Hi,
I haven't posted for ages but it's a new year so for what it's worth:
I post on behalf of my wife who is very ill.
Her current state in brief-
Can't be upright for more than 15 minutes
Needs help standing to go to toilet and shower and then has to be in bed all day
On heaps of Sleep meds, cycling thru many to retain some effectiveness. Always using seroquel and melatonin though.
Badly limited diet. Uses FODMAP but also has ruled out heaps of naturally occuring chemicals. Meats, tofu rice, gluten free bread and some cooked vegies
I've been too busy with work last year to stay engaged on the forum and also lost my will/confidence after trying to administer low dose Valgan to her with no positive effect. It, in fact, made her sleep alot worse we suspect which in turn exacerbated symptoms like fatigue and pain.
After this we went to see a sleep specialist in our desperation. He was very understanding but believes she suffers from apnoea (also), so now she a has this weird arse mouthguard. Not sure if it's working yet... It has however given her oral thrush due to her terrible immune system...ALWAYS SOMETHING! I scrub that F***er 3 times a day for crisake!
Good news is that she isn't going UP on sleep meds
Small victories huh
As for diet she went to see a gut guy who took one look at her and wanted to admit her and put the naso-gastric tube in her.
We'd let her weight slip to under 50kg. And she's 5'10"...! Feel awful about that. Like she's wasting away under my nose.
She was resolute not to be an inpatient after her last experience that almost broke her (getting administered IV ketamine and having no access to regular pain and sleep drugs. No sleep. In agony. Early discharge)
But she's also resolute to gain weight.
The Eating disorder specialists say her diet restrictions are largely built up in her head which she finds hard to swallow and I've seen the evidence time and again of her straying to other foods but there's still something to be said for pushing those boundaries...hmmm
So my aim is to feed her like the proverbial turkey and find something ANYTHING this year that helps her condition.
Diet is just one thing even though her CFS specialist pointed to a high protein, high fat diet as a key to recovery.
It's too depressing for her, turning 30, having lost her 20's and teens to this thing, to lie down and be patient and sick for another year.
And for me too. I hate it. Life would be perfect if not for this sickness.
Thanks for reading
I haven't posted for ages but it's a new year so for what it's worth:
I post on behalf of my wife who is very ill.
Her current state in brief-
Can't be upright for more than 15 minutes
Needs help standing to go to toilet and shower and then has to be in bed all day
On heaps of Sleep meds, cycling thru many to retain some effectiveness. Always using seroquel and melatonin though.
Badly limited diet. Uses FODMAP but also has ruled out heaps of naturally occuring chemicals. Meats, tofu rice, gluten free bread and some cooked vegies
I've been too busy with work last year to stay engaged on the forum and also lost my will/confidence after trying to administer low dose Valgan to her with no positive effect. It, in fact, made her sleep alot worse we suspect which in turn exacerbated symptoms like fatigue and pain.
After this we went to see a sleep specialist in our desperation. He was very understanding but believes she suffers from apnoea (also), so now she a has this weird arse mouthguard. Not sure if it's working yet... It has however given her oral thrush due to her terrible immune system...ALWAYS SOMETHING! I scrub that F***er 3 times a day for crisake!
Good news is that she isn't going UP on sleep meds
Small victories huh
As for diet she went to see a gut guy who took one look at her and wanted to admit her and put the naso-gastric tube in her.
We'd let her weight slip to under 50kg. And she's 5'10"...! Feel awful about that. Like she's wasting away under my nose.
She was resolute not to be an inpatient after her last experience that almost broke her (getting administered IV ketamine and having no access to regular pain and sleep drugs. No sleep. In agony. Early discharge)
But she's also resolute to gain weight.
The Eating disorder specialists say her diet restrictions are largely built up in her head which she finds hard to swallow and I've seen the evidence time and again of her straying to other foods but there's still something to be said for pushing those boundaries...hmmm
So my aim is to feed her like the proverbial turkey and find something ANYTHING this year that helps her condition.
Diet is just one thing even though her CFS specialist pointed to a high protein, high fat diet as a key to recovery.
It's too depressing for her, turning 30, having lost her 20's and teens to this thing, to lie down and be patient and sick for another year.
And for me too. I hate it. Life would be perfect if not for this sickness.
Thanks for reading