Chronic Sh*t Warrior

You may or may not be familiar with the stages of grief model that is often referenced by counsellors and popular culture. There are a few versions of this (including a very funny Game of Thrones version) but the most cited one features five stages. These are: Denial, Anger, Bargaining, Depression & Acceptance. You may not think to apply this sort of thinking to your chronic illness journey, but I assure you that it is incredibly relevant. I’ve adapted it slightly to fit the struggle with illness and it’s something that I will refer to throughout the book. See if you recognise yourself in any of these examples:

Shock:

Omg! I’ve been (finally) diagnosed with something! Crap…I have no idea what to do/say/think. Everyone is asking me how I feel and I have no bloody idea. How am I supposed to feel?! I’ve never done this before!

Denial:

I don’t accept this. It can’t be happening. They’ve got it wrong. Bloody doctors! There’s nothing wrong with me, I’m just tired/hungry/low in potassium/the moon is in Jupiter’s orbit and it’s thrown my third chakra out of whack etc.

Anger:

This isn’t fucking fair! How the bollocking buggery am I supposed to cope with this? Piss off with your stupid advice, you have no idea how I feel! Oh yeah, I’m sure you have loads of problems with your perfect life and healthy body—fuck you! Back away from me nice and slowly and you might leave with all your fingers intact.

Loss:

I miss me. I miss the old me, the healthy me, the better me. I hate this new person-I don’t understand how to live this way. I want to go back to my old life when things didn’t hurt and having a shower didn’t cause me to lay down for half an hour because I’m so bloody tired!

Bargaining:

If I have a healthy diet and get exactly eight hours of sleep a night then I won’t get ill. I won’t take these medications that the doctor has prescribed me because I hate the side effects but it’s ok because I didn’t take them yesterday and I felt alright then.

Acceptance:

I have a chronic illness. I’m aware of my limitations most of the time. But it still gets me down. I guess acceptance doesn’t always mean that I’ll feel ok with it.

Self-soothing:

I don’t feel overly well and that’s ok. I’m going to go home, lay on the sofa and watch back-to-back Disney films whilst consuming an entire tub of Ben & Jerry’s Chunky Monkey ice cream. I’m not going to do the dishes because I don’t have the energy for that today and that’s ok. Maybe tomorrow will be a better day.

Sound familiar? It’s important to note that these stages aren’t linear. You don’t start at 1 and end up at 7. You dip in and out of each stage, sometimes on an hourly basis. It’s also quite possible that you only recognise yourself in some of the stages. I know that anger is a stage I fall back on A LOT when I fall out of kilter (my poor fiancé!) but bargaining is something that I don’t tend to do very often. I’m getting better at self-soothing, but loss is the most painful for me. That’s because chronic illness is a form of bereavement.

Today might be a good ‘acceptance’ type day. You might have embraced your inner chronic illness warrior and be living within your limitations. You might have embraced honest and difficult conversations with your friends to the tune of: “I don’t think going to see a late-night film is going to work for me tonight. I have to be up early in the morning and I need to charge my batteries for the day ahead. I’d love to have coffee at lunch time though.” Wow. Get you, you little star. You’re firing on all cylinders and protecting yourself in the bargain. However, like all emotional states, each one of the stages are transient. They don’t last. They can’t. The pendulum of life will inevitably swing between the stages and the best that you can hope for is that you don’t get whiplash in the process. The key thing to remember is to not get stuck in one stage for too long, even the so-called positive stages. Self-soothing is fantastic; it helps you to be your own comforting parent whilst you’re giving yourself permission to simply ‘be’. However, stay in self-soothing mode for too long and you’ll fester on the sofa consuming Tesco’s supply of Dairy Milk whilst crying and singing ‘Under the Sea’ through rotten teeth. There must be a time when you re-embrace your semblance of normal and challenge yourself to achieve new things. These may lead to failure; this may lead to feeling angry or a sense of loss as you are unable to do what you used to be able to. And then you might need to self-soothe until you’re ready to re-join the world. And thus the cycle starts again. But RECOGNISING each stage and being kind to yourself is at the epicentre of successfully living with a chronic illness.

Well, don’t I sound like I’ve got my shit together! Here’s me giving out this advice, sounding like I’m the big ‘I am’ of the chronic illness world. If you’re having a crap day, I must sound like the ‘Positive Peter’ of the previous blog and, for that, I apologise. I’m afraid the only way that I can give you this advice is because I have well and truly festered in each and every stage and watched my life surreptitiously crumbling around my feet. I have cuddled up in a blanket of loss and refused to come out. I have spent months breathing fire and pushing everyone away in a flaming inferno of anger. And my months of denial have resulted in some very hairy and life-threatening admissions to hospital as I have pushed myself to the limit of what my body is able to do. None of this was fun and none of it was healthy. Life with a chronic illness is a massive learning curve of emotional shit on top of the physical shit that plagues us every day, and there are huge peaks and troughs along the way. Sometimes, just saying: “I’m having an angry moment and I need to be left alone. I don’t want to say anything that I don’t mean so I’m going to take myself away and deal with it” is enough for you and your loved ones to recognise your emotional stage and act accordingly. It sounds disgustingly simple, doesn’t it? The truth is, having the same self-awareness of your emotional states as you do to your physical states is simple. It’s just not easy. Start by showing your loved ones/friends/significant other/siblings the 7 emotional states. Explain if one particular stage rings true for you and what that might look like. And then, when you find yourself in the grips of one, you should be able to say ‘I’m struggling with denial/bargaining etc today’ and, hopefully, that should be enough to explain your actions and deal with the fallout a bit better. It’ll never be easy, but the goal is to prevent a Hiroshima- style mushroom shit cloud from hitting your family and engulfing your life. Small steps you wonderful warriors. Small but steady.

Guilt. It’s a horrendous emotion. Anyone who has ever laboured like Atlas under this monumental burden knows that it can drain the life’s blood out of even the most stoic. However, guilt seems to have a particular penchant for chronic illness. It’s like it gets an all-you-can-eat-buffet feeding from the insecurities that plague our medical tumults. What do I feel guilty about? Let me count the ways…

Financial/ work guilt:

I had a severe case of this this week and it completely knocked me sideways. It started one morning when my fiancé came downstairs suited and booted preparing for a big meeting he had in London.  He’d been up until ungodly hours the night before doing paperwork and was stressed. I hate it when loved ones are stressed because I immediately want to do something to ease their worries. Now, stress is a funny thing in a romantic relationship. The way I see it, if a partner is stressed, you have two options (well, three if you choose to completely ignore them). You can a) Remove some of the stress by taking on other jobs—cooking, cleaning, bonsai tree care etc.—thus easing the pressure on your other half’s furrowed brow, or you can b) share and empathise with the stress because you’re equally as burnt out running a multi-million pound conglomerate and you can bond over the hardships of commerce.

My problem over the last couple of weeks is that I could do neither of those things. I haven’t been able to go to work because a particularly nasty flare has been royally kicking my arse and I simply felt too ill. What I wanted to say was “Ah babe, I’m so sorry you’re stressed. I completely know how you feel as I’ve had a horrendous day too: Mr Rogers got a spontaneous erection whilst I was washing him and then proceeded to throw up all over Mr Stevens in the next bed. How about I do dinner tonight and you can do it tomorrow night?” But I couldn’t regale him with tales of vomiting patients or paperwork that would never cease, and I couldn’t take on more around the house because I could barely function. In fact, all I felt able to do is sit down and rest. But if that’s all I could do, what’s my role in this relationship? What am I contributing? In my head, this was what I must have looked like:

Whilst my fiancé looked like this:

It’s not a great picture is it? I decided not to lay down and rest. Instead, I struggled on, slowly making dinner with spontaneous grunts of ‘ouch’ and ‘ooh’ closely resembling a female tennis player. I thought this might be helpful, but this just seemed to irritate him more and I got the familiar fix-it Fred shout from the other room: “Just leave it and I’ll come and do it in a minute! Just sit down!” Brilliant. So, I come and sit down whilst he manically finishes his work and then struggles to do dinner, waiting on me like some kind of contorted version of Thunderbird’s Lady Penelope? That to me just seems like an invitation for an entire shit blizzard of guilt, and, at that moment, I didn’t think I could cope with that. I couldn’t leave him to struggle with the financial burden of running the house (because, let’s face it, even if I was at work I don’t make as much money as him because I can’t hold down a full-time, well-paid job because my body hates me) and do the domestic chores and leave him to run his own business. That’s just a one-way ticket to Low Self-Esteemville.

When the balance of our relationship shifts in this way, I don’t even feel like I can tell him that I’m tired. Even though I’m thoroughly exhausted, my brain still rationalises that I can’t be as tired as him. After all, what have I done all day? I walked the dog. I tidied. I showered. And even though I know that there’s a reason why one of the most famous Memes circulating the internet is “You don’t know what fatigue is until you’ve had to rest after having a shower” how can I voice this to him? “Oh yes darling, I’m sure you’re exhausted after driving to Southampton all week whilst running your own business, but I’ve showered today!” Even writing this sentence seems ridiculous. I feel like I need a justifiable reason to be tired. Like if I had been at work all day I’d be perfectly ok to say that I was tired. Everyone understands work tiredness. It’s socially acceptable. The tiredness that comes from fighting an invisible internal battle is less acceptable.

I know this is an issue that many of us struggle with. I know that this is one of the areas that I can’t cope with when I’m flaring. I hate feeling like a useless burden. Underneath all of this is a need to explain and rationalise my fatigue. Like I have to compete. Don’t get me wrong, my fiancé never asks me to go above and beyond to prove myself. He never doubts my struggles. But, somehow, this just makes it worse. I want to help; I want to contribute to our relationship like ‘normal’ people do. But isn’t this the issue? I’m not normal (I’ll pause for laughter from family and friends here). I’m not being self-deprecating, but the fact remains that I have different limitations to my fiancé because I’m not healthy. I can’t push myself to the limit and then come home and dash away with a smoothing iron. When I’m having a good day, I’m pretty good at recognising those limitations and, unless I’m being particularly stubborn, I normally adhere to them. But on a bad day…

During my time in counselling, this issue of normality came up a lot. It was a word that always used to pop up if I was having a bad time or a particularly awful flare. We would discuss my longing to be normal and I would come up with a list of qualities that ALL ‘normal’ (i.e. not sick) people have. By the end of the list, I had turned the majority of the population into superheroes, able to do anything and everything. This was what I should be doing. Everyone else manages to work, maintain a relationship, exercise, raise children, have well-behaved pets and a vibrant and exciting social life. And they do ALL of these things ALL of the time. They don’t struggle or complain. And then my counsellor would ask me how many people I knew fitted this description. “All of them!” I would reply. She’d look at my quizzically and I’d laugh. Because, realistically, I didn’t know anyone that didn’t struggle, irrespective of whether they were healthy or not. So why, when we’re flaring, do we think that everyone in the world is managing perfectly whilst we’re sitting in a puddle of our own juices feeling exhausted at the idea of getting a drink of water?

I think it comes back to the notion of grieving for our pre-illness self, and only being able to see the limitations and restrictions of our current lives. We forget to see any positives because, in our head, there aren’t any. I think this is where the notion of self-care comes in. The question that I was constantly told to ask myself in counselling is “What do you

need?” If I look back at the relationship scenario at the beginning of this segment, I feel like I may have left an option out. What I needed was to rest. To lay down and sleep. So how could I have done that whilst still maintaining a relationship? Perhaps the notion of communication is about to raise its ugly head again. Couldn’t I have told him that I was sorry he was stressed, that I was grateful for what he did and that I was always here to listen to him? Couldn’t I have said that I didn’t have the energy to cook dinner but that there was a pizza in the fridge that I could put on for him before I went to bed? Would it have been so hard to explain my feelings without the need to compete in the ‘Who’s more tired’ Olympics?

I spoke to a fellow chronic illness sufferer about this and she told me several strategies that she uses with her husband to overcome these situations. When she was having an ok day, she sat down with her husband to explain to him how it felt when she was poorly. She told him all about what she could and couldn’t do, and what he could do to help in those situations. When she was poorly, they didn’t need to have a conversation about it. He knew what she was going through, and he knew exactly what to do. It got me thinking, so I’ve compiled a list of suggested strategies that might help if you find yourself in this situation:

• Keep a couple of basic, chuck-in-the-oven meals in the freezer to use when you’re flaring. That way, you don’t even have to think about cooking when your body is on strike
• Talk to your partner about how you feel when you’re flaring but do it when you’re feeling well and he/she is receptive. Make a list of what he/she can do to help you. Leave it somewhere that’s accessible
• Have a non-verbal way of explaining how you’re feeling if you’re really struggling. This might include post-its, a text, a thumbs-down emoji or maybe a fridge magnet. There’s nothing worse than trying to articulate feelings when you feel like shit.
• Remember that being in a partnership is as much about emotional support as it is about doing things. If your partner is struggling but you’re not able to do anything, give them a cuddle or send them a text (even if you’re in the same room). Let them know you’re still there for them.
• Take care of yourself. You can’t fight a flare up so take stock of what you need and do it. You’d be amazed at how much quicker you bounce back if you take some time for self-care.

This won’t be my last post on guilt. It’s a right little bastard that features in so many aspects of life with chronic illness. However, if you take one thing away from this post, please be reassured that feeling guilty is COMPLETELY NORMAL. Give yourself some compassion, rest and then bounce back to be the bloody awesome person you are.

When I was first diagnosed (after I crawled out from under the rock of denial I had thrown myself under) the word ‘support’ featured a lot in my vocabulary. I wanted support, I wasn’t getting support, I needed support, I didn’t need support…I yo-yoed between demanding people’s unwavering support, intense irritation when I didn’t get the type of support I wanted and seething anger that people assumed I needed support because ‘I’m perfectly capable thank you very much, I’m not a fucking invalid’.

At the beginning, if I dropped something on the floor that was just out of my reach and no one magically came to my aid like a knight on a multi-coloured unicorn I felt abandoned, alone and bitter. Didn’t people know I needed support just to function? Where was the help? Selfish, able-bodied bastards. However (and this is where my chronic illness really screwed with my head) if they DID appear out of the ether running in a Baywatch fashion to come to my aid I was outraged. What did they think they were doing? Do I look like I can’t do anything for myself?! Funnily enough, I don’t remember a lot of ‘support’ during this time…

The problem was that I had no idea what I needed. I wanted to feel loved but not mollycoddled, cared ABOUT but not cared FOR, ‘normal’ but with my new and bizarre medical needs considered. I’m sure you, my clever readers, have worked out that the only way to get this type of support was to ask for it (eurgh, the horror of communication) but I’m afraid I didn’t figure this out until much later in my diagnostic journey. What I did realise though, was that the support that people in my life were offering fell roughly into four categories:

1. The Positive, perky Peters
2. The Smothering, soothing Susans
3. The Woeful, winging Wendys
4. The Fixable, fine Freds

Spoiler alert: None of the extremes featured above are a) helpful or b) entirely without exaggeration. They are, however, a snapshot of the sort of support you might be getting right now and why you feel so irritated with it you could just punch loved ones in the face.

The Positive, perky Peters:

I HATE positivity when I’m flaring. It’s like veal to a vegan. There is nothing worse when you’re having a bad day of being reminded how beautiful the day is and how smiling is the best medicine. Fuck the day and fuck smiling. Because at that moment I can’t smile. Pain is literally searing through my body and the most I’m managing is talking and breathing, so the notion of looking out of the window to appreciate the sound of beautiful birdsong is nonsensical and, to be honest, a little insulting. The insanely positive folk clearly have no idea how encumbered those of us with chronic illness are at that moment with pain/fatigue/depression/anxiety/every-single-body-part-deciding-to-rebel-at-the-same-bloody-moment. Morons.

HOWEVER, now that I’ve finished channelling my angry, flaring self, let me take a moment to explain why those positive Peters are useful even if sometimes they need toning down a bit. Positivity is needed during a life with chronic illness. The alternative is the woeful Wendys of the world and, as we shall see in a moment, they are no more help than a chocolate fireguard. The physical symptoms of an illness that ravages your body are one thing. They are real and no amount of ‘kumbaya-ing’ is going to change that. However, there is also the mental side of chronic illness which is silent killer. You think you’re fighting Batman and then Robin comes and kicks you in the head from behind. The depression, anxiety and low self-esteem that can accompany a bad hour/day/week/year are just as debilitating as the physical stuff. So sometimes a little bit of positivity is a good thing. It helps to bring reality into a dark world of pain. And the beauty of positive Peters is that they really DO want to help. They’re trying to remind you that the world isn’t the way that you’re seeing it right now, but, because they don’t understand what you’re going through, they resort to reminders of laughter being the best medicine and end up getting themselves punched in the face. So here are my suggestions of how to get the most out of those positive Peters in your life:

• Rather than threatening to stick a singing bird up their proverbial, explain to them that, right now, you don’t want to be positive. You’re struggling and you can’t cope with anything other than the fun tricks that your body is playing on you right now. However, ask them to continue to check in on you and not give up on you: you’ll pull yourself out of the hole at some point and then you’d be more than happy to have them over and listen to the melodious song of the Lesser Whitethroat Warbler together.

The Smothering, soothing Susans:

At the beginning, these folks were like a warm hug. The soothing Susans of my life wouldn’t let me do anything without murmurs of concern for my health, mental wellbeing and general Ok-ness. They would rush to every whim, worry and wobble that I had, and I was never alone whilst they were in my company. Nothing was too much trouble, and I really felt like someone was taking me under their wing so that I’d never have to struggle again. However, after a while, the ‘soothing’ bit of their namesake fell by the wayside and the ‘smothering’ bit took over with a vengeance. On days when I was feeling better, I wanted to go for a walk, or go to a party or even (heaven forbid) make my own cup of tea. I wanted to LIVE on the good days because I knew that the bad days were just around the corner and I wanted to make the most of feeling like a semi-functioning human being. The more adept I got at looking after myself and my conditions the more I wanted to manage MYSELF according to my limitations. I needed to try different activities, and, more than that, I needed to fail. How else was I supposed to know what I could and couldn’t do? But the harder I tried to push away from smothering Susans, the harder they held on.

However, a chance conversation with a particular smothering Susan in my life made me see myself as she did. What we forget is that the Susans in our lives have seen us at our worst. They’ve been to the appointments, the medication reviews and the worse recesses of hell with us. They’ve been the ones to sit at our bedside in some dingy hospital ward waiting nervously for us to wake up from our seventh operation. They’ve held our hands tightly as we undertook painful injections, suffered under horrendous side-effects of new medications and collapsed under the weight of the shit storm that is our illnesses. And they don’t forget those images of us bent over the toilet or screaming in agony. They can’t. It’s too painful. So when we try and move on like Bambi taking our first steps they want to be under us with a safety net. And that’s not a bad thing. It’s actually a sign of tremendous love and affection, even if sometimes we do want to scream “I CAN DO IT MYSELF!” So here’s how I deal with my favourite person in the world who happens to be a smothering Susan:

• I remind her that I’m safe, that I’m taking every precaution to keep myself healthy even if I’m planning a trip to climb Kilimanjaro. I remind her that I can look after myself and go through scenarios of what I would do should I become dangerously poorly. And when I fail, I show her that I can pick myself up, pop a pill, have a cry and try it all over again. I keep her in the loop with my health so that she doesn’t imagine the worst and try to ambush me with rolls of bubble wrap. Most importantly, I remind her that there is a time for cotton wool, when she can come into her own and when I truly need her. But that isn’t right now because I’m a functioning adult and quite capable of making my own cup of tea.

The Woeful, winging Wendys

It might not seem like these folks are capable of support, but they have their own unique way of being there when the shit has hit the medical fan. If you’re having a bad day, Woeful Wendys will give you justification. They’ll say things like “Oh my goodness, I’m so sorry you’re going through this AGAIN. If I had to deal with what you’ve had to deal with I think I’d kill myself.” Huh, you think at the beginning, this person really knows what I’m going through and understands the trauma of my life. And she hasn’t once told me to be positive. Thank goodness for Wendy! But before you know it, the sympathetic platitudes take a darker turn. “It must be so awful to be in your 30s and still not married because your illness has stripped everything away from you and left you in a state of perpetual misery. I’m so sad for you.” Cheers. All of a sudden, the thoughts you’ve had on your worst day begin to be voiced by an external figure and they’re no longer comforting. Even if you try to put a positive spin on their dingy outlook you won’t succeed. You might point out that you’re in a long-term relationship thank you very much and that you’re sure marriage is on the cards eventually. Forget it: you’re dealing with a melodramatic expert. “Oh I’m sure it’ll happen eventually, but do you ever worry that your partner regards you more as a patient than a girlfriend? I feel so sorry for both of you; I’m sure that this isn’t the life that either of you wanted.” Just pass me the razor now…

So how do Wendy’s help? What’s stopping you from blocking them on every channel and instantly emigrating to Azerbaijan? Well, as already discussed, the initial justification that they provide is quite nice. It’s good to have your struggles recognised and feel validated in the fact that today you’re doing Netflix and Ill. But they also have a subtler aspect of support, because they voice the worst possible outcomes in your life. Wendy’s present the scenarios that you never want to see materialised. They give you something to push against. If they were you, they’d want to drown their medical dramas in a bottle of Bourbon but they’re NOT you. You’re not going down that route because, damn it, you’re stronger than that. The fact that you’re not a raging alcoholic perpetually contemplating social isolation proves just how strong you are. You’re a medical Rockstar! How to deal with Wendy’s? It’s simple:

• Take their justification. Ignore their bollocks. Use their negativity to make you feel great about your life choices.

The Fixable, fine Freds

I’ve deliberately left these little bastards until last. They mean so well, they’re always on hand to offer support and solutions and they come across as so bloody sensible it’s infuriating. I know. I live with one. Freds are practical and so is their support. In pain? Take a pill. Tired? Go to bed. Worried about a new symptom? Go to the doctors. Simple! How wonderfully fucking magical to have someone supporting you who has all the answers to the problems of the universe. Freds could solve the Middle East crisis in half an hour over the telephone with a bottle of Budweiser without even breaking a sweat. And if you don’t take their support? They get pissed off, frustrated and cranky. “You’re tired! Go to bed! Leave the housework/feeding the kids/caring for the animals/personal hygiene/job/life in general. If you went to bed like I’d suggested you’d be absolutely fine!” No, I wouldn’t. Because I’m not just tired. I’m exhausted. I’m tired down to my very core because my body is fighting a battle that I can’t win. And going to bed is neither practical nor helpful. Pillock.

However, the underlying cause of Fred’s solution-seeking support is a feeling of being helpless. They’re powerless to do anything about the perpetual pain, the constant fatigue and the never-ending cycle of diagnoses. Coming up with simple solutions makes them feel like they have an answer and that they could be contributing to making you feel slightly more human. The reason for the frustration is that nothing works. Because the notion of chronic illness is just that: it’s chronic. It’s not going anywhere, and neither are its debilitating symptoms. And it’s a hard pill to swallow. Underneath the practicalities of ‘everything is fine and solvable’ is a lack of acceptance. But that’s not your issue, it’s theirs. You can’t force someone to accept that you’re not going to get ‘better’ but you can help them to feel more in control. How do you deal with ‘everything will be fine’ Freds?

• Point out times when you just need sympathy. You don’t need solutions to the problem of being tired, you just want them to give you a cuddle and tell you that they’re sorry you’re going through this. Tell them that it will really help you to have support in that moment, far more than the simple solution of just going to bed.
• Give them a role. When they’re barking solutions at you like a frantic dictator tell them what would make a difference to you in that moment. Yes, you’re in pain, and yes you could take a pill, but what would really help is if they cooked dinner tonight so that you could go and have a bath.
• Use their practicality. Some of their solutions are actually really helpful. You might be in pain because you forgot to take your pills this morning. Thanks Fred! Praise them when they help, ignore them when they don’t.

I hope you’ve found this little bit on support helpful. I know it’s a bit tongue-in-cheek but the overriding principle is that people aren’t robots. They can’t be there for you 100%, especially if you don’t tell them what you need. You are deserving of support, but you might have to be selective as to who is in your entourage of care. And remember, you have a CHOICE of who to take support from. Don’t take it if it’s not helpful, and lap it up if it is.