Hope2SleepGuide

Sleep Apnoea Forum Bringing Help + Support to the Patient

I took my sister to my sleep specialist yesterday as she has had depression, CFS and FM all her life. He thinks she may have SA or possible one of the other sleep disorders. Her symptoms are oversleeping and tireness all the time, aches and pains all over, he said she has a thick neck, is overweight, large tongue and one blocked nostril, a lot of the typical conditions. She is doing a home sleep study next week and gets her results on 30th November, she can't wait and hopes this could be an answer to her other illness's.
My sleep specialist looked at me and said 'Hereditary, the gift that keeps giving'.
After the consultation, we sat down and had a coffee and I explained what SA was, how it was caused, the treatment etc, she was grateful and my brother in law said I may have just help another person, my sister this time and that he was proud of me.
I feel funny because all my life we have never really been close, I only saw her at Christmas when I had too, many times I thought she was just saying she had things wrong with her to get out of things. Hopefully this will bring us closer, it's funny how these illness's can change us and our relationships.
I have told her if she is diagnosed with SA and needs a CPAP, I'll go with her to get the right machine, mask etc. At least she will have someone that understands and can give her the help and support we all need at the start. I also spoke to her about an exercise regime that I have done and continue to do and she seems receptive but one step at a time.
In some way I hope she is diagnosed with SA because I know I can then help her.

Views: 271

Reply to This

Replies to This Discussion

Great news Terry, and hopefully in time her Fibro and CFS will begin to improve too.  Seems that takes about 3 months of good therapy (just my observation from what others have said).

Yes Kath, I agree with the timing. I was panicking because I thought she would give up after a week of issues but she has found the Resmed FX for her works the best for her, she is a mouth breather like me but manages to only open her mouth once or twice a night and doesn't even use a chin strap. I panicked because I suggested all this to her and it didn't look like it would work. I spoke to my friend Kylie who I'm helping with Bipolar and said 'I've lost my touch' and she said your 'magic' as she calls it will work just wait and see,' just have some faith in yourself' and the next things it worked. If I couldn't have helped my own sister I wouldn't have been be able to support and assist others.

great story....how kind of you to help your sister in so many ways, practically and emotionally. good on you! Suzie

Terry Vella said:

Just an update, I saw my sister Christmas day and she looked fantastic, she used to have to have a 1-2 hour nap each day and now she has 15 mins and I trying to get her to stop that. I'll trying to get her on an exercise regime but she still struggles with her Fibro and CFS but she will get there, I know it. I had tears in my eye all of Christmas day seeing how good she looked. She said she will continue on and I have offered to buy her machine for her as she doesnt have any insurance as long as she keeps going which I'm sure she will.

Thanks Suzie, you can see I have never had a very good relationship with my sister but this has bought us closer, it's strange the ways some things happen, maybe they were meant to be.

Just wanted to update this one, I heard from my sister the other day, Thursday was the first day she can ever remember that she has not had to have a sleep during the day, after a bit over a mnth with CPAP i think it is kicking in. For someone who has had chronic pain, fibro and CFS most of her life this is a big step. She said she wants to continue her treatment and has asked me to help finance the purchase of her CPAP. She doesn't have insurance and in Australia they cost us arond $2,000 about 1000 pound I think, but will be well worth it. I has made my weekend.

Great to hear this Terry and more proof that, whilst most people do find an instant improvement, the real work of paying back sleep debt takes time - often up to 3 months.

Just a bit of an update, my sister has been on CPAP for 2 months now and I went with her to get her numbers checked on Friday and she is doing really well, her AHI is 1.4 much better than mine (I'm jealous lol).
She like most of us had problems with her mask at the start but has gone from a FFM to a Nasal mask and loves it, I'm surprised she keeps her mouth closed but has learned too. She has depression, Fibro and CFS, and some of those are starting to lift already. She used to sleep most of the day because she was too tired to move, now she has a 15min nap each day and last week for the first time she didn't even need a nap during the day. Her husband went with us and he hugged me and had a tear in his eye, thanking me for helping her. He said last week they went out and she never used to have the energy to walk and this time she was walking ahead of him and there children and they had to keeep up with her. I am now working on getting her on a proper diet and slowly starting her on an exercise regime. She goes back to her specialist in two weeks and we then buy her CPAP which I have told them I will buy for her. All in all, a really good result so far, fingers crossed.

that is monumental news Terry! So pleased to hear. Suzie

Thanks Suzi, hope your throats feeling better soon.

Reply to Discussion

RSS

Sleep Apnoea Forum

New to the Sleep Apnoea Forum? 

1. Stop by our Sleep Apnoea Welcome Center to introduce yourself to the SleepGuide community.
2. Start a New Topic of Conversation.
3. Post your photos - of yourself, your old CPAP machine, your new CPAP machine, your pet, something about you!

Interested in advertising, have a problem or need to contact us? Click the Report an Issue page.

 

Latest Activity

Jonathan replied to Jonathan's discussion ResMed AirSense 10 getting noisy
"Just to tidy this up, I finally had an in-person review by my sleep clinic yesterday, who agreed the ResMed AirSense 10 was "wheezy" and replaced the machine."
Nov 9
Collette rose replied to Collette rose's discussion 1st time and I’ve failed the mask leak test
"thank you jonathan,i did get the it pack so tried the small and still struggled but i was sat up in bed so will try lying down great suggestion "
Nov 3
Jonathan replied to Collette rose's discussion 1st time and I’ve failed the mask leak test
"Hi My first thought is "don't panic"!  We're all a bit different, and there are many things that can be tweaked.  I took to CPAP therapy like a duck to water, but I've had friends who say they can't cope, but…"
Nov 2
Collette rose posted a discussion

1st time and I’ve failed the mask leak test

Hi everyone, today I received my rental kit - prisma smart max, plus a Philips dreamwear mask which I’ve been wearing unconnected to try and get used to it. I just did a mask fit test using a medium mask and got a constant red/orange leak warning…See More
Nov 2
Collette rose is now a member of Hope2SleepGuide
Oct 31
John posted a discussion
Oct 30
Profile IconBill Wright, Nicole Watson, TJ Bennett and 2 more joined Hope2SleepGuide
Oct 29
John replied to John's discussion evil mask noise
"Ha well it lasted a couple of days but started howling again. But it's a step in the right direction, just needs a bit more work."
Oct 24
Jonathan replied to John's discussion Has anyone been told root cause of their OSA?
"Nope, I just accept that some people's throats tend to close when they sleep, due to a loss of muscle tone during deeper sleep.  Back when I was diagnosed, the sleep lab just filmed you whilst you slept, stuck an O2 meter on your finger,…"
Oct 24
Jonathan replied to John's discussion evil mask noise
"Good to know you found a solution!"
Oct 24
John replied to John's discussion Has anyone been told root cause of their OSA?
"Did anyone tell you exactly what the anatomical issue is, Jonathan?"
Oct 21
John replied to Jonathan's discussion ResMed AirSense 10 getting noisy
"Can't say I know about this."
Oct 20
John replied to John's discussion evil mask noise
"So I tore some fabric from one of the filters and glued it over the holes - and it worked!It was dead quiet, and the air was still flowing freely.It was quiet all night then after a few hours a bit of whistling until I gave it a wipe.Vast…"
Oct 19
John replied to John's discussion evil mask noise
"Hi Jonathan, well see my nose is blocked a lot, so I mouth breath which really sucks a lot more moisture and makes my mouth dry. So I put humidity on maximum, which makes for condensation at the mask end, which becomes a demonic reed instrument.Now…"
Oct 17
Jonathan posted a discussion

ResMed AirSense 10 getting noisy

HelloI have an NHS issued ResMed AirSense 10 with heated humidifier.  In the last couple of weeks, it's developed an annoying noise, when I inhale. It bothers me a little and my partner a lot! I sometimes get problems if the water container in the…See More
Oct 16
Jonathan replied to John's discussion evil mask noise
"Hi My first question is why is condensation forming?  I very occasionally get some condensation, may be once a month, but I can quickly run a finger around the inside of the mask, and wipe it away.  I use a nasal mask, with the humidifier…"
Oct 16
John replied to John's discussion What's a good Apnea forum?
"11K+? Ok that's probably where I should look then :-)"
Oct 16
Kath Hope replied to John's discussion What's a good Apnea forum?
"Hi John. Thanks for the compliment as I do my best popping on here, but it's difficult due to us now supporting 25k+ patients at the charity. To be honest, the forum is quiet because most people seem to prefer Facebook and forums aren't as…"
Oct 16
John posted discussions
Oct 16
Jonathan replied to John's discussion Has anyone been told root cause of their OSA?
"There's some information here, but generally it's very common and likely due to our anatomy."
Oct 12

© 2024   Created by The SleepGuide Crew.   Powered by

Badges  |  Report an Issue  |  Terms of Service