Friends, Family & Carers Forum

[Adge]

Hi @PinkFlamingo 

I quite like some Toilet Humour by the way, as it's very earthy & realistic.

I've been struggling with worsened daily fatigue, these past few weeks.

Plus an upsurge of my Diverticular Disease or Irritable Bowel Syndrome, as I'm not sure which condition is causing what symptoms (pain).

So that explains how there has been such a large time-lag in my replying to anyone's Posts.

I've not lodged any formal complaint (as yet) Re: Serious failures on the part of my DES Jobsearch Provider.

I have however lodged a Critical Evaluation (on request), of the DES Jobsearch Provider's failure to provide any relevant or effective assistance.

This was the best that I could manage, under the circumstances.

My chronic fatigue resulting from both Sleep Apnea + Complex PTSD, is managed with my Stimulant Medication, & frequent rests, when available.

Rests are not available when working, unfortunately.

After my major Bowel Surgeries (2 of which were Emergency Surgeries) - I could not tolerate wearing a CPAP Mask any longer (after using CPAP for 10 years).

So I could not use CPAP any more.

In any case, my CPAP machine Never reduced my fatigue Symptoms, when I was using it.

So that's why I've been taking prescribed Stimulant Meds for 17 years.

Yes, what you told me about Digestive Enzymes etc certainly was interesting - I like learning new things, or refreshing old knowledge that I've forgotten.

All the Best, I hope you have a good Easter..

Adge

[PinkFlamingo]

Hey @Adge 

Yeah we gotta giggle at our bowels, and their bad habits, any chance we get!

🙂

I have a thread in case you havent seen it yet... I am about to load some extra info there..Counting sheep - the importance of sleep! which may have some info that is helpful for sleep for you too, Im hoping...?

Im really sorry to hear youre fatigued and having more problems with bowels.. its really hard to tell if its diverticulitis or IBS, however pain in the bowels is not at all easy to deal with. Are you able to visit a doc to get checked? xx

I totally understand the time lag - please dont ever be concerned about replies to me. I know youre under the pump, so please dont ever put any expectations there 🙂

I really love reading your replies when you are ready to write them xx

Congrats on lodging the Critical Eval - I know you have so much on your plate, so this is a great step for self advocacy, and I think youve done great 🙂

And there's always a complaint process up your sleeve if needed. 

Im really sorry CPAP wasn't effective and not tolerable after bowel surgeries (which sounds very difficult to have gone through, I am very sorry you have been put through this dearest), and I wondered if it was from gastric insufflation (where air is forced down into the digestive tract - often creating pain - which was no longer tolerable? 

Depending on the diagnosis of the sleep disorder (if it was obstructive sleep apnoea) there are different devices: one is a mandibular advancement device which moves the jaw forward and thus provides more space at the back of the tongue to prevent so many obstructions, or there are positional devices that can be attached to various areas of the body so when a person is on their back (when the throat is most likely to relax shut with soft tissues) it buzzes gently and encourages a person to roll onto their side (a much more open airway in this position). 

I wonder if these are worth discussing with your GP?

No worries at all re digestive enzymes, I hope its helpful... a good GP or nutritionist will know exactly how they will work with your particular digestive challenges xx

I am really enjoying our chats, I hope this is also helpful to you, and if you have any other questions, just message me if you'd like 🙂 xx

I hope your easter weekend is going well and you are resting xx

[Appleblossom]

@Faith-and-Hope @Shaz51 @Adge @PeppyPatti @PinkFlamingo 

Hey fellow travellers.

PinkFlamingo.... you also have a way with words.... luv your turn of phrase.... so different from our other wordsmiths eg @tonys all so unique but carry...weight

Yep ..."generic warm air"... and the toot flying line.

Laughter does help us carry our loads.

I was also saddened you were treated so poorly by therapists.  My son has suffered for his height a lot, I have only had a little bit of problem with it.

I am exhausted but wanting to catch up on everybody's posts

Had a giant hot choc and mini one with my son last week.  Wish I could say it was great but he was losing it due to lack of sleep so it was hard work trying to find constructive things to do and manage his interactions with the public.  My heart is really broken

atm. But somehow we just have to find the fortitude.

Warm hugs friends

Apple

[PinkFlamingo]

Thanks @Appleblossom  🙂 xx

Its a sadness that we aren't treated with acceptance from the git-go, but the up-side is we have each other here on the forums xx 🙂 

Im really sorry to hear youre heartbroken at the moment... it sounds really hard right now.

Please do remember you have us around you, wont you?

If I was there I would give you a hug, pull out my notepad, and say 'lets list the best toilet jokes we have ever heard", followed by the best dad jokes... 😉

Keep your chin up dearest 🤗🌺

[PeppyPatti]

@Appleblossom  you show us all real strength and grace. 

Your staying power with your son is fab. 

I'm going to make a hot chocolate with you tonight ok ?? 

My dear dear special friend 

Xx