Failure, giving in yet again? Nar, spin it like a politician, it is a good thing because....

So, Paige has just turned one last week & I'm still struggling to care for her by myself whilst my wife works 3x 4hr shifts on Monday, Tuesday & Friday (my mother takes her for Thursday & wifey has Wednesdays off).


I'm struggling to cook & eat well, can't get anything done around the house, can't keep up with my beer for mowing deal & have completely dropped off the map as far as the little social life I had left is concerned.

So, Paige is going into daycare as of next week (well to try it anyway).  We have selected a family day care group near home that also happens to look after wifey's sisters sons, so Paige will be able to play with her cousins & develop some more independence & social skills in a much smaller group than the battery hen style chain daycare centers - plus my disability pension makes it super cheap too!

The positive is this will leave me time to cook decent meals, look after my fish so they don't die, get on top of the beer brewing (in exchange for mowing, I can't tolerate alcohol at all anymore :( ) & look at all those many projects I have such as energy efficient LED lighting for the fish tanks to knock 2/3rd of the lighting bill out as power bills are getting ridiculous.  I might even get around to doing something on the Datto *shudders*

But it still feels like a failure, I was supposed to be a stay at home dad but much like trying to push myself to work it is simply out of my ability to sustain it.  So spin it like a politician, take the best things out of a crap situation & focus on them & hope no-one notices the bad things (ok, hope I don't, wait I've already listed some of them, doh!)

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Happy Birthday to me & Happy 8mths to Paige

As it says up there, today is my birthday & also the day that Paige becomes 8 months old.

I haven't made a blog post for a while so a bit of an update on how things are going...

Paige is crawling really well & *almost* walking, very exciting!

I on the other hand seem to be deteriorating & am currently almost house bound again. Today was the first day I looked after Paige all by myself while my wife went to work (previously the grandmas have been babysitting). I lasted 3 1/2 hrs before I could no longer lift her & she was asleep for about 1/2 of that time. I'm barely able to look after myself & it appears my fears that I wouldn't be able to look after bub are coming true.

It sucks, I was pretty stable, even improving before bub was born - since with all the extra baby related sleep deprivation & catching a few bugs that were going around I've literally gone backward to about where I was maybe 3.5-4yrs ago in the space of the last 8 months. I'm on more painkillers & stuff than ever before but I'm still sliding down.

It is very hard to stay positive, I am trying to focus on what I can do & not what I can't but when the things on the first list keeps leaving it for the 2nd list I have to admit it is a little disheartening.

Signing off for now, don't even know if anyone reads this anyway - it ain't like I post anywhere near enough to make it interesting.

Awake for 35hrs straight on Paige's 1/2 Birthday & felt good? WTF?

I've been having a lot of (worse) sleep initiating issues of late, some pain related some anxiety related, my Doc & I are wondering if the pain meds are making the anxiety worse or just letting it some to the surface as the worst/most noticeable symptom.

So anyway, the other night (Tuesday) I couldn't get to sleep, at all! I tried all my usual rituals, hot drinks, pills, audiobooks on low volume etc but eventually thought "stuff this" and sat in the lounge & figured out some of the final quirks on my Mythbuntu server. (Linux Digital TV recorder/tuner/media centre) Anyway, I eventually saw the sun come up & was feeling bizarrely pretty good!! I managed to wash the car, feed the fish (and catch some out to take to the aquarium shop) & feed the dogs & all sorts of things I either usually don't do until I get up after about 11am or not at all! (in the case of washing the car, maybe I manage it once every 2 months, the paint is rooted & the bonnet is rusting but I digress....)

Wednesday being Paige's 1/2 birthday (6mths old, should have posted yesterday) we were taking her to the clinic for the midwives/nurses to do a check-up on her so we'd have an exact length/height measurement to put on her wall chart for 6mths. I actually felt up to driving without having slept! I admit I got up midday Tuesday so I wasn't up for 24hrs yet at that stage but still, weirdly felt good! I didn't drive of course, was worried about micro-sleeps. Anyway, clinic goes well, I get a bit of sensory overload from all the mums chatting & babies doing what babies do, but I coped ok.

By this point I was just passing the 24hrs awake point.

We then checked the post office box & went to the aquarium where I sell my fish for store credit to discuss ordering a new custom filter I'd designed to be less maintenance intensive & drop off the fish (That I caught & put their aerated transport esky at about 6am!).

Then we went to a shopping centre & bought some clothes for Paige & her cousins, again a very sensory overloading experience but I'd taken my Rivotril/clonazepam after the clinic so even though it was louder & brighter it was actually easier.

Then home & I cooked some home made pizza including the bases from scratch, it was about 30hrs at this point (6pm) & I still felt ok?!?!

So we had dinner & got Paige to bed, now is when I started spacing out & things were getting funky, approx 32hrs (8pm). Was getting tunnel vision & other visual freaky stuff, but it passed (this is normal for anyone with sleep deprivation, check out the SBS 2 part documentary "Dead Tired" if interested in the physiological effects of sleep deprevation). I was feeling a little better but not sleepy yet (people with ME/CFS know the subtle but important difference between feeling "tired" & feeling "sleepy") set the Mythbox to record some TV for later & we watched the previously recorded NCIS ep, yay it worked!!

Went to bed with usual meds & ritual, fell asleep listening to audio books on my Mapple myPod (well, generic MP3 player) some time after 11pm.

Sonja woke me up to say goodbye to her & Paige when she left for work at around 10am (my mum is babysitting) but I felt like death warmed up (well sweaty actually, this is North Queensland) so apart from visiting the loo I crashed back into unconsciousness until 12:30pm, so I ended up sleeping for about 13 1/2 hrs.

Today I still feel alright, bit more pain than normal but Tramadol helps blunt that, otherwise still quite alright - a massive turn around from this time last week - but after that much sleep deprivation?

This shit just doesn't make sense. *shakes head*

I haven't posted an update in forever so I'll cross post something....

I've cut & pasted this from a car forum where I haven't really explained ME/CFS properly hence being a bit vague about my diagnosis & stuff - they have a thread for members to support each other through tough times & I posted this into it.

Also of note, this forum allows any language at all & some may be offended by the language I've used below so if you are, don't say you weren't warned.....

So, I've not been too crash hot lately so thought I'd post in here just to sort shit out in my own head more than anything....

So I've been battling a chronic illness for somewhere between 5 & 6 years now, I *thought* I had a handle on it & my condition was stabalising through better medications & just learning to deal with it better & live within the limits. Basically unmedicated equaled homebound, able to look after myself but not much else, only sporadically safe to drive, trouble concentrating enough to hold a normal conversation - medicated equaled being able to get out into the world & appear normal for short periods with proper preparation & recovery time. It is kind of hard to explain unless you've been through it, I'm simplifying it so this doesn't end up a Jmac length post.

Anyway the whole time I've had a lot of male identity issues - not being able to work in any meaningful or consistent way, not being able to mow the lawn, stuff that you take for granted before your health is in the shitter. Basically my whole sense of self was tied up in my now dead career & my fucking around with cars & stuff.

Anyway, I had built up a fair bit of consistency & predictability in what is a notoriously unpredictable condition - basically I thought I was slowly getting better but not in any way close to cured or anything. So with me hitting 30 & the wife 28 we figured we'd try starting a family & I'd be a stay at home dad & try to start an at home PC repair business when bub is older.

I've mentioned we went through IVF in other threads, that was due to probs on my end so that felt like another hit to the male ego - at least I'm not shooting total blanks tho so ICSI solved the problem. Though of course I had to watch my wife go through all the pain & stuff involved with IVF (ovarian hyper-stimulation hurts like a mofo apparently, she had a week in hospital on pethidine because of it waiting for the bleed & ovary swelling 3x larger than normal to sort itself out) all the while with it in the back of my mind that it was all my fault (OK, not really rational, it ain't like I'd irradiated my nuts or something to cause it on purpose or anything, but it is how I feel).

So, plan to be a stay at home dad & aim for that & work towards being able to do that. Well bub is 6 month old on Wednesday & the wife was supposed to be going back to work soon but all the sleepless nights & shit have exacerbated by condition & taken it way backwards - I'm in shitloads of pain again, the previously sorted sleep disturbance is back with a vengeance regardless of meds & extra pain killers & when I finally get to sleep it lasts for like 12 fucking hours straight & then I'm a fucking useless zombie all day anyway.

Wife had put her return back to work off for another month anyway cause she wanted more time off, now she's taken another month because I'm not ready yet, but it seems I'll never be fucking ready & should never have reproduced & my wife would have been better off with me splattering myself against a tree or something & her marrying some cunt who can provide for her & not shoot fucking blanks - basically I feel like a huge useless fucking piece of shit burden on her & now on my daughter too.

Don't get me wrong, I'm not suicidal as such, I won't leave my daughter without a dad - when I look at her smile everything is OK. But it seems I'm a shithouse dad anyway (wife is still doing almost everything) so perhaps if I was to die via some accident the super payout clearing the mortgage would be more useful than I am as a 1/2 arsed babysitter?

I am seeing someone about this but "chemical help" is a bit problematic considering the cocktail I'm taking to be semi-functional enough to be able to drive myself to the doctors in the first place! GP & Psychologist both think I'm coping really well considering so it probably isn't a chemical imbalance thing anyway & is more a normal reaction to having a fucked life thing - most of the time I'm fine, my mood just correlates with the intensity of my pain & stuff & lately it is all worse, hence mood follows it into the shitter.

It feels like every step I gradually crawl forward over the course of 6-12mths seems to be countered by something causing two very rapid steps back within a fortnight or so.

Basically all my efforts seems futile & it is frustrating the hell out of me.

/pathetic emo mopey shit rant

To exercise or not to exercise, my not quite Shakespearian dilemma...

So I've noticed of late that some of my symptoms are getting more intense after my weekly indoor cricket games - the most heavily affected are the burning lactic acid pain in my legs & sleep disturbance via the completely wired yet tired, no exhausted feeling.

Now I'm sure normal healthy people would be thinking, so what? Pain is normal after exercise & it feels good - feel the burn! Likewise you get a euphoric feeling after exercise & the later exhaustion leads to deeper, better sleep, right? Well for ME/CFS, wrong - dead wrong.

Due to abnormal aerobic metabolism, we (people with ME or CFS, choose your term depending on your dodgy diagnosis, geographical location, whim of your doctor or personal preference, but that is another rant...) produce lactic acid most of the time, even at rest, so imagine how that ends up when you stress the muscles a little? Also the euphoric feeling is over-amplified & becomes sensory overload where noise & light are painful. As for the exhaustion, we get that but due to a combination of the pain & our brains being over-stimulated & not shutting down we simply can't sleep until we finally drop, usually around about the time we are meant to get up, joy!

Anyway, back to the topic at hand.... With this condition obviously muscle deconditioning can be a factor due to them simply not getting used much, usually much less than the average sedentary "healthy" person (or really, Type II Diabetic who doesn't know it yet as the neglect they've inflicted on their body hasn't passed the point of them noticing it, yet...). Oh yeah, I'm meant to be talking about my exercise regime. *slaps head*



I've played indoor cricket for approximately the past two years. Initially I was totally useless even though I had played outdoor cricket for most of my teenage years & had played a fair bit of indoor too - at one point I was good enough to open both the batting & bowling in outdoor, though admittedly I was in B grade. The brain fog had me not knowing where I was or what I was doing most of the time, I couldn't see the ball (intermittent blurry vision is common with this condition), had no co-ordination & occasionally collapsed or just plain tripped over myself. Considering it is just for fun & a lot of people just turn up to socialise & drink anyway most people probably thought I'd had one too many. :p

Over time I improved & became a bit less useless, I could concentrate for longer & longer & eventually I could almost get through the 4 overs of batting & still be able to see the ball - so my body was getting fitter & deconditioning was less of an issue for me. Then about a year ago I started B12 shots, Rivotril & Endep & my sleep improved so pretty much everything improved, or at least got more predictable & manageable - far from cured but much improved quality of life - naturally the ability to concentrate added on top of my improved physical fitness (working around/within the limits of ME/CFS of course) my batting & bowling improved & I began not to suck (as much anyway). Also the impact afterwards became more & more manageable - I used to be a little impacted that night (can't sleep, brain going 11ty billion mph + pain) & maybe 1/2 of the next day of "hangover" & then back to my "normal" equilibrium - sometimes if I'd already done to much in the lead up to the Thursday nite game I'd get a hit of post exertional malaise (PEM) 24-48hrs later, if I'd paced well I wouldn't - it was pretty sweet really.

Then Paige arrived & things changed....

Now the benefits of the drugs have been negated plus some by the demands on a 2 month old & on a normal night I get to sleep at 2-3am (was 11pm), after indoor that was 1am is now closer to 4-5, even 6am - I've seen first light before shuteye on more than one occasion after a game. I'm still playing pretty well & kind of coping in daylight hours, but I don't wake until around a "normal's" lunch time, plus the pain is getting worse & I can't really fiddle with my drug dosage more than I already am & it still doesn't seem to be enough on a non-cricket nite, let alone on a cricket nite.

Now bub is finally starting to sleep through so I can work on getting my sleep back into a semi-normal pattern, but I don't know if this level of activity will be sustainable in the long term ie: when wifey goes back to work & I'm a stay at home alone dad.

Can I keep the benefits of playing indoor (some socialisation, a sense of being "normal", some fitness/exercise I can cope with, some sanity!) or will they have to be sacrificed for Paige's sake?

Time will tell I guess, got 4 months to figure it out (and get the Datto on the road, Jebus I'm screwed!).

Later,
Ash

woo! Interweb be un-rooted! Oh yeah, Paige is doing well too & had her first shots, which leads to a vaccination rant....

If you can read this, it means all my DNS issues are over & the transfer to a new host is complete, finally! This is the first post on my blog from my new domain host so *crosses fingers* there should be no more problems with either my website or my email.


Paige had her 2mth shots the other day & apart from the initial screaming "what they hell are you doing stabbing me with those!!!!" she's come out of it with a teeny mild fever & had her first baby Panadol, so overall she's come out OK.




Now I know the issue of immunisations for babies can be a bit of a sore point for people & I am truly sorry & feel for those who have had severe adverse reactions or even lost their child after an immunisation, however there is no way my child is not having her shots. The reason being is the benefits for the vast majority & for society as a whole vastly outweigh the risks. The medicine isn't worse than the disease, no matter how popular that myth might be. "Oh it is just about making Big Pharma richer", oh yeah where is Polio now? That's right, almost totally immunised out of existence. I could also mention smallpox, oh wait I just did.


Most of the drama about vaccinations surrounds the MMR vaccine, that's measles, mumps and rubella. As a child I was lucky enough to first get rubella (aka German measles) which was misdiagnosed as proper measles. I was too young to remember that but I sure do remember what happened when I got proper measles due to this misdiagnosis leading to me not getting a measles shot. For those who haven't had it, it isn't pleasant - it was about the sickest I've ever been in my life until ME/CFS struck. Measles was much more intense than my initial Glandular Fever infection for instance, but there was the upside of it only lasting a week or so & not having effects 5+yrs later - tho measles has a much higher mortality rate than EBV, but lets forget the differences between acute infections & chronic diseases for a moment & move right along to the rant part of the post...


There was a fad in the '90s in the UK to avoid the MMR shots due to some dodgy science linking the MMR shot to Autism (it has been debunked to death, but some people still believe it). This lead to a new a measles (and mumps) outbreak in the 00's in which roughly 1 in 500 children in the UK & Ireland who caught measles died. This article shows some interesting statistics, 18 linked deaths, not proven, related to the MMR vaccine over a 4 year period, or 4.5 "linked" deaths per year. There was also an expert suggesting that an estimate of 40 deaths over that 4 year period would be more accurate, saying only 1 in 2 would be reported giving us a figure of 10 "linked" deaths per year with maybe only 1/2 of them reported - as opposed to the average of 16 confirmed deaths per year directly from measles before the government introduced widespread vaccination (1998), though the MMR shot has been around since 1971 just not as widely used (there is a threshold under which the disease can survive in the population & over which it can't, those 16 deaths in 1998 is still a lot lower than pre-MMR - the deaths from measles in the UK today are somewhere between 1 & 0 per year).

So, if we assume that the MMR vaccine kills (which it most likely does, no treatment is totally without risk, even Panadol can kill) & those 4.5 linked cases are fully caused by the MMR shot, as a society we are still 3-4 times better off with it than without it using those flawed figures (ignoring the estimated figures for a minute).


Consider though, how many children got the shot in that time period? It was something like 95% of the population when the big WHO push happened in '98 & maybe 4-10 deaths a year in the next 5-7 years? In 2008 there was roughly 644,453 births in the UK (source WolframAlpha, a cool little app when it actually works) so if 95% of them got the shot there would be 612230 odd children immunised this year (2009) around their first birthday - the UK's growth rate is pretty stagnant & is more from migration than births so I'm going to be dodgy & use this figure as an estimate for the '01-04 dates of the study mentioned in the article that gave 4.5 deaths per year related to MMR, but to be generous I'll round those deaths up to an even 5 per year. That is one death in every 122,446 children immunised, or with the "estimated" figure of 10 deaths per year one death in every 61223 - related to, not definitely from, the vaccine.

That wiki article mentioned a 1/500 death rate [1] from measles (both in the UK & Ireland, roughly), though that was from that small outbreak but lets say it stands - that would give us something like 1200 deaths per year in the UK without any immunisation? Still sounds too high so lets look at some real stats (ripped from the Wiki MMR article)....

The benefit of vaccination against measles in preventing illness, disability, and death has been well-documented. The first 20 years of licensed measles vaccination in the U.S. prevented an estimated 52 million cases of the disease, 17,400 cases of mental retardation, and 5,200 deaths.^[4] During 1999–2004, a strategy led by the World Health Organization and UNICEF led to improvements in measles vaccination coverage that averted an estimated 1.4 million measles deaths worldwide

OK, at present the US has a population about 5x higher than the UK so that 5200 figure gets divided by 5 then divided by the 20 years ([2] yes I know the maths on that is way over simplified & way wrong - if you can do better please do & post it).

That still leaves us with 52 deaths per year without MMR vs five, maybe ten related deaths if they are being under reported. At worst using the vaccine is still saving 42 lives per year in the UK & that is being conservative.

I have no doubt that I've made errors in these calculations, they aren't meant to be perfect, just rough enough to illustrate the simple point that as far as the whole population is concerned, immunisation comes out in front as compared to the actual disease.

*steps off soapbox*

If someone more knowledgeable than I would like to correct me, please feel free!

I'm always open to learning & would love any flaws in logic or calculations to be highlighted so I can learn from them. :) I'd especially like to see some accurate calculations if someone can get some better population & measles mortality rate data than I could in a quick 2hrs googling.

Cheers
Ash


Notes...

[1] I found some shocking stats from the 3rd world that had more like a 1/200 death rate but I'd rather estimate low than high on the figures.

[2] Likewise using 20yo data from the US to calculate lives saved today in the UK is going to be inaccurate as the US population rate has been growing whereas the UK rate has been stagnant. I admit don't know enough about statistics to correct for this, though the gap in population was smaller during the first 20 years of MMR use in the US & it wasn't used blanket across the US population anyway so that should make my figures IMO very conservative - I would absolutely love someone to get me the real figures so if you can please do.