Journal

Quick note to say hi to everyone.

I was drawn here by a message sent from another mum in my position who lives very close. She wants to know about LP, so I'll contact her and hopefully we can meet up.

Rose lies in bed as I type, groaning in her sleep. She's exhausted. Last week term began and although she will only attend school for German classes and her dad can ferry her, this and the one session with a home tutor was enough to deplete her reserves. I'll give it a couple of weeks, but I feel she may be better off with solely home tutoring. It's all such a fine balance. In truth an element in the decision to have her attend school at all was to keep the bloody drs off our back... 'importance of socialisation'... BLAH BLAH BLAH..... 

I was contacted recently via a facebook LP discussion group by a woman who it turned out had been misdiagnosed and actually had hypothyroidism, not me/cfs, so I've been looking into that angle. So much of all the medical research I delve into takes me round full-circle - chicken and egg scenario... urgh

went back to Barcelona - oh I love that city, but in August it was just too hot - more siesta than fiesta! 

if anyone wants to find me on facebook btw - the name is emma spiller.

better wake rose.

Goodness, I hadn't realised just how long my absence had been!

Some of you I chat to occassionally on facebook, others I have cruelly abandoned!

I needed a healthy break from DS - setting up my facebook account meant I could reach out to old friends from the world that existed before ME/CFS dominated our lives. And it's been so good for me. I'm off the anti-depressants and Sam and I are in therapy. I've no idea where it will lead us - we may stay together, we may split, but one thing we do want is to be there for Rose and support her as best we can.

I had my first holiday in 23 years with no partner or kids in tow! A dear friend I hadn't seen in 23 years contacted me on facebook and ended up buying me a plane ticket to come stay with him for a week in Barcelona. He treated me like a princess, waiting on me hand and foot, meals out every evening. He let me cry, he let me laugh. I came home a stronger, more determined woman.

As for my beautiful Rose...

She lost her school place and was left in an accademic wilderness for 7 months thanks to the appauling local Ed dept...

Eventually they allocated her a nice, but not particularly skilled tutor. Waste of time. So I pushed hard and finally they got her a place at her local girls comp, which is handy - only takes 5 mins in the car. Her attendance is sparodic though and maintaining a place there is tricky. If all we had to deal with was focusing on Rose's health it would be so much simpler. Instead there is this constant pressure from the authorities and the dreadful daily routine of - will-she-make-it-into-school-today  and how-much-should-I-push-her-to-go-in...

The Lightning Process enabled Rose to eliminate her CDH (Chronic Daily Headache) and the large part the  fatigue, acheing limbs, brainfog symptoms are gone too.

What we are left with primarilly is the debilitating abdominal pain.

My new pet-theory is this....

ME/CFS develops when an individual has a specific trigger infection/allergy build up etc.

Now that Rose has been so successful in eliminating many of theME/CFS symptoms,what she is left with is the initial trigger.

It is my guess that this could be a form of bacterial/viral infection of the gut.

This in turn has comprimised her spleen thus impacting on her immune system.

So....

my next step is to hassle the NHS into giving her a referral to the Breakspear Hospital, a private hospital that dose far more extensive testing and implements treatments not available on the NHS.

As you Brits reading this will know, the only thing on offer (if you're lucky!) on the NHS is CBT, GET, PACE... in other words f***-all.

The funding isn't there unless you go to the private sector. Unable to work because I have to care for Rose, 4 bank overdrafts, owing money to relatives... I don't have the funds to pay for Breakspear - so wish me luck in securing a referral.

Check the place out for yourselves

http://www.breakspearmedical.com/files/chronic.html

there's a link on this page to a more detailed account of investigation and treatment.

In herself Rose is doing ok. She gets very low, but never ceases to impress me by her strength and determination. The lonliness, the issolation and the lack of understanding are as crippling as the ME/CFS itself.

I'll go have a quick root-around and see what you guys are all up to.

much love to all 

emma x

rose is still unwell. Her GP reckons that the norovirus that she's had has now started attacking her muscles and that's what is causing the back pain. I'm gonna bring her to my osteopath this afternoon and see if he can give her some relief.

I'm in a mess head-wise. All the joy and optimism I felt has drained away. I keep telling myself - "she's so much better, the constant headache is gone!" ... but she's still stuck at home and in pain. I can't face contacting the school - which is stupid I know, but I simply can't face stuff. I forgot my appointment with my counsellor last week, reschedualed for yesterday, and promptly forgot that too. Like I said - my head is totally screwed up. All I want to do is crawl under my duvet. Tired of being strong. Tired of carrying all this on my shoulders. Sorry. Just need to say this.