Up Up and Away

Up – My LDN Dose

I upped my LDN nightly dose last week from 2ml to 2.5ml. I tell you it’s such a teeny tiny amount of liquid but boy my body had something to say about it.  The side effects I had from the LDN only lasted a few days and I think were compounded by me starting to actively eat wheat again and being busy the previous week.

On the 2nd night  of my increase (Wednesday) I was woken around 3.30am with strong nausea, a real churning stomach.  I felt pretty delicate and a little sleep deprived the next day.  The nausea wore off by midday but once I did some small exertions back it came albeit mildly.  By late afternoon I was having acid indigestion (not something I normally have) and that night I was woken by strong nausea again around 3.30am.  After sitting up for a couple of hours and with the help of my faithful friend Resolve I got back to sleep at 5.30am and slept through until 10.30am.  I really needed the sleep!

During Thursday the nausea was hanging around – mild but a lot stronger than the previous 2 days.  Acid indigestion came again that afternoon and I was really uncomfortable by the time I went to bed.  I tried Eno but it didn’t help and then had to wait to take a Resolve which finally settled my stomach enough to get to sleep by 1.30am.

I slept in a little later on Friday and the nausea was pretty much gone and no acid indigestion.  There was a little after eating my evening meal and then when I had to move to go to bed but not too bad.  However my energy reserves that day were really low.  I really felt the fatigue hit with even small exertions aside from the essentials. 

By Sunday the nausea was totally gone, my sleep was back to being deep and sound as it has been prevuiosuly with LDN and energy reserves had picked up slightly.  Today (Monday) a week later and the energy reserves have improved a little and I feel I am on the up.

Up – Pottering About

Despite the 4-6 days of side effects from upping my LDN last week I did manage to water my plants and seedlings every day where needed.  I planted some red sunflower seeds too and ordered more pots & compost to pot up my peas I got from the garden centre.

I managed to do a bit of sitting in the garden when the weather was warm and was joined by my cat Flyman.  I even finished reading the first book in the True Blood series and I’m onto book 2.

Today I’ve put my nose to the grind stone to try and get work finished up on the web site illustrations for my current client.  I’ve done a finished drawing & am waiting to hear from the client to see if it needs any changes.

There’s a plumber coming this afternoon to look at out leaking toilet and radiator which need some urgent attention.

I have to get my pea seedlings into pots this week and hopefully get some flowers from the garden centre to attract hoverflies to combat the blackfly problem developing on my beans (and soon my peas I expect).  As a beginner I have to say this gardening stuff is complicated and can be expensive.  It would be much cheaper to buy the veg.  But it is amazing to see it growing and nuture it.  Sadly my outside tomato appears to have blight.  I’m not going to use antifungals – too toxic.  So if it is blight it’s a goner.  I expect my indoor tomato will fall foul of it too.

Meanwhile I need to decide whether to ask my sis-in-law-2b to water my plants once next week or ask my neighbour to do them a few times as well as feed the cat while we are …

Away – on holiday next week!

Me and Paul are taking a 10 day break up to North East England.  Ten days because we’ll take a day and overnight to get up to our self catering cottage in Northumberland – then stop off to see Ashy on the way back down country and then another overnight/day to come home.  It’s a bit too far for me to mnage the journey in one go.  But the pacing of the journey adds to the fun.  Like a mini road trip.

Once at out self catering cottage we’ll be 3 minutes from the beach by foot or wheelchair.  I did have lots of plans but I’ve scaled it back so now the pressure is off and we’ll be having a week by the coast to explore and laze.  To unplug from the internet! Well most of the time 😉

I do find myself worrying about the cat a little.  He can be so clingy and moans so much.  But our neighbours are fab and Mrs Next Door loves Flyman so I expect he’ll get some quality fusses and kisses.  Also they can hear when he is wailing in the garden and we’ll make sure they know it’s usually because he’s hungry (he’s always hungry!).

But yes a week by the seaside with the beautiful Northumberland coastline will be wonderful.  As will getting to hang out with Paul for a whole 10 days plus.  I miss him now he’s out working at an office full time.  And it will do him good to unwind a little.

Her’es hoping that 2.5ml of LDN will be giving me an extra boost by next week too 🙂

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8 Responses to “Up Up and Away”


  1. 1 Amy June 7, 2010 at 5:16 pm

    Hi Rachel,

    I’m an online friend of Ashy’s, and you and I have crossed paths through facebook. So hello!

    It’s really interesting to hear about your experiences with LDN. It’s something i’m wondering whether I should ask my doctor about (I have severe ME and been ill for 19 years). I do hope the LDN helps you – do you feel you’re making progress with it so far?

    How lovely that you’re going to visit Ashy! Have you met before? (not sure if you met online or not). Hope you have a great, relaxing holiday, and enjoy the beach.

    Amy x

    • 2 rachelcreative June 8, 2010 at 10:45 am

      Hi Amy

      Thanks for commenting 🙂

      Yes the LDN has definately been helping. Not a huge or an overnight miracle but has increased my energy reserves, made recovery from exertions easier, given me deep sound (almost refreshing) sleep, improved my cognitive function and therefore communication. That’s on 2ml. Now I’ve upped the dose and I’m not sure if it will agree with me but I’ll keep updating the blog about that.

      Legally GP’s can prescribe LDN off licence but not many are willing to do so. My GP was willing but her practice said no as there’s not enough research/evidence. Unfortunately as this drug is cheap and won’t make the big pharmacuticals rich there’s not a lot willing to invest in the research.

      BUT my GP, being supportive of ME anyway, wrote me a letter saying she was happy for me to try it and I was able to get it prescribed privately by an online medical service and getting the prescriptions through mail order from a Glasgow pharmacy that specialise in LDN. It’s costing me around £20 a month all in.

      LDN doesn’t seem to work for everyone with ME and some don’t tolerate it well. But others seem to get no side effects and some get an instant next day result.

      For me it’s definately worth it and in fact it’s probably cheaper than some of the suppliments I’ve tried or still take!

      I’ve also found D-Ribose really useful for a tiny increase in energy but especially useful for getting me recovered from exertions faster. It’s also helped (I think) with my cognitive function a bit.

      Me and Ashy met online – I forget quite how! But we met briefly a couple of years ago last time me and Paul went up to the North East for a holiday. I’m looking forward to spending a bit more time together this time 🙂 but hope I don’t knacker her out!

      Are we FB friends? I must look you up.

      • 3 ashysheela June 8, 2010 at 12:28 pm

        Rachel and I met on flickr i think (an ME group on there) i started reading her blogs, then those of others and it lead me to start my own and the rest, as they say, is history! A whole new world was opened up to me… Seems like not that long ago you popped in for a cuppa Rachel, almost yesterday! P.S.I don’t care if i get knackered for such an occasion 😉

  2. 4 ashysheela June 7, 2010 at 5:29 pm

    well we are getting the rain this week anyway, that’s a good sign 😉
    Glad to hear about the LDN, hope it keeps giving you a little extra boost when you most need it – on holiday!

  3. 6 cusp June 7, 2010 at 6:41 pm

    Glad the LDN seems to still be helping though the journey through the increases sounds grim.

    Have a great holiday and give Ashy my love :O)


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