3 Too Many

“Each day comes bearing its own gifts. Untie the ribbons.” – Ruth Ann Schabacker

Sleep – yep – bits of it did happen but not an overwhelming amount of it or what there was, quality was lacking.  Consequently I am now fighting the fatigue monster head on and would rate it about 50/50 on the stakes of who is winning.  I just feel so, out of sorts and not right, it is like I am someone else trapped inside this blobby steroid inflated body!!  Yes – thin gs are starting to get to me a bit, in case you can’t quite tell that.  Lots of strong nasty words get muttered around the house usually in the early hours.  Last nights annexes were caused by pain.  Bloody body is the flavour of the waking time today.  Just gutting really, as things fine, doze off, then wham, awake, sit and see if it is going to subside on it’s own or will need some meds to help it along.  Meant to mention that with Jacob the other night sleeping in my bed he got an insight as to how bad a night sleep can be with pain, night terrors, anxiety, etc.  He was talking to me this morning about it and was it normal.  Thold him that really the only place for it to be normal might be in our house, as I wouldn’t wish for it on anyone.

Eventually wake then about 7am to Dad calling – bloody hell Father!!  Why so early??  Anyhow, go and make breakfast, meds, tea, etc, and read the paper.  Much cooler day today – thank goodness.  It is going to be pleasing to be able to function without feeling yuck all day.  Login to work and catch up with the happenings – nothing really   Lachie says his goodbyes as he is heading away on a camp at Peel Forest for the week.  See ya Buddy – he leaves with a smile on his dial, which is great to see, and encouraging.  I get ready to face the day then.  Contemplate cutting my hair but decide that with how I am feeling that it my be a more dangerous task than dancing in a lightening storm with an umbrella!!  The wheels on this person are definitely very, very wobbly already today and I am struggling to maintain any go forward.  What the bloody hell is it with this?  It is something new and just sneaks in slowly then pounces!!  I will feel and be moving great and buzzing along then within almost seconds, I can hardly move as I have no energy, and speech goes slurred, tremors start badly and I can at times literally drop where I am standing.  So spend the morning fighting through that.  It would be OK if it came and went but it is like a rot that sets in and eats at you until it wins.

Get a call from the Chemist saying that the new emergency script that they have come up for dealing with me is there now.  So Jacob and I plan a bike trip to go and collect it, also I am hoping that the fresh air might be enough to put the fatigue to the side for a bit.  Run into Nicky Dravitzki there – Domonic’s wife.  Good to see you Nicky – didn’t realise that you worked for Nurse Maude – small world!  Totally enjoyed the ride there and back.  As did Jacob – my guide!  He is telling me to cross here, do this, do that, – seems to have forgotten that I used to drive so do know the road rules better than he does!  He has been at it again cleaning today too and washed all the downstairs windows this time and polished the glass in the lounge and dining rooms.  Payment for today is Subway – his choice.  But he knows he is not to expect something every time he does things like this.,  But he is happy and said I know – I am just wanting to do something and if it helps us all out then it is better.  We get back home in one piece and enjoy our lunch.  Keep working and fighting the fatigue monster.  Sue gets home and is most impressed with Jacob’s work.

Manage to sort out a few more things with work, and have to eventually stop and give in to the fatigue as the fingers are starting to do some really dumb things randomly!!!  Like delete things, add random letters/characters, etc.  So rest time is called.  Have an hours nap, and feel so much better for it.  Heading out for tea to Speights Ale House tonight with the Poms so get ourselves ready for that then hit the road, about 6:45.  Have a lovely evening out – balancing energy like a pro   Amazing how an hours rest can be enough to make you feel a million bucks again.  I was going to say something yesterday about how 4 people asked me about my seizures/fatigue/ coping – all along a similar vein, and also how they had differently but similarly noted changes in me.  And here I was thinking that I was doing a great job hiding behind my masks of normality   Seriously though – yep as I have said, everyday I am changing a little bit – be it how I feel, act, behave, etc.  The pattern over the past 2-3 weeks has been physically I am feeling different.  Though I have been thinking about this a lot lately – I would attribute the steroids to a lot of what is going on, as they increase you’re weight – esp. around your face, and upper body.  My energy levels are now almost at big fat zero!!  Mainly all the time – which for me is frightening really as I used to have 2 states – just to piss everyone off – full on, or near dead stop!  Now I have near dead stop.  I swear if the house was any bigger then i would buy a mobility scooter just to get around it ;-).  But seriously, I feel most days like I’ve been in a punch up with someone – which is fine as you know you’re alive then, but just the nagging soreness of what is getting to you.  But my mental state is running at times close to the wind and I’m not certain whether its my imagination or if it is actually the reality of the situation.  Oh, well I”ll just have another spray of my magic mist

Get home from an awesome dinner outing not to late – do blog, watch some TV and bed time for a bit.  The good byes to the Poms is very sad and hits me harder than I expected – travel well all.  I really hope you have safe journeys home.  Enjoy Singapore too.  Bloody hurting a bit already, so might be a earlier waking than normal   Hope all have had a great day/arvo/evening full of Monday fun and frolics  Also meant to mention there is a setting in Internet Explorer which seems to keep the web-page refreshed.  In Internet Explorer go to Tools >> Internet Options >> Browsing >> Settings >> Now select the top option (Every time I visit the web-page) under where it says Check for newer versions of stored pages:  This seems to work for most people so hopefully it will help others.  If not then I will see if there are other settings too for other browsers.  Right enough geek for the day. Take care.

Kia Kaha.