THE WAITING GAME: WHAT’S WRONG WITH ME?

Don’t worry this is not going to be a hugely wordy post. If you are reading this now, you are probably either one of those poor souls held hostage at the office, trying to distract themselves from the irritating humming of the noisy fan or the insufficient faulty air con by scanning your twitter feed for interesting links, or you’ll be one of the lucky ones -sunning ourself outside, on a roof, in a garden, at the pub, or in a park, and choosing selectively what blog posts are worth squinting to try and read on your darkened sweaty finger-printed phone screens.

I just wanted to pop in really just to say I am and will probably be a bit distant over the next few weeks. I have some sponsored work coming up which involves me going shopping (yay)…that’s not work I hear you cry….and a two day press trip with one of my fave beauty brands, but apart from that my work schedule is going to intentionally minimal. I know this probably seems like madness on my part, particularly when I keep telling you how desperately I need money, not only to keep ticking over, but to buy this ticket to LA for a wedding I hope to attend in August. But all is not well in my body right now, and there’s no point me pushing it harder than it can currently manage and putting myself in a position where I won’t be able to do any work, nor be able to get on a plane come August should I manage to raise the hefty funds.

Since a doctors appointment a couple weeks ago I have kind of felt like my life is on pause. I’m in a bit of limbo where I almost don’t want to plan anything till I have some concrete answers, and know exactly what’s going to happen to me (in terms of appointments/tests) over the next few months. I don’t want to go through the disappointment of cancelling flights, trips and festivals, nor spending time planning exciting work that I may not be able to deliver on.

This time last year I started getting new symptoms and issues (on top of the ones I’ve lived with for the past decade or so). But by this point I felt completely ‘done’ in terms of visiting GP’s and trying to get some sort of help and advice, let alone a sympathetic ear. I had gotten to the point where I couldn’t get through an appointment without my voice cracking or without completely crumbling into a teary mess. As a result I was unable to get my point across as assertively and calm as I’d have liked, and it always felt like a complete waste of time… in fact worse than tha,t I felt defeated and like I’d failed myself by not having the strength to keep it together. It’s amazing what years of exhaustion and frustration can do to your ability to fight your own battles….

So despite recurring uncomfortable and hugely inconvenient recurring kidney infections I kept avoiding seeing my GP. During one where I was heaped over, like a folded in half piece of A4 paper (mid origami) I got my mum to drop me at the walk-in centre where they told me my heart was going so fast and my temperature was so high they were worried I’d left it so long I might have Sepsis. Another time I relied on the Push Doctor App, hoping it’d be an easier option and I could avoided tearing up in front of my usual GP. I was able to get the antibiotics to temporarily sort me out, but my bank balance could have done without the fees that went with that particular route. When I was away in Devon and it returned with heft during the night, and I wasn’t due to be home for a couple of day, I spoke to a Devonshire based Doctor on the phone, making excuses so I didn’t have to see him in person and get properly checked out.

Anyway, a year on and there’s clearly some things going on that I simply can’t carry on with to have any sort of quality of life. Recurring symptoms that would be awful should they rear their heads while I’m in the US (if I go). I had some other things I wanted to put to my doctor too, a potential alternative angle to explore in terms of my CFS, something I hadn’t considered until my osteopath mentioned that she’d noticed something about my body that she’d seen in someone else who has been diagnosed with something else often confused with CFS.

So I finally mustered the strength to book the appointment. I was so anxious I was going over what I would say in my head in the same way I do before I have an interview to do at a film junket. I just wanted to make sure I did me and my body justice, and say everything I could to make sure I was listened to and taken seriously. I just wanted to come out of the appointment feeling some sort of progress was made.

I needn’t have worried about that because when I pointed out certain things going on in my body, whilst referring to my medical records, and past issues she could see on her computer screen in front of her, this time she was quick to agree that this was not only worth exploring, but looked quite likely. Not only that she immediately diagnosed me with something else too. Without any need for convincing she was booking me in for various test and referring me to specialists. FINALLY something was happening.

I know it doesn’t sound great to potentially face not one, but potentially a few new diagnosis’, but I can’t tell you how much a relief it felt to feel listened to and that someone takes your constant paint, discomfort and fatigue seriously. When I got home I told Dad about one of the things she said I probably had, and he said ‘Are you okay?’ with a concerned fatherly look on his face…of course my weak chin started to wobble and my eyes filled with tears I desperately tried to hold in the sockets. But I explained to him while it’s obviously not great news for me, I wasn’t crying because of that, it was just an emotional reaction to someone almost telling you all your internet moans and grumpiness are valid. You’re not making this up. It isn’t in your head etc.

I’m not going to go into my potential diagnosis’ yet (I don’t know if I ever will yet), because I still have some scans, assessments, test etc ahead of me and it could still go a lot of different ways. The possible options are that I have one form of something that they can’t do anything about and I’ll continue living as I am now, another is that its more severe and there will be an element of pain management, another is that there is possible surgeries they may want to do. They may find this isn’t the right route and pursue a different investigation. The scan may show something easy to fix, or it may show something far more concerning. Like I said before, it’s a bit all up in the air, limbo-land.

Man I wish it was Disney-land.

So it’s a waiting game for now. I have my first scan in a couple weeks, and hopefully I’ll know more then. But till then, due to worry-some sleepless nights, I’ll be spending a lot of my days napping on the sofa or in the garden, eating food that makes me happy, and just looking after myself as much as possible.

So please understand that my blog and channel may be a wee bit quiet but I’ll try to post regularly on Instagram. And a small favour… when my Sponsored work goes up over the next month, if you like it please do and give it as much love as you can, you’ll be helping me no end, and at least relieving some stress I can really do without.

I hope you’re all enjoying this sunshine and stock piling that glorious vitamin D best you can. And to my spoonies stuck in bed, I hope you are able to have that curtain open and feel the heat on your skin, even if it’s just courtesy of a shaft of light peaking through the gap or reflecting off a surface. Always thinking of you.

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