LDN Day 58 – I’m Back to 2ml & In Other News

It seems my 2nd attempt to increase my LDN to 3ml resulted in me feeling pretty awful again.

I increased from 2.5ml to 3ml last Sunday (Day 50).

In the next week:

  • my pain (particularly neck, shoulders, face/jaw, glands) increased day by day
  • I got a bad pre-migraine head for the first time in months and that has hung around for a week
  • my IBS flared, I had stomach cramp & a couple of espisodes of exploding bum, meanwhile alternating with my constipation getting worse and by the end of the week I had some nauseau coming on

On Saturday (Day 56) my pain was “argh”. I reduced the dose back to 2ml on Saturday evening.

On Sunday (Day 57) my pain was “urgh”, my IBS was a little better. Today, Monday (Day 58) my pain is a low “derrr”.

It seems to be settling, hopefully, although I’m not clear of the pain just yet. The 3ml does seem to now agree with me too well.  So my rough plan is to take a longer term view and stick with 2ml for a while.  Maybe look at slowly increasing the dosage but not to increase whilst I have any side effects with the current dose.

It’s certainly not easy finding your optimal dose.

I’m hoping the 2ml will help me be a little more stable as I have work (art) I need to do.  I have a painting to finish, a new piece of work on a logo for a new client, some cards to make for friends/family and I want to make some Valentines cards to sell if I haven’t left it too late.

Plus make some birthday cards, wedding cards and so on to sell.  Try and keep a little trickle of income going as I still haven’t had a decision from DLA and so have been relying on my art sales to fund my suppliments, medication and so on since October.

In 2 weeks I am going to my cousin’s birthday celebration all the way up in Cumbria (about 3.5 hours from here).  They are having a  ceilidh and whilst I won’t be dancing it will be nice to meet up with family. 

I also have a dentist appointment the week before – a routine checkup but later than usual as my wonderful dentist has been on maternity leave.  My problem tooth has a chip in it which is worrying as we’re overdue and last time she filled it she said it might need root canal work if this fill didn’t work. Eeek.

Then I have a doctors appointment with My Lovely GP the Monday morning after our weekend in Cumbria to ask about treatment for something I’m not going to blog about right now, to see if she will give my Celevac on prescription as I now use it everyday with my IBS and to update her on LDN.

So you see I could really use a couple of weeks of not feeling as grotty as I have been with this 3ml of LDN!

In other news my clutter busting angel is to become my angel sister-in-law in August! She and my brother got engaged a few weeks ago and it’s all very exciting.  To celebrate at out last clutter busting session she put my wedding dress into it’s special storage box (just three and a half years after I had first intended to do it).

We are still house hunting for a new rental place.  Some of the pressure is off now we have spent the worst of the winter (fuel bill wise) in this draft energy innefficient house. Not only that but probably the worst winter we’ve ever had weather wise since living here! So having swallowed the heating bill the urgency to move is less than it was.  But we do still want to go.  The next problem is that the garden will start to grow and I can’t afford to pay anyone to come and tame it this year.  If I ever get my DLA the plan is to offer my sister in law a bit of paid work doing cleaning and gardening but I’d rather be focusing energy on a new garden.

We’ve seen a few places but none have been right.  House hunting is more difficult now not just because it’s so knackering for me but because I’m looking for a place to spend 98% of my time in.  Finding a house that is nice but a bit dark, or a bit claustrophobic, or with not much of a view of anything, is suddenly more problematic to me.  I swear I am not being super fussy!  So many of these places have such tiny bedrooms or weird layout or dodgey looking renovations or are really expensive.

Hopefully the right place will come along at the right time.  Seeing as how there’s still a lot of clutter and still a massive car boot stash of stuff to sell it’s probably a good job we didn’t see somewhere before Christmas.  It would have a lot of hard work.

There’s some ME/CFS stuff floating around for me this week which may or may not result in some wobbliness.  This is not going to be helped by probably being hormonal this week too.  But I don’t want to go into the details here and now.  Needless to say it’s the usual upset & head spinning from the quacks taking advantage of ME/CFS being in the news recently.  Whether I will keep a straight head or not I don’t know.  I did cry (a lot) at the end of a heart wrenching drama last night so I am guessing there will be a mini crisis this week at some point.  Oh well.  Hopefully there won’t be a shed load of pain to put into the mix too.

LDN Diary

6 Dec 2009 – Day 1: Begin 3ml LDN in morning Dozey, v bad brain fog, IBS/tummy problems.

9 Dec 2009 – Day 4: Switch to night time dosing of 3ml LDN Side effects lessening by Day 9 but still some brain fog, tiredness/weariness, dry mouth, blurred vision and gassy tummy. By day 14 still tired/sleepy, some brain fog. By day 18 concluded energy reserves very low and recovery not as good.

22 Dec 2009 – Day 18:  Reduce to 2ml LDN nightly Perky in the 1st week. Settled & optimisitic, ticking along at Day 30. Then by mid January wondering if lacklustre & unproductive feeling means the dose needs increasing (or is it just because of January?)

15 Jan 2010 – Day 41: Dose up to 2.5ml Slightly more tired but hard to tell as it’s January

24 Jan 2010 – Day 50: Dose up to 3ml Pain, migraine & IBS increase over the next week

30 Jan 2010 – Day 56: Reduce to 2ml nightly Extra pain begins to decrease first couple of days.


12 Responses to “LDN Day 58 – I’m Back to 2ml & In Other News”

  1. 1 ninacolors February 1, 2010 at 3:55 pm

    Not now, for sure – but are you thinking of trying 2.5 ml? What a lot goes on in our lives, even when we FEEL we’re not a part of it — we are!!

    • 2 rachelcreative February 1, 2010 at 4:23 pm

      Well I think maybe I should give 2ml a month. I did feel it was helping to begin with but then got a bit lacklustre but that may have been the post Christmas/cold weather rather than the 2ml.

      If 2ml seems to plateau I may then up to 2.5ml but stick with that longer than a couple of weeks.

      I read someone who was on like 2.8ml but my measuring syringe only goes in .5ml markings.

      Yer I really should try blogging about more than just LDN 🙂

  2. 3 Jozephine February 1, 2010 at 4:52 pm

    You made me laugh, which is no mean feat at the moment, with your exploding bum and your pain scale.

    I’m sending you some good moving luck (whoosh, there it goes). It worked well for me. I feel like shite at the moment, but I feel like shite in a lovely house with a good view and a nice feel to it. The thing is not to say yes to something you are not sure about, which you are not doing. And to think opportunistically. Don’t use those amalgamated agents’ sites like zoopla as it takes a few days for new properties to show up, but use the website for each agent and check daily. That’s if you are going through an agent. We did for expedience’s sake but had to swallow the fee.

    I’ve had success in the past with a postcard in windows and word of mouth campaign.

    As for getting rid of rubbish – Freecycle. It’s brill. People actually come to your house and take it away and are grateful.

    All the best xx

  3. 4 Jozephine February 1, 2010 at 4:53 pm

    Sorry – I may be teaching my grandma how to suck eggs with the moving advice. Just take the good luck and ignore the advice. That’s more advice. Noooooo.

    • 5 rachelcreative February 2, 2010 at 10:02 am

      Thanks for the advice. Really. Growler is doing the leg work, keeping a close eye on listings & fixing up viewings.

      We’re looking to swallow the fee too but there’s not much about privately round these parts.

      The flip side is my dad trying to let his flat and the pains he has advertising it and checking out prospective tenants. If only it were in the right town for us!

      My sis-in-law-to-be is helping me pile the reasonable clutter into a mountain which she, my brother and Growler will (at some point) car boot. The pennies will come in handy. Anything left will be charity shop or freecycled.

      Thanks for the good luck and the reassurance.

  4. 6 ashysheela February 1, 2010 at 5:45 pm

    well, it’s good to get such a thorough update, but sorry to hear things are a) a bit crapola and b) too busy for dealing with that (not that there is ever a good time).

    I hope you feel better for the big cry, was it Mo? We watched that. Going to watch the Panorama tonight abut the Gilderdale case, which will be very hard to do (especially as i have not had proper nap today and feel a bit spacey after a dentist trip) but i want to see how they cover the issues and present the illness… i think it is harder for us to watch/face these things than an outsider, it’s a bit close for comfort.

    Think your attitude to the house is so right, it has to be nice enough to be in all the time and to make it worth the effort of moving.

    Really hoping the physical pain will ease off and the emotional wobbles will not be as bad as predicted… if you want to offload about the other things you have not gone into, email me anytime.

    • 7 rachelcreative February 2, 2010 at 10:05 am

      Yer it was Mo. It was the bit when they were in bed together & she wet the bed & slurred I love you. I totally lost it.

      I recorded the Gilderdale Panorama. I couldn’t decide if I wanted to watch it or not. I don’t think I’m up to it right now. It is all a bit too close for comfort.

      Thanks Katie. I had a cry last night too out of the blue so I think my hormones are playing up as I type! At least the pain is a bit better today.

      • 8 ashysheela February 2, 2010 at 11:09 am

        yeah, that bit almost got me too, very moving. He was so sweet with her: take my side…

        I watched panorama, it is upsetting/emotional of course, especially listening to Kay G talking, but is focussing on the law and if it should be changed. Worth watching when you feel up to it. Much of the what Kay said i had read in quotations already so i found it ok to cope with, or it made it easier to watch. An intense half hour though! No easy answers…

        Hope the next couple of days see more improvement for you. I think crying changes something chemically in our brains, it really is good to let it out (hope it stops soon though as it can be a bit worrying also!)

  5. 9 Sue February 2, 2010 at 12:09 am

    Don’t worry about what is considered the “optimal dose” for LDN – people with CFS rarely fit the usual standards! You’re doing the right thing, testing to see which dose works best for you. I’ve been talking to another woman with CFS who also felt better on 2 ml but worse on 3 ml. 2 ml may end up being the optimal dose for you. If it helps, that’s great!

    Good luck getting through all your upcoming commitments!


    • 10 rachelcreative February 2, 2010 at 10:09 am

      Thanks Sue. I have to keep reminding myself that more medicine doesn’t mean more improvement. It’s all relative.

      I feel a hell of a lot better today and I’m happy to be on 2ml again. I’ll stick with it a while but I know sooner or later I’ll not be able to remember clearly if how I feel is an improvement and want to try 2.5ml just to see.

      It’s easy today to know 2ml is better than 3ml because I have something recent to compare to. If you know what I mean. I have to settle myself to a long term approach. I read someone on the LDN database say it took 9 months before they started to see a noticeable improvement.

      Thanks again.

  6. 11 Rachel M February 2, 2010 at 7:39 am

    It’s nice to hear how you are up to, even though you are struggling. And I hope things will get easier and your pains will go away soon.

    Good luck on house hunting. I think finding the right place involves destiny. I’m sure you will know when you come across with the right house for you. In a meantime, you have a place you feel reasonably happy, so I would wait for the destiny moment. 😉

    Your social calendar makes my head spin. I hope you will manage to save up enough energy and strength for each occasion and have the optimal joy. I hope you will take video camera with you and share ceilidh with us.

    And I hope the meeting with your lovely GP will give you good outcome. I’m very curious to know what it is, but I respect your privacy.

    • 12 rachelcreative February 2, 2010 at 10:16 am

      Destiny eh? So it will come in it’s own good time. I do love this house we are in now and we have brilliant neighbours. But there are the nagging problems. So hopefully the right place will come just before the garden is a total jungle and just after the clutter is sorted 🙂

      I do feel fortunate to now be able to schedule more than one Thing (exertion) in a single week most of the time. It used to be one Thing every 3 weeks. So I know I have improved over the last couple of years. But my social calendar in the last 2 weeks has been much less exciting 🙂

      The unamed thing with my doc is a lady problem. Not the one that stings when you wee, the other common one. I don’t want to say the name because I don’t want people coming to my blog telling me that is the whole reason I am ill – that’s it’s not ME/CFS it’s this lady problem (rolls eyes). I’ve taken over the counter medication but it keeps coming back so I need to ask the doc about it. Then she can advise me if I need to take something perhaps for the stronger strain.

      I am prepared for a lecture about hygeine off the doc and off the dentist. See I might seem to have a social calander but ordinary days see practical self care go amiss!

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