Archive for April, 2010
So a few odd things have been happening since I started taking LDN at the beginning of December. These things could be a co-incidence or they could be unexpected side effects that I haven’t heard anyone mention before.
My libido has returned. The higher the dose the stronger it is. Despite a stronger dose giving me unpleasant side effects like bringing back all my ME/CFS symptoms it also seemed to boost my sex drive. On 2ml it’s back but not overwhelmingly strong – which is good because I’m too knackered to act on it.
My creative flow has become reduced. My creativity is still there but I’m having trouble accessing it and mainly I’m having a problem with doing the work. It’s hard to describe – being something like a writer’s block even though I have a flow if I can get started. It’s frustrating because I have lots I want to do and work that needs to be done for clients. But somehow I don’t feel ready to get down to it until late evening when it’s too late and I’m due my next LDN dose. It’s odd.
The LDN seems to give me a boost of energy reserves which I then use to do things but my body can’t actually cope with the exertion. I get a spring in my step and have the energy to, for instance, do some baking. it’s amazing. But in the following couple of days I am worn out, wiped and feel grotty. Even now when I have a crushing tiredness and feel pretty grotty from exertions last week compounded by weekend things I still have the sense in the background that I can get up and do something.
I think perhaps I need to use that increased energy reserve to maybe heal? Perhaps the boost is meant for doing but for repairing. And as I continue with the LDN and it continues to adjust the balance of t-cells and whatnot the energy can be used for exertion and recovery too.
All of this does however make it difficult to say whether LDN is helping or not. It is doing something but the loss of connection with my creative flow is a great sadness to me. The boost of my libido is fun and the feeling of having some energy to use is great – but my body and other symptoms are not in tune with that.
I do find myself being able to think about doing active things in the future with a real sense of hope. That it’s possible somehow. A dream but a possible dream.
Although I’ve been taking LDN since December this is only week 6 of my dose being settled and stable. So it’s still early days.
I’ve just started using Patients Like Me to keep track of taking LDN and for the first time have found a way of rating my condition that seems like it might just work for me long term to track my condition. There’s some annoying things about how the site works but I’m getting on with it pretty well. If you sign up let me know and I’ll let you know my username so we can subscribe to each other’s profiles.
I’ve also bought a TENS machine to try and help with pain now that co-codamol no longer seems to work (since LDN). Apparently you can take co-codamol at least 4 hrs after and 4hrs before you take LDN as both are only supposed to stay in your system for 4 hours. But for me taking co-codamol was like I hadn’t taken anything at all. It was most odd. I have read reports from others that taking narcotic based pain killers had a reaction with the LDN despite the claims it only stays in the system 4 hours.
Anyway I am experimenting with my TENS. It worked brilliantly for sciatic pain but not so well for the neck and shoulder pain I get which is what I wanted it primarily for. I’ll keep trying.
More effective for my neck and shoulders has been the Homedics Shiatsu Massage Cushion I bought and have been using for 20 minutes daily for the past 5 days. It’s giving me relief and I can notive a difference already. I plan to keep using it daily for a few weeks. What’s good is not only is it a quiet, relaxing and lovely 20 minutes every day but it’s easing up the pain so I can do my phsyio exercises for my neck.
I’ve never been a fan of hands on massage except from a lover. I’m totally uncomfortable with it in fact. But the massage cushion had good reviews and is the closest thing I’m going to get. So far I’m extremely happy with it and I’m glad I made the £37 investment.
Finally, in my quest for pain control, I bought a Pain Gone pen. You put it where it hurts, click the end of the pen a load of times and it sends small electric impulses. Somehow – it seems to work. Not on terrible pain, not for a long period, but it does seem to lift the pain. Really quite strange. I’ve not used it extensively so I’m still not convinced but I’ll keep trying it out. I bought a mini version rather than pay full whack in case it didn’t do anything.
Meanwhile I have to hope to get the oomph I need to do the art work I know I can do if I can just find a way to move the pen and click into action.
I’m still struggling with the lingering effects of this cold/virus/bug. I’ve been in the can’t-quite-shake-it-off stage for 2 weeks now I think. Sigh.
Managed to get a bit of work done but that, combined possibly with the LDN leaving me a bit low energy, is impacting on my ability to DO.
Good news is that now I have my DLA award in place I can afford to pay my brother’s fiance (the clutter busting angel) to do a couple of hours cleaning each week. She did her first session this week and she’s made a big difference to a lot of grime and dirt. I expect it will take a few weeks before she’s gotten throught the backlog and is able to get into a routine where she can keep on top of things. But it’s already loads better.
It’s Easter weekend, meaning a long weekend off work for Growler. Seeing as he is still struggling to shake off The Bug too the plan is for lots of lazing and chocolate.
I did manage to implement my plan to get my photos taken for my driving licence renewal. Than god they gve me nearly 2 months to organise myself!
Yesterday I had an assisted bath so today I could look half presentable.
Growler drove me to the train station where they have a photo booth.
Crazy lens flare and distortion from my mobile phone!
Got my pics taken. Urgh passport photos!
A quick stop off by Growler at the supermarket for supplies while I waited in the car.
Then we drove back past a couple of houses which are up for rent – one we are waiting to do a viewing on and the other we’re not sure about as the area is not so great. Nice little house but still not sure about the area having driven around a bit.
Nice to be out and have a chance of view. And did I mention the sun came out? Lovely.
Now I’m knackered and hoping to have a need to move from the sofa for most of the rest of today!