A Slice of History

I was diagnosed with ME/CFS as a child. I was in the last year of middle school (aged 10/11) and both the school and my parents said it was essential to find out why I was ill so much before I moved up to senior school. I was taken to the doctor, who asked questions and ran tests and sent me to the hospital, who asked questions and ran tests, and assigned me a consultant who- you get the idea.

With everything else ruled out, and since I’d had the symptoms for over a year (never mind the mandatory three months) she diagnosed me. She suggested that the trigger in my case – or at least a significant contributing factor – could be environmental: sick building syndrome. Between my first and second years (aged 8/9) the school moved to a brand new building. Right after that lots of people – students and staff – suffered with severe headaches and were going to the doctor with all sorts of medical complaints.

After being told I had this condition, my consultant said it was really unusual to get it so young (lucky me) and it was most likely I would have it for x years (I can’t remember the exact number) and then it would go into remission, hopefully for good but possibly flaring up if I had a period of excessive emotional or physical stress. If it persisted past that number, I would probably suffer from it to some degree for the rest of my life.

As for treatment. . . There is no cure, no single treatment. It was suggested I could keep a diary to help me cope (no thanks) see a therapist/have counselling (but you don’t really need to since you have a good relationship with your mother) and apart from that. . . try and learn to live with it.

I learned. It persisted.

But I’m sill here.

I know some people see my life as wasted and me as a layabout, because I don’t have a job, because I’m ill so much of the time, because my life isn’t conventional. (A ‘normal’ life, what’s that?) But most days I feel I’ve done the best I could, and I do do what I can when I can.

And I am still here.

 

Symptom: Fatigue

Basic/general points of ME/CFS are covered on the page about me (See Introducing. . .) This post deals purely with the symptom of fatigue, an extreme and persistent exhaustion that is held to be one of the central symptoms of ME/CFS.

NHS: This fatigue is overwhelming and a different type of tiredness than previously experienced.

It can affect the sufferer both physically and mentally, making it difficult to perform everyday tasks. Sleep does not alleviate the symptom, activity often makes it worse, and depending on the severity of the case it can vary from:

  • Needing to take things easy and possibly rest during the day. You may not actually sleep, but you lack the ability to follow your normal routine.
  • Sleeping longer at night and/or needing a nap during the day. You may be able to do a lot of things, but you’ll suffer for it later. Half days are the most you can manage.
  • Sleeping night and day. Even everyday tasks may be beyond your strength, you probably struggle to leave the house, or even your bed.

With ME/CFS, whatever level of severity you suffer from, if you attempt to ‘push through’ then you’ll suffer for it. Your symptoms are likely to last for longer and may get worse.

My experience: My level of fatigue varies greatly from perfectly normal when I’m well to not far from unconscious when I’m at my worst. This is not just tiredness or exhaustion orRelated image ‘I’ve been up for three days straight’. It’s more like zombification, except zombies have more life in them. When I’m severely affected I’m one breath away from comatose. i.e. I might wake up before midday and manage to get up but basically I’m asleep for most of the day, it’s near-impossible to wake me and if you manage it I’ll be asleep again – deeply asleep – in seconds. I’ve read about other people struggling to get downstairs or wash their hair. . . I’m fighting to persuade myself to get out of bed to the loo. I may literally spend a day asleep, waking only a few times to stagger to the bathroom and back.

It’s not always this bad though, that’s only my worst times. My most common level of fatigue these days is up by 10/11am, sleep for some of the afternoon, and in bed asleep by 8.30/9pm. (Again, when I’m suffering an episode, not while I’m well)

My tip: get to know your condition, your warning signs, and as hard as it is (for both you and those around you) it really is better to rest when you need to rather than trying to keep going and then collapse completely.

Category: Medical Information

This is not professional medical advice and should not be treated as such.

So I want to do a quick introduction to this category, because I don’t want to be accused of giving false information or dodgy medical advice. In Medical Information I’ll talk about (surprisingly enough) the medical side of having ME/CFS. Some of the information will be drawn from my own personal experiences, some from the internet or books or other sources. (If it’s somewhere specific I’ll try to cite it) I have no medical qualifications and just because information is included here doesn’t mean I endorse it or have experienced it personally.

I will strive to ensure the information included is accurate, informative, relevant, unbiased, and up-to-date.

I’m hoping to cover causes, symptoms, treatments, classification confusion, and anything else medical that people can think of. If you’d like me to look into something/discuss something and I don’t, then please let me know and I’ll try to do so. Ditto if I get something wrong – the idea here is help people.

This is not professional medical advice and should not be treated as such.

First Confession

My two most dreaded – and the most frequently asked – questions:

  1. How are you feeling?
  2. So what have you been up to?

For me the answer to these supposedly simple questions is either complicated, embarrassing, or something I’d really rather not think about. So I usually pretend, avoid, or out-right lie. Especially to the first. I’ve done it so often and for so long that if I answer the phone, go somewhere, or am face-to-face with someone who doesn’t live in the house that I do it without thinking.

I’ve been told this is a bit of a problem. This condition doesn’t have any obvious outward signs like a rash or a cough, so if I don’t tell people how I’m feeling how are they supposed to know. (I was amazed they didn’t just know, I mean, it’s obvious right?)

So this is one reason for this blog. I’m practising telling the truth, learning how to talk about having ME/CFS, and giving a voice to this condition which is so often too quiet to hear. I’ll keep it short for this first confession – baby steps. (I may use those words quite a bit. They’re sort of a thing I say which I’ll go into another time.)

Any fellow sufferers out there, or do you know someone with the condition? What are your most dreaded questions, and how do you answer them? Post a comment if you’re feeling brave, or go to the contact page to message me directly.