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

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2 comments

  1. Jessica Thomas says:

    I imagine they didn’t tell you because, like most doctors, they believed telling you would induce you to psychologically make yourself worse. I had a doctor who was genuinely angry that a different doctor had told me I had CFS/ME. He believed that the diagnosis was just confirming a psychological problem about believing yourself to be ill for no reason. Safe to say I did not return to that doctor.

    Like

    • That is a really good point actually. Okay so we know that M.E isn’t a psychological problem, so that doctor is a butt. But the possibility of the stress of a relapse making you worse could happen.

      Like

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