Archive for April, 2010

Hello Sunshine

Fennel tea and a (rare) piece of  toast in the garden in the spring sunshine. Aaah lovely.
new favourite mug & toast in the garden by you.

Co-Incidental or Unexpected Side Effects?

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.

And, Also

I can finally say I’m free of the virus and have felt things picking up in the last week.  In fact I think I had a LDN induced session of activity which was used for baking.  I made buckwheat biscuits as I’ve been craving crunchy treats as well as some scones for Growler for a treat.

The LDN makes me feel I can do more.  But I did end up with a thumping headache which lasted around 3 days and stiff neck/shoulders which has persisted for 4 or 5 days and is still lingering.

Which is a good time to mention I’ve ordered a TENS machine to see if I can get some relief when the pain is rising above the amitriptyline buffer.  I did try a dose of beloved co-codamol when my head was in full thump and (due to LDN) it didn’t seem to do anything.  It may have made my head worse but it didn’t help.  To the point I was starting to doubt if I had a batch of co-codamol missing the drugs.

The hot wheat bag is a help but does require frequent re-heating and isn’t always the most practical thing. So yes a TENS machine on order, plus a book on using TENS properly and some skin prep cleanser for the electrodes.  Because if I’m in enough pain to want to use TENS I’m pretty sure I won’t have beautifully cleansed skin on which to plonk the electrodes.

I hope I get along ok with TENS but I’ll only know by trying.  The good thing is it’s not just neck and shoulders I can use it for, but for headaches, menstrual cramps and even IBS apparently.

I am slowly getting bits of work done but it’s going slowly with bigger breaks between than I have been used to. But at least I’m getting some done.

My brother’s fiance is coming tomorrow for what will be her third cleaning visit.  We’re also trying to continue the de-clutter and organising.  The pile of stuff to take to a car boot sale is getting massive and somehow I have to get the oomph to organise her, my brother and Growler to actually go and do a boot sale with it all.

The house hunting for a new rental property is picking up and looking more optimistic.  We had hoped that our landlord may pursue an offer from our lovely neighbours to buy the house we rent and keep us on as tenants.  But our landlord isn’t interested.  He has however, in an attempt to secure us staying a little longer, offered a contribution towards our fuel costs until the windows are replaced.  The windows which he promised to replace before we moved in over 6 and half years ago. 

We’re still waiting to see the cheque he promised however.  Perhaps that promise will be as empty as the others. If we do get it then it’s a bonus.  If not nothing lost.

We’ve revisited our budget and made the decision that we’re not going to find the right house AND spend less than we do now even with more efficient fuel bills.  So we’re prepared to pay as much or a little extra if it means we can live somewhere we love.  As I spend 99% of my time in our home it’s important it’s a place I really want to be.

The relaxing of the budget constraints has opened up more properties.  We don’t need another large house but we can’t get a 2 bedroom place with good sized roos.  Anyway there’s more to look at.  House viewings are tiring, even though they are over so quickly.  But there’s a certain emotional investment – anticipation, disappointment, excitment – in it all which makes it tiring I think.

There’s more to say I think but as there’s lots swirling around my brain my cognitives keep failing me.

Lurching, Lumbering & Surviving

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.
20100402 lichfield train station lens flare

Crazy lens flare and distortion from my mobile phone!

Got my pics taken. Urgh passport photos!

20100402 photo booth pics

A quick stop off by Growler at the supermarket for supplies while I waited in the car.

20100402 waitrose disabed parking

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!


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