I’m now in the fourth week of taking LDN (for anyone visiting my blog for the first time, LDN stands for Low Dose Naltrexone and it’s a medicine that is used to help people with autoimmune diseases and related illnesses like ME and Fibromyalgia. There’s lots more information about LDN and how to obtain it in my previous blog posts).
The improvement in some of my symptoms that I reported last week have largely been sustained – that’s the good news. I pushed my luck a bit, despite my good intentions and did rather too much in the week, which is the bad news. I was looking after two lovely dogs for someone, which meant my focus shifted from doing only what my body feels it can do, to doing what the dogs needed, when they needed it. So by the end of last week I was falling asleep with exhaustion mid-afternoon (a bluescreen and reboot moment), I had increased overall tiredness, struggled to sleep at night and I was craving carbs like a chocoholic gone AWOL from Green & Blacks’ rehab.
Also the rash on my face has flared up again which is frustrating. But that might be because I spent time in the sun last week. Perhaps any positive effects that the LDN has had on my immune system isn’t enough to deal with direct exposure to the trigger for the rash, which annoyingly (and somewhat vampirically), is the sun. (I’ve often wondered if I have Lupus, but after three blood tests for it last year that came back negative, weak positive and then negative again, the doc said it’s unlikely to be Lupus). So I can only assume that my apparent allergy to sunlight is because I am probably one of the undead – a dracula spoonie – it would explain my sleep patterns too.
But not my love of garlic. Oh, well. Back to reality:
I’ve managed to avoid any single big over-exertion this week, instead I’ve had lots of little ones in response to the pooches – feeding and grooming them, playing with them, and being woken up early in the morning by the little Tasmanian Devil-like alarm clocks that they are. I feel like those many little activities have had a cumulatively detrimental effect on my symptoms. But I’ve still not crashed, so not had PEM, nor had a seizure which is a good sign – it has taken far less to trigger them in the past. And amid all of this, my overall ability to walk has been maintained at the same level I experienced last week, and still without significant consequences. My mood is still elevated. And I still feel generally less unwell than usual, despite the increased fatigue this week. So I think the LDN is still helping even though the improvements have plateaued out.
I aim to rest as much as I can this coming week. As my LDN dose increases by another 0.5ml from this coming Thursday, I want to give it the best chance possible to show results, by taking it when I’m well rested. Next week I have several medical appointments which will probably knock me for six for a few days. What I will allow myself to do is take another short walk whenever my energy levels allow – it helps me to understand what my tolerances to exertion are, especially as they’re currently changing. But I won’t force myself to do it, I’ll just listen to what my body can do and judge it day-by-day.
So on to a positive thought for today: with the best will in the world, and determination to listen to our bodies, when others are dependent on us we do have to turn a deaf ear to the cries of our own poor old bodies. Whether you have pets, kids, a reliant family member or other dependent, congratulate yourself on getting through each day. Day in and day out, I feel like I’m having to look after a badly trained, neglected hound that doesn’t let me sleep but tires me out, demands all my attention but is nigh on impossible to understand, however hard I try. Thing is, this badly trained and neglected hound is my own body. So to all the spoonies, foggies and broken people reading this blog, you’re much stronger and dependable than you realise.
Now does anyone have the number for the Dog Whisperer?