Still on that boat…

Strawberry blonde in a dizzy world!

Shall we have a recap?

June2

OK, this has been going on for so long even I’m confused about it all. Lets have a mini (well as mini as almost a decade can be!) recap of the last few years and also share what I’ve been going through over the past couple of months.

So this is how it all started:

I was a 30-year-old fit and healthy woman. I had a job I had worked very hard for and loved, a relationship and my plans for the future were exciting. Then 22nd of June 2010 I got sick. Yes, I remember that day as it was the day my life would change forever.

I had been on a sailing holiday in Turkey where I had what felt like flu at the end of the week, covered in insect bites from running around barefoot on the islands we’d stopped at. On the last day I just sat drinking coffee trying to ‘snap out of it’ as I was so tired, achy, foggy and had vertigo. Everyone else went shopping – now you know I must have felt ill to not go shopping!

On my return home my balance and fatigue got worse and worse and I felt like I was on a really rocky boat all the time – hence the name of this blog. It was initially thought to be viral, then months later migraine and years later Lyme disease. However, when I didn’t respond to traditional treatment (four weeks of antibiotics) I was then told I didn’t have Lyme as the antibiotics I’d been on would kill ANYTHING – well they had that so wrong! After seeing so many specialists I was eventually told I just needed Physiotherapy (I’d done that for years) and even I started to wonder if it was all in me head! I was distraught, spending my life in a dark room at my parents’ house. The loss was overwhelming – my independence, financial security, home, job and career, friends and my relationship (that lasted all of ten minutes!). I was torturing myself on Facebook watching my friends get promotions, married, children etc. I was happy for them, I’d never want my friends to be as unhappy as I was, but I felt my life was on pause and I was being left behind. I was lucky if I could get out and buy myself a pint of milk let alone a house!

Facebook can be fun, research suggests, except when it stirs up envy or depression.

They say you soon find out your friends are and that’s very true. When I first got ill I was flooded with cards, flowers and visits from people that wanted to help. As time went on this became less and less. I soon found I only had a handful of friends who I could truly depend on. People don’t realise that you actually need more support years down the line when you are struggling after so many knocks. I then started to not be invited to things, the reason being ‘we knew you were too ill so we didn’t want to upset you’. Not realising that being left out felt far worse. Friends would be cross if I cancelled last minute not understanding that I wanted to be there, the last place I wanted to be was in bed but the crushing fatigue was so bad the thought of just getting in the shower totally exhausted me.

My life is a total roller-coaster. I have tried so many treatments for Lyme and co-infections over the years. I have had periods where it felt like a treatment was working and I’d get so excited and could imagine having a future again only to be knocked on my ass again a few days or weeks later. I pick myself up over and over and over. I think I’ve been on every antibiotic known to man, several anti-epileptic drugs on doses high enough to knock out a rhino not to mention the Herx (die off) reactions and side effects of all the drugs.

So now? Well I’m trying the alternative route and I’m still having knocks. This isn’t a shock at all as this has been my life for almost a decade. I know that there is no quick fix. It feels like one step forward and two steps back a lot of the time. I have discovered that the most important things in life are your health, family and friends. I have learnt to hold on to the people that pick you up over and over again, always make sure you explain to people how you feel (they are not mind readers) and have patience with them as they will never truly ‘get it’ but just wanting to understand means the world. Oh, and people that bring you down have to be kicked to the curb!

 

I’m now onto new and exciting things being supported by an elite squad of straight talking, smart, practical, hilariously funny, positive and caring friends aka Mandrary (Mary and Andrew) – Lyme doesn’t stand a chance! Watch this space 🙂

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3 Comments to

“Shall we have a recap?”

  1. Avatar June 11th, 2019 at 1:04 am Marcus Says:

    Here’s hoping Sues to kicking lyme’s ass x


  2. Avatar June 11th, 2019 at 4:40 pm Susan Cartwright Says:

    Too right!


  3. Avatar June 24th, 2019 at 2:57 am Marcus Says:

    😉


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Who am I?

Was – independent, intelligent (with plenty of dizzy moments), successful, busy, funny (depending on how much Prosecco I and the people around me had!), quite stressed out but overall happy, without even realising how lucky I was.

Now  – ? just a mess really! I was diagnosed with Migraine Associated Vertigo (MAV) eight years ago when my life changed dramatically. It’s a variant of migraine that means I feel dizzy and tired nearly all of the time. If I try and do anything ‘normal’ this sparks of vertigo which gradually gets worse and worse until I pass out unless I lie down for hours, sometimes days. What this means is I spend 90% of my time in bed in a quiet dark room. Normal activities like shopping, walking, going anywhere bright or busy, the cinema even visiting friends who have patterned wallpaper or a gravel drive is a nightmare!

I’m continually trying new medications, all of them with quite nasty side effects (worsening of vertigo, weight loss, hair loss and sense of humour loss to name but a few) to try and find the magic one that will work for me. Fingers crossed the one I’m on now will work, time will tell.

A good friend set up this website so I could become a ginger whinger. No I’m kidding, so people can understand what I’m going through and maybe it would help me to have a bit of a rant. I have quite a dark sense of humour, I think that’s the only reason I haven’t gone completely bonkers! I clearly don’t have the most exciting of lives but I live in a small village with some entertaining characters and I’m always having blond moments (I blame the meds but I’ve always been a bit dappy!). Who knows I may even get better, and I can assure you life will be filled with amazing adventures then!

Scrap that! After zillions of Consultants all saying that they know what’s wrong with me and that they can get me better. Endless drugs and procedures I was finally Diagnosed with Chronic Lyme which was great – until I find out that nobody in the UK has a clue how to treat it. That complicates things some what 😉

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