Friday morning I thought I had gotten away with the increase with no ill effects. Delusional as usual haha... Alas, no, that would be too good! To summarise, I am having reasonable days followed by the feeling of a 'plug being pulled' late afternoon. Suffice to say, I am back in bed ASAP when that happens. I feel really bad during this period of time; goodness knows what is happening inside me!
One must be grateful for small mercies. I appreciate even having a slightly better day, and over the past few months since I started taking LDN, I have definitely been attempting more than I have done in the last 3 or so years. Some of my attempts have been successful, and others not so much. I still have my days of wondering what purpose my existence serves, but my optimism/positivity baseline has definitely gone up. I think this is because as I have felt less apathy and a little more energy, I have been trying more experimental exertions and I am buoyed by having some success when I do try activities. I have gone from having virtually no days where I could do much, or anything at all, to having some days where I can do one of two things. This is happening each week; I am getting at least one or more days where I feel like that, which is great!
The brain fog has been an interesting one. I had it really badly this past week, and then I came down with a stomach bug, that seemed to have taken a while to come to a full head. It seemed as if, while I was coming down with that bug, my brain was even more taxed than normal. I had great difficulty functioning even with small and simple tasks. I would like to think that LDN has improved my brain fog in general, but it is still early days and I would be lying if I said I am not having bouts of it quite badly. Maybe some of this or all of this has to do with a gut connection?
LDN giving me any positive results does come with a responsibility I need to place on myself... To be mindful of not overdoing it. I have mentioned this before, but even after 22 years of this disease, plus having learnt energy management and pacing, I still find it difficult when I feel glimpses of being a bit better, to not start doing all the things I know need doing or 'await me' and to continue to at a slower pace. It goes against the human instinct or desire.
One area that LDN does not seem to be making any inroads into is pain. This is disappointing.I has mistakenly assumed that if other things were better, this would lessen too.
I shall keep making notes of my LDN experience for my own reference and maybe it will help someone else too.
This is a very interesting read, I wish you all the success with taking LDN, I look forward to hearing more about how you are getting on with it.
ReplyDeleteThank you so much for your lovely comment and your advice on my blog, I will be sure to look at Phoenix Rising, I've not heard of it before so thanks for suggesting it.
Take care,
Hayley-Eszti
Hi Hayley
ReplyDeleteSometimes I feel like I am clutching at straws lol! I made a decision to give this straw a year before I decide whether to continue. I know some M.E. sufferers on it long-term and others for whom it was not tolerated, even in tiny doses, or for whom it didn't work. From an autoimmune perspective - the AI thyroid disease, this treatment is desireable as, in theory, it should halt the attack on the thyroid.
How are you feeling since the diagnosis? I was thinking about you the other day and wondered if the doctors have tested you for POTS (tilt table test etc) - might be worth looking at too, as it often coexists with M.E. and can cause fainting/syncope, as well as other horrible autonomic dysfunction symptoms. DINET http://www.dinet.org and their forum have more info - http://www.dinet.org/forum.htm. Thought I'd throw that out there as I know how you have to think for and advocate for yourself with the NHS!
Take care
Vicky