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: 266

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 Jim Scullion's discussion UK Attendance Allowance
"My sleep apnoea just requires me to pop a mask on before I go to bed.  But your circumstances may be different."
Sep 16
Jim Scullion posted a discussion

UK Attendance Allowance

Does anyone know if Obstructive Sleep Apnoea can be the basis for a claim for attendance allowance in the UK?See More
Sep 14
Anthony N is now a member of Hope2SleepGuide
Sep 11
Amanda Lucas is now a member of Hope2SleepGuide
Sep 10
Profile IconHeidi Castro Ledwych and marion Edwards joined Hope2SleepGuide
Sep 9
Profile IconNiki tillson, Canyon and T-Bone joined Hope2SleepGuide
Sep 5
Sarah Kirton is now a member of Hope2SleepGuide
Aug 25
Kath Hope replied to Antony Warren's discussion CPAP machine as cabin baggage on aeroplane
"Yes I empathise, as it was a similar story to mine with Virgin (not chasing them for my official confirmation). Even worse though was they said I couldn't use it and therefore couldn't fly due to my fit-to-fly letter stipulating I need it…"
Aug 25
Jonathan replied to Antony Warren's discussion CPAP machine as cabin baggage on aeroplane
"Ah, yes, I hadn't spotted Vueling's statement.  Thank you.  And your tags are very similar to the one I purchased at the start of my CPAP journey in the 15+ years ago. My only bad experience (as I have written about here) was…"
Aug 25
Kath Hope replied to Antony Warren's discussion CPAP machine as cabin baggage on aeroplane
"The link I provided to Vueling had sub-links Jonathan and this is from one of them about carrying medication onboard, and clearly states you can carry CPAP at no extra charge. I was impressed at the info provided from a flight company I'd not…"
Aug 25
Jonathan replied to Antony Warren's discussion CPAP machine as cabin baggage on aeroplane
"I have a large swing-tag attached to mine.  This appears to be an up-to-date equivalent https://www.cpap.com/productpage/medical-identification-luggage-tag-cpap-equipment The only short-haul flight I have taken was with British Airways, and it…"
Aug 25
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Glad you found us Antony. I had a sleep endoscopy by Bhik Kotecha many years ago but I told him he was coming nowhere near me with his scalpel lol, as I have too many reasons for my severe sleep apnoea. We have Dr Vik Veer now who runs the UCLH…"
Aug 24
Kath Hope replied to Antony Warren's discussion Reporting to DVLA
"DVLA just create problems by not being clear about things. At least you won't need to tick the box next time as it says 'a condition you haven't reported before.' Glad this came up though as we get lots of DVLA queries at the…"
Aug 24
Antony Warren replied to Antony Warren's discussion Reporting to DVLA
"Thanks Kath, I'll hope that they don't pick up on it if I don't tick that box in three years time! I'll apply in good time just in case."
Aug 24
Antony Warren replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"So pleased to have found this site, thank you. I'm a retired doctor and have had OSA for about 20 years despite having a BMI of 23, only ever sleeping on my side and not smoking. Over that time I have had five successful procedures of…"
Aug 24
Antony Warren replied to Antony Warren's discussion CPAP machine as cabin baggage on aeroplane
"Thanks Kath, I had tried to contact Vueling about this but hadn't found the web page so that's really helpful."
Aug 24
Kath Hope replied to Antony Warren's discussion CPAP machine as cabin baggage on aeroplane
"I had to check out Vueling as it's not a flight company we've been asked about before (perhaps they're newish). If you go to this page on their website you'll see it states you can take the CPAP in its bag and store it under the…"
Aug 23
Kath Hope replied to Antony Warren's discussion Reporting to DVLA
"Thanks for bringing this up Antony as it's going to cause confusion like it did with you. The most important word when completing the form is 'Syndrome,' ie Sleep Apnoea 'Syndrome.' The DVLA call it Sleep Apnoea…"
Aug 23
Antony Warren posted discussions
Aug 23
Antony Warren is now a member of Hope2SleepGuide
Aug 22

© 2024   Created by The SleepGuide Crew.   Powered by

Badges  |  Report an Issue  |  Terms of Service