Remaining Positive in the Face of [Chronic] Illness

Once the battle of being diagnosed with an illness, be it chronic or not, has passed – with elation, fear, and exhaustion – it is not long before the next battle comes.

For me this was “finding my feet”. I spent six weeks or so in hospital over the space of four months, as we sorted out my medications and relieving my symptoms. Once I was on an upward path, everyone began to tell me this little nugget of wisdom:

“You've got to find the positive strength to get through this”

Hear it a few times, you take it on board and try your best to be positive. All of the time. But you forget you are fighting your own body, draining yourself of important and fundamental energy that healthy people just don't need to do or even contemplate doing. And on top of that, you feel somewhat hard pressed to be positive. Even when things go wrong. When your meds start to make you feel worse, you try and ride it out and hope it gets better; you don't want anyone to think you're not being positive about this terrible illness you have.

I tried about five medications in those early days without success. In this period, I hid away from people, quite easy when you're stuck in hospital. On those multiple admissions, my doctors tried hard to figure out what was now causing me a problem, a pain, a side effect; just why I wasn't getting any better. Then I received funding for a biological drug called Humira and it seemed to change everything. Once I could do my own injections at home, I had my disease staged with a MRI scan and I went back to work. This is when the big ‘push’ of practically everyone I saw telling me “how brave I was” and how it was “important I just tried to be happy and remain positive” throughout all my “bad spells”.

I didn't have bad spells.
I didn’t feel particularly brave.
I wasn't happy AT ALL.

This was the start of 2012. I was trying to find out who I was in a time where everyone wanted me to be happy that I was alive and well.
My bad spells were masked by my medication. It helped me a great deal but it didn't fix me. It certainly would never cure me and I still felt awful a great deal of the time.
My bravery? I was utterly heartbroken as I mourned my old, wonderful, normal life that was now just an endless barrage of tests, managing my diet and tracking symptoms. Being in hospital for so long, being so unwell, made me paranoid about when I actually did feel well – Me? Well? Something must be wrong! Ensue panic!

I just wasn't happy at all. I struggled to find my own new identity in being sick. I couldn't deny what I had or the simple fact that I had it, so I sat and thought long and hard about what I wanted to do. What I wanted to be, who I wanted to be. I read books, articles, spoke to other patients, confessed a lot to my counsellor and slowly I came around. But I struggled a great deal – and to a certain extent, still do – with being told to “be happy”. I don't think it's necessarily that simple, nor is it that easy to do. And why can't you have some time to be angry about things, about this type of thing?

It is not easy to be happy all the time. It is incredibly hard and draining to be positive all the time. I appreciate good advice but not when it is being constantly rammed down our throats; from doctors, medical staff, loved ones, it’s all said with that compassion that leaves you feeling grateful, although through gritted teeth. I don't feel as if I can be unhappy about my health. Especially now in my current situation; going through two major surgeries in four months, coming out with an ileostomy and a forever changed digestive system. Let alone how my scars and my actual ostomy makes me feel and look. I can't always be smiling about it. I need to be angry, some times.

So, remaining positive; harder than it seems. More complex than first meets the eye. Not always for the best.
Please, let us be negative and grieve for a while.
Chronically ill people are the strongest and most resilient people I know. I'm sure that's not just down to being positive, they get angry too.
Let us. We always come back to being happy and finding the funny side. Especially when it comes to bowels!

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Hitting the Wall (of Denial and Regret)

I think like most people, I am guilty of living in some denial and regret in certain aspects of my life.

When it comes to a chronic illness, it's just that CHRONIC. It doesn't go away, it can't be cured only treated and those treatments change and sometimes fail. It takes time to become comfortable with what you have, what is wrong with you and how you go about living with it.

I've always embraced my illness. I figured the sooner I accept it, the better I will feel right? I was half right. Whilst I did accept my illness and how it was going to always be in my life, I didn't always like the fact that it was always going to be in my life.  It's difficult to come to terms with that; the long term, chronic part of IBD. Not that any physical aspect of my illness is particular pleasant but it's the people I've met; the resilience, bravery and positive humour they show that keeps me going; it's what I strive to emulate.

So you get use to denying how you feel. You tell your doctors you're happy to go ahead with new treatments when previous ones fail: because your body is immunosuppressed or it's just plain useless or has it in for you. You don't tell them that you're angry that this condition picked you – because it's not genetic, I didn't give myself this illness, ITS NOT MY FREAKING FAULT! – or that you're tired of them trying new treatment after new treatment. You hope and pray every time you do start a new treatment or drug that this is the one that works. That it is the one that gives you some relief from the pain and / or symptoms you're experiencing. You hope you don't live to regret your decision to take harsher and more potent medications.

I don't support this living in denial or the regret of what could have been, I try to live in the moment and remain positive. I did this more than ever during my most recent hospital admission where they ended up taking my colon and giving me a ileostomy. But even with that, I have to talk myself into believe I made the right choices and I am happy with how my life is being lived. For the most part, I convince myself of this. I accept my reality and move on, do all those things a ‘a normal and healthy’ person can do.  But even I have my limits. And my triggers.

One is my actual supply of ostomy appliances. Their smell fresh from the box reminds me of all that I have lost and what I need to do for the rest of my life – change my appliance every other day and empty it 5-6 times a day. It doesn't hold me back but it makes me stop and think, I remember living with a colon for so long it's still very odd to not have it. And once my body is healed from this surgery, will my mind be healed? I doubt it. It is so very strong my doubt; I deny myself the feeling that this is not okay and that I'm only 28 for Christ sake! This is new and scary and I don't know how long that feeling will last. So I push myself to be okay with it all, not deal with the fact that I am scared because I've faked being okay with this to every one: I don't want to let them down, let their opinion of me change, of not being so brave and courageous. I don't want to be a failure to them.

 I will occasionally have moments where it is too much. And learning how to deal with them is an uphill struggle, a steep learning curve. But that is okay. I need to hear it's okay.

But.. I wouldn't want to live without my denial or regret. I think those two emotions keep me fresh. Let me explain; if I didn't feel a small twinge of regret and what if and wondering why I was still in agony, I  would never have sought medical attention in August and my diseased colon would have killed me. There is no one set way to solve the problems that arise with IBD and every patient is different, even though we do follow certain patterns. If I didn't suffer with some sort of denial; I wouldn't be human. I would be a robot.

Sometimes you just need to be reassured that feeling those ‘negative’ emotions is okay. It's a part of life, a part of being a human and it's part of this recovery. It keeps you soft in world where it is so easy to be hard and cold.

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Guest Post: The Rag Doll Disease by Hayley Steed

It was in my second year of university I started noticing my body struggling. The first thing was that I couldn’t use a straw, my mouth just wouldn’t close around it but I didn’t think it was a big deal. Then it was paralysis of my face – I’d be doing my makeup and I just couldn’t move my forehead or make my lips meet. It got worse when my speech started to slur and I began to choke on my food. I went to my university doctor about 5 times in 3 months, asking for help to be told it was stress, anxiety, migranes etc. It wasn’t until I went home to my local surgery that someone realised something was wrong. I was referred to a neurologist but the waiting list was 2 months – in that time I dropped to 6 stone from not being able to eat and I have vivid memories of having to leave restaurants with my boyfriend from everyone staring at me whilst I choked, to physically putting my fingers down my throat and picking out food I was choking on all whilst holding my breath.

My neurologist, Dr A as we like to call him, sent me for MRIs and CAT scans immediately before I was diagnosed with Myasthenia Gravis, nicknamed the Rag Doll disease. It’s an auto immune illness meaning severe muscle weakness. Essentially my body’s immune system attacks itself and sends antibodies to kill the messages from my brain to my muscles, so they just don’t receive the message and don’t move. That’s anything from my eyes drooping, to not being able to smile, to my swallowing muscles failing, to my lungs struggling. Dr A wanted to admit me but only let me go home as my Mum is a registered nurse. He told me to cancel mine and my boyfriend’s first holiday together which was just 3 weeks later, and cancel the trip to America my family had planned for several months later in the year, which was when I knew how serious it was. One of the hardest parts still was sitting outside that hospital and ringing my boyfriend to tell him I was ill.

I started on medication and in December 2013 at the age of 20 I had a transsternal thymectomy (they cut open my chest and took out my thymus gland which had a tumour.) I was his youngest ever patient and they told me it had 1/3 chance of making me slightly better, but not curing, 1/3 chance I’d be exactly the same and 1/3 chance it’d make me worse. It’s such a rare disease, they know so little about it. They don’t know what causes it, or how to really fix it. Either way I’d have the scar which runs the length of my breastbone and three ‘bullet’ hole scars underneath from where they fed drains into my lungs, which they took out when I was awake two days later. The only thing I’m going to tell you about that operation is that because my illness is all about muscle weakness, they couldn’t let me have any painkillers before I woke up. Usually they’ve already hooked you up to a morphine drip so you wake up with painkillers inside you – I didn’t have that in case it meant I didn’t wake up. I woke up feeling the full effects of the operation, screaming.

A couple of months before my 21st birthday they found a blood clot in my leg so I was on more treatment for that, meaning I was not allowed to drink for my 21st. I nearly had to cancel my birthday trip to Rome but I pretty much told them that wasn’t happening unless I could die doing so. I went. I’ve had two relapses, one when my eye closed for about 2 months, I’ve no idea why. I had to cancel all my work experience and just stay at home for that time. The other was last summer. I had a week where I kept waking up in the night feeling very phlegmy, to the point I couldn’t lay on my back because I felt like I couldn’t breathe. Then one morning I woke up and I couldn’t breathe standing up. I went to A&E, was met by ICU and strapped up to IVIG, a drug which essentially restarts your immune system. I had that over a course of 5 days which left me exhausted but it worked. That’s the only time I’ve come close to dying from it. (I had to cancel another holiday me and my boyfriend were supposed to be going on).

Something that came alongside the physical illness, was the anxiety. It’s better now, but for the first couple of years of diagnosis, I just wouldn’t go out. I was terrified it would make me more ill, or if I went for a meal, I would choke and either everyone would stare or I’d die. I didn’t like people seeing me when they knew I was ill because I thought they’d be looking for signs of it and I didn’t want to see anyone who didn’t know I was ill and have to explain why I couldn’t speak properly all of a sudden. Now, even though most people know I’m ill and I rarely choke at meals, I still get panicky when I’m going to events or meeting an author that my speech or face will just drop and they’ll wonder why. It’s a vicious cycle because the anxiety and stress makes my symptoms worse. Sometimes I try to joke about it so if I’m with my friends for a special occasion I always take my pills and say ‘if we’re taking photos, let’s do it now whilst my face works’. My worst bout was after my second relapse – I’d wake up every morning in a hot sweat, panicking in fear of waking up and not being able to breathe again like before.

My friends now tell me how snappy I was after being diagnosed and I was – I was angry. I was angry at the hand I’d been dealt, angry that I wasn’t like them anymore, that I couldn’t be ‘normal’ and angry that none of them seemed to think it was a big deal. An illness like mine, one which can’t be cured, brings a lot of frustration with it. It dictates every moment of my life – I decided I still wanted to work, which I do, and to live my life, which I do. But if I have an event in the evening after work, it will tire me out for the next few days. I can’t go to a different bookish event each night like I wish I could, I have to carefully plan. I can’t go to bed late, because if I’m tired, my muscles will be so much weaker. Numerous times I’ll be mid-way up a flight of stairs and my legs will give way – I just have to sit and let everyone walk by me until I’ve rested enough to go again. Most of the day I can’t smile, because my cheeks aren’t strong enough. I frequently look liked I’m mid-stroke and my medication heavily increases my risk of cancer. Rest is the biggest word in my life and it’s so frustrating, as a 20-23 year old to be told you can’t when you have always been able to and that’s always what I’ve struggled with most. If someone who knew me in my pre-illness years saw me now they’d be shocked. I used to love going out, I loved drinking and clubbing, I was loud and brash. I’m still quite brash, but if I go out, which is rare, I don’t drink because it’s a depressant and makes my muscles weaker. Even without alcohol, I can’t do stuff every day like ‘normal’ people can, I always have to consider what will tire me out, what will be too much first. It’s constant.

My scar then and now

Most importantly I think we need to stop putting illnesses on a scale. I had so many comments after being diagnosed like ‘at least it isn’t cancer’ or ‘at least it isn’t a brain tumour’ and yes, I’m so thankful I haven’t had to go through either, but does that make mine any less valid or difficult to live with? My own friends thought my illness wasn’t a big deal, until they nearly saw me die from it. But people can die from depression, from cancer, from Crohn’s, from epilepsy, from anxiety. So many people have a story like mine, of struggle and pain and difficulty. Mental and physical health don’t need to be measured or met with judgment of how bad they are.

This has probably been a quite depressive post so I’m going to list some good bits:
• It’s been nearly 3 years since I was diagnosed and I’ve gone from 40 pills a day to 8. I’m stable and have no signs of relapsing anytime soon *fingers crossed*.
• This was all going on in my 2nd and 3rd year of uni. I’d get extra time to finish my work after my operation and blood clot in 3rd year, and I got a First. I’m damn proud of that.
• I’ve been on several fantastic holidays which I haven’t had to cancel including driving the coast of California with my family and Rome for my 21st birthday.
• My incredible boyfriend has been with me since day 1 and has stayed throughout the most difficult times, even when I was freaking out about my ‘ugly’ scar.
• I’ve never been so close to my family – I had to call my Mum at 3am from my bed after coming home from the op to come and spoon feed me morphine because it hurt too much to move. After an experience like ours, you value everything so much more and we’re pretty much best friends. • I’m really happy – I got a job in publishing and my illness is settled enough to live with. I’ve got used to my life being toned down.
• Since my op I have skydived and abseiled to raise money for our charity – Myaware. This year I’m taking part in an attempt to beat a world record of skydivers and my Mum is jumping with me. If you want to sponsor me you can find my page at www.justgiving.com/HayleySteed3

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