So this is the story all about how, my life got flipped, turned upside down…(some of you will now be finishing the Fresh Prince’s rap in your head; for others Google it!).
At the start of 2016, life was good. I had helped my oldest friend (in years not age!) celebrate her 40th birthday; been to Thailand for 2 weeks; run a charity 10k with very little training & did it in an alright time for me; had my best friend from uni and my goddaughter up for a great visit full of exploring, food & drink and I had even bought a new car. I was honestly feeling the best I had in years and was so excited to see what the rest of the year had install for me.
Then it happened. I got a sore throat. A sore throat!!! It was the most painful and draining sore throat I had ever had. I had no voice (much to the amusement of those around me including my cat!). Trying to book an appointment to see the doctor was excruciating but fortunately the receptionist was sympathetic and managed to get me booked in.
Along to the doctor I went. After what felt like a weird game of charades, she diagnosed me with – you’ve guessed it – a virus! So home I went, with a packet of throat lozenges and instructions to rest, keep warm and drink plenty of fluids.
Being a pretty active person, resting was not an easy instruction to take. I went back to work after a few days much to the amusement of my colleagues who compared me to the wonderful Barry White. I struggled the best I could, but had to admit defeat and try to rest some more.
2 weeks went by and I thought I was doing alright. I was more active and my voice was beginning to return. After a month I should have been feeling much better than I was. I still had a horrible scratching lump in my throat, little energy and had developed a deep voice making me sound more like and 85 year old man than a 36 year old woman.
Back to the doctor I went. This then started me on my journey for a diagnosis.
First stop was for a chest x-ray. Not too bad a test I thought. Nice and easy and I even got to wear a lovely gown for it.
Next up, the Ear Nose and Throat Consultant. Not so nice a test! The consultant was fine. Well, that was until he decided to have a good look in my throat and put a camera up my nose. Up my nose! Not going to lie, that freaked me out! I can’t even put a vapour inhaler up my nose when I have a cold, let a lone shove a camera up there that felt like it would be better filming a movie than my throat!
Luckily though there was a lovely nurse with us who held my hand beautifully, gave me a tissue and a wee hug afterwards. All was calm again and I stopped behaving like a 6 year old.
The consultant told me my throat was red raw but nothing sinister. He thought it could be my Thyroid, so arranged for blood to be taken and told me to see an Endocrinologist. I had no idea what one of those was so starting worrying about what was going to be put where next!
After a wee spat with my GP who tried to dismiss me and my symptoms as being depression and wanted to hand me anti-depressants without asking me any questions, I got an appointment with an Endocrinologist. Note – If I genuinely felt I had depression, I would have been fine with this diagnosis. I was upset though at just how quickly the GP reached to give me a prescription. I would’ve have thought he would want to find out more about why I could be depressed rather than just giving me pills. Anyway, that’s a whole other discussion.
Off to the Endocrinologist (hormone specialist) I went. The consultant I met was brilliant. She was so warm and personable and prepared to listen to me. We had a great chat and the only invasive test she did was take blood of which she took plenty. Enough to feed at least 10 vampires I’d say! I liked that she was honest with me. She told me she thought that there wouldn’t be anything in my blood other than potentially a vitamin D deficiency (I live in Scotland so this wasn’t a surprise!). But she told me she could see that I wasn’t well and from what I had told her, I wasn’t getting any better but worse. She then told me she thought I had ME (Myalgic Encephalomyelitis).
It wasn’t the first time I had heard of ME, but I really didn’t know what it was. I remembered from my childhood that it was nicknamed “yuppie flu”. When I got home from the appointment, I went to that trusty reference point of Wikipedia and found out a bit more. Could this be the answer to what has been stripping me of my life since that bloody sore throat? Turns out, it was the best answer I was going to get.
My GP’s confirmed I would classed as having ME. Naively I thought this was great. Finally I had a label. Never really been one for labels as I’m quite happy wearing the best the supermarkets have to offer in clothes, but this was a label I was keen to grab. Until I realised just how poorly understood an illness it is and how little support is available.
Now I was on a different path. A life with ME. That’s what I would say out loud to people, but it wasn’t something I accepted myself. I’m one of those over achievers who require perfection and won’t sit still for a second so for me, being ill just wasn’t convenient.
I went to a course of cognitive behavioural therapy (CBT) like a lot of people with ME. It had the aim of getting me to slow down and accept what was going on. It helped me realise more about myself, how I see things and how I put pressure on which in turn made me realise I needed to change. I needed to change as my body at the ripe old age of 37 by now wasn’t able to do what I wanted it to anymore. It didn’t ease the ME symptoms, but the head was sorted a bit more.
I was still pushing it though. At work, I was extremely busy working on a multi-million pound project on top of launching a brand new women’s network and doing the day job. I was struggling. Socialising was at a bare minimum. My bed had become my best friend. I was sleeping more than my cat now! I was starting the lose sight of the light I used to reach for at the end of that tunnel.
In 2018 things changed. I moved house. Began opening up a bit more to people but mainly to myself. In the summer, at the end of the project I was working on, I started to ease off a bit. This triggered the biggest crash I’d ever had since taking ill. I was in such a state at the doctors that they signed me off work. In total, I was signed of for 4 months. This was the best thing that could’ve happened to me for my health.
Not being the type to want to sit and fester, I used the time whilst I was off to try and figure things out better so that when I went back to work, I would manage better than I did before.
I set myself little projects. I sorted all my Christmas presents out by the end of October (making friends with the postie in the mean time as I bought everything online); I worked out how to cope with my chores; I looked at how I could sort my diet out and pottered with other bits and pieces. I wasn’t over doing it though. I spent more hours watching the Real Housewives franchise, Dallas Cowboys Cheerleaders: Making the team and binging on Netflix than I did doing anything else – well apart from sleeping that is! It was good for me to do this. My brain was actually feeling like it was resting and so was my body. I wasn’t feeling a lot better, but I was feeling different – in a good way.
Then I realised something. I realised I was doing something that really wasn’t good for me and I had to sort it out. I was holding on to my old life. My life before I had ME. The life where I used to run and bake and socialise and work and go at 100mph most of the time. I was still telling myself that I should be able to do this, I should be able to do that. This really wasn’t healthy and wasn’t letting me move on.
I came up with a plan. I decided to let it go just like Elsa from Frozen tells us to. I came up with the concept of putting together a memory box. I bought a nice box and filled it with things from my pre-ME life. I’m not going to let on what is in it as its really personal to me. Suffice to say, there’s a lot of momentos in there. I then wrote a letter and addressed it to my pre-ME me. This was really worth while and was far better than any mind exercises or mindfulness activities I’ve been told to do (these do have a place though so don’t rule them out).
After writing the letter, putting it in the box and tucking it away in the loft, I felt lighter (I wish this was in a weight sense as I still have a lot to lose after piling it on by not eating right!). I felt like something had lifted and that I could now carry on and have a life that just happens to include ME.
I’m now looking in to new hobbies, new ways to socialise, new interests (ooh – such as a blog) and new ways to work so I won’t end up back where I was.
ME is an extremely frustrating, life limiting, debilitating illness. I know that there are people out there with the illness who have a far harder time than I do. For me, I now see my future in a more positive light than I did. For me, there’s still more fun to be had, more adventures to go on, more challenges to face. I’m now just having to bring ME along for the ride.
Little Miss ME blog 