So I’m on my final bottle of LDN for this, my first prescription of the medicine. And I’m starting to feel that the transformation has been really quite remarkable.
Yesterday evening I went for a walk. Like all my walks it didn’t have an intended destination. I find that’s not a safe way to manage my energy levels. Instead I listen very carefully to my body to try and gauge what 40-50% of my energy limit feels like, so that I have the strength to make it back home again and preferably avoid a crash afterwards. By no means do I always get that right and I have in the past found myself stranded a few feet from my home unable to walk or talk, which is very frightening. But yesterday’s stroll, like so many have been recently, wasn’t a worry and didn’t end in disaster. In fact it was a pleasure. I walked all the way to a nearby parish church (a 15 minute saunter) and had enough energy to walk round the outside of the building admiring the architecture and reading a few names on interesting old grave stones before walking back home again. A half hour lie down and I felt pretty good again and just needed to use my remaining energy wisely for the rest of the evening. No bluescreen moment. No reboot funny turn. No four day crash. I’ve come a long way from the “can I get more than ten paces outside the front door without collapsing?” guesswork of three months ago.
And there have been other improvements. In April, just before I started taking LDN, I looked after a friend’s dog in their home for a few weeks. I only took on the task because they live in a bungalow so I knew that I would not be limited by stairs. It was a wonderful few weeks but very, very hard. It taught me how hard it is to look after myself with this illness, because I now had a dependent and I couldn’t let him suffer just because I was suffering. So I missed meals in order to have the strength to keep him fed. My pain levels were out of control after the first few days from the exertion, I felt permanently hungover and it was a harsh reality check for me. Anyway, last week, I was asked to look after him again, which I accepted gladly. It was a lot less hard this time around. I took him for short walks twice a day. I kept him fed and watered and didn’t neglect to feed or wash myself. I still rested a lot – however well I might manage my energy output, I still have problems regulating my heartrate, blood pressure and body temperature when standing or sat upright, so lying down for frequent horizontal rests is still a necessity. In the whole week I only had one bluescreen-reboot moment and that was caused by walking to the supermarket and back on a very hot afternoon (about a 25 minute round trip). Back in April I couldn’t manage 25% of that journey without serious consequences on my symptoms lasting several days, and I certainly wouldn’t have been able to do it on a hot sunny day.
A third example of my progress – and this is a biggy for me because it has the largest impact on my quality of life – is being able to prepare meals for myself. Not just one meal every few days as I’ve struggled to achieve in the two and a half years I’ve been predominantly bedridden by ME. But two or three meals a day pretty much every day. It’s a real luxury to feel satiated. To no longer be suffering from painful nutrient deficiency-related problems like angular chelitis and anaemia. And I’m throwing away much less food as I’m not spending days on end in bed while it decomposes in the fridge, which is better for my bank balance too.
Needless to say, with this much progress I have contacted the private doctor again to request a repeat prescription of LDN. (For more information on how to obtain LDN yourself, please see my earlier blog post Obtaining Low Dose Naltrexone (LDN) and for more general information about the medicine please see Researching Low Dose Natrexone (LDN)) Fingers crossed that I’ll continue to improve on the medicine. There are some symptoms it hasn’t been able to improve: the seizures, migraines and pressure in the base of my skull still appear upon exertion or exposure to moving images, flashing lights, sweeping camera motions on the television or travelling in a vehicle. The tinnitus and photophobia remain pretty much unaffected too. But the way my body uses energy, my balance, dizzy spells, falls, stamina, ability to socialise for short periods (45 mins or so), pain levels and general sense of wellbeing have most definitely improved. The steps towards improvement have been small, tentative and slow. But when you’ve been unable to do so many things for yourself, and have gotten used to suffering as a way of life, even tiny, incremental improvements make a positive difference. And when I look back at how I was in the Spring, cumulatively those improvements have been huge. I’m really excited about what my next tiny, little steps will bring.