Improvements!

Good news...

I managed to go from Thursday to Saturday inclusive without a headache or a bout of nausea. Even better, I felt improvements on both Friday and Saturday. It is SO hard to quantify, but the two things that leapt out at me were:

• Apathy receeding
• Brain-fog clearing

Those of you with autoimmune thyroid disease will know that the hypothyroid element - Hashimoto's disease - can give you a sense of apathy like no other ever experienced before. I honestly have never been an apathetic person, even when I felt at my lowest over the years with M.E., I still had a lust for life and a sense of desire. Autoimmune thyroid disease took all that away and not in a depressive sense, as I often was not depressed at all, but I just felt totally apathetic... exhausted without a sense of care or desire. When you know this is NOT your 'self', it is very upsetting to feel that way. I have always been a happy go lucky type of person who would talk to anyone, help anyone and try things with a sense of adventure, but over the years of chronic health problems, this has gradually been eroded. When my thyroid nosedived, it was like a final nail in the coffin.

Since taking LDN, my sense of desire has started to awaken. I can feel myself having a tiny glimmer of hope. A tiny sense that maybe this is not as good as it gets, and maybe there is a chance I can do something with my life that is more than what I currently do. The feeling is not massive, but it's there and it seems strong enough that even when I am crashing or experiencing side effects, it's not overruled by the awfulness I am subjected to.

As for the brain fog - another bane of my life. I have lived with this for over 20 years, and battled against it to get my education and to have meaningful relationships with people. I could definitely do without it. I am aware of a new sense of clarity. I am not saying I will be cracking out the algebra tomorrow, but I noticed in my class on Wednesday that for the time of day, I felt far more alert than normal and I had not even had a coffee. I just felt that things in my brain - yes very technical description. - were connecting better than before. So I was not observing everyone else as if from behind a misty pane of glass with ear muffs on.

Energy-wise, I have more energy. However, the energy comes with a warning... While I might have the spark of energy to do something, it does not necessarily mean I should or that I have enough to finish whatever it is I chose to do without depleting myself/crashing. In short, feeling I have the energy is quite different to actually having the energy and not paying for it later with a PEM (post exertional malaise). So what has happened is that I have done the typical thing of:

Oh I feel a bit better... Let's rush out and do x, y, z that needs doing...
Wham, bam, thank you ma'am... CRASH.

I feel as if I have been doing - active/crash, or active/active/crash. Obviously, this has to stop. I need to go back to M.E. 101 and start pacing. So what if I feel a bit better? I should really do what I would normally do without making myself worse - my baseline - and then use the extra energy time to force myself to rest and potentially heal. I am going to practice that this week. I am in bed as I type this and going to lie down now.

50/50

Yesterday was a 50/50 kind of day...

50% good and 50% bad.

I am still suffering from very disturbed sleep. I randomly get to sleep - there is no regular time, and then I wake up, sleep, wake up, sleep, wake up...

Yesterday I had to wake up early and get myself out of the house, as this academic year I had challenged myself to attend a class. I thought: at least one class out of the house, activating the brain and meeting people; attending a class will do me good. It's been tough, and I do think has impacted me - set me back ability wise, but having had these health problems for most of my life, I sometimes feel that I just have to 'do' something, even if it comes at more than just a financial cost to myself.

The good - hopefully LDN related - news is that I felt cognitively more functional. I felt a lot more alert than normal. I felt slightly more energetic especially considering that I had had poor sleep.

In my typical hopeful fashion, I started to think I had turned some corner after my dose increased. Yet, by 2pm, I was LDN sick again -  with a bad, bad headache and terrible nausea. It was so bad, I could not do a thing and had to spend all afternoon and evening in bed. I also developed a runny nose. Feeling so unwell and so incapable, I just went back to feeling desperate and miserable.

So last night, I decided to take a 'drowsy' allergy pill. Usually that would make me have a fairly good night of sleep, once I actually fell asleep. Not last night, which was another night of disturbed sleep. Somehow LDN overrode the tablet!

Today I woke up feeling not too bad - quite exhausted, but not crazily fatigued to the point of bed or chair bound. I decided that if today is headache and nausea free, I will be very happy. To have a good day without those side effects would keep my spirits up! I managed to go for a walk... And although that did make me feel unwell in retrospect, the fact I even managed to do it in such cold weather, was a miracle really. I keep on hoping.