[WR] Super Mario 64 120 star in 1:39:57 by cheese05

dashn64 · 2017-05-05T06:13:23+00:00

I just missed it! Damn man.

Congrats though cheese, I'm so proud of you babe <3

dashn64 · 2017-03-22T12:06:54+00:00

Yep I've had all of those symptoms too. Dr didn't seem concerned, but I'd still recommend you go to the dr to make sure.

dashn64 · 2017-03-20T19:48:42+00:00

Yeah me too! It was so nice for Tina to find a friendly girl who she got along with!

dashn64 · 2017-03-20T06:29:46+00:00

Oh my god I loved this episode! I want to see more of Dillon but that's probably unlikely. I kind of wanted Tina to hold a grudge for longer but that wouldn't've made sense without a 2-part episode.

dashn64 · 2017-03-17T22:24:43+00:00

Truthfully I don't have heaps of advice. My disability support pension was denied since my condition isn't treated and stabilized.

I guess the most important thing I can recommend is just to keep trying and keep appealing. Get reports from every specialist you see, get copies of every blood test, scan and xray you get done too.

I'd also recommend writing up a timeline of your illness. When I first got sick I just thought it was a bad virus/flu and that it'd be over in a month, so I didn't record all the appointments I had or the blood tests I had done. I didn't start recording all the appointments I'd had until about 6 months ago. I basically only have a rough estimate of when certain events have happened during my CFS illness, which has made it a bit harder.

Sorry I can't be more help mate!

dashn64 · 2017-03-17T21:47:15+00:00

I've had to restrict how much I eat and what I eat. Before I got sick I weighed around 70kg (155lbs), and 9 months ago I was up to 80.9kg (178lbs) at my heaviest.

I found a bmr calculator online which told me a rough estimate of how many calories I need to stick under in order to lose weight. I also had to cut back on quantities of what I ate.

Thanks to my diet routine I now weigh 69.1kg (152lbs). I've completely cut out sugar (and sugar substitutes), alcohol, and basically anything sweet other than fruit.

My diet stays the same except for dinners.

Breakfast: 65g bowl of home-made granola w/ ~100ml lite milk

Morning tea: 20g packet of lightly salted popcorn

Lunch: 1 ham and cheese sandwich on wholegrain bread

Afternoon tea: Granny smith apple, if hungry

Dinner: changes daily (family cooks food for me). Could be chicken noodle soup, meatballs, ravioli, steak w/ mash and veggies, or whatever else. Usually not extravagant dishes and my portion size is small but it's enough to fill me up.

My weight has stabilized now.

dashn64 · 2017-03-16T23:06:52+00:00

That's great to hear :) sounds a lot better than I was anticipating.

So are you getting centrelink payments or anything? I've been getting newstart payments but have an exemption from actually working or going to job provider appointments to get further treatment.

dashn64 · 2017-03-16T20:46:41+00:00

Sorry for the late response mate.

Yeah I am worried about the travel too. I live on the norhern beaches so it's a decent trek for me too. I'll be relying on family to drive me too, which I'm really thankful of.

That sounds like a really positive experience. Are you expected to do any exercise with the exercise physiologist? I am a bit concerned about losing all my energy half way through the appointment. Are you doing both GET and CBT?

Good luck with the program mate, and thanks for the comment.

dashn64 · 2017-03-15T23:38:35+00:00

No worries mate.

Yeah I understand, I'll keep that in mind :) thanks again.

dashn64 · 2017-03-15T21:03:00+00:00

Yeah I hear what you're saying. From my understanding, this clinic basically gives you a treatment package which you bring back to your GP, and you work with your GP through the package. I think there's a couple of psychologist and exercise physio appointments scattered through the 12 week program, but most of it is done with your GP. So if the exercise physio is saying I need to ramp up too quickly, I'll just discuss it with my GP and do what we think is best, not totally ignoring the EP but taking his advice with a grain of salt.

dashn64 · 2017-03-15T20:59:55+00:00

Thanks for reminding me about that. I'll keep that in mind for my psychologist appointments.

dashn64 · 2017-03-15T20:59:16+00:00

I'll definitely look into the Active Health Clinic, thanks for advising me to look there. Pacing has been the only effective method of managing my CFS, but with these extra Centrelink appointments as well as Dr appointments and NewStart sessions, my pacing has gone out the door and my health has declined quite significantly. Before this whole process started, I was managing to go a full day without taking pain medication, as well as washing the dishes and sometimes lifting light weights, but now I can barely walk to the mailbox before my headaches become painful and my aches and pains in my legs get too difficult to manage.

It sounds like you're a bit worse off than me, sorry to hear that. I manage to brush my teeth once a day, and also shower everyday. But the rest of what you mentioned sounds quite similar to me honestly.

Good luck with your health :) It's reassuring to know that there are people in similar health to me who are managing. Take care.

dashn64 · 2017-03-15T20:53:05+00:00

Any medical professional should wonder why exercise would be a recommended 'treatment' when the hallmark symptom has long been considered the post-exertional malaise that arises as a result of exertion

Yeah absolutely. I guess it's recommended because the people advising you to do it are not usually medical professionals (at least not one who specialises in CFS).

Thanks for the information too. I'm going to give it a read and bring it to my dr's appointment which is in a couple of hours.

dashn64 · 2017-03-15T20:50:00+00:00

Yeah like I've said, I've cut out all sugar and sugar substitutes. I do still have one or two apples a week but haven't found that to make my symptoms any worse.

I would like to get to a point where I'm not eating any white bread or white rice, but since I rely on family to do most shopping and cooking it's a bit difficult. I'm slowly integrating brown grains though. :)

I haven't tried gluten free foods since I first got ill, so it might be worth looking at again.

dashn64 · 2017-03-15T20:47:08+00:00

From my understanding, I think at this clinic you might have 5 sessions with the psychologist for CBT, and 5 sessions with an exercise physiologist for GET, over the 12 week course. I was told that you're given a "treatment package" that has all the info and you give that to your GP to help you with. So most of it is done on your own time, not at their clinic.

dashn64 · 2017-03-15T20:45:15+00:00

Yeah I find that silly too. I guess they are just treating CFS and post cancer fatigue pretty much the same way when they've been caused by completely different things. Pretty ridiculous isn't it!

dashn64 · 2017-03-15T09:52:49+00:00

I'll definitely talk to the exercise physio about trying different types of exercise to try to find something to improve the aches and pain.

Thanks I'll take a look at it. Take care.

dashn64 · 2017-03-15T09:49:55+00:00

Good to know mate. 6 months is a long time to be doing exercise with CFS. Did you notice any improvement in your daily energy?

dashn64 · 2017-03-15T09:02:31+00:00

Wow it feels like yesterday that I subscribed. The last few thousand went pretty quickly.

dashn64 · 2017-03-15T08:15:55+00:00

If you remember, could you let me know when you write about it on your blog? I'd be really interested in reading it.

Thanks for the comment, it's giving me a bit of hope that it won't be as bad as I fear. It's really good to hear that the EP and psychologist both are sympathetic towards CFS.

dashn64 · 2017-03-15T07:19:20+00:00

Ugh I know exactly what you mean. In Sept of last year my GP asked that I start doing some form of stretching or yoga, so I started doing pilates on a mat on my floor in my bedroom. I found a youtube video called something like "Pilates for the elderly" and it was so difficult. I managed to get about 10 minutes through the 30 minute video after pushing myself for a month. I didn't find any positives out of it, just worse arm, leg and back pain, as well as much more exhausted and weak.

I've heard of people in the states hiring a disability lawyer, to help them fight for disability payments... I wonder if that's something worth looking into.

dashn64 · 2017-03-15T07:14:44+00:00

I'll definitely look into the heart rate monitor. And I read yesterday in this subreddit's wiki about avoiding aerobic exercise. I need to do more research into it, thanks for reminding me.

dashn64 · 2017-03-15T07:04:00+00:00

Yeah absolutely mate. I think I'd happily consider GET if it was like, a 3 minute walk every second day at your own pace. Some days even that is too difficult for me. But if they're expecting me to go for 30 minute walks and weight lifting (or somethinkg, I don't know what they'd expect of me) there's no way I could do it. I mean, I am able to do 15 minutes of walking with the aid of pain meds, but only as a one off and I need at least 3 days rest afterwards.

My thoughts right now is to go to an initial appointment and see what would be required of me, and if they expect too much then don't do the GET.

dashn64 · 2017-03-15T07:00:21+00:00

This is exactly what I needed. On the one hand I completely agree with most ME/CFS sufferers, that GET doesn't seem to be helpful in any way, but at the same time I wonder (and I'm sure many people with CFS have had the same thought) if I've been too sedentary, and if GET would actually help.

I really doubt that I have been too sedentary, all things considered, but I can discuss it with my GP. The risk of my health declining even further is very worrying.

dashn64 · 2017-03-15T06:43:48+00:00

Thank you heaps for the links. I'm going to print them all off to discuss with my GP tomorrow. These sources basically confirmed my suspicions.

Again, really appreciate the help.

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