~Limbo Land~ *language warning....

Well I am still here - balancing the same old tightrope in our life of limbo

We want to resolve the issues with wankerish government departments before digging into anything else (Austin hospital program), oh yes, and then there were THOSE PHONE CALLS this week

Like de ja vu only it wasn't pleasant and tingly - it was a hypertension inducing recurring nightmare


At this point in time Small Man is NOT on a waiting list for anything -

Except the waiting list for getting fucked around which he must have hit the top of a million times over the last 5 years


I am now told that his paperwork for the operation was rejected and returned to the surgeon as 'Not meeting the criteria' - because of his age. 
So this was somewhere between July 2010 and November 2010 and I'm only just finding out now.....
I'm not asking for easy, I don't expect easy, it has never been easy - but for fucks sake a bit less of the bullshit would be fan-fucking tastic

AND from calling the GP surgery his blood sugar is 'abnormal' I have to try and get an appointment to see what is going on there  - oh I booked one - next available was the 2nd of May - that's just friggen awesome isn't it.

I'm not sure if I have posted this here before but thought I would share it with you anyway:

The Top Ten Things NOT to say to someone with Chronic Fatigue Syndrome (or to their mother, thanks)

1. "I get tired too."
 

2. "You don't look sick."

3. "If you'd just get some exercise ..."

4. "This is obviously depression."

5. "It can't be that bad."

6. "My friend had that but they weren't sick this long."

7. "You sure you're not just doing this for the attention?"

8. "If you prayed more you wouldn't be sick."

9. "If you really wanted to get better ...maybe you need to TRY harder"

10. Nothing.

Whatever else you do, do not say nothing. 

 

Nothing - that thing people do when they stop asking how he is. 

I know there isn't anything to say, I know there isn't an answer.

I KNOW how long this has gone on for - and there have only been a handful of ACTIVE support people for each of us.  I will be grateful to them for the rest of my life.

I am expecting a call from the surgeons PA tomorrow or Tuesday. Long story short Matt has made his disappointment over the situation known to the surgeon, as have I to the PA.  The surgeon has been in New York and will be back tomorrow.

On a positive note I seemed to have turned a bit of a corner myself health wise.

My mind seems clearer, I am not as fatigued.

I made it to the gym almost every day last week.  

The key to not over doing it is fitting it into a tight time frame.  

Small Man has been forcing himself to go to college with the main focus on drama lessons - he is part of a play and doesn't want to let everyone else down by not being there.  Even just three lessons per week with an average of two lessons per day is too much for him. 

Anyway, if I drop him off at 10.55am it gives me until 12.05pm to get to the gym do a short workout (treadmill mostly this week) shower etc and get back to pick him up.  

I have done really well with this approach - I can't be tempted to get on the treadmill for an hour - because I have to be there to pick SM up.  It is a good start.

In between all of this I also worked from around 2pm until 9.30pm  Wednesday, most of the day Thursday and then a few hours Thursday night, then Friday afternoon.

Yesterday I woke up with a sore throat/blocked nose and basically felt like I was getting a cold, so had a very quiet day of rest.  I feel much better today and back on track.

I think it must be the mouth guard, I actually like wearing it - so now the time has come to get one made up properly at the dentist.

Anyway - on that note - be kind to each other - or at least try......

G

x♥x