So, how was it? The second time around?
Well, horrible, obviously.
In some ways my health was worse than the first time, than after the glandular fever. I had whole days where I was too tired to speak and emerged downstairs only to go straight back up again with the exertion of it. I have never felt that tired, not in the midst of the glandular fever, nor after I pulled three all-nighters in a row on my undergraduate degree where I was so tired I actually thought a piece of blutack spoke to me. Sometimes, walking into the kitchen and putting a plate down was so exhausting I sank onto the sofa afterwards and tried to get as low as possible, so I would be able to keep my eyes open and keep thinking. Television was classed as an activity I had to have rest from.
In other ways it wasn’t as bad. In 2008, I went about 2 months without walking at all, whereas this time I always walked down the stairs and to the toilet, and even though I had weeks where I didn’t leave the house, it never turned into months and from about October I was about okay to go outside, sometimes.
How did I recover? I don’t know.
I have experienced so many symptoms that I attributed to gluten this time around that I am beginning to question that diagnosis and will have to spend a horrible few days soon testing that theory – on the one hand, eating cakes, but on the other, possibly being bedridden.
The recovery started by a kind of turning down of the volume. I became able to stack the dishwasher, and feel exhausted, but continue to do so, rather than have absolutely no choice but to go and lie down and (not) sleep. I remember waking up once afternoon in October and being symptomless. It didn’t last, but it was the first day where I felt about alright, even though all I did was pick up a cup, boil the kettle, and go and lie back down again until it finished while psyching myself up for reaching for the teabags. Can you imagine? My specialist says CFS is like chemotherapy, or late stage aids, and yet, even close friends do not react how they would to those things. Anyway, I suppose that’s how recovery began: with the good days stacking up, and slowly slowly outnumbering the bad.
And how am I now? Well enough to commit to coffee, even though it’s a train journey and a fair walk away. Well enough to work 5 hours a day (from home), albeit still sometimes lying down. Well enough to agree to go to the work Christmas party, but sick enough to still worry about it.
Lack of sleep still affects me much more than it used to – even in the midst of my CFS in 2008, I was often sleep deprived and although tired, I would still function. Now, two days of less than ten hours’ sleep on the trot and I can’t do anything. Which is quite an unreasonable quota to keep up with, and I do sometimes utter the sentence “tired; only had 9 hours’ sleep” which to the untrained ear does sound baffling.
I still get up at lunchtime and don’t reply to a work email before noon, which they seem alright with. I still lie down if I’m going out in the evening and I have not yet sat up all day, though I am close. I am a bridesmaid at a wedding in early January and while I am not worried I am apprehensive. I still struggle to walk long distances – shopping for more than an hour knackers me – and I can only hope that distances grows and stretches like it did the last time, although this time it is mind-numbingly even slower than before.
And how’s The Fear? Well, at bay. I don’t know why, but it is easier to be optimistic that something won’t come back when you’re on the other side of it. I know now that this is something I might face for the rest of my life, relapsing, remitting, and while I am not okay with that I figure that as long as I continue to bounce back from the relapses I might well learn to be. It might come back much worse. I might relapse and remit and not get 100% better each time and drop down to 50% functioning in my late twenties, or 10% or worse, forever. This has happened to people that I know. I might end up shut in a dark room for 20 years like some CFS sufferers who started out like me. I might end up blowing my brains out.
But – probably not. If there was a bad time to get flu, it will have been in the year following glandular fever, and this might be the last bout. And that’s the school of thought I’m going with.
Best line of the bunch: Well, fucking horrible, obviously. You should attach audio files to your blog of you reading it, if nothing else, just for those lines.
First off, I just cannot fathom being so drained that I’d be unable to do…well, practically anything. I mean, I’ve been tired — pulled multi-all-nighters in college, been up every 15-30 minutes for my newborn son during the night, and so forth, but even in those times, I could still *do* things, I just didn’t want to. I think that’s the difference, and the hard part to relate to — willpower isn’t enough when you’re down.
I am, however, constantly amazed at how well you have held up and adjusted to these challenges. I mean, I’m sure we do not behold every time that you spend an hour crying on MR’s shoulders because you’re just so sick of this that you don’t know what else to do, but the face you show us, at least, is brave and mostly optimistic and at least sarcastic enough to make light of something that is clearly NOT.
I think that, in and of itself, is your biggest attribute in all this — no matter what seems to be thrown at you from the demons raging in the shadows, you persevere and remain BG. Well done.