Negative Vibes Welcome

I have a complicated relationship with inspirational quotes and I’ve seen a few recently that have caused me a deep sigh! Permit me a few minutes of your time to explain, using four inspirational messages, why I embrace negative vibes!

(Disclaimer: Take anything I’ve written with a pinch of salt. I have literally zero mental health credentials so this is entirely an opinion piece!)

Positive Vibes Only

For me, ‘positive vibes only’ is the biggest offender! It is, for me, the greatest representation of toxic positivity that I can think of. Toxic positivity describes any inspirational quote or message that has the capacity to be false, dismissive, alienating or undermining. Quotes like this can create feelings of guilt and shame because quite simply they’re disconnected from the reality of experiencing life as a complex human being. You cannot possibly be positive ALL the time and if your social group is only available for ‘good vibes’ then maybe you need to ask yourself if they’re good friends or just fair-weather friends. Good friends are often there to support or hold space for you when you’re experiencing ‘negative vibes only’!

When I was a teenager, I (in short) suffered with depression. I was in a whole self-destructive spiral that meant I often lashed out at the people closest to me and I effectively cut my best friend Hannah out of my life. There was no way that Hannah could get close enough to me at that time to support me, but she waited in the wings until I started to recover. She’s still one of my closest friends and we’ve now known each other for about 20 years. I will forever be grateful that she didn’t just abandon me because of my negative vibes (and trust me, they were NEGATIVE)! Now, I’m not saying you need to go through something so drastic to figure out who your friends are, and I’m also not saying that you shouldn’t have boundaries within your friendships. Finding that balance between giving space to negative vibes, encouraging positivity or maybe taking a step back is a tricky one that you have to learn to navigate all by yourself!

Allowing yourself 5 minutes to be upset

This is exactly the Instagram advice that tipped me over the edge and led me to write this! This particular Instagram post stated that you should give yourself 5 minutes to feel your negative emotions if things in your life go wrong, but no more. Set yourself a timer, have a cry, then simply acknowledge that you can’t change the way things are and just stop feeling those feelings. Simple! Right?!

Of course, there are absolutely moments in your life where you can just shake something off and move on. There can be great peace in sometimes accepting that there are things that you cannot change. BUT, (and it’s a big but!) I also firmly believe that it can be incredibly important to feel whatever you need to feel and for however long you need to feel it for. Whatever you’re feeling is valid and you need to work through that. No one should be dictating to you how long you should feel it for…especially if that involves setting a literal timer!

A few years ago I developed a chronic illness and I did not give myself time to process that. Getting ME/CFS was a life changing event and to some extent forcing myself to think positively was a protective measure. But, I bottled up so many feelings. I was often called brave and folk would tell me how well I was handling everything, and don’t get me wrong, it is nice to hear (and of course, it is well meant). But, I think it also made me feel like I had to keep presenting a positive front and it stopped me being honest about how I really felt (even to myself). To cut a long story short about 4 years after I was diagnosed I was sat in therapy realising how much I needed to grieve because of what had happened. Maybe I’m being facetious because I’m sure that this advice wasn’t necessarily intended to help you brush off the big things in life, but I think it’s easy when you’re at your most vulnerable to be gaslit by these seemingly innocuous pieces of advice.

Positive thoughts create positive results

I’m going to keep this short but essentially, this one is important to me because I think it can be weaponised. When I developed ME/CFS I was suddenly introduced to this faction of people who would essentially say that I was sick because I was thinking too negatively. Basically, I would get better if I thought more positively. I cannot express just how damaging this is. It places the blame on the person who is suffering and of course it’s not just a phrase reserved for those who are ill. Positive thinking can be an awesome tool, but it cannot cure you or solve all your problems.

You only fail if you quit

Quitting does not necessarily mean that you have failed. Sometimes quitting is the hardest and bravest thing that you can do. When I quit the merchant navy I felt like such a failure. That crushing feeling of defeat contributed to a breakdown that saw me literally run away to the other side of the world to hide in the desert and then later, on a small pacific island (which is perhaps a story for another day). I was terrified, full of doubt and totally confused for about 6 months afterwards, but ultimately quitting was one of the best decisions I ever made. Sometimes quitting is the right choice and sometimes quitting is the wrong choice, that’s for you to decide! Either way you are not necessarily a failure.

Now, ‘positive thoughts create positive results’ and ‘you can only fail if you quit’ are the kind of Pinterest style inspirational quotes that might really serve a purpose at particular times in your life. They might really speak to you and help to move you forward, and that’s okay. In fact, that’s more than okay, that’s great! You might think that that’s a little at odds with everything I’ve just written but what I’m trying to get across is just to approach these sayings and quotes with caution. How do they make you feel and how do they serve you? Please don’t ever feel trapped by them.

How I Prepare for a New Year

Like lots of people, every year I like to spend some time reflecting on the year just gone and figuring out my intentions for the year ahead. When I say intentions, I don’t really do hard and fixed goals or resolutions, but I like to think about how I would like my year to look and what kind of things I want to focus on. Maybe it doesn’t sound much different, but I think it’s softer and gentler and leaves room for change and growth. Sometimes I already have my intentions for the new year done and dusted in December and sometimes, like this year, I need to take some time in January too.

So, every new year I do three things to bring in a new focus.

1. I Make a List of 100 Things I Would Like to do

Now 100 things might sound like a lot, and it is! But, hear me out… Those 100 things aren’t all big goals like ‘run a marathon’, ‘write a book’ or ‘learn a new language’! A lot of them are seemingly basic things like ‘stroke a cat’, ‘watch a sunset’ or ‘bake a cake’. When I started my first list of 100 things it was after a year where I realised I couldn’t remember watching a sunset, as in really sitting to enjoy it rather than just noticing it out of the window. I also couldn’t recall stopping to stroke a cat and I definitely hadn’t taken the time to bake a cake. I thought what kind of year is it if I haven’t literally and figuratively given myself the time and space to ‘stop and smell the roses’?!

Every year I learn from my list of 100 things and it evolves. The first year I definitely aimed too high and made too many big goals that were ultimately unachievable, the second year I added too many fitness goals (which was a serious oversight for someone with chronic fatigue), the third year (2020) I added too many travel goals because I clearly had too much faith that COVID would end quickly, and the fourth year I added too many goals that cost me too much money. I try not to think of these 100 things too strictly though, it’s a guide, a way to keep focus, not a way to beat myself up with any perceived failure that I haven’t achieved certain targets or goals. This year I’m leaving myself some wiggle room because in the latter half of last year I came up with things that I wanted to add in, whilst there were some that I wanted to remove. So, if anyone counts my list and sees that there aren’t 100 things this year it’s because I’m letting it be a bit more organic! (Also, I’m going to keep a few things to myself!)

2. I Choose Three Words

To choose my three words I used to use a set of cards with word prompts on them to help me, but I can’t find where I got them from (somewhere free and online) and I have no idea where the original .pdf is saved on my laptop! But, it doesn’t really matter because you can obviously choose your own words without prompts…and that’s what I did this year as I already had something in mind. After these particular words or themes came up a lot after I had therapy last year I chose ‘Wild’, ‘Free’ and ‘Heart’. Normally I just write them somewhere prominent in my diary or sometimes in the form of an affirmation to stick on my bathroom mirror, but this year I made a little poster/screen saver. These words have meaning to me and I use them as a kind of anchor to keep me grounded in a core set of values that I want to carry through the year.

3. I Make a Mood Board

I love a good mood board and I make them semi-regularly to help me get my thoughts in order and visualised. Sometimes I have a very specific set of goals or ideas I want to represent and then sometimes I just pop different search terms into Pinterest and browse until I find a pin that elicits some meaning for me. That’s how I made my mood board this time. I now use this mood board as my laptop background and screen saver and each time I see it I get a spark of recognition of how I would like my year to look. A bit like my three words the mood board works to anchor me to my goals and my focus so I don’t get too distracted by societal pressures, external influences or expectations. It’s also just fun and aesthetically pleasing to make!

So, that’s a rundown of these are three of the main things that I do to try and get into the right headspace to tackle the new year. But, of course, any or all of these things can be done at any time of the year. Do you do anything to prepare yourself for the year ahead or fancy trying out any of these? Let me know in the comments.

ME Awareness Month 2021

Where I’m at…

(Just before I start, if you want to know more about ME/CFS in general follow the link to another one of my blogs just here, if you want to know how I developed ME/CFS follow this link here, and if you want to know how I was doing a couple of years ago follow this link here.)

I haven’t written an ME related blog for a long while, but seeing as it’s ME awareness month, I’ve recently had a little flare up, AND I’ve been chatting to some chronically ill friends and acquaintances recently it seemed like a good time.

As a bit of very speedy background, after being a very healthy individual for 29 years I developed ME in the last year of my undergraduate degree. Although I had a really rough period where I was pretty much housebound, spending most of my time in bed, I’ve more or less recovered at a fairly consistent (albeit seemingly glacial) rate over the last 4 years. In this, I am incredibly lucky. There is no diagnostic test for ME, no established treatment plan, and no prognosis. Many folk, like myself, go home and just try to figure it out for themselves.

So, ~4 years after diagnosis, where am I at now? I guess that’s somewhat complicated! According to the NHS, ‘severe ME’ describes people that are bedbound (or at least housebound), ‘moderate ME’ describes people who can’t work or continue full time education, and ‘mild ME’ describes those who can carry out everyday activities whilst maintaining a job, but they do this with difficulty and have to sacrifice hobbies or social activities. If you’re thinking that mild ME doesn’t sound too bad, imagine your entire life being stripped back so it just revolves around work and basic chores, because you have no reserves left for anything else. No beers with friends on a Friday, no playing footie in the garden with your kids, no midweek French class…you get the drift. Doesn’t sound so mild anymore, right? Anyway, where do I fit into this short list of NHS definitions? I’m definitely not severe, I’m certainly not moderate, and actually I’m not even mild. I exist in a space that would be considered by many as recovered, but I feel remiss to accept that definition.

I think I would be considered ‘recovered’ because I hold down a full-time job (well, a PhD), a social life and multiple hobbies, which even include a certain amount of physical activity. I even started running and playing badminton for a brief period a couple of years ago (before I had a relapse)! I would disagree with the term recovered though, as sometimes I still have relapses or flare ups, I’m certainly not at pre-ME fitness and ME still, to some extent, shapes how I live my life. It’s hard to say why I have flare-ups. Sometimes I think it’s stress, or that I’ve overdone trying to build up my exercise, or even that I’ve eaten something that doesn’t agree with me. But, if I’m honest, I never really know. I generally just pick the option that seems most sensible and settle on it because I want an answer. Relapses for me most commonly mean one, or a combination of the following symptoms: Chest pain, headaches, joint pain, muscle pain, brain fog and/or fatigue. I also developed IBS as a fun side gig to ME, but I almost consider that an entirely separate entity now! Nowadays relapses normally have a peak in which I have to rest totally for a full day with time either side where I just need to cut back on activities. It’s rare that flare-ups last longer, but this most recent relapse had a peak of about a week and then of course time either side where things were ramping up or cooling down.

I have a lot of feelings about where I’m at now and I’ll share some of those below. I’ve tried to be open and vulnerable and I appreciate that might not make for comfortable reading. I think it’s important for me to share though and if it makes just one person feel even slightly less alone or slightly more seen then I think it’s worth me exposing myself!

Let’s start with a positive (I’m a silver lining’s kind of girl)! I’m so grateful that I have recovered so much as I know many folk suffer a lot more for a lot longer. I’ve learned to enjoy a tonne of new things like playing videogames, chilling in cafes, sitting and watching the world go by (generally just being) and deep diving into various crafts. But, I‘m also grieving the life and the person I feel like I’ve lost. I miss regularly climbing mountains, I miss running, I miss pushing myself and I miss trusting my body and feeling fearless in what it can achieve.

In some ways I think having ME has helped me manage my PhD, and well, life for that matter. It’s taught me to get better at managing my stress, asking for help and saying no. I’m not by any means saying I’m flawless at those things by the way! I still get stressed, I still say yes when I don’t want to sometimes, and I still forget I can ask for help from time to time. But, I’m infinitely better at those things than I was before! Whilst things are fine with the PhD, I’m low key terrified about what I’m going to do next. I worry about being able to keep up with the fixed hours of a ‘normal’ job, I worry about what that would mean financially and in terms of my independence. I’ve always fallen on my feet and I’m trying to have faith that that will happen again. I’m hoping I’ll just stumble across some super flexible, well-paying unicorn job that matches my skillset whilst I’m doing my careers searches. I know some of your values, needs and fears change with age, but I used to have wild dreams and be fairly carefree about where I would move and what I would do. I just knew that I’d be fine and I’d figure it out. I knew I could physically push through any difficulties that come as part of the new job/ new move upheaval. I struggle to think past the PhD now (although admittedly that’s not all to do with ME). A little while ago a job came up in conservation working with a friend on a reserve I’d lived and worked on before. (Pre-ME, I always thought of going back to conservation if science didn’t work out.) This job was a unicorn job! Now, ME aside, I want to finish my PhD, I don’t think I’d want to live on an island separated from my partner, I don’t think I was entirely qualified anymore and literally the perfect person got the job anyway. So, it was never going to happen, but I think what I found so difficult is that for all the time I spent thinking and talking about how cool that job could be I always had to admit the hard truth to myself that I’m not physically capable of working in conservation anymore (or at least for the foreseeable future). I’m just not well enough…and yeah, maybe I will be in the future (I still trust that I will continue to gradually get better), but it was still a hard thing to swallow.

Things like I’ve just talked about can leave me feeling a little trapped in a body that doesn’t work like it used to… and yes, I know it could be worse, but that’s not a helpful way of thinking either. ME has had a huge impact on my body confidence. It’s not just about what my body can do, it’s about how it looks now. It just doesn’t feel like ‘me’. I’m a lot fluffier now, as in I’m the fluffiest I’ve ever been! I have to say that there are of course other factors, I’m older, it’s a pandemic, I’m in a relationship etc… but ultimately, I can’t exercise like I used to. It’s such a hard thing to try to balance. I start exercising, build it up, get excited, struggle to listen to my body, relapse, take a break, get disheartened… It’s a vicious cycle. Because exercising is temperamental, I’ve also tried to just control my weight with food, but that quickly becomes unhealthy (I’ve not always had the healthiest journey with eating anyway). Counting calories becomes obsessive, then I don’t eat enough, then I get lethargic, then I have a flare-up. It’s another unpleasant cycle. I’m trying a novel new thing at the moment, which is eating and exercising intuitively and learning to be comfortable in my body. It’s the opposite of easy, but actually it’s making me face some of the unhealthy attitudes I’ve held surrounding weight gain throughout my entire life and that cannot be a bad thing.

Having said all that, I also feel guilty. I know that someone with even mild ME might read this and think “how dare she complain with the life she’s leading”?! By all intents and purposes, I’m living a totally ‘normal’ life and my Instagram shows me being in the lab, going on walks (even up the occasional small mountain/big hill), hanging out with friends etc… Don’t get me wrong, I am SO grateful, and I have so many wonderful things going on, but I have the before and after ME comparison in my head and I still feel limited. I want more. I know I’ve written about this before, but I also still worry sometimes that it’s not ME. I worry that it’s something else, or that it’s a crutch, an excuse, something psychological. That makes me feel a strange type of guilt and fear too, like I’m going to get found out as a fake. Imposter syndrome but for a chronic illness!

Despite everything though I’m not sure I would choose for it to never have happened. I’ve learned so much and grown emotionally. I’ve made choices and friends that I don’t think I would have made before and they’ve led on to some excellent experiences. It just hurts sometimes, and I really wish there was an end date. I used to spend a lot of time wearing a bit of a mask, kind of a toxic positivity mask. As a matter of survival I thought I had to stay positive and optimistic about my ME pretty much all the time lest it effect my recovery, but that took a toll and now I’m just trying to let myself feel everything. I can have good days and bad. I can be grateful and think it’s all a bit shit simultaneously. I’m a good multi-tasker! I have a long way to go mentally and physically, but I have a delightful support network of friends, family and now even a therapist. Look at me go!

Anyway, a big thank you for reading this. These posts are never easy to write so I always hugely appreciate anyone making it this far!