The Mining Operation

First post in a while; I suppose that's the irony of someone with ME trying to run a blog - being too ill/tired/in pain to write anything in it. My head's currently hurting from an episode this morning, but I've retained enough energy for a post.

I've been struck down with a cold for the last two weeks or so - and there's no such thing as 'just a cold' with ME. You have all the symptoms alongside the ones you suffer everyday, and the latter exacerbated. This morning I was rather rudely awoke by a coughing fit which lasted 10 minutes or so, and set my head off in flames. Worst pain I've encountered in a while, and that's saying a hell of a lot considerig the continuous mining operation that seems to be going on in my skull. It encompassed my whole head, setting it alight. Not nice I can tell you. I've used 4head, and became so desperate I resorted to the Ibuprofen, but even they didn't work! It's lessened slightly but is still there, throbbing away.

Going to end this little pontification on pain on a positive note (ooh all that alliteration). I've been doing the '30 Day Song Challenge' on Facebook, and was stuck on the "Song that reminds you of an event" one. The only event I could think of was a future one (well, I hope it will be), when, after years of struggling with ME, I'll be able to stand up and run, just run, and run until "my feet no longer run no more". I can't help but think of that when I listen to this song, and while in many ways it's hard because this event seems so far off, the overall feeling it leaves me with is one of positivity, and everyone needs some of that :)

Time

Time is one thing I really fear. I know it's a very common complaint, not enough hours in the days, time flying by far too quickly. And I'm sure there are many people who fear it, in their way, fear in bringing death. I suppose at least it's not bringing me that (well, not for a good few years yet, I hope). You see, for me marks this illness, and how long I've suffered, and how many interminable years it may go on. Every year another birthday, another year down; another anniversary of first noticing symptoms, of diagnosis...so many reminders of a thing that I can never forget as it is.

And I fear the time I've lost as much as the time to come. I was 11 when I first started noticing symptoms, no more than a child. How many people say your teenage years are the best of your life? Mine weren't. By the age of 12 I could barely walk and left school, and children that age are fickle, so I don't hold it against those friends of mine who stopped popping round, it's natural, children know no better. But it meant that by the age of 14, I was friendless, trapped in my house that was now my prison. No, that's wrong; my own body was my prison. And the "best years of my life" were spent that way, as time raced by, gobbling them up. I did my GCSEs in the living room, and after they were done, I didn't go out celebrating with my mates, I went to bed and slept, exhausted.

I was 20 a couple of weeks ago, no longer a teenager. But the truth is, I never really was one, never had the chance to be. How many experiences, good and bad, I've lost to the wind, I can't begin to imagine, and in truth, I try not to. Who'd want to think about what they've missed out on? Yet time, and every anniversary, and every little marker it thrusts carelessly into my face, is the reminder of all that lost time, that I'll never get back, and those experiences I'll never get a chance to live through.

September - first noticeable symptoms
November - tortuous tests by disbelieving doctors
March - diagnosis

The list goes on...

You want this, do you?

An entry from a blog I wrote a few months ago, but which I thought was relevant to this. Plus I'm too tired to write a new entry, lol.

Something has been playing on my mind the last few weeks, something that, really, has always been there, but had faded in more recent times.

One night a short while ago, I was speaking on the phone to a friend, who asked me what I'd been up to lately. So I told him: nothing, except for spending 80-90% of the day confined to my bed. He laughed, replying that he'd love to be able to spend all day in bed.

Ha. Such total ignorance angers me. If it was from a person who knew nothing about me, didn't know I was ill, OK, understandable, but from someone I've known for years? I tried to control my ire, but put him straight with something along the following lines:

"OK, so, you'd like to be lying in bed having to wear an eye mask because any light, even that through closed curtains is like knives to your eyeballs, your head throbs with such pain you think your skull my implode and feel so weak that you can barely even lift your arm an inch? You'd really like that, would you?"

As you can imagine, that somewhat had him choking on his words, and to his credit he was apologetic and very considerate and, dare I say it, kind thereafter. But still, it grates on me that even people I've known for years, who are aware of many of the details of my condition, can still make such truly annoying and yes, hurtful remarks, undermining my suffering and thinking I'm somehow having the time of my life indulging in total sloth.

That's certainly one sin I won't be going to hell for. Much of the time, I feel I'm already there.

Symptoms

These first few posts I'm going to use to give a basic outline of the symptoms of ME (mainly the ones I suffer personally, as I can give first-hand accounts of them) and some background on my history.

Symptoms

Fatigue - This is not mere "tiredness", this is crippling exhaustion, and this is constant. At all times I feel a pervading weakness in my body, and after the smallest task, such as using the toilet, I often need to lie down and rest. There are times when I'm so weak and completely devoid of energy, that I struggle to even lift my arm a centimetre in the air.

Pain - This comes in many forms, many guises and many places. The worst is usually my legs, both lower and upper, and is manifested as a burning sensation in my muscles which can leave me in agony, and this pain often keeps me awake at night. I also get this in my arms and feet.

Migraines - These I get extremely bad. My head often feels like it's going to split open, and I have found myself screaming and needing to go to A&E on account of these.

Idiopathic stabbing pains - Pains in my head that, as the name suggests feeling like being stabbed, repeatedly, in the brain. They come on suddenly and without warning, and leave me crying out, clutching my head, sometimes losing vision and, if I'm standing up, falling over.

Nausea - Again, this can be quite constant, and quite crippling at it's worst, to the extent that I can't move for fear of throwing up. It's not just limited to my stomach either, strangely; I often feel it in my chest, back and neck. Try explaining that to doctors.

Sensitivity to light and sound - Even without the sun shining, daylight is often too much for my eyes to bear and I'm forced to wear sunglasses, even indoors, and I have to sleep with an eye mask. Loud noises cause me a great deal of pain, whether it's the sound of a police siren or people's voices. I have to wear ear plugs when resting because people's voices, even downstairs, are too much for me to bear.

Cognitive difficulties - I find it difficult to articulate myself because I can't think of the right words or my mind goes blank. I have trouble taking in what people are saying to me, or I take it in, even respond, and then instantly forget it completely, which is furstrating for me and for the person with whom I'm trying to converse. This is just to name a couple of ways this affects me.

Disrupted sleep - Even though I might feel exhausted and too weak to move, I often find it impossible to sleep, or I wake up numerous times throughout the night, and when I do sleep, it's spent mostly in a state of REM and so I actually get very little rest and benefit from it, and wake up feeling sometimes even weaker and more exhausted than when I went to bed.
The reality does go far beyond what can be expressed in a symptom list, but I hope this gives an idea, albetit quite rudimentary.