my week

Ive had a bit of an up and down week with the ME and a very tiring week with 4 appointments. Two of them i didnt even know I had till people showed up at my door..

-GP checkup as I just finished my antiboitics for the pneumonia,
-the housing people (who i didnt know was coming as I'd been too drained to go throu my mail so didnt see their letter
-mental health assessment people who came due to housing people telling them i was distressed when they showed up at my door unannounced when I was in a very exhausted state so got upset (as I also had another appointment on later that day). So then the mental health people showed up unannounced a couple of days later... as normal they cant offer to provide me any services. (they did say they would contact disability SA for me as I forgot what disabilitySA recommended me do last time they were here and I was too sick at time to follow up things)
- a court ordered psychriastrist appointment

On top of that.. i had a friend show up unexpectively ... and also had my boyfriend here 3 days due to the appoinment. So yeah, a real draining week. I ended up to the point in which I couldnt even walk from my computer room to my bed next door and was crawling on floor to get into bed.

Yesterday... I got out of bed and didnt want to move so spent the day feeling like I was being very lazy. Strangely it turned out it was the CFS/ME but I actually didnt realise it was till that night when I suddenly felt much weller, less tired and hence then motivated to do things.
I guess im so used to being drained or feeling unwell that at the time I just was completely unaware that it wasnt laziness making me sit all day and not do any housework at all but rather exhaustion and actually feeling not too well.

I guess others here get that too at times, are so used to being ill, that at times they dont even realise they are ill. (if i dont actually have a lot of pain, I dont tend to really notice things much at times).

Ive also spent a lot of this week with stiff legs and feeling like there is too much lactic acid in my calves just from having to walk about my house.


I forgot to mention my voice.. its slowly getting better and people can hear me again now thou it still isnt back to my normal strong voice. Doctor said it may take another month before my voice gets back to normal from the breathing tube.
Stressful weeks are awful. Don't forget that you don't have to answer your door. If someone shows up unannounced and unexpectedly, you do not have to answer the door. Just don't even make a sound and they usually go away. And later you can just say you were in the shower or something.
Hey Tania,

how's it going? wow, you had a lot of responsibility to look after so quickly following your return home from hospital. I wish you could relax a bit and move more gradually back into taking care of the responsibilities, but sounds like it isn't to be.

i'm hoping your helpers can come through for you in a big way , by helping you with the forms and writing that's required. just a small thing makes a big difference, and the lots of small things can become overwhelming unless you are being helped. wishing the best for you on that front.

one last comment re your lawyer. you said you wished she would be more"aggressive" for your needs from her. sounds like she may naturally not be that way, and may not be able or willing to go into an aggressive ,faster approach for you. it may come to deciding to keep her and accept her slow approach which hasn't achieved much for you to this point, or explore finding a new lawyer who is more aggressive and willing to push your agenda more seriously. the position of "Your Lawyer" is actually an important critical part of your support system, and it seems to be under-achieving at this time.

you have had and continue to have some rough times. I wish you can get out in front of these bad roadblocks and receive the help you deserve in a timely manner. Struggling day after day sure is a tough row to hoe.

wishing you all the best. Thanks for your updates. you have many friends here.

Thanks for the update, Tanya.

Please take it easy. You are not lazy, you are ill!
Hi Tania,
Wow what a buzy week for you, hopefully this week will be more restful.
You are not lazy you are sick with both CFS and pneumonia so cut yourself some slack.
As for the crawling on the floor I've been there and done that so hang in there!!
Hope Love Light
"was crawling on floor to get into bed"
I smiled when I read this. We all get it, like no other group of people can. Where else can you talk about crawling to bed and we all know you meant it literally?
Be careful and gentle with yourself. You don't have to do everything now. It's perfectly ok to tell people it's all too much and you need to rest. If you can't say it, take a Carrigon kind of shower.;) That's ok too. The important thing is to avoid a crash while you recover.
Tania you are sounding much better! I know its no bed of roses but I think you've improved dramatically over the past week or two.

Just keep getting stronger. I amazed you're able to spin off such great and clear posts in the midst of this. We need them - keep getting stronger for us :) Good luck!
:) lovely replies.. thanks

yes Cort Im certainly improving (my mental state anyway) again. Helen.. yes I did mean the crawling to bed on floor literally...hopefully I can avoid another of those days for a least a few weeks (If im lucky).

My issue is with my Asperger's I cant tell a lie... Im seriously the worlds worst lier so I dont even try.. (If i go to lie I blush as red as a beetroot and its obvious Im lying, so I couldnt do that even with telling someone I was in the shower when they knocked.... It also feels dreadfully wrong to me to tell any lie. Living a life in which one never lies is very hard thou as one then gets into trouble as one didnt lie).

i'm hoping your helpers can come through for you in a big way , by helping you with the forms and writing that's required. just a small thing makes a big difference, and the lots of small things can become overwhelming unless you are being helped. wishing the best for you on that front.
I dont have helpers (or family realy to help me at all). My one and only support person is my boyfriend who lives quite a way from me.
He did thou come up today and i got him to finally help me with my paperwork :) . It was an inch high :( due to having built up due to me being too unwell to deal with it all .. and that was just the pile of paperwork on things I had to do. (We got throu a third of that pile :) .. he helped me with that rather then my housework he usually helps me with when he comes up to visit).

So today I got on the phone (with my boyfriend patting me on back to help me stay calm while dealing with ones I dont know on phone, with my Asperger's I find it really to make myself use a phone to) and rang up the government housing people. They'd wrongly charged me to replace a door after my back wood door got smashed in when someone broke into my home.

I gave them the police report but after telling me that i wouldnt have to pay (as their insurance covers), the gov. housing people charged me and was demanding the money within a fortnight. I ended up paying for it back last March as I was too sick to deal with them and the situation at the time and had no one helping me. So for past year, it has been bugging me that just cause I was sick and didnt have help, I'd ended up paying for a door I shouldnt have done. It was just unjust.

(Ive had other situations in which I've lost money as Im too sick to sort things out when people do wrong and overcharge me for things, I've lost many hundreds of dollars in this manner being too sick to deal with stressful situations and sort things out, money i really did need too :( , ive wrongly lost over $1000 that if I'd been weller I could of got back).

It was a huge weight off me to finally get that situation sorted out and hear them tell me they will refund me for the door I paid for a year ago.. in a few days. :) (I can really do with the money).
Good to hear you're feeling better, Tania.

I'd be giving the housework a miss for a while until you've got over all this legal stuff & paperwork.

And don't worry about people turning up on your doorstep when you didn't know they were coming. The hospital etc have records & should be able to back you up (if questioned by mental health assessment people).

Just take everything one step at a time & do the best you can. No one can do better than their best (in the circumstances that currently surround them).

It's good to hear that your boyfriend can help you.

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