I’m pleased to say that the LDN is once again improving my symptoms. I feel I’m back on track with this medicine, both my ME and Fibromyalgia are a bit more under control, and I can do so much more.
After my setback a few weeks ago, I was nervous that maybe the effectiveness of LDN had already peaked for me. But not so. It took over a week to recover from the last crash, and despite weakness, sleeping a lot and some increased pain (up to about 7/10) I didn’t end up sliding down the slippery slope towards spasms, tremors, agonising pain levels and the choking on food and drink caused by loss of muscle function even in my oesophagus – which is the hideous cacophony of symptoms I would normally experience during such a crash. A few days bedridden, and a few more of weakness and an inability to do some daily living tasks like cooking, is by no means good, but it’s a darn site better than the suffering I normally go through.
It’s now two weeks after that setback and my LDN dosage has increased to 3.0ml a night. I’ve reintroduced the supplements protocol that were giving my methylation cycle and mitochondria a leg up, enabling the LDN to better do its work (my next post will be about my supplements and meds if you’d like more info). I regret letting the supplements fall by the wayside, but unfortunately money is a problem and I cannot afford the epic cost of it all every month. May-July is when my big annual bills come out of my bank account and I don’t doubt I will find myself lapsing again next time money runs out. Sadly, disability benefits are not enough to pay the bills plus the additional costs of living with severe impairments, when those impairments are not adequately treated by the National Health Service. And the way the UK government is going, the cuts to benefits for disabled people – despite spending a lifetime paying into the same tax system that is supposed to provide support for everyone who needs it – are likely to get much worse over the coming months and years. Such are the ideologies of an increasingly right-wing government of wealthy people who’ve never had to struggle. I hate feeling helpless to help myself. But it’s a state of mind thrust upon thousands of disabled people by a system that doesn’t value our role in society. And it’s probably a subject for its own blog post at some point in the future.
As I have been able to successfully increase my LDN dosage further, I am confident that my setback was not a side effect of the drug. I think the combination of my failing mitochondria and methylation made worse by having to stop some of my supplements, along with physical exertion, is what knocked me for six a few weeks ago (see my last blog post for more).
So what have I been doing with the new-found improvements in my ME and Fibro symptoms? I’ve been taking showers, not just lukewarm baths, because I am less sensitive to the sensations of pain caused by the water droplets. I have been watering my plant pots outside most days, instead of cycling between caring for them then watching them die during my regular bedridden crashes – because those crashes haven’t been anywhere near as severe. I’ve been making myself at least one meal, sometimes more, on most days instead of just occasionally. I’ve been drinking 2-4 litres of water a day, because most days I can get to the toilet as often as I need to, instead of allowing myself to get dehydrated because I can’t get to the loo ordinarily. And most fun of all, I’ve been listening to the audiobook of “Pride and Prejudice and Zombies” which is not only hilarious, but I’ve been following the story fairly well, only occasionally having to rewind because of brainfog dulling my concentration – normally I can’t follow a story for more than a couple of minutes. I highly recommend “Pride and Prejudice and Zombies” for a giggle, and even more so if you enjoy classic literature that’s been massacred with a Japanese katana sword.
Last Saturday I went to Cosgrove Canal Festival – it’s a calm day out and not too far from home. This was a little foolish because I wasn’t feeling brilliant. I’d changed my bedding the day before (first time I’d been able to in three months! It was getting pretty gross and was smelling like one of Mr Darcy’s zombies had been quietly decomposing in it). Despite pacing the job throughout the entire day with lengthy lie downs in between, it was far too strenuous for me and I had a bluescreen reboot moment, zonking out and falling asleep that afternoon then remaining slow and hurting for the evening. But my partner came over the next day and I really wanted us to go out. So with me feeling slow, with stiff hips and back and in some pain, I dosed up on painkillers, and off we went. It’s no surprise that I was weak, off-balance, and dragging my feet. I couldn’t stand up straight and my other half had to hold my hand tight to keep me upright. We’d walk a few steps and I’d suddenly have to rest. At one point I sat on a flatbed cargo boat that was moored nearby because it was the only thing at bum height! It turned out not to be wise because it was loosely moored and drifted around with me on it, taking my head into the leaves and twigs of a tree and opening up a water-filled gap between me and the bank! Luckily, like Mr Darcy, my boyfriend was there to help me across the gap and back onto dry land. When we returned to the car, I was exhausted and semi-dozed all the way home. I’d only been out about an hour. Once home, again another bluescreen reboot moment and I spent the rest of the evening slow and slurry. I knew the next day I would be zombified followed by a bad crash on the Monday, Tuesday and Wednesday. But the bad crash never came. Yes I was weak, exhausted and hurting for most of the next few days, but I could eat and I could get to the bathroom. One day during this crash period, I even got dressed. That’s a biggy for me.
The crash that I deserved from two consecutive days of irresponsible exertion was far worse than what I actually ended up experiencing. This is the second time I’ve been surprised by the lack of severity of a crash, since taking LDN. It’s good stuff and is definitely helping my body heal itself. My reactions to exertion although bad, are less extreme. And I feel a sense of systemic balance gradually coming back, with my digestive system working better and my asthma not flaring up. I still get bad chest pains, odd rushes of adrenalin and poor sleep quality. I still get some sleepless nights, and my sensitivity to light and movement leading to disorientation and seizures has not improved. But LDN isn’t a miracle cure, it’s a handhold that’s helping my body climb out of the enormous great sinkhole that is chronic illness.
So my positive thought to end on today, is that whatever setbacks come my way, I’m going to continue my journey climbing up out of that sinkhole, and LDN is helping me do that. At the bottom of the hole is a hoard of zombies, sickly grey of complexion, groaning and barely intelligible. It’s going to take a lot of determination for me to cling on and not look down. Because when I do, I can see each of the zombies is actually me. Each one is the me from a previous ME crash. And I don’t want to keep populating the sinkhole with more of the undead.
Now, where’s my Mr Darcy and his enormous great sword?