Where it all began

I thought the best place to start was right at the beginning. Well not right from the moment I was born; that might be slightly too much. I think this is actually the first time I’ve properly sat down and written about this whole shebang. Let’s crack on!

Christmas 2010

As I’ve always been a lover of the festive period, I had had a wonderful Christmas day. With just me and my mum at home, we often opted for a far more sedate and relaxed celebration, filled with presents, food and generally making the day our own. The evening drew in and I remember wanting to watch a film that was on TV. I want to say it was Ratatouille but don’t quote me on that! As I settled down to get lost in the animated frivolity, a wave of utter fatigue and exhaustion came over me. I immediately had to hunker down on the sofa and hoped it would pass. I’d been on a Christmas high, so naturally a bit of a come down was expected when the adrenaline wore off, right? Sadly I can’t seem to remember anything else about that night, most likely because it was uneventful.

Not that long after, we decided to have a wander around our local M&S, hoping for some post-Christmas bargains. After only walking for maybe 15, 20 minutes tops, I could feel the same wave coming over me once more. Now I felt like something really was amiss. My mum could see it just by looking at me; the colour and energy had just been totally zapped from my face. We headed back to the car, disappointed and concerned. Petrol was needed, so a brief detour was made. I distinctly recall sitting in the passenger seat, waiting for my mum, and feeling so detached from what was going on around me. It was like I wasn’t there. I couldn’t focus. I couldn’t comprehend. I was just so exhausted.

January 2011

Fast forward to the New Year and I’m sat in the doctors waiting room. I’d had blood tests, which found nothing abnormal. But I knew something was going on and I wanted to know what. Doctor called me in. Me and my mum followed. A lot of stuff from this time is a total blur, so I’ll just have to summarise. After a lot of back and forth regarding my symptoms, my GP was finally ready to make a diagnosis. She told me I had something called M.E (Myalgic Encephalomyelitis), although she used the frowned upon Chronic Fatigue label. Get ready for some scientific stuff. It’s also very informative so don’t be put off.

M.E is a chronic (in other words, long-term) neurological condition affecting an estimated 250,000 in the UK alone and around 17 million across the world. Whilst people with M.E may experience different symptoms to other sufferers, the most common and linking factor is the debilitating fatigue; the total and complete exhaustion, even though you’ve not been remotely active. There is also the post-exertional malaise. This is the body’s inability to recover after using even tiny amounts of energy. Take having a shower for example. For anyone without health problems, this is just something you do. It’s a staple part of the day that you don’t even think about doing. You’re just able to do it. But for those with M.E, a shower can seem like hiking up Everest or flying to the moon. Initially you would need the energy to actually get out of bed or off the sofa to then travel to the bathroom. For some, even this is impossible. For those who can just about manage it, they then have to compete with getting in the shower, washing etc. Many need help from another person. Many also need aids such as shower stools or handrails. Afterwards, the fatigue, and pain for a lot of people, will kick in tenfold. They will feel like they have just climbed that mountain, ran a marathon and got the flu all at once. And that is precisely what post-extertional malaise is. The reaction of the body does not match the amount of energy expended. You can get up, brush your teeth and feel as if you’ve been doing a strenuous workout. You can make yourself a drink and feel as if you’ve been lifting a lorry. And for some, you can even just talk to someone for a few minutes and feel as if you’ve done the workout, lifted that lorry, climbed that mountain and flown to the moon. As someone who was never this severe but has had numerous friends who are, I really hope my description has done you all justice. I’ve tried to imagine my worst of the worst days and increase that a million times; then I’d be some of the way to understanding how some of you out there feel.

In essence, M.E is basically shit. It takes lives away from people, young and old. It can leave you housebound, wheelchair bound, bedbound, tube-fed, paralysed. And yes; M.E can cause complications which can be fatal. It’s tough to hear but it’s the truth. Some of you may have seen the recent articles about an incredible young woman called Merryn Crofts. We were online friends and penpals for about 4 years before M.E took her life. It’s still quite raw for many of us, so I shan’t go into anymore detail here. For anyone who wishes to read more, a number of articles are available online. I urge you to try and read at least one of them. Merryn wanted to raise awareness, even when she knew her condition was terminal, her tenacious and avid desire to help others and aid research was always present.

As for me personally, I have experienced a vast array of symptoms over the years. Luckily I have not struggled with the pain aspect, which whilst I am incredibly grateful for, I know wholeheartedly how utterly dreadful it is for some of my friends. Okay so I’ve struggled with terrible migraines and headaches, if that comes under the pain symptom category. They are bloody horrendous, I’ll tell you that now. They’ve probably been one of the most debilitating symptoms for me. You just cannot move. The nausea, the dizziness, the room spin, the light sensitivity; you’re stricken. Anyway. I think I’ve got my point across. Along with the awful, constant fatigue and post-exertional malaise I spoke about above, I’ve had so many different symptoms since my diagnosis. Be prepared for a list of every symptom I can remember having or that I still have now. Deep breaths, people.

  • Severe fatigue
  • Post-exertional malaise
  • Muscle weakness and aches
  • Headaches
  • Migraines
  • Sore throat
  • Decreased mobility
  • Difficulty sleeping
  • Unrefreshing sleep
  • Decreased appetite
  • Brainfog
  • Concentration issues
  • Memory problems
  • Swollen glands
  • Difficulty regulating body temperature
  • Heart palpitations
  • Light and noise sensitivity
  • Restless limbs
  • Bloating/gastric problems
  • Nausea
  • Light-headedness
  • Dizziness
  • Shortness of breath
  • Low moods
  • Anxiety
  • Burping a lot (yes, apparently its a thing! My M.E nurse said so)

There we have it. All of the symptoms I can ever remember having or still struggle with to this day. We’ll call this the end of my first proper post I think. I don’t reckon my poor, annoyingly weak arms can take much more of this manual labour I’m forcing upon them. So, in true chronic health fashion, I bid you goodnight. Until next time, you beautiful humans.

Love, Kelsey x

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