More long winded mytherings from East Anglia - my husband is really missing my ferocious PMT, he relies on it to get things done!

This morning, I awoke having had something unusual called.... sleep. I had some friends call around last night, and I had my two medicinal glasses of red wine, did some epic moaning and story telling, with bells on, and slept the sleep of the wicked. My man slept on the landing, as for the last couple of nights, I have been doing the highland fling in the small hours, and he has a week-end of workshops to teach. We have a lovely spare bed on the landing, curtained off with rich velvet drapes, and decorated with interesting pictures and lighting. My friend Hairy Legs likes to sleep there, sometimes for weeks at a time. However when he is not there, it is used as an 'occasional huff bed' - an escape from any form of bedroom night time turbulence of the wrong kind, and this includes full on snoring - which I have to admit these days is as much myself as him.

Some interesting changes are going on for me regarding the LDN. Having started on a tiny dose lower than many start on, due to my awful history of drug allergy and profile of five autoimmune naughties. Although optimistic having read up for six months prior to commencement. Some very interesting changes have come about already.

I was never ever listened to in the past regarding my extensive psoriarsis... nothing would touch it, tar would blister me, steroids would do nothing.... and two main triggers 1) any viruses or bugs and 2) my monthly hormones as for stress, no change. I always maintained there had to be more than one disease, and worked hard to work out the other four and have them verified in a hospital setting, which I did.

I am on day one of my cycle now. Normally I would have been in bed for around four days, with a flare up of everything and my skin... which goes mad at this time, or during a virus or exposure to an infection. I am in bed now, but I think up again soon, so a real change there. Visitors have noticed a marked difference. Also my water retention which with the help of Dr BDP has dropped from up to 12 pounds down to five at this time, this month, apart from half a day with a bit, has not really appeared in it's normal unwelcome form. I am of course still keeping up with the excellent diet, including oily fish or the supplements, and everything else I am supposed to be doing and eating carefully etc. Also I have been in and out of hospital with the children surrounded by forbidden paninis and glowering at people whilst eating my own body weight in fruit nuts and avocadoes. I am doing ok, normally being in that setting full of children with ailments and ill already... can be quite tricky for me. The diet is going fine for me, always been healthy, the only difference has been the gluten free since last August. My skin is noticeably improved!

Also my husband relies on my infamous PMT to get all the things done which he has avoided for the last month. He normally waits for me to get cross about all the things he has lamented about not doing over the last 28 days, how he has no time, or something else is more important etc. I usually produce a list of things he has promised himself he is doing and has avoided..and draw up a star chart and get cross about the contamination of our social life...This morning, having knitted his eyebrows together for the last week telling me how all over due reports and work projects are commencing today... I was not at all surprised to be treated to full on music all morning, as he listened to past recordings, learnt new tunes for bands he is in and generally fiddled around with recording equipment wearing a new pair of slippers - whilst informing me that everything was in hand. Normally I would have half a hissy fit...as this means no fun with him next week... but I just could not conjure up the hissy fit... I just resorted to writing the word cancelled on every musical engagement on his diary and whiteboard. The things he has promised to do will flash up at ten minute intervals starting from this afternoon. If my PMT continues to disappear at this rate I may have to purchase a cattle prod.

Meanwhile I have had not much going on as both my children have been off school an awful lot with their migraines and horrid ailments... I have had a non stop cooking frenzy and teaching fuss going on. I bought some ready made gluten free pastry the other day, it behaved like plastercine and drove me nuts and was last seen screwed up in a ball and stuck to the lavender bush outside my kitchen door, even the gluten free birds in the area have changed their flight path as a result of it. We have had lots of ongoing fuss ongoing with wet log piles. Currently I have moved rather a lot of it inside and stacked it up in the hall against the radiators, which he tries hard to ignore as he navigates past it. The cold weather does change behaviour.. for a number of nights I kept hearing this disembodied meowing as for the umpteenth time my elderly Tiger got herself shut in the airing cupboard - the cold snap had the opposite effect on my man, who insisted several times on how it was not cold and disappeared in a paper thin leather jacket only to appear back later looking frost bitte, feral and decidedly chillly.

Tomorrow I climb up for the first time on LDN to 2 mg, hey ho, this is looking good for me, and all three hospitals are watching my progress with this!

I have never had any form of break with my diseases.... so hoping it is not a placebo effect...I think I would probably be to cross for those to work... but here goes... next dose tomorrow.

Mary F x

15 Replies

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  • That is excellent news Mary that hopefully the LDN might actually be working, Fingers crossed your improvement in health continues and then you can buy a cattle prod soon hopefully! Can just imagine all the gluten free birds!!!! Take care, Great to hear you are improving health wise. C x

  • Ta - same to you MaryF x

  • Glad you are progressing nicely with the LDN so far and that your moods swings are also improving.

  • I don't really get much really in the way of actual mood swings.. just some serious grumps related to intense pain for about four days before hand... but yes an improvement! - Mary F x

  • So pleased for you Mary and have fingers crossed that the increase improves things even more xx

  • Thanks. Mary F x

  • This LDN stuff sounds as if it could be the answer for you! my fingers crossed for you too!

    As for migraines-my husband is having a great result with cranial osteopathy for his, after 30 years of suffering.For your children, the Osteopathic centre for Children in London could help your kids.My son's life was completely changed with treatment.just a thought Jan xxxx

  • Ah thanks for your suggestion. I am a fan of National Migraine Centre, in London. My children suffer from Hughes Syndrome and osteopathy would not work for that. As it is sticky blood, and in my daughter's case systemic lupus attacking her nervous system. A tricky one, although for others with migraines for different reasons I know this can work well.

    However my friends husband. had a migraine for 32 years.. and after the book I read, whilst on the road to finding out all my diseases.. used the advice of one book and dosed with magnesium.... and no longer the migraine!

    Thanks for you interest though. Mary F x

  • My husband fed himself with magnesium for months, but it still didn't do the trick. I don't know how cranial osteopathy works because it just looks like a healing session, but it is sorting the migraines. It sorted my son's asthma and pituitary problem as well.But it may well not be right for lupus and Hughes.

    This website is just great for sharing ideas! x

  • Glad things are looking brighter for you Mary. The blog was hilarious as usual. Take carex

  • Thanks. MF x

  • It's great that you are noticing improvements. Long may it continue!

    I'm also intrigued to hear that PMT has a purpose after all :D

  • Yes, to both. Mary F x

  • Was the LDN prescribed or are you just trying it anyway??? I am SO tired of trying to speak to Docs about things that I have read about and am nearly always made to feel such an ignoramous!! It's like banging my head against a brick wall. I saw a new endo yesterday as my usual wonderful guy has gone abroad to work to get away from the NHS!!!!. First thing he said was that I should take statins for my high cholesterol, which I have always refused to do and was 'warned ' that I was taking an enormous risk by not doing so!!! From then things progressed = downhill! They have the academic knowledge = WE have to live with it [anyway we need cholesterol, why is there so much dementia around.] Great to rant!! Ging

  • It was prescribed to me, but only by my own detective work, I flew to Glasgow and saw a doctor privately due to his knowledge of autoimmune disease. Mary F x

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