Sunday, August 27, 2006

Stress? nah.. I can handle anything me.

..Or not.

I can get myself into daft situations but just lately I've done some things that, as my best mate said, are totally out of character for me.
Dumb, stupid things that have the usual consequences dumb stupid things do.
This has resulted in me feeling incredibly crap mentally - and a knock on effect of physical nastiness kicking in too.
I've spent the last few days battling fierce headaches and odd stomach mutterings - not to mention the usual cfs aches, today it all came to a head with a complete inability to get out of bed due to dizzyness for a good 4 hours or so. I managed to move to the living room and basically mainlined water, fruit and crackers all day, that and painkillers.
I'm hoping it's the worst and tomorrow I start getting back to what passes for normal these days, the dizzyness is the worst thing to deal with and I'm so glad it's rare it happens.

Guess I should just be more careful and actually try and think through my actions and what I say instead of going with the thoughtless impulse.
*sigh*
I just wish I was fit enough to work, it gets very frustrating having no answer for the in-laws when they tell me I should be getting a job and not working for free.
I wouldn't mind if I could call my feeble attempts at web design work, but it takes me weeks to do what would have once taken me days - mainly because I'm easily distracted and too tired to concentrate on any one thing for long, I make silly mistakes which you cannot get away with when dealing with code..
It's just really getting to me!

Having work comments made by his family members makes me feel as though they think I'm living off him.
I'm not, I may not have seen a credit balance in my account for the last 3 years but my overdraft takes care of everything and I don't ask him for a thing! I don't ask anybody, I never have.

I'm just sick of it - the fact that I would own my own home by now if it were not for this illness just makes it worse, I was all set to have a mortgage when this kicked in, it scuppered all my financial plans and I just can't see an end in sight to that.
Even if I go the permitted work route it means I lose my housing benefits which would leave me even worse off than I am now once you figure in the food and travel costs a job would entail - not to mention the overriding fear I have of a relapse, I just can't shake that fear, it colours everything.

*sigh*

At least financial troubles are normal, everyone has 'em and they pass.. Eventually.
I'll have an income again one day - and it won't have the word 'benefit' attached to it!

Sunday, August 06, 2006

Open mouth, change foot.

I hate that feeling when you've upset someone where it wasn't intended, I get really worked up by things like that and end up shutting off from the person and situation completely to stop myself thinking about it.

It's happened several times to me so I guess that makes me quite a thoughtless person - not something I'd have described from my self image. Sadly we rarely see ourselves as others do, I would not have guessed I can come across as arrogant either, but my best friend assures me that sometimes I do.
Everyone should have a best friend who can tell you harsh truths about yourself, it keeps you grounded.

For those of you interested in such things.. Here's the response Prof Puri has sent in reply to those VegEPA concerns:

The allegation that my published work is not authentic was so absurd that I did not feel it warranted a reply at the time. The Hammersmith Hospitals NHS Trust is unlikely to know the details, as the studies were not carried out using NHS resources. I suggest that this person or their consultant read the original papers and then tell me which data they think have been invented. If I have time, I could then personally show them the original data. If they are querying the neurospectroscopy study, I probably still have access to the original spectra from the ME patients and from the normal control subjects. If they query the beneficial structural MRI changes upon taking fatty acids, then I have access to the original brain scan data – fortunately, electronically ‘stamped’ with the acquisition dates.

It is a very serious matter to make such an allegation. A fellow medical consultant, in particular, should be very careful before alleging fraud. Also, these allegations are not just about me but would necessarily also have to include my published co-authors, who, like me, declared that the work described in each paper was carried out by us.


Methinks I opened a can of worms unintentionally there, and a feeling of impending doom crashed over me as I read it, I did not intend to cause any trouble for anyone when I voiced my concerns to a knowledgable acquaintance (who then emailed prof puri about them and sent me this response) sadly - it's looking as though that may be the case *sigh* I think I should just keep my mouth shut in future - though as I've said that many times in the past it's unlikely to happen in the future either..

I'm still taking the VegEPA's myself but I'ev fallen off the sugar wagon again and succumbed completely to the old boom and bust routine. That's the problem with doing something that involves creativity, you can't stop when the juices are flowing or you lose it.. Perhaps getting back into music was not my best plan of action at this stage of things *sigh*