers as part of my monthly set up. I kept the list of tracked things short so that it was actually doable and I ended up finding it really useful. Having that list of things written down made it easier to remember to do them and to build the habit. And as I said, I love ticking things off a list so the idea of filling in the boxes at the end of the day was really motivating.
So I hope this was interesting. If any of you guys use bullet journalling or any other system for organising your life, let me know what works for you!
Finding Hope 