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A NEW PERSPECTIVE

The darkness's reign had come to an end, and I stepped back into the life I once took for granted. I felt the gravel crunching beneath my feet as I took my first few steps; something I'd never taken notice of before. I looked around and inhaled my surroundings. Not a quick glance, but an appreciation of all the things that existed around me. The sun felt warmer. The grass looked fuller.  The flowers seemed brighter. The trees looked taller. The air felt clearer.

I tentatively raised my hand to a neighbour nearby. Being inside had made me long for human interaction that I wouldn't usually participate in. The world existed outside of my bubble, and these past few months had taught me that. They smiled and waved back, and I felt tears spring to my eyes, that the world may now be kinder.

I continued walking. A figure approached, and I resisted the urge to dart across the street; something that had become second nature to me over the previous weeks. I felt the breeze as they brushed past me on the pavement. No longer two metres apart; no longer in danger.

Rushing and impatience came hand in hand on a normal day; but not today. I listened to the sounds of children playing freely in the park. The sound of laughter from a couple nearby. The sound of a dog trying to get his owner's attention. The sound of birds overhead.

I could sit and listen to these sounds for hours. Something on a normal day I'd be desperate to get away from. Desperate to get home. But I've realised that home isn't just a house; it's the place where you live. It's the local market. The people you see driving to work in the mornings. The park opposite your house. The fish and chip shop at the end of your road. Those places all make up your home.

I walked for what seemed like hours, and drew in my last breath of fresh air before clicking the door shut behind me. I sat and thought; and one thought in particular struck me. While we'd been in hiding and looking after ourselves, the world had been healing too.



FRUSTRATION.

I remember the day the new symptoms started. Intense stomach cramps. Bloating. Diarrhoea. Just before entering the theatre to see Six the Musical for the first time. Classic, right? This was back in February. I assumed I had a sickness bug, popped some pills, and carried on with my day.

The months went by. I became more and more ill. More weight loss. I was going to the toilet 10 times a day. But there's a stigma around toileting; especially if you're a woman. So I told no one, and told myself it would go by itself. I then saw my PoTS consultant, who told me I needed to be seen urgently.

SUFFERING IN SILENCE.

When you're diagnosed with a chronic illness, and given an extensive list of symptoms you may experience, it's a lot to digest. And any time you experience any of those symptoms (no matter the duration, or severity), you assume it's the condition. Feeling more fatigued than usual? PoTS. Feeling more nauseous than usual? HSD.

And the longer the symptoms last, the more accustomed to them you become. I've felt nauseous every day for the past few years, and genuinely can't remember what it feels like to not have that knot in my stomach. For the past six months or so, I've been going to the toilet between 5-10 times a day, and I assumed it was due to HSD; and although it meant I barely left the house due to tiredness, and embarrassment - I just got on with life.

Fast forward to July (the symptoms had worsened in February), and I had my annual consultation with my PoTs doctor in London. She asked me for the usual updates, and then asked if anything had changed. I'm not sure why I mentioned it, but I told her that I hadn't been able to get off the toilet, and how I'd had nausea every day for years.

She stared at me - absolutely baffled. "And you haven't told anyone this?", she asked, bemused. I shook my head. The sincerity that laced her voice when she said the next sentence sent me into an explosion of tears - "You don't have to be living with this. That isn't normal". I didn't? I didn't have to deal with this alone? I didn't have to suffer in silence? It had never occurred to me that I didn't always have to live in pain...

She handed me some tissues, and immediately told me that she had sent a letter to my GP, and I'd have all the necessary tests in due course. She seemed in genuine shock I had never mentioned this to her before, and seemed even more shocked that I'd never seen a gastro doctor before. I left that appointment a month and a half ago, feeling numb. Wondering why I had let this go on for over half a year; pretending that it was normal.

My GP thought it may be IBS and gave me some tablets to try - they did nothing. I had blood tests, did stool samples (funny story - involving a yoghurt pot, and a very tiny spatula!), and awaited the results anxiously. I had an appointment last week where she told me that I had two kinds of anemia - iron deficiency, and folate deficiency. I'd never had either of those before, and it certainly didn't match up to my symptoms. But hey - at least I found out why I was sleeping for 12 hours and still struggling to get out of bed!

I went for more blood tests, and they had noticed that my CRP levels were abnormal. A phone today confirmed that I wasn't dying (hurrah!), but they were keeping a close eye on me. On Monday, I have another appointment to discuss meeting a gastro doctor so they can carry out an endoscopy (camera down my throat, into my stomach), and take a biopsy. I'll be honest, I'm scared. Terrified, in fact.

The last month, I've been diagnosed with two new conditions (and am now on two lots of new medication), and am awaiting to find out the cause of my stomach symptoms. In the interim, I just stay at home - taking 4 Imodium and praying that will see me through to the following day.

I know the doctors are being careful with their words - they don't want to scare me in case it's nothing serious. For someone that had two heart operations before aged 20, and was diagnosed with two chronic health conditions between the ages of 19-24, and then a further two at aged 25; you'd think I'd be used to this. I'm not. It's a lot for one person to take on - especially whilst single-handedly running a business.

I feel like every time I dip my toe back into the blogging/vlogging world, life comes along and sweeps me away again. Then I return a few months later with an obligatory blog update. Hello, obligatory blog update!

While we're talking about suffering in silence - I referred myself a few weeks ago for counselling, and already have my phone assessment next Tuesday (yay!). If you're suffering, physically or mentally, reach out. You don't have to go to the doctors and take tablets (I hated anti-depressants); you can refer yourself online through your local wellbeing service, and they're absolutely brilliant.

They say life is a rollercoaster, and I definitely feel like I've been plummeting on the world's largest drop for the past few months. Fingers crossed that I get some (not so scary!) answers soon, and I can resume life as I know it. Even without my new symptoms, I will never have a "normal" life - but it's a life I love, all the same. And the only direction I want to be heading in now, is up.


UNLEASHED BY AMY MCCULLOCH | REVIEW

Unleashed
Rating: 5/5
Buy or Borrow: Buy
Source: Early copy courtesy of Hashtag Reads (Released 22nd August 2019)

The thrilling follow-up to JINXED, from the author of the magical POTION DIARIES adventures! 

When Lacey Chu wakes up in a hospital room with no recollection of how she got there, she knows something is up. But with her customizable smart pet, Jinx, missing in action and Moncha, the company behind the invention of the robot pet, up to something seriously sinister, she’s got a lot of figuring out to do. Lacey must use all her engineering skills if she has a chance of stopping Moncha from carrying out their plans. But can she take on the biggest tech company in North America armed with only a level 1 robot beetle...?