Yup, the ******* is back
LOL (**Babe In Total Control of Herself)
It's been a loooong week ... and a bit ...
I've had a visit to both my Gatekeeper and Neurologist in the past week and although they're both amazed at my progress, i'm currently having a battle with my legs
The visit to my Gatekeeper, Dr K was for a top-up of prescriptions and a general gossip session
The visit to my Neurologist, Dr W on the other hand was far more interesting. I still find it hard to believe that he actually talks "to" me not "at" me. He could not believe that I was the same person who had crawled through his door back in May literally ready to pack it all in.
We went through how I was coping with the Endep/Elavil and reviewed Plans A, B and C in case of "emergencies" and was quite happy with each Plan cocktail (again a thankyou to Jumpy for his suggestions!).
I then took him through my progress with the massage and craniosacral therapy sessions and how they were helping to reduce any stress and also assisting in keeping my energy levels up.
He was intrigued when I then went on to mention that i'd taken myself completely OFF all Dairy products. When I explained to him that it was the only way I could lead a relatively "normal" childhood (although it was still far from "normal") and then the few times i've noticed both in my diary and legswise in the past few months when i've had too much Dairy for a day or two my legs would go completely nuts, he agreed that it made sense to stay off dairy. So now i'm back to enjoying soy icecream and soy cheese (definitely an acquired taste!!) and soy milk (yuk - they still haven't improved the taste of that in 20 odd years!).
Next came the grilling about my sleep. I'm averaging 5-6 hours a night, which yes, is a damn good improvement on the 1-3 (if that) I was getting 12 months ago. My "bedtimes" have slowly moved forward from the 3-4am mark and are now at the 11pm-12am mark, which is much more humane. However, for the past week or so, i'm back down to intermittent snatches here and there.
Finally, he beat me to the one question that was burning in my head ... starting a family. We spent a good while discussing this. It is the one thing that's been on my mind for quite a while now and i've been thinking about it and stressing about it more-so in the past couple of weeks - hence the current battle with my legs. Dr W asked me if I knew that I had to pretty much give away all the drugs for the entire 9 months, or more; I said "yes, and that's the part that's scaring me". Instead of switching to another topic like my old Neuro Dr S would have, Dr W acknowledged that yes, it will be a scary time, BUT, he would be right there with me and hubby the whole way. The last thing he wants to do is leave a pregnant patient who has chronic ME & chronic RLS struggling on her own. We talked about what drugs ARE available and he was brutally honest about the list being extremely short ... i.e. paracetamol and not much else. The next topic was the whole hereditary situation. My hubby is as healthy as a horse, and i'm the complete opposite. The ME/RLS gene (and there HAS to be one for three people in each generation on my mothers side to have one, the other or both - to much of a co-inkidink!). A friend of a friend who is a nurse suggested getting a gene test done to see who's genes would be the more dominant, mine or hubby's, but that would be opening a whole 'nother can of worms; so i'm very hesitant about going there.
I'd love to start a family yet i'm scared out of my wits about the thought of going through nine months or more of sheer hell (get me a chainsaw stuff) with my legs only to be so chronically fatigued at the end of it that i'm too exhausted to take care of my own baby. Hubby will be a great support, I know, but there's only so much he can do when he's the main income earner. It's a risk we're just going to have to take, but it really is scaring me.
Hubby suggested trialling a decrease in the drugs to see how I handle it; which is a good idea, so I guess I'm just going to have to put on a brave face, give it a go, and see what happens. If I don't get too bad (touch wood) that still doesn't mean i'm going to cruise through a pregnancy. Yeesh, so much for my positive attitude today huh?!
As for being AWOL from the boards this past week or so, i've picked up two new clients for my bookkeeping business, so i've been busy setting them up and getting them started and answering calls for help from my other clients. One of these days I might get around to doing my own tax return as well lol.
I have also been contacted by the RLS co-ordinator from SDA (Sleep Disorders Australia) in relation to our research project. I sent her an email detailing our project and on a whim, stuck my phone number at the bottom. She rang me at 8am last Wednesday morning, very excited about the project we are doing, particularly at the fact that we were doing it of our own accord! There is a national SDA meeting in Sydney on October 15th where there will be a number of RLS Specialists speaking. I mentioned to her that I would be particularly interested to hear what they say about the diagnosis and treatment of infant and childhood RLS. She pounced on that comment saying that she had asked that question at a recent meeting she had with a group of specialists, only to be greeted with deadpan faces and silence. So, it's something that really needs to be looked at, particularly if we are going to be able to offer any advice to our members like Grace. She also asked me more about my medical history and was very intrigued. She has been given enough funding to fly one RLS representative from each State to the meeting, but having talked to me (for nearly an hour) she had started to work on a plan to see if she could get me down to the meeting as well. So, I think i've just been volunteered for an Australian RLS committee
, which, for someone who likes to stay in the background of projects, is a little daunting, but hey, if I can get out there and help get some infant/childhood RLS researches underway, what the heck, i'm in!!
So that's been my week and a bit, in slightly more than a nutshell lol.
My legs have been bugging me since I woke this morning and i'd put them at about a rating 2 on my scale of 0-6; so i think i'll go and find something to do that involves a bit of walking .... hmmm, the house needs a bit of a clean up, so i'll start with that.
Ooooo, I nearly forgot! Jumpy, I tested out that Russian butter ball theory on Saturday nite - you were right on the mark with that one, and that's all i'm going to say, or you'll be calling me a slosh again
Take care all!
very good results for someone with my lack of immune system!
