Frustratingly, this has not been a good couple of weeks. After great progress with LDN for the first five weeks, where my energy levels had increased to the point I was walking for short spells (and importantly I was enjoying walking); my strength and stamina had increased; and my immune-system problems like eczema and asthma had reduced – something suddenly changed. And my progress suddenly slumped back to a level I had been at many weeks ago. Ironically, my broadband connection did much the same thing: my laptop charmingly decided to download Windows 8.1 across my mobile broadband connection without my permission, and it ate my entire month’s data allowance. So if you’re wondering why this blog has been quiet for a few weeks – that’s why!
In one day my tiredness increased, I stopped being able to sleep at night and even melatonin wasn’t working, pain levels went up and energy levels plummeted. I feel permanently washed out and look very pale and sickly once more. I’m once again pretty much bedridden – and that feels very bitter having tasted a small amount of sweet freedom in the last few weeks.
My first response was to wait: expecting it was a just a minor setback and I’d start to get back to where I had been, and start progressing again. I’d had a couple of doctors’ appointments that week – they always tire me out and one in particular had taken me to the brink of seizure with blood pressure at 193/134. The hike in blood pressure was caused by a 45 minute wait in the waiting room as the GP was running late (I can only sit upright for a couple of minutes even on a good day, without serious affects kicking in). But I digress – it was clear that even after two weeks of resting, I wasn’t improving.
So I then tried to push through it rather than rest. But I could walk no further than a few steps outside the door before I was overwhelmed with exhaustion, went white as a sheet, and had a bluescreen-reboot moment, falling asleep on the sofa after desperately clambering back inside. My legs had stopped working properly again, and my other muscle groups were following suit.
So, tired of waiting to get better, I then started looking for answers. Over the preceding 6 weeks or so, as some of my dietary supplements had run out, I’d stopped replacing them. This is because to follow the kind of supplement regime that Dr Myhill (more on Dr Myhill in my previous blog post) recommends is extremely expensive – effective but expensive. I pay well over £50 a month on supplements, and to give you an idea of what proportion of my budget that equates to, it’s the same as two weeks grocery budget. That’s a big chunk of my very small income. So I’m wondering whether, as the extra doses of vitamin B12, D3, and magnesium that I had been taking on top of cheaper basic supplements daily, and the Ubiquinol also ran out, my body has been just about getting by on empty, until it hit crisis point.
Another thing I’ve changed that could be a culprit in my setback, is I’ve added nightshades back into my diet for the first time. But it’s been wonderful! Eating tomatoes and aubergines for the first time in a year and a half has been bliss. But it’s possible they’re aggravating my symptoms. They are known to be common causes of increased neuropathic pain and inflammation.
Lastly, my LDN dosage has continued to increase as recommended by the doc. I can’t ignore the possibility that perhaps I’ve passed my dosage threshold for taking this medicine?
Whether one or a combination of these things has caused my deterioration, I needed to find solutions. The first thing I’ve done this week is cut out the nightshades again. It’ll be interesting to see if any improvement comes from that. The second thing I’ve done is accepted that I’m going to have to reduce my grocery budget even further – to just £15 a week – in order to reinstate some of the supplements which support my mitochondrial function. One of the joys of living with disability in the UK is also managing poverty!
Supporting my mitochondrial function is particularly important as I’ve had an increase in chest pain and it even wakes me up in the mornings, which might imply the mitochondrial dysfunction is affecting my heart as well as my skeletal, breathing and swallowing muscles (which are more common symptoms for me than the chest pain). And the third thing I’ve done is reduce my LDN dosage back to the level it was when I last felt “well”, which was 1.5ml a night, instead of the 2.5ml I’m currently on. One or all of the above I’m hopeful will help lift me back to a state where I feel I’m making some progress again instead of being slumped in bed all day, exhausted and hurting. If I return to that improved level for a few weeks, I’ll adjust one of the three changes I’ve made to see whether it adversely affects me again. For now, I just want to start improving any way possible. Healing is addictive and I miss it. Fingers crossed there is a solvable cause to my recent deterioration, and this isn’t another permanent increase in disability – I’ve had so many of those in the two years I’ve been ill that I do sometimes wonder why ME isn’t considered progressive like MS is.
I remember a few months ago watching a video blog of a woman who had been taking LDN. She’d had a very positive experience for some weeks, up until one point when she was in tears on camera, because she’d crashed badly and her hopes for the drug had been dashed. I became quite tearful myself watching it, because I understood what it feels like to have your hopes raised that you may have a chance to overcome your disability, and then feel like it was just a false prophet. Some months later, her blog posts showed she had improved again and that her setback had been down to doing too much because she’d felt so “well” on LDN. She just needed to persevere with it and pace better. Before I started LDN, I told myself that I’d learn from her experience. In a way I have – I’ve not allowed myself to get upset and feel devastated at this setback. I’m disappointed of course, and impatient, but trying not to feel desperate. However, perhaps I haven’t learned her lesson of continuing to pace myself at a level that my disability expects and depends on. I think I have consistently overdone things every day since LDN started to improve my symptoms – because I can; because I can no longer afford homehelp so have to do more; and because I miss doing normal things like going outside – and perhaps I’ve worn myself down. And now my body has no reserves of energy to pull me back up again. Just like my broadband connection, I unwittingly used up my body’s allowance and have been forced to spend two weeks not at 4G speed, not even at 3G speed, but at G (literally – that really is the only level of internet reception my mobile phone can muster!). Dial-up would have been less frustrating, and at least I could have squealed along with the squeaks and squawks while I waited for it to connect! (Okay, I might be showing my age there)
So my positive thought for today is a lesson I’ve learned: that retaining self-control, however elated and excited I felt about my new capabilities, would have been the key to managing my healing better. I’ve made that mistake and don’t intend to make it again. There’s an episode of Family Guy where the wheelchair-user Joe Swanson has a leg transplant and proudly strides out of the operating theatre on his two new legs, only to be told that hospital policy states that all patients must leave the hospital in a wheelchair. I kind of felt like Joe Swanson after his leg transplant – ready to take on the world. But I need to accept “hospital policy” with a little less resentment next time and not dismiss it, knowing it’s for my own good. And as for my mobile broadband? It’s quite a lonely place being bedridden and without reliable means to communicate with the outside world – so the punishment for my overdoing it has been two-fold – solitary confinement. Social (media) isolation. That’s a harsh lesson to learn and one I won’t forget in a hurry.
For more information on Dr Myhill’s recommended supplements: