My first post…

I’ve had this domain for almost two years now but never trusted myself enough to post it. I’m delighted to say that I was a very different person back then than I am now. I am becoming more my own person than ever before with each day.

Problem is … I haven’t worked since the end of June 2016 😐!

That is reason number one I’m reaching out to my virtual diary now for a helping hand both for my mental wellbeing and to try and get some perspective on my ‘new life’. This new life concept is something that will become very important to me in the coming months. Because you see, I’m not just ‘that girl engineer’ in the office that everyone commented on (nicely or not so) when she was fresh faced on her first day. I’m also ‘that girl that’s been on the sick for months’ and that ‘does she still work here girl?’ and that girl that is going through a diagnosis for Behçet’s Disease…

I first started at my company in September 2015 as a brand spanking new Graduate Engineer from University feeling a little smug about my decision to do a placement year (at least I’d have a bit of a head-start on the real world compared to some of the posh toff that hadn’t worked a day in their life right?). I love my job and I hit the ground running after being paired with an amazing mentor who simply turned out to be one of the best friends I could’ve wished for in this current year of turmoil. I love the people at my job, I have made some amazing friends there… some, I hope will be lifelong friends! But this first post isn’t really about my first few month’s experience, we’ll get to that later! This is about the beginning of the end of my ‘old life’…

June 27th 2016

The day I met a doctor that believed I was in pain. Today was the day that I had been having ‘toilet trouble’ to put it delicately for the last 6 weeks (among so many other symptoms I can’t be bothered listing them all now) and my mother had finally convinced me that I should maybe go and see a doctor with her every morale boosting ‘it might be cancer’ pep talk. Cheers mum!

It was a brief encounter that ended in the words ‘specialist’… and of course my brain instantly surged back to the pre-GP conversation with mum. Cheers again mum!

Before you decide not to read on… this is not another tragic Cancer Story. I promise! I am immensely relieved to write those words myself but trust me, I did the waiting on those results and I most definitely deserve to type e-v-e-r-y  s-i-n-g-l-e  l-e-t-t-e-r.

The following days…weeks…months…

The diagnosis of any chronic illness is an arduous process. Something any sufferer will most definitely know! I am in the 4th month of procedures, surgeries (planned and not so much!) and endless supplies of my blood being transported out of my veins for various testing, of which, I’ve quite frankly given up keeping track of in any other way than how many tears each blood test consumes.

I’ve had a colonoscopy (pleasant …not), an MRI, a CT scan, a lymph node biopsy, an emergency surgery on said lymph node biopsy wound (near death experiences are not cool… never), an endoscopy, an ophthalmology exam and I’m sure the list is not finished yet. That’s just about all my Gastroenterologist can offer me. He’s referring me to a Rheumatologist and Nutritionist next. Why not? I’m getting the hang of all these ‘ists’… He’s run out of ideas of what it could be other than Behçet’s Disease. That’s how they diagnose these things… they rule out all the other options first (because it’s so bloody unlikely…which at this point in time translates to so bloody UNLUCKY).

Today

Today. . . I’m still undiagnosed, which incidentally means I’m still waiting to try any medication (other than pain relief) to cope with my never ceasing symptoms. I’m hopeful that the not too distant future holds the key to my ‘new life’. By this I mean, I’m in a sort of grieving state for my old energy, lifestyle, hobbies. Well just leaving the house if I’m honest right now would do me a world of good! My life will never be the same. Maybe that’s a good thing.

It’s definitely turned out to be a good thing in my love life. This disease (whatever the experts decide to call it) has given me the chance to see people in my life for who they really are. Exceedingly helpful in determining who you want to & should consider spending the rest of your life with! I am grateful for this life change. But my life won’t be the same as the old one in many ‘not so great’ ways too. . .

Sport and exercise is a passion of mine. It’s what used to keep me going and it’s what got me out of bed in the morning somedays (yes I’m one of those annoying fitness freak types but don’t worry I won’t start #annoyingyou with #instagramgoals). I thrive off challenging myself physically and mentally. That’s one of the reasons I chose to do an engineering degree, it’s not one of those degrees you chose on a whim! But my physical challenges are pretty extreme. I love to run and swim and do anything that sounds totally ludicrous (so long as there’s a free t-shirt in it for me 😬 . I fear most of all that that’s the part of my identity that’s going to take the biggest hit.

After months of being cooped up in my more than caring and more than loving boyfriend’s flat, this lack of being able to do much is taking a pretty hefty toll on my mental wellbeing. Team that with a natural short fuse and a Dad that didn’t bother to get in touch when I nearly died… but feels it’s ok to leave me numerous voicemails telling me need to call him so that he can tell me how ill he might be, and there you have reason with unquestionable doubt for an outlet such as this.

What the future holds, well I can’t know that for now. But I’m going to make a conscious effort to start blogging about my ‘new life’ in health, relationships and, of course, Engineering from now on.

Cya ☕️💚

 

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