Service will resume soon

Hello all! Just a heads up that I will be posting properly again very very soon. I only got back from a mini-break on Tuesday so it’s been mostly rest rest rest for me. But stayed tuned; holiday posts and photos shall follow when I’m up to it 😁

Take care and be kind to yourselves. Kelsey x

What No One Told Me

I’m currently hiding indoors from this never-ending heatwave and thought writing another post would be the perfect distraction. So, with an icy bottle of blackcurrant squash by my side, I’m ready to rumble.

January 2009

Going even further back in my life, we hit my final year of school. I’d always been an incredibly academic type. I never found exams scary or daunting and loved to learn. Because of this, my GCSEs were so important to me. The school year had been going well so far; nothing unusual had occurred and my studies were progressing nicely. Until one morning, I woke up with a horrible sore throat and headache. Oh what joyous news this was! I’d had tonsillitis before and this felt uncannily like that. So I had to take the day off and get my mum to take me to the doctors for an urgent appointment. I bundled myself into the car, knowing that the doctor would very likely say it was in fact tonsillitis as I suspected. Lo and behold, the doctor diagnosed exactly that and gave me a prescription for antibiotics. Fast forward to a couple of days later and things seemed to be getting worse rather than better. My glands were huge and tender. My throat was hurting even more. This is definitely not good I thought. So we trotted off to the doctors again who this time said it could be glandular fever. And guess what? Antibiotics often make glandular fever worse. Brilliant! A blood test was scheduled and yes, the results showed up glandular fever.

I was off school solidly for 4 weeks; spending the majority of the time either sleeping or resting on the sofa. It was a pretty rough time to be totally honest, but admittedly I don’t remember that much about it; it’s all just one big blur. As I was starting to think about returning to school, there was something not right with my body. I was constantly knackered and lethargic. Yet another trip to the doctors later and I was told I had post-viral fatigue. They said it would likely last for another month or two. And here’s the part no one told me: no one said I could get ill again. The doctor didn’t once mention that I could relapse or even get a full-blown chronic illness. It was simply said to be PVF and that I would be fine within a couple of months, as long as I got plenty of rest etc. Obviously at the time, we just went with what the doctor said. Heck, I didn’t even know what M.E was so it never even crossed my mind.

I never went back to school full-time. I would judge each day by how I felt in the morning and would prioritise the lessons I needed to attend most. All the teachers were super understanding and I could go home at any time. I had work that I missed delivered to my home or given to me at school so I didn’t fall behind. With my resting and taking it easy, I managed to keep on top of everything. I was slowly beginning to feel better towards the summer and felt positive about my exams. Skipping ahead to results day, I was ecstatic to find out that I’d achieved my predicted grades in every subject (4 A’s, 5 B’s and a C). Happy days all round as my health was finally back on track.

My mum was working in a nursery at the time, and I decided to go in and help for a day, seeing as I’d finished school way before the summer holidays started for everyone else. I was able to keep up, help out and crack on for the whole time I was there. Soon, my ‘one off’ day of volunteering turned into a week…then another…then two more on top of that. My illness at the beginning of the year wasn’t even in my head anymore. I’d gotten better over time, just as the doctor had said. I’d gotten the grades I needed to attend sixth form and had the whole summer holiday to relax and have some ‘me time’. So yeah; you could say I was doing pretty well.

December 2010

If you read my first post, you’ll know that this is when I really noticed my symptoms of M.E; and how everything went downhill from there. After the diagnosis, one of my first questions was: Why did nobody tell me I could get ill again?! I don’t recall it ever being spoken about or even brought up as a possibility. I didn’t know it could come back, so I never asked. I thought a medical professional would know and would undoubtedly inform me if it was likely to hit me again. But there was nothing. I had recovered, or so I thought, had been symptom-free for about a year and was getting on with a normal life. I wasn’t taking any precautions or avoiding pushing myself because I didn’t know. I thought it was all behind me. I thought I’d gotten over it. I thought I was out of the woods. Should I have done some research and reading myself? Should I have gotten a second opinion? Should I have pressed my doctor for more information? I didn’t do any of these things because I trusted a doctor to know what they were talking about. I trusted them to tell me everything about the condition I had. Now I’m looking back, there’s only two possible scenarios:

  1. They didn’t tell me because they simply didn’t know
  2. They didn’t tell me because they didn’t want to worry me

Now I honestly have no idea which of these is true and I never will. With hindsight, you can look back and think that you should have seen it coming or been more prepared. Maybe I could have done some searches online to find out more about PVF. But when you’re going entirely on what a health professional says, you don’t for a second think they’re omitting something or are clueless. You are putting your faith in them to know what they are talking about and to be upfront with any outcomes, complications etc. It’s not something I try and dwell on too much now. I can’t change it. It is what it is.

I just don’t know why no one told me.

Kelsey x

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

Taking the plunge

Well isn’t this an interesting development?! My first foray into the world of blogging has begun. I haven’t quite decided on a specific focus for my posts yet. I’m simply thinking of incorporating all sorts of daily life stuff and my health journey with my various hobbies. This could turn out to be a complete disaster and I’m prepared for that outcome. I do have a strong creative writing background though so at least I’ve got that on my side *cheers*

Anyway! If you’re reading this, I hope you enjoy reading future posts and maybe learn something new 🙂

Good company in a journey makes the way seem shorter. — Izaak Walton