2022 Wrap-Up

Natasha: 

Hello and welcome to The Rest Room, the podcast about living well with chronic illness. I’m your host, Natasha Lipman. 

I can’t believe I’m saying this, but this is our final episode of 2022 and it’s dedicated to revisiting some of the amazing guests we’ve had on the show this year, and reflecting on what we’ve learned. 

Before we start, please indulge me on a quick personal aside. This year has been the best one yet when it comes to this podcast. I’ve been working with an amazing producer (big shout out to Philly Guillou!) which means we’ve been able to consistently release two episodes a month – and with her support I’ve been able to start working on the kind of content I always felt like I needed when I was younger and early on in my diagnosis. 

2022 has been a big year for me personally, too. I travelled for the first time in years, I got married, and at the end of January, I left my job at the BBC and I moved to Substack, taking the scary (but liberating) step of trying to make The Rest Room my actual job job. I have been overwhelmed by the support and kindness of the community we have built here. And I wanted to say a huge thank you to everyone who has listened, shared, and supported my work. I hope it has made a difference to your life.  

The year is ending in a bit of a strange place. My health has been on a downswing for a little while and it hasn’t been the best of times. That being said, I’m recording this in Germany, where we’re spending 5 weeks with our family and friends out here. I’m hoping some clean air, a forest 30 seconds from the house, and a change of scenery will do me the world of good. 

Flare-ups can be emotionally and physically challenging, but thankfully I’ve had the wise words of my friend, chronic pain physiotherapist, Claire Campbell in the back of my mind from our January episode on ‘what to do when your chronic illness flares up’… 

Claire:

Understanding for you, what your main triggers are, can really help things. What I have found personally is that my early warning sign is stressful situations, particularly related to overwork. But the actual thing that ignites my flareups is the relief of stress. And I have recognised that over the years, by doing the best I can with quite often unreasonable deadlines, that relief of stress, then, doesn’t have the same potency behind this. And then that then means that I’m better able to manage that.

Of course, over the last two years, what I’ve recognised is that my coping strategies had been very finely honed in a pre-COVID world. And since the beginning of the pandemic, I recognised that a lot of the coping strategies that I had developed for addressing those early warning signs and getting in ahead of the flare-up were not available to me in the same way. So it’s really important to have a range of things that you can do when you recognise those early warning signs to try and reduce the impact of the flare-up, either the severity of it or the length of it, or how much it affects your day to day life.

Natasha: 

What are some common early warning signs of a flare-up?

Claire: 

So quite often, people will describe to me feelings of frustration, feelings of overwhelm. Quite often, they’ll describe that they’re doing much more than they would normally do where they’re putting themselves in a place where they’re trying to, I suppose, do the plan of what they set themselves out to do. And then, that then leads to feelings of increased pain and fatigue, overwhelming tiredness, poor sleep. And these other symptoms can then lead to an overall flare-up.

Natasha: 

So for somebody who doesn’t have a lot of experience recognising smaller changes in symptoms and recognising some of those early signs, what are some really simple ways for people who are beginners in this to start noticing?

Claire: 

Unfortunately, I would say the best way of working out what your early signs are, are reflecting on the lead up to flare-ups. So it can feel like a bit of trial and error in the beginning, where you look at what you were doing in the days before and looking at your routines and if things changed, or how you went about your day to day life. And then, noticing what were those kind of early signs that you missed on that occasion? Unfortunately, that seems to be one of the better ways of identifying what are your personal early signs.

I think people really have difficulty in general having that kind of backward view when you’re in a flare-up, because it’s such a difficult time. It can feel like you are looking around to try to find something to manage the symptoms that you’re having at the time. So sometimes it can be helpful to wait until after the flare-up has eased before you explore what those early warning signs are.

But even making a note or having some kind of a diary or a planner where you can see what your activities were in the days proceeding, that can be really helpful. And then it’s a bit of experimenting because you’re then having a look and seeing, “Well, I thought that was an early warning sign that time. So if I address that next time, how do does that affect the flare-up? How does that make the next time look different?” This can feel really slow, but it can be really effective in identifying and reducing the impact of flare-ups.

Natasha: 

Honestly, it has been so helpful for me to come back and listen to this as I try to navigate my changing capacity. I know that I have definitely pushed myself too much this year, as well as dealing with a whole lot of stuff that was out of my control that then had an impact on my health. 

I’ve been trying really hard to listen to my own advice and spread my activity spend throughout the day and be really mindful about scheduling in rest. And it’s quite funny having Philly tell me off when I don’t do this when it comes to the podcast!

You might remember that I’ve talked about how I find blocking out rest breaks in my calendar particularly helpful – using big red blocks to encourage me to pay attention to my activity spend throughout the day. 

But even though a big part of what we explore on The Rest Room is how to pace, the reality is I am only human and it’s something that I have always struggled with – which is, to be honest, a big reason why I cover it so much! 

But I did go back and listen to my episode on pacing and breaking the boom and bust cycle with my amazing Occupational Therapist Jo Southall, and this bit stuck with me about how to start implementing pacing into your day to day life…

Jo: 

Tips and tricks wise, the first thing I always talk about is micro breaks. And I talk about this in so many situations that probably people who work with me repeatedly are sick of it at this point. 

But micro breaks, all we’re talking about are like 10 to 30 seconds of not doing the thing you’re currently doing. There are a lot of activities when we’re in the flow where there’s kind of like dead space time. That’s like you are doing an activity, but your active participation isn’t required. And I always use emails as an example for this. So quite a lot of us will get stuck into the flow with emails, where you do an email, you press send, you immediately click on the next thing. And I found myself pressing send, watching my inbox taskbar sync, and then doing the next thing. I don’t do that anymore.

My inbox will sync whether I observe it or not. So now I’ll stop and stretch,  raise my arms above my head, roll my shoulders, get my circulation going, have a sip of drink, wiggle my toes, and then I’ll go back to work. 

I also use micro breaks to start recognising symptoms. 

So what a lot of the us do, particularly if we’ve got overlapping symptoms (and pain is a key one for this, pacing isn’t all about fatigue, it’s about things like pain as well) what we’ll do is completely ignore all sensory information from our bodies for as long as it’s humanly possible, until alarms are going off and sirens are blaring and there’s flashing warning lights about all of the symptoms we should have taken care of ages ago. 

I am constantly amazed by my client’s abilities to push through with things that would land regular people in hospital and they’ll just keep going.

But actually, if when you take a micro break, you can just spend a few seconds working from head to toe and focus on, is there anything currently occurring in my body that I could fix? When you find something, don’t ignore it, deal with it when you find it. A little bit of a niggly headache is quite often fixed with a drink, a few minutes away from a screen and a little bit of fresh air, even if it’s just leaning out of your bedroom window. 

That’s a 10 minute way in which you can make yourself feel better. If you have a little bit of a niggly headache and you persevere with four hours of academic writing, squinting at a laptop whilst Harvard referencing things, or you finish the ironing, even though you really want to lay down, the situation you’re getting into is then five hours in a darkened room and a handful of painkillers.

That’s a much less efficient use of your time and it’s also really unpleasant. So if five minutes of fresh air and a cup of tea is an alternative, take the five minutes and the cup of tea option, and then you go back to work refreshed. 

The other side of pacing from a benefit perspective, not just symptom management, but in general, is that pacing actually improves the quality of your work. 

So I did a presentation for a business conference last year, and I spent quite a lot of time reading up on productivity and the best ways that the human brain engages in things. And what I found was that optimum concentration time for humans is somewhat upsettingly low – 7-20 minutes. So after a maximum of 20 minutes, the quality of your work starts to decline.

Your mind will wander, you’ll be fidgety or distracted or less focused. You are less able to produce optimum quality work, basically. 

So if you’re in this situation where you are pushing through and you reach hour four, and you feel awful, your work rate, your work quality is going to be terrible. 

Whereas if you take a micro break, it effectively resets the clock. Every time you take a rest break, you put yourself back in that 7-20 minutes of peak productivity, that peak performance area. 

So if you take breaks regularly throughout the entire day, you really are making much better use of your time, because a greater percentage of your total workload will have been done in peak performance mode rather than long hard slog, “I can just about still type if I concentrate” mode.

Natasha: 

I think I said this at the time when we recorded the episode with Jo but it never ceases to amaze me just how much of a difference even the tiniest interventions can have in helping a day feel that bit more manageable. And one of the biggest game changing tools I’ve learned from Jo is that of activity alternating…

Jo: 

This goes back to that, do a thing, have a rest where a lot of people feel like if you have to have rest breaks regularly, you don’t want to, you kind of just push through because being in rest mode, in total rest mode, it does disconnect you from the whole world. And particularly for people with pain as a symptom, distraction is a recognised and documented strategy for coping with persistent pain.

If you remove all distractions so that you can rest, what you are left with is, oh, I’m suddenly very aware of how unpleasant chronic pain is, and actually doing nothing for a lot of people is a really unpleasant experience.

So if we can replace the need to drag yourself off into a darkened room repeatedly with something that actually engages your brain but allows your body to recover. Surely that’s better.

So activity alternating, what I get people to do is to break their life into kind of three key categories. And there will be some activities or jobs that overlap these categories, so you just have to be a little bit creative with it. But by breaking it into kind of physical stuff that challenges your body, so you are kind of walking the dog, physiotherapy, going to the gym, any kind of, like I say, household chores, I’ll quite often put music on while I’m cleaning the kitchen so I can dance and wipe the workshops at the same time. Anything like that, where you are working your body quite hard.

And then equally things that healthy people think of as quite normal, but like changing bedsheets is a topic that comes up a lot. Changing bedsheets is exhausting. Wrestling with your duvet is exhausting. All of these things go in your physical category and then you’ve got the cognitive stuff. And this is often undervalued I think. We don’t think about how tiring it is thinking often, but it is, it’s exhausting.

So you’ve got any kind of academic work. Online shopping, finances are often quite a kind of drain on people, dealing with money is exhausting and scary. Anything where you have a kind of complicated thought process to follow. So like recipes or knitting patterns, all of these things can be cognitively challenging. Recording for podcasts. These things are cognitively challenging.

And then you’ve got your kind of relaxation activities, which often kind of double as rest breaks. So for me, things like knitting, but I’ve learned to do it laying down, or reading a book, or watching TV, or listening to music. All of these things are my recovery activities that I do to get a little bit energy back.

If I’ve just done something cognitively challenging, like talk, improvising for an entire hour or however long, recording a podcast, doing an appointment, I will follow that with something physical but low cognitive.

So I might go and load the dishwasher because loading the dishwasher does not require massive amounts of creative thinking or talking. But what it does do is get my body going.

So the kind of flip side to cognitive activities is that often they’re done sat quite still. So what I might find is that because I’m focused on talking and thinking, I don’t notice quite so much that my circulation in my feet is now terrible, or that I’ve got pins and needles because I’ve been sitting funny, or that my lower back has seized up.

So alternating to something physical allows me to get my circulation going. It improves digestion. It will help me ease that muscle tension. It will make me more aware of my body again, but without the need to stare at a screen or think about anything more complicated than which way up the forks go in the cutlery section.

It’s that swapping and changing that allows you to rest bits of yourself without having to rest all of yourself.

Natasha: 

I think it’s fair to say that I am naturally very prone to boom and bust tendencies, and I’ve been working hard to pay extra attention to this recently. It’s something we learnt about from Jo way back in February… 

Jo: 

So boom and bust is a pattern alternating between periods of intense activity and then crashing out to recover. So you get periods of doing loads, followed by periods of being a human zombie and doing very little. Often, this’ll follow an across-the-week pattern. 

So it’ll be Monday, did all the things, Tuesday couldn’t get out of bed. And then, on Wednesday, you’ve got yourself convinced you’re a day behind so you force yourself out of bed only to crash even harder the next day.

Natasha:

If, like me, you find it easy to fall into the dreaded boom and bust cycle, but you’ve got places to be and people to see, here’s a reminder of some of the practical things you can do to help manage those bigger occasions, using a wedding as an example… 

Jo: 

If you are thinking about doing the thing, so let’s just say it’s a wedding as an example, if you are thinking about going to a wedding and you know, you know you do not have enough energy to safely get through that day with spare room and you think, “Okay, how on earth do I manage this?” you start planning your entire week. So for the kind of week running up to the wedding, a few days running up to the wedding, do absolutely everything you can to prepare.

And that may be batch cooking meals for afterwards, laying out your outfit, pre-selecting your shoes, having your makeup, if you’re going to wear any, laid out in the exact order you need to apply it. You can pre-pack your handbag. You can get pillows in the car. 

I would set up an autoresponder for your email saying, “Leave me alone. I’m in bed.” You can turn off all your social media. You can get prepared in every single way possible so that on the day of the thing, of the wedding, all you have to focus on is getting through that day.

What you then do is look at how can you adapt that day in order to get through it as best as possible. So do you have mobility aids and yes, you can coordinate them to your outfit, but they might still be useful. 

In between the ceremony and the meal, do you go find somewhere quiet and lay down for 10 minutes with your eyes closed, listen to a podcast? Do you find somebody who can be your person? And you just say, “You know what, when I give you the nod, get me out of here and lay me down somewhere quietly.” Do you in advance speak to the bride and groom and say, “If I’m laying down in your ceremony, I’m really sorry, but I need to be prepared for it.”

Do you take a different pair of shoes with you because you know that you’re not going to tolerate a whole day in the same pair of shoes? I was a bridesmaid recently for one of my best friends. I bought slippers specifically to coordinate with my outfit to wear after the ceremony. So I wore heels until they were married and until the photos were done, and then I wore silver sparkly slippers for the rest of the day. That was one of the things I put in place to modify the event to meet my needs. So that kind of thing.

The final part of coping with that is looking at how you can use your green activities, your recovery activities, the things that don’t cause you too much exhaustion to pace the day. 

So often there’s a tendency for big things for us to go, “I will get there. I will do the thing. I will get home as quickly as possible. And I will curl up in a ball.” 

Often, if you make an event longer, it’s easier to pace. So if you were to leave early, arrive at your destination and then lay down for 10 minutes, would you be going into the event more refreshed than if you’d just driven there and got straight out of the car?

Do you actually, after the event, think, “You know what? I’m going to have a 90 minute nap before I drive home, or I’m going to go and lay down and just listen to an audiobook or read a book, or do a crossword, or do something away from people to recover,” before you tackle the going home part. You may have been out of your house for longer, but what you’ve done is turn one big activity into a series of slightly smaller, more manageable ones, which tends to work a little bit better.

The other thing to think about is your recovery period afterwards. So if you know you’re going to cause a crash, this happens, we know it does, plan a realistic recovery period afterwards. 

So if I have gone to a conference, I know that I will need to have probably two fairly easy days afterwards. The first day of that is going to be pyjamas and blankets. Non-negotiable. If I had planned: walk the dog, spin class, an hour long webinar and meal out with a friend, the first thing I would’ve had to do in the morning is cancel all of that. And that’s a really awful way to start the day. From a mental health perspective, getting up and then immediately having to admit you cannot handle what you have planned feels bad. That’s not a good feeling.

However, if you have planned a realistic recovery day, so your entire to-do list is Netflix, pillow fort, Ben & Jerry’s ice cream, microwave meals and you get all of that done, congratulations. You’ve cleared your to-do list. Isn’t that a good feeling? It changes how you feel about rest if you go into it knowing that that’s what you’re doing, that it’s a conscious decision rather than your body going, “Activities? No, no. Good try. Get back in bed.”

Natasha:

If you’re facing another year of self-managing your illnesses and the symptoms that come with them, I’d highly recommend going back and listening to my episode called ‘the problem with self-management’ with Jackie Walumbe.

Jackie is a physiotherapist working for the NHS in England and is the co-chair of the Physiotherapy Pain Association. She’s also just finished her PhD, which focuses on the self-management of chronic pain. We talked a lot about why people are falling through the gaps and why the burden of responsibility is placed so much on the patient. But it was this bit of our conversation that stuck with me when I asked Jackie what self management means to her… 

Jackie: 

It’s really difficult for me. Can I instead say what I used to think self-management is? So when I started working as a physiotherapist, we only started talking about self-management a little bit later into my career, so I don’t remember learning about it. I just remember I used to work in a musculoskeletal injuries, back pain, that kind of service, and our letters that we wrote to the GP who was our referrer would say, “The patient is successfully self-managing. We are discharging them back to your care,” and so I just assumed that self management meant that they were all good, and I don’t think I interrogated it any further than that. Then when I worked in a more specialist setting, which is my current area of self management, we used that term all the time prolifically, and I started to try and understand better what we meant by self management.

So I’ll give you a good example. We might be in a meeting with the doctors and clinical psychologists and nurses in a meeting together, and the way we would speak about self-management then would be as not what the medics do. So it was very much someone would say, “Are they suitable for self management?” And that would really be shorthand for anything that the psychologists, the physios and the nurses did, which obviously, as you can appreciate, is a huge bunch of things. And then we also talk about a self management approach and so I wanted to know, “What is a self management approach?” So I asked a couple of colleagues just in passing and I got so many different answers, and that really is what led me to do my PhD, because I thought, “This feels like a really important thing and I don’t know what we’re talking about. So what are we talking about?”

I think the issue we have is many healthcare professionals are trained, or were trained under a biomedical model. They’re really focusing on if it hurts, what’s wrong with it, let’s fix it. There has not always been the acknowledgement of, sometimes we are not able to fix it and make it as it was before. Therefore, people are living messy lives, and therefore healthcare has to accommodate for messy lives. 

I do believe that is changing. That is in the curricular for all healthcare professionals, including medicine, to basically say that health is not just about what’s happening biologically or physiologically. It’s also what’s happening in the social world. It’s also what’s happening in people’s psyche, the psychology, and everything in between. The issue we have, is we have a legacy of professionals who have been trained to look for simplicity, and working with simplicity is easier than working with complexity.

I recognise that there’s a lot of work involved in having an illness or a long-term condition with or without pain. There’s a lot of understanding work. There’s a lot of planning and processing, as well as the day-to-day life of just living. I think that is something we, as healthcare professionals, need to acknowledge. That there is a lot of wisdom in people who have been living with something for a long time.

My learning from the last four years has been, goodness me, people are completely inventing new ways of doing things by building their networks. By that, I mean, when they say it takes a village to raise a child, I think it takes a village to live with a chronic illness because you build your village around you.

I mean, we’re catching up the healthcare professionals are behind you, learning from you. But I think that idea of a networked village is really key in that day-to-day living and thriving.

Natasha:

Something I know a lot of people living with chronic illness have to juggle is brain fog, but I never really understood WHAT it actually is, beyond my own subjective experience. I loved hearing what brain fog feels like to my followers on Instagram…  

CLIP 1: Like trying to turn rusty gears that someone spilled treacle over 

CLIP 2: Like my head is in an agitated fish tank and it has water swooshing around in it 

CLIP 3: Like trying to load netflix on dial up internet on a windows 98 computer 

CLIP 4:  it feels like someone is rewinding my thoughts as I try to fast forward 

CLIP 5: Like my brain is an intricate map that had an inkwell spilled on it obliterating all detail 

Natasha: We got into this topic more with my guest Dr Sabina Brennan. She’s a health psychologist and neuroscientist who lives with brain fog herself, and is the author of the book ‘Beating Brain Fog’. Here’s her take on what brain fog actually is… 

Sabina:

Well brain fog’s not a disease. It’s not a disorder. It’s not a diagnosis. That’s important to kind of say. It is, however, a sign that something is amiss and a signal to take action. 

So really I use the term brain fog as an umbrella term to describe a collection of symptoms. That’s probably why you get so many different answers from people as to what brain fog is. One of the reasons I wrote my book, Beating Brain Fog, was to help people to pinpoint and identify which aspect of their cognitive functioning is affected so that they could take specific action or speak to their doctor about the specific area of their brain that is really affected.

So brain fog generally is associated with loss of mental clarity and inability to focus or concentrate. You’ll see problems with learning, and I don’t mean academic learning. I mean, just learning in the everyday sense. Learning how to use the washing machine or the remote control or how to do a new thing in work, and remembering. 

Also, big problems with slowing of thinking and issues with language. Word finding is quite common and trouble navigating spaces, which a lot of people would describe as clumsiness. People are often surprised to hear that’s part of brain fog, but navigating your way around the world is controlled by your brain and it happens to be affected also when you have brain fog.

Natasha:

Sabina shared some tips on how to start thinking about this. Of course, as always, we explore in more detail on the episode itself how to adapt this advice in a chronic illness friendly way…

Sabine:

Learning anything, the whole thing is novelty. And that’s why I wish there was another word for learning, because we so associate learning with sort of negative connotations in school, and learning things off by rote. But you know, it could be learning carpentry, how to do cross stitching, learning the lyrics of a song, anything. Preferably something that you love doing, and that you’ve wanted to do. Set yourself small goals, small steps, but the challenge aspect of it is what is important.

You know people often say to me, “Oh, I do crosswords every day. I’m challenging my brain every day.” Well, actually no, you’re not. When you learn how to do crosswords, that promotes neuroplasticity. Once you know how to do them, and they’re easy for you, there’s no learning involved so there’s no neuroplasticity benefiting. If you’re enjoying it, that’s fab. When you learn something new, this is why I’m a fan of to-do lists, if you have a to-do list or if you have a wishlist of things that you would like to achieve, even if they’re really small, even just ticking them off the list activates the reward centres in your brain, and dopamine is released, and you feel good.

Yeah, and it is important, that sense of achievement.

Natasha: 

On The Rest Room, and especially in the newsletter, I share a lot about my own experiences with chronic illness in the hopes that it might help some of you listening – but one of my favourite things we’ve done this year is share some of the stories of others. 

Both from the perspectives of other chronically ill people and those who aren’t chronically ill but love someone who is! These conversations have been some of the most powerful and stand out for me. 

Including this conversation with one of my oldest and dearest friends, Natasha Misri who was diagnosed with ME when she was 12… 

Natasha Misri:

I really didn’t think of myself at all. I think that’s why when I was 16, I got really, I got really, really low.

I just hated myself. Oh, I’m going to get all emotional. I really hated myself. Sorry. My body kept failing me. And so I couldn’t do all the things that I so desperately wanted to do. I couldn’t be a part of friendship groups. I couldn’t go out. I couldn’t do anything. And this thing, my body, which is supposed to get me from point A point B, it’s supposed to be on my side. It just kept on failing. And I think the other thing is at this point, I was still trying to navigate the illness. I don’t know whether that makes much sense, but I was still getting to terms with the ME.

Whereas now, now I know ME so intimately. So, I know when I’m having a good day, I know when I’m having a bad day, I don’t try and put too much pressure on myself.

I don’t beat myself up. I try and be my own best friend. It’s okay. I can try mindfulness, et cetera, et cetera.

But back then, I still wasn’t well versed. And so if I had a good week, I would just assume this was now sort of my trajectory was up. I always thought it would just be linear. It’s going to go this way. I didn’t realise that I would just have ups and downs. And I think you and I have said this, where if we’ve had a setback, we then really take it personally or can take it personally. And the difference between saying a flare up and a blip. And so I think for me, year nine, year 10. So, that’s what, 14, 15, 16. I felt that there was so much stop and start. I felt like, oh, I’m getting to grips.

I’m starting to be able to attend some classes. And then something would happen. I’d get like a cold or I’d get just knocked off, or just a flare up. I would just get knocked back off course. And so I felt all these friendships, all these relationships were just so fragile. It just felt like everything was being taken away from me.

And I do now kind of have almost, I can be quite self sabotaging where I’ll sort of think, no I’m going to pull the sort of like, I’m going to push the eject button on this. Because at least if things end on my terms, I can say, when things end. As opposed to, at some point, this is all going to be taken away from me. That’s been my attitude. At some point this is all going to be taken away. And that’s been very much ingrained in me since I was about that age, because everything was.

Natasha Lipman:

How do you feel with your health now? And also, how do you feel looking back on 12 year old Natasha?

Natasha Misri:

There are definitely times and you’ll just think this is just so me. This was so me age 16. There are times where I will genuinely really feel like mum help. I can’t do this. I don’t know how to make this appointment. You know when you just are so fatigued and you are so over it, you’re just so tired. You’re just so tired to your core where you think I’m not making any sense. I know if I’m trying to make an appointment, I will make the wrong appointment. I just need assistance. Mummy help. But I definitely, as you said, it’s been over two decades. So, I feel almost for the first decade of being ill, I would say I saw my illness as almost like a captor. This was the thing that had imprisoned me.

This was the thing that took me away. This was an evil force in my life. I really, really, I hated it. I hated my body as a result. And then I wouldn’t say I see it as a friend, but I definitely don’t see it as an enemy. I just see it as a part of me. I’m far more accepting of it and I’m far more accepting of my limitations.

Natasha: 

Another very popular episode of The Rest Room this year was Sebastian’s first podcast appearance. He enjoyed it so much he wants to come back on – so I think we’ll need to find some good topics. Perhaps a physicist debunking some of the pseudoscientific ‘healing’ emails I’ve been sent over the years?!

We sat down about 10 days out from our wedding (and very soon after he got out of Covid quarantine) to discuss the impact chronic illness can have on relationships. It’s one of the questions I get asked about the most on instagram whether that’s romantic relationships, friendships, familial. Because, as we know, chronic illness can have a trickle down effect on all aspects of our life and those closest to us. 

But since Sebastian and I were about to tie the knot, it got me thinking about a time when I couldn’t ever see myself in a happy and healthy relationship. I didn’t even want to be with myself, so how could I expect someone else to want to be with me? But it turns out I was wrong. I learned to accept that I am worthy of love and it was amazing to hear Sebastian’s take on being with someone who is chronically ill… 

Sebastian:

So one thing that always annoyed me is like being portrayed as the martyr, because at one point or another in any relationship, if you’re together long enough, one partner is probably going to become disabled in one form or another, like just with old age. What, are you going to leave your partner when they’re 60 and they have, I don’t know, cancer or something? So that’s one thing that really annoyed me. And I also thought like, there’s something a bit sexist about it, because I wonder if it had been reversed and I had the health issues whether anyone would’ve made a fuss about you taking care of me because that’s kind of expected of you. So that’s the other thing that really annoyed me about this.

So the thing is that relationships and dating are just hard in general anyway, it ultimately really comes down to everyone as individuals and finding the right person for you, which is hard anyway, whether you are disabled, non-disabled, there’s always be people who can’t deal with things and they’re just not your people. And so also just from my perspective, I think that this really brought us closer together. And so for example, I think you said that earlier that it’s also very intimate. So for example, when Natasha’s too tired, then I have to pull down her leggings for her because she’s too tired to do that. I think also just in general, it really means we have to, which I think we’ve been trying to drive home in our conversation is that we really had to talk and communicate a lot and think if it works, it really, really works.

Might not look like Hollywoods or like films and TV are trying to sell you, but who cares, if people looked at us, they would think we’re shmerels. Also just means because we’re communicating all the time, it really means that we’re very clear about what we expect from one another. And I think there’s not really a case of where, except in very rare occasions where one of us is disappointed in the other because we didn’t make it clear or thought that we can magically read each other’s minds, which is, I think is a big problem in a lot of cases, the thing is also, ultimately everyone deserves to be loved and deserves respect. And just because one person’s ill doesn’t change anything. For you it’s been really hard to accept that you deserve that. And you found that really difficult, I think at the beginning. So took you a full six months or so to accept that.

Natasha:

Oh, I think it was years. 

Sebastian:

Fair enough. And I think it’s also just being flexible and open and understanding and finding humour and joy in things that is really important. And we all bring different things to the relationship to the table, and whether ill or not. And it’s about the person that you match with.

Natasha:

So as we head into 2023 – what lessons can we take from 2022 and keep at the forefront of our minds? If you have lots of interactions with medical professionals, here’s a good one from Dr Hannah Barham-Brown, a chronically ill GP and disability activist… 

Hannah: 

So particularly at the moment, and this is why I say at the moment the NHS is not built for people with chronic illnesses at all, the infrastructure isn’t there, because at the moment trying to get consistent appointments with a GP that knows you is incredibly hard.

And so as a result, I often get patients who come in and often quite rightly assume that I haven’t been able to read their entire medical history. I will have had a glance to try and work out what is coming in. So any information you can give about the specific reason for that appointment beforehand, hugely important.

People think that the receptionists are just nosy women who run the desk. That’s completely not true. That information, that five word, here to discuss UTI, here to discuss whatever it might be, is absolute gold dust to me as a clinician. That’s what I want because then I can flick through your notes and go, “Right, I don’t need to think about that today. I don’t need to think about that today. I don’t need to think about that today. Let’s focus in on that history of UTI or whatever it was a year ago.”

So that’s really important, but it’s very hard to get those consistent appointments for the GP and it’s very hard to get enough time to do all of this. So often I really encourage people to come in with a list. And my more complicated patients, if they come in with a list like the size of my arm, that’s not uncommon. Even my technically not complicated patients do that quite often because it can be so hard to get appointments and I completely understand why.

I will often sit there and go, “Right, first things first, let’s go through this list. Let’s work out if there’s anything on there that’s ringing alarm bells in my head that I need to deal with acutely and let’s make a plan potentially to get you back.” Because I think that’s really important to try and build those relationships and bring back …

Obviously that’s very dependent on a system that allows you to do that, and at the moment a lot of the systems don’t allow us to do that. So I think from the perspective of what GPs can do, trying to build that relationship where we’re not constantly firefighting is really, really key, but it’s really, really hard.

I always try and come at things as a kind of partnership with my patients. I bring something to the table, which is 10 years of medical expertise and a lot of training and far too many exams, but I don’t live in that person’s body. I don’t have that person’s day-to-day experience. I don’t know if they’re struggling to go to the shops to get food, whether they’re also caring for five or six family members, whatever it might be. That is what the individual brings. That is what the patient brings.

And so I think we have to start, medicine is trying to do that more, seeing it as more of a partnership, a working relationship, than this doctor has access to this, doctor can send you to this, doctor can fix this, because actually a lot of the time I can’t fix things. That’s very hard.

People come to me and they expect me to be able to go, “Take this pill and your problems will go away. Go and see the specialist and your problems will go away.” And we are not good at having the conversations of going, “You know what? Yeah, you may be living in pain for the rest of your life. I can’t fix that. Nobody can fix that. How can we work together to ensure you still have a really good quality of life?”

And those are the discussions that take time and they take a good relationship because if you come in and you go, “I’m in pain and I need it fixing,” and my immediate response is, “Can’t sorry, that’s you forever. How can we make that better?” you’re not going to sit there going, “Oh my goodness, what a great GP. I’m so pleased with this appointment.”

You’re going to go, “Bloody hell. She’s got no idea what’s wrong with me. I’m going to go and see another one. I just want more drugs. I want X, Y, Z,” which is totally understandable if you’re living in pain and it’s affecting every single decision you make all day, but that’s not necessarily the best thing. But you need time to build the relationship where as a patient you trust me, and where as a doctor I can say to you, “Honestly, we need to think around this more.”

So I’m not sure whether I answered your question because it’s such a complex area and it’s so patient and physician specific and system specific. So it’s quite daunting to try and go, “I know how to fix this.”

Natasha: 

And if you’re thinking about trying to find accessible ways to work in the new year, don’t forget to go back and listen to our 2022 episodes about navigating work with chronic illness. 

We were joined by Pippa Stacey, a writer, blogger and public speaker who works with the UK charity Astriid, which matches talented people with long-term health conditions with meaningful work… 

Pippa: 

What we’re also trying to normalise is that somebody might need 16, 18 hours a month or even less. And those people should still be able to engage with work as well if they want to. That’s definitely one of the big things at the minute. 

In the past, we’ve had such a set idea of what a working day looks like. It’s somebody going into an office at 9:00 and coming out at 5:00, and probably sitting on a computer all day. I know that something that I’ve experienced in the past is having older relatives from a different generation just not understanding the fact that I have a job, but I don’t leave my front door to do it, and that we have very fixed ways of viewing, not just work, but productivity and contributing to society. It’s not just disabled people who sometimes fall outside of these norms now. It’s people who have children, people who have caring responsibilities.

Natasha: 

We also heard from some of my Instagram followers about the challenges they’ve faced when it comes to finding and securing meaningful employment…  

Ellie: 

My main barrier for getting a job with chronic illness was initially my physical symptoms, namely the fatigue and extreme brain fog. Now that my conditions are managed better, my primary challenge finding work is looking for a flexible enough job that I can do from home, and having understanding employers who work with my health to get the best results and not against it by giving me strict working hours or an excessive workload.

Grace: 

When it was really bad, and I was in a lot of pain, I was literally waking up in the morning, crawling to my desk, sitting on Zoom meetings from dawn until dusk, and crawling back into bed, trying to use hot water bottles and different pain medications to keep me going through the day. And it’s really hard because you’re almost having to take on this persona while you’re doing the Zoom meetings that everything’s okay. I ended up having to go on sick leave for around eight or nine months because it just became completely unattainable, and even though I was very transparent with them, in reality they weren’t going to change the ways of working or provide extra support.

It took a really long time to get back, and even the confidence to go back to work. But actually while I was unwell, and I was still pretty much bedbound, I was approached by a company who have offices about 15 minutes drive away from where I live, who are more of a startup, and very much into flexible working. They have policies where it’s around work where it works for you, and so I knew already that it was going to be the kind of place that would allow for my disability, but also mean that I could get some sort of life back. Because I was finding I was losing myself, and what I really enjoyed in working and having a purpose every day. I had other hobbies, I had different passions, but actually I really missed the face to face interaction and working on a problem with lots of different people.

I went through the application process and I was transparent from the beginning about my illness, and I would really implore other people to do the same. I managed to get the job, and my takeaway from all of this is make sure you find an organisation that accepts you and your skills and yourself, your whole self, for who you are.

Ellie:

A few years ago I had to quit a job which I was working three days a week because it was inaccessible, it was making me sicker and sicker, and I was told any reasonable adjustments would be preferential treatment.

I then started working at my current workplace, which is a Disabled Person’s Organisation where I manage our communications. I started on one day a week, but due to the adjustments and support I received, I’m now able to work full-time.

As well as supporting me with applying to Access to Work, mentoring me through the process, and then helping me access the Access to Work provisions themselves, and things like flexible working hours and structures, the main difference has been attitudinal. There’s a recognition that everyone works best in different ways, and conversations about access needs happen way before the legal reasonable adjustments are even discussed. That includes everything from how I access my work desk, to having a fan provided for me, to providing me with workplace strategy coaching to transform the way I feel in the workplace.

Honestly, the whole thing has reduced the fatigue I experience in many different ways, not least because I no longer have to go through the tiring process of self-advocating at every step. It’s transformed my ability to work and also transformed how I feel about my illnesses and my disability.

Natasha:

And I put Pippa on the spot to ask about some of the workplace adjustments that may be helpful for people living with chronic illness..go!

Pippa: 

Ergonomic equipment, like comfy seats and especially adapted mouse.

Assistive technology, so voice to text software, text to speech software. You can get plugins like Grammarly to help your writing easier if you’ve got brain fog.

Switching webpages to reader mode. There are different household schemes, if you work from home.

Things like Warm Home Benefit to help with additional costs.

If you’re working out of the house, taxis to and from the office, subsidised public transport, disabled parking spaces.

Support workers or job coaches. A lot of people don’t realise they’re entitled to them.

Learning how to advocate for yourself.

Engaging with training where you can.

Software to help you manage your day better.

Things that make it easier to book in meetings with other people a little bit easier.

Heating pads, all of the things that help you to manage pain on a daily basis.

Having a quiet space in the office if you’re working around other people.

Changing the ways that you communicate with other people, so whether you prefer a phone call or an email conversation, or a text conversation.

Changing your working patterns so that you have meetings at different times in the day, and you do your solo work at different times in the day.

Oh my goodness. Oh my goodness. I think I got most of them in there! 

Natasha:

Finally, I want to leave you with these words of hope from Joint Hypermobility & Ehlers-Danlos Syndrome Movement Therapist, Jeannie Di Bon…

Jeannie:

Yeah. And what you’re saying, I hear all the time as well, you’re saying a lot of things. Is there hope? Shall I just give up? And so many people are actually… Do you know what the shocking thing is? So many people are told, “Well, there’s nothing that can be done really.” You’ve got these conditions.” Someone told me today actually, I saw a client this morning. She was told, “Well, good luck. You’ve got EDS. There’s not really much you can do.”

I’m horrified. I’m absolutely horrified because I always say, I don’t care where someone is today. If they’re bedbound and several of my clients are bedbound or if they’re mobility wheelchair users or wherever, or if they’re more functional, doesn’t matter where you are. There’s always something we can do. Always, always. So being told, “Good luck and off you go,” isn’t really helping.

So like you say, you are kind of left floundering. What do I do? That I’ve been told, “Just get on with my life,” but I don’t know how to get on with my life anymore. And like you said, I’m scared. My joints are popping out, I’m in pain. I don’t know whether I can do the physiotherapy. I don’t know whether I can… whatever it might be. People are scared.

So oftentimes people come to me and it’s not just the physical that I’m dealing with because I do have people who are scared of movement, who have had terrible experiences in the past and they’re looking for some hope. And I really believe I give that to people because this is what I do. I’ve been there as well, myself. But in terms of what I do differently, you touched on it. A lot of the work out there is very joint specific, which we need.

Obviously, if people are subluxing their shoulders or hips or whatever, but at the same time, you need to put that person back together as a whole person, an emotional person, a psychological person, as a physical person. They’re not just a shoulder joint. You can’t. And the way I look at it is I call my method the integral movement method, because I want to see the whole being. I want to see how everything is impacting that person. And where does that individual person need to start? What do we need to start with? Do we just need to talk? Do we need to work on breath? Are they a little bit further along? Do we need to do some stability work?

Who knows? It’s going to be different for everyone, but yeah, it’s a very complex condition for us and it needs to be looked at as a whole picture. 

So I think what I do, which is very different to maybe some people is I spend a lot of time helping people feel safe, whatever that means to that individual, because if the person doesn’t feel safe, so for you, for example, in your kitchen, on your wet floor, what can we do to help your brain feel safe about that? What do we need to put in place for you to feel safe?

And it’s the same. When people come to my studio, what does this person need right now to help them feel a little bit safer about working with me, about trusting me? So that we can start to maybe move, but they have to feel safe. That is so, so key because if I just say, “Right, come on, don’t be silly. Let’s just start moving.” That’s not going to work. 

Typically we are going to start with the breath. It’s so important. I call it the thermometer. Your breathing will tell me so much about how you are feeling and what’s going on for you inside. 

So we start there, we start with relaxation and we see… I have people bursting into tears on my table because there’s a lot of pent up emotion and stress and that’s fine. Let’s get it out. Better to have it out than store all that inside, and that’s all part of the healing. There is a certain amount of healing that we have to go through.

In a sense, it’s a very lovely process. I think it’s where the magic happens because you literally can feel someone’s tissue change under your fingertips as you feel that muscular tension drop away from them and they do start to feel safe, and I just think that’s wonderful to be able to help someone do that.

Natasha: 

A big thank you to all my contributors this year – there were too many amazing moments to feature in this one episode but I hope you enjoyed listening to some of my personal highlights. We have so many amazing plans for the show next year so I really hope you’ll join us for the ride.  

If you’ve benefited from my work this year and want to support me heading into 2023, please consider subscribing to the Rest Room podcast and newsletter on Substack.

It’s an in-depth look at how to live (and live well) with chronic illness. Find out more and become a free or premium subscriber at natashalipman.substack.com. Premium memberships are £5 a month or £50 a year and give you access to exclusive content.  

Whether you celebrate Christmas or not, I’m wishing you a happy and healthy festive season – and don’t forget to listen to my last episode with Jo Southall about how to navigate this festive time of year! She shares all the pacing tips to make it through. 

Please rate, leave a review, and share the episode as that really helps new people find us.

Aaand that’s all from me – I’ll see you next year! Thanks so much for joining me in The Rest Room. Ta ta for now!