SUNDAY #90 – Only

I said I wouldn’t talk about Glandular Fever any more (#getoveritKate), but when I returned to the office in July after a month off sick, one of my senior managers asked how my recovery was going. Physically, I’d completely recovered, but when he asked “How about mentally?” I decided to tell the truth and say “Not all that great”.

Post-fever, I naively expected to pick up where I’d left off and go back to my old self. Instead, I spent weeks feeling like I was sat behind glass, separate from situations I would normally be engaged in. If I managed to experience a drop of emotion, it was overwhelming, and it often brought on a panic so severe that I’d feel paralysed by it. Weirdly, I hid these panics exceptionally well, so I imagine anyone who’s reading this who knows me in person will be surprised to hear I almost wept at my desk (and on the tube) on a daily basis.

I didn’t tell many people I felt this way. My sisters knew, I told a few close friends, and I wrote pages of notes in my diary about it when I couldn’t sleep at night (despite being fucking exhausted). I read the entries back recently, and it made me sad that I felt such a strong and strange need to keep my feelings a secret. That’s madder than anything I was feeling at the time.

What gave eventually gave me comfort and some perspective was that my senior had been through the exact same thing when he contracted Glandular Fever years ago. He told me that for months after his initial diagnosis and recovery, he would burst in to tears for no reason, and couldn’t regulate his emotions. Even on the worst days when I’d come back to the flat after work, wrecked internally by nerves and paranoia; the comfort in knowing I hadn’t “gone wrong” (as I put it to my flatmate Kelly) and that this state was only temporary, was immense. That’s why I’ve written about it here. It’s important to tell people if you’re struggling.

Do you know what else helps? Music. Endless amounts of it. Even when you don’t want to dance to it, cry to it, or feel to it – music is always there to distract and eventually, to motivate you back in to health. We all need something to lean on when we feel weak; and Nine Inch Nails’ desolate, raging, brutally honest lyrics have been medicine to my ears on the most toxic days. I’m also grateful to my older brother for not being mad at me for ignoring his suggestion to listen to them five years ago.

Whether you’re feeling low due to poor physical health, or just generally out of sorts; put on a record, whack your little diary out, and write until you don’t make sense anymore. Read it back when you’re feeling better, and cut yourself some slack. Life can punch you right in the tits sometimes, but if you tell someone how you feel (or write a blog about it), you’ll be surprised at just how much relief it can bring.

I can’t wait to show you what the spoils of shaking off Glandular Fever look like for me. Keep your eyes peeled for more news, and listen to this vital tune in the meantime.

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The Real Reason I don’t go to Music Festivals…

Music Festivals are the highlight of the year for many people; Glastonbury, Reading, and Bestival, are some of the many events dedicated to good music and a good time. My friends attend at least one of these festivals every year, and always extend the invitation to me.

They promise me a week in an invented wilderness, listening to my favourite bands, dancing like a madman in a field; high on life/summer/alcohol. For someone like me, who loves being at the front for live gigs, is very fond of the vodka-sauce, and a tour-de-force on the dance floor; it sounds like a dream. People look genuinely confused when I tell them I ‘don’t really do Festivals’, then don’t follow it up with an explanation. Well, I am about to explain what turns my festival dream in to a nightmare.

I was diagnosed with Ulcerative Colitis (UC) when I was twelve years old. I don’t talk about it very often, because a) I don’t want to, b) I still don’t know how to effectively explain the condition to people, and c) I feel that patriarchal society doesn’t like it when I, a young woman, have to admit to being human and having bowel movements.

Ulcerative Colitis is a form of Irritable Bowel Disease (IBD). It is a chronic illness, where the colon and rectum become inflamed. There is no known cause, and no known cure for the condition. It can range from mild to severe. Fortunately, I am a mild case, but I rely on daily medication to keep my symptoms at a manageable level. Symptoms can vary; but when I’m experiencing a relapse, it’s an absolute bastard (accurate use of medical terminology there). If you’re squeamish, I suggest you don’t look at the list of symptoms below:

  • Severe diarrhoea (up to twenty times in the space of 2 hours – sometimes lasts all day)
  • Blood in your faeces (bit of a shocker for the retinas, I must admit)
  • Intense pain in the lower abdomen, before, during and after the bouts of diarrhoea
  • Having a persistently ‘uncertain’ feeling in your gut; so you can’t tell if you need the toilet or not
  • Feeling exhausted and weak
  • Severe loss of appetite (which breaks my heart; dinner’s my favourite thing)

I find it really hard to explain the symptoms effectively; so I’ll also use an analogy I think everyone can relate to. Have you ever experienced ‘the shits’ on a holiday abroad? If so, can you remember how you thought your life was going to fall out of your arsehole, within a matter of moments; and you had no control whatsoever. I imagine your symptoms went away after a week or so; you laughed it off, and went about your normal life again. Well, imagine living with those symptoms on a daily basis, but with ten times the urgency, ten times the pain, and ten times the lack of control; Welcome to Ulcerative Colitis!

When I first became ill with UC at twelve years old; I ended up weighing just 5 stone. I’m not exaggerating when I say my parents thought I was dying; I was refusing to eat because I felt so unwell, and they had to have several strong words with my local GP before I even got a hospital appointment. I missed almost a year of school because I was physically unable to leave the house. It was a rough time, but I don’t really remember too much of it because I was young, and the doctors spoke to my parents about the serious stuff. I just remember gorging on doughnuts when I eventually felt better.

Through medication (a combination of Azathioprine, Mezavant, Hydrocortisone foam and Salofalk foam), sheer determination, and the support of my family and The Royal London Hospital; I have managed to live a pretty brilliant life without Ulcerative Colitis getting in the way. I can do pretty much everything everyone else does, mainly because I’ve got some sweet drugs (all legal) that keep me on track. However, even when things are going well with my condition; I still hesitate about staying over at friends houses, going away on holiday, and going to Music Festivals.

Sure, I might hit lucky and be symptom free on the weekend of Reading/Glastonbury; but I won’t know that until the time has arrived, so spending hundreds of pounds on a ticket months in advance, seems like a huge risk. When I get there, there’s also the camping situation, and of course; the shared toilet facilities. My friends have explained that usually, there won’t be queues for the toilets; but what if there’s a queue on the day where all hell is breaking loose in my bowel; shall I just do as the bears do, and shit in the woods? I don’t know if I’m cut out for that (no judgement if you’ve ever done that btw; when you gotta go, you gotta go!) Also, the pain is pretty unbearable at times, so I really don’t want to be surrounded by hundreds of people when my insides feel like they’re full of lava. If I’m feeling ill; I need privacy, and I’m unlikely to get that if I suddenly feel unwell in the middle of a mosh pit.

It’s not just the physical symptoms though; as with all long-term health conditions; the emotional symptoms are also difficult to deal with. If I suffer a relapse, I am usually prescribed a two month course of steroids. Steroids are a wonder drug in the sense that they solve almost all of my UC symptoms. Emotionally, however, steroids tend to do a number on me. I have never been officially diagnosed with depression; but when I am on steroids, I enter in to a depressive state that is at times, very hard to deal with. I also find my hands shake for no reason; and I feel anxious about the most insignificant of things. I become conscious of a ‘heaviness’ in my head, which never goes away, and I feel compelled to sleep for eternity. On a vain/superficial level, my face puffs up; which, on top of everything else, makes me self conscious and insecure.

Ultimately, steroids are both a friend and a foe to me. Fortunately, I’ve got a brilliant family who know how to help me out when I feel strung out, and once I’ve finished the prescribed course; most of these steroid-induced symptoms go away. If you have been officially diagnosed with depression, please don’t take offense at my self-diagnosis. I believe that my depressive symptoms are a by-product of my physical illness, which makes it easier to deal with. People who suffer with severe depression may not have the benefits of this perspective; and I empathise intensely with anyone who has been through/is going through periods of depression.

So, with regards to going to Music Festivals; whether I’m ill, or symptom-free, I feel the true experience would be marred for me if I was on steroids. I know people take all kinds of drugs at Festivals, and it’s not a big deal; but I can’t function properly on something that’s prescribed to me by a GP. Plus, there’s the possibility of a struggle with security when I turn up to the gates with a bag full of pills, and foams (I am a legal drugs FIEND).

This has been a hefty piece of writing, so I’ll bring it to a close. Ulcerative Colitis is the shitty reason (literally) why I don’t go to Festivals. It’s nothing to do with being a camping snob, or being a boring bastard; it’s all to do with not being able to predict whether or not I will experience a relapse or symptoms on the weekend of the festival. It’s too big a risk; financially and physically. Some of you may be wondering: ‘Why is she sharing this on the internet? It’s a bit personal/gross/unnecessary.’ I have no real reason; I just wanted to talk about it, on the off-chance that it might help someone who also has Ulcerative Colitis. The internet’s a big place; there’s always someone to reach out to!

DISCLAIMER: I want to differentiate between Irritable Bowel Disease (IBD) and Irritable Bowel Syndrome (IBS). Both are complicated conditions; but IBD is generally more severe and much more difficult to control than IBS, which can often be controlled by changes in lifestyle or diet. Changes like this can improve symptoms for sufferers of IBD, but they do not eradicate all symptoms, or cure the disease; the disease is permanent (for now.)

You can donate to IBD research charities here, or just do some more investigating here. Thanks for reading.