Pacing & Chronic Illness | What I've Learnt

This piece is part of a series of paid commissioned opinion and personal essay pieces by Disabled writers. Disabled people are constantly asked to work for free, to give their opinion for free and to educate people for free, and so I have created this space to not only give Disabled writers the opportunity to write and speak, but to gain income as well. You can expect to hear from a variety of Disabled, Deaf and hard of hearing people, Neurodivergent people and those living with chronic and mental illness. This is entirely fundraised for. 

Pacing & Chronic Illness | What I've Learnt

by Natasha Lipman

Like many people living with chronic illness, I have a bit of a complex relationship with pacing.

Having been told to "do it" for most of my life, but never taught what "it" actually was, I spent many years believing that pacing was:

  • Do a thing
  • Crash
  • Recover
  • Do another thing
  • Repeat
Turns out, that's a pretty normal experience for people living with long-term health issues. It even has a name: booming and busting. 

It makes sense, really. When you feel terrible, it can seem impossible to do anything except the bare minimum (and sometimes not even that). But, when you start to feel more able to do things, you really want to DO THINGS, and take advantage as much as possible.

The problem is, we often tend to overdo it, and end up back in bed, waiting out yet another flare up.

Over the years, I got intrinsically better at pacing the "big things". I knew that if I had to go out, I'd have to plan around it - blocking out time before and after to prepare and recover. I cut out a lot of things from my life to try and save as much energy as possible. And, whilst this did help. It also... didn't? Because I was still living a very boom and bust life - I just didn't realise that's what I was doing.

So, on Boxing Day 2019, I made an appointment with Jo Southall, an Occupational Therapist who also lives with chronic illnesses, for her Pacing Masterclass workshop. 

Over the space of an hour, she completely blew my mind and changed my perspective about what pacing is and how to incorporate it into my life. It felt, for want of a better word, empowering?

Jo describes pacing as "the art of breaking your life into small, manageable micro-tasks... taking short regular breaks to avoid symptoms, as opposed to one very long break to recover from them".

The three biggest takeaways for me were that:
  • Pacing doesn't have to be blocks of activity followed by blocks of full cognitive rest. This is something that I always struggled to do - and was pretty much the extent to which pacing had been explained to me in the past. So when she said this, I sighed an existential sigh of relief. I think about different energy "buckets" - physical energy, mental energy, and restful energy. I can switch between them.
  • Pacing shouldn't be a thing that makes us feel as though we're able to do less, having to restrict our lives. Of course it can be a real challenge, but the aim of it is to enable us to do more things in a more sustainable way over time.
  • Pacing needs to be proactive not reactive. That it's better to take a short break before you need to, not after you already start to feel totally rubbish and need to take a substantially longer break to recover.

You can read in-depth posts about pacing on my blog review of Jo's pacing masterclass, as well as a Q&A we did answering common questions about pacing for chronic illness.

I took some time to think and reflect afterwards, and started slowly experimenting with new ways of managing my energy throughout the day. If I'm being honest, in many ways the pandemic helped - taking away many of the big-energy expenditures in my life, and for the first time ever removing my not-going-out-FOMO.

And things were going fantastically! My life felt more stable and sustainable. There weren't such extreme highs and lows.

I found that I had to be quite strict with myself, because of my natural boom/bust tendencies - and if I'm being honest, there were often times where I used pacing to facilitate this. But I was excited and motivated to continue learning how to "optimise" as well as I could. 

But, as with everything, sometimes our health has other plans. It's easy to pace when you feel up to it. It's easy to feel more in control when you're coping better. Whenever my health would flare, or stress would get on top of me, pacing was always the first thing that went out the window.

I didn't have the mental or physical energy to think about looking after myself, so I reverted back to some of my old habits. Partially out of exhaustion, partially because we don't always have the level of control over our lives that we would like.

As I write this I'm in the middle of the worst flare-up I've had in a while. There are many reasons for this - health issues exacerbated due to the pandemic, a huge amount of stressful things in my life, and now opioid withdrawal - it's very hard to want to do anything other than fester in bed.

And because of that, I've been reflecting on my relationship with pacing.

Because, as much of an impact pacing has had on my life, and we can talk about the positives, it's important to remember that pacing is not the cure for chronic illness. Pacing doesn't stop life from happening.

What pacing can do is help us to handle the ups and downs of our lives in a better way.

There are some things I know I will always find hard to pace, writing is one of them.

But, I'm learning that pacing doesn't always need to look like my totally planned colour coded calendar, with rest alarms plugged into my phone.

I've tried so many things that I know help me, and there are smaller versions of these things that I can implement even on my most challenging days. It's not big, or fancy, or deserving of an Instagram post. But it's a tiny thing I know helps me cope when times are tough.

So, as I wait for my body to readjust to being without opioids for the first time in 5 years, I'm going back to basics. With just one tiny step at at time. 

Natasha Lipman is a journalist, chronic illness blogger, and host of the Rest Room podcast. You can find her on social media @natashalipman and at natashalipman.com


Hairspray at The London Coliseum | Review (inc. accessibility review)

Well, this is a little odd. The last theatre review I posted was February 2020, just one month before we entered our first lockdown and our theatres shut. It's taken me a little while to feel ready to return to my passion, but last weekend I finally stepped foot in a West End theatre again. Like many disabled people I was nervous, not only about the Covid side of things, but also I'm out of practice when it comes to navigating the West End's inaccessibility, how would I cope with it? It turns out I picked the perfect show as my first one back though, as you'll see from my accessibility review things couldn't have gone better. And the show itself? It was a ridiculous amount of fun! I'm not ashamed to say that I sobbed my way through the first few numbers, these past 18 months of theatres being mostly shut just hit me all at once. It was beyond wonderful to be back. 

The cast of Hairspray the musical in the West End are performing on stage in 60s brightly coloured costumes, the cast is a mix of black and white performers with the character Tracy Turnblad leading them, wearing a pink dress.

Hairspray is one of those shows that even non-theatre fans can tell you about, it keeps coming back again and again and I finally found out why. The story of Tracy Turnblad fulfilling her dreams whilst smashing through the barriers the world puts in her way, against the backdrop of segregation and racism of the 60s couldn't feel more current right now. As conversations around racism, and particularly racism in the theatre industry, have taken off over this past year Hairspray serves as an important reminder of where we've been and where we should be going. It demonstrates the importance of allies standing with black people. 

Lizzie Bea embodies Tracy perfectly, the definition of perfect casting. Within minutes you can see how dynamic her performance will be, and how much passion she has for her job. She has one of the clearest and strongest voices I've heard in a long while. She balanced humour and emotion like she's been doing this for decades, if anything makes you book this show, let it be her. 

The standout performance of the day had to be Marisha Wallace belting out 'I Know Where I've Been', it felt so painfully relevant and truly moved me to tears. I don't think there was a single person in that room that didn't have goosebumps. I have to give a mention to Jordan Benjamin too, I was beyond lucky to witness his debut as Seaweed, and he couldn't have performed better. It was so wonderful to watch the rest of the cast congratulate him at the curtain call, and a true reminder of why I love theatre so much.

Marisha Wallace is performing on stage at Hairspray the musical in the west end as Motormouth Mabel, she is wearing a long purple coat with a 60s print on it and a blonde curly wig.

The rest of the cast were incredibly strong, with a ensemble that danced their socks off throughout. Of course many will be watching this show to see Michael Ball and Les Dennis as Edna and Wilbur Turnblad, and their performance was the comedic joy I hoped for. 

The staging, the lighting, the set, all of it was just exceptional, with the whole theatre being used to tell the story. I went into the show knowing I would like it, but I never expected to come out of it loving it so much! I was truly beaming by the end, it was one of the most fun and joyful shows I've ever watched, you couldn't help but smile when leaving the theatre.

Accessibility Review

On to the accessibility now, but first I do have to mention an offensive disability slur that was used in the show that disappointed me. The word 'spastic' was used as an insult, and I really don't believe its use was vital to the plot. It was a throwaway comment, and therefore has no place in a show in 2021. 

The actual accessibility of the London Coliseum really blew me away however. This was my first visit and before the day even came around I was already impressed. Wheelchair users can enjoy a wide variety of seating options including, 2 spaces in the stalls, 4 spaces in stalls boxes and 2 more spaces in the dress circle. There are also a further 6 transfer seats across the dress circle and the balcony, accessed by two lifts which enable access to most levels of the auditorium and all the restaurants and bars. On top of this there are accessible toilets on 4 out of 5 levels of the theatre. A pretty good start I'd say!

We opted to sit in one of the stalls boxes, Box G, as with theatres now selling at full capacity I do feel more comfortable sat in a box so we have a little more space between us and others. We paid £25 each for our tickets. 

The view from stalls box G at the London Coliseum. The stage is lit up purple and are a few people taking their seats.

Wheelchair users can enter the theatre via the main doors, something I hadn't expected actually as I'd never noted that one seat of doors is ramped before, so that was a pleasant surprise. The step free access inside is so exceptional that I didn't need to be followed around by a front of house staff member, it was really lovely to just enter and be directed to the right area like everyone else. We stopped off at the merchandise stand and then made our way to our box.

Having never been inside the theatre before I expected us to have a restricted side view, but as you can see from the photos, we had an exceptional view. I was really quite taken aback. If you're thinking of visiting as a wheelchair user then I strongly recommended you opt for one of the stalls boxes. We had our own little space and the most incredible view throughout. 

A few people have asked about how theatre trips look now with Covid thrown into the mix, so here was my experience when visiting once all restrictions had been lifted. Auditorium doors were open an hour before the show, and we turned up not long after they opened which meant it was really quiet inside and for the most part we could distance ourselves from others. Mask wearing was at about 75%, and there were regular audio reminders to keep your mask on. Sitting in a box meant we felt that little bit safer too. For the most part I felt safe, safer than I've felt in a supermarket or just in a busy town centre. 

The programme for Hairspray the musical is building held up inside the theatre, the stage is lit up purple behind it.

I think it's obvious to see that from my personal perspective, the Coliseum's accessibility gets a big tick from me! I'll be keeping an eye on what shows go in there in the future as I'm really eager to return now. 

In terms of the rest of the accessibility, guide dogs and assistance dogs are very welcome at the theatre, but I couldn't find any dates for accessible performances. Perhaps the information is out there, but if it is, it's not easy to find. 

So, that was my first show back! And it has most certainly opened the floodgates with me having several more shows booked across the summer. I can't tell you how good it feels to be back. 

Hairspray is booking at The London Coliseum until 29th September 2021, book tickets here.


Being The Crazy-Ex Girlfriend: Break-ups, Boundaries & Borderline Personality Disorder

This piece is part of a series of paid commissioned opinion and personal essay pieces by Disabled writers. Disabled people are constantly asked to work for free, to give their opinion for free and to educate people for free, and so I have created this space to not only give Disabled people writers the opportunity to write and speak, but to gain income as well. You can expect to hear from a variety of Disabled, Deaf and hard of hearing people, Neurodivergent people and those living with chronic and mental illness. This is entirely fundraised for, so if you can spare anything at all to help fund this then I would be so grateful if you donated to the PayPal Pool.

Being the crazy-ex girlfriend: break-ups, boundaries & borderline personality disorder

C.N: Suicide, Suicidal ideation, Self Harm, Trauma

It's 9:15pm. A day of emotional dysregulation has drained me of all of the energy I have. I contemplate getting into my pyjamas and brushing my teeth, but both tasks feel pretty insurmountable. I collapse into bed fully clothed and begin to fall asleep, but just as I'm drifting off, my hand fumbles beneath the cover for where the small of your back should be. It's not there. Upon this realisation, I curl into a ball to try to soothe the knot in my stomach. I sob. I remind myself to breathe. And I hope that tomorrow might just be a tiny bit easier. Break ups are rough. A break up on top of Borderline Personality Disorder (BPD/EUPD) is something else entirely.

I feel a real sense of impending doom whenever I see a woman on screen begin to behave erratically after a break up. How far are the writers going to take this... will she go on a wild escapade to fix things, invent a new beau, and ultimately remain the butt of the joke? Or will she burn down a house? Threaten to kill herself to manipulate her way back into a relationship? Most importantly: will a balding, middle aged man in a white coat tell her 'victim' that it isn't their fault, and that their psychotic ex's behaviour can be excused on the account of her 'Borderline' or 'Emotionally Unstable' Personality?

An aerial shot of a white woman sitting on a grey sofa typing on a laptop. She is wearing a gingham orange shirt.

What is BPD/EUPD?

Borderline Personality Disorder is also known as Emotionally Unstable Personality Disorder (EUPD), or Emotional Dysregulation Disorder. Diagnosis relies on a complex matrix of nine symptoms, of which a sufferer must display at least five: 

1. Fear Of Abandonment - This is the big'un. People with EUPD are often terrified that the people they love will leave them. This is part of the reason that break ups sting so hard: that thing that you've been dreading for years? Yep, it's happened.

2. Unstable Relationships - People with EUPD tend to have very intense and short-lived relationships. I've definitely had a stormy dalliance or two in my time - and it took a lot of work and self-reflection to be in a stable and healthy one.

3. Unclear or Shifting Self-Image - I either think I am THE SHIT or the worst person on earth. Sometimes simultaneously. There is no middle ground.

4. Impulsive Behaviour - People with EUPD may indulge in harmful, sensation-seeking behaviours, especially when they're upset: this could be binge eating, spending impulsively drinking to excess or maybe just cutting yourself an offensive full-fringe during lockdown just to feel something.

5. Extreme Emotional Swings - I can go from suicidal to horny in 15 seconds. It's exhausting.

6. Explosive Anger - This is a symptom that I don't suffer from. This is just one example of how EUPD can look different dependent upon the individual. Some people deal with their overwhelming emotions by acting outwardly and getting angry, some people (read: me) deal with them by acting inwardly and crying into their cat.

7. Chronic Feelings Of Emptiness - People with EUPD often talk about feeling empty, or like there's a kind of void inside them: they'll try to satisfy themselves by filling that void with things like food, drugs, sex. Just call me Angelica Schuyler, because I will never be satisfied. 

8. Feeling Out Of Touch With Reality - When under a lot of emotional stress, people with EUPD may lose touch with reality or even dissociate completely. I sometimes get so emotional that I fully forget how to speak for about 30 seconds: it's not what I would call a pleasant experience. 

9. Self Harm/Suicide - A really common symptom of EUPD is self-harm, and 1 in 10 people diagnosed with EUPD die as a result of suicide. Not a joke, just a fact.

Despite seeming somewhat disorganised, all of these symptoms stem from the same place: individuals with EUPD feel the same emotions as anyone else, but the volume is cranked up to eleven. Both pain and joy exist on an unexplainable and often unimaginable level. I like to use the analogy of when you accidentally leave your caps lock on, and all your typing seems UNNECESSARILY INTENSE.

So... what about Crazy-Ex's?

A very common coping mechanism for dealing with the pain that goes along with this intensity is finding a 'favourite person'. Someone who you know won't abandon you. Someone to stabilise that unstable self-image, keep you in touch with reality, and help you to feel less empty. This is often, though not necessarily always, a romantic partner. And that is where the 'crazy-ex girlfriend' narrative takes root. During a borderline break-up, the loss of your 'favourite person', combined with intense symptoms of emotional dysregulation is a cocktail bound to result in a 'crazy' ex.

I've just come out of a loving 2-year relationship with the woman I thought I was going to marry. The relationship ended mutually, with enormous amounts of love, respect and compassion on both sides, and it was the right decision for both of us.

And yet, I'm still feeling pain like I have never experienced before. Thinking of her with someone else tears me up from the inside out. Despite busying myself with activism and creative projects, my mind cycles back to her, us and everything I could have done differently. Imagine the pain, confusion and desperation that everyone goes through after heartbreak, and then multiply it by 10: that's where I'm at. Sometimes I'm fine. But then the smallest thing breaks me, and it takes hours to recover from the ensuing spiral.

I see a recipe I want to cook for you. I break.

I see that book we'd been talking about for months. I break.

I watch a film that I know your grandad would have loved. I break.

My back hurts and I don't know why. Then I remember it's because you're not here to remind me to sit on my chair properly. I break.

I try to book a holiday, and remember all of the trips that we'll never get to go on. All of the adventures we'll never to get to have together. I break. 

I'm working unbelievably hard to manage these feelings in a boundaried, and healthy way. I'm keeping my distance from my ex, giving myself time to grieve, and investing these feelings in creative pursuits. And honestly, it's exhausting. I feel drained. The longer I cope with this intensity of emotion, the more I understand the other people with my condition who haven't been empowered to cope in the same way. The more I understand the lengths that people with EUPD would go to in order to stop the pain: whether that's inventing new partners, or burning down houses. And the angrier I get that these 'Crazy-Ex Gf's' aren't getting the help, compassion and respect that they so clearly need, and deserve. 

Lucy Jane Dickson is a queer 25 year old performer, writer and charity fundraiser with Borderline Personality Disorder. She is a passionate activist who frequently writes about her experiences of the intersections of queerness, fatness and disability. She is also one half of Queerly Productions: a production company dedicated to creating Musical Theatre work for Queer women and Trans performers. You can follow Lucy and Queerly Productions on Twitter.