Hi dolly27 

good to hear from u 

It’s  good to hear u went to appointment with McMillan and they were helpful and also glad u said about me that was nice to think I have been of help it u and yes totally understand what you are going through

they say it’s good to have a good cry something I want to do often but for some reason I can’t maybe I need to as not good supressing emotions just you feel so alone with it all and I agree unless god forbid they  had to go through it no one can understand what its like 

i have put up with coughing mucus choking not eating constantly drinking water for the dryness as I say things do ease but at the time feels like forever and I’m still not sleeping right which is causing me a lot of stress and I still have not been back to work as my job involves communication and the way my voice is just not able to also the cleaning side of it I can not cope with the dust the polish it’s so drying for me and the fatigue that gets me down did not expect this at all and now I’m having anxiety and not able to get to appointments unless I have someone with me like you’re world falls apart 

I think there must be a lot on here suffering like this and feeling alone with it 

mans u right with the dry mouth unless u over indulge lol u can’t imagine having it all the time as I said some days better than others u may find nights worse I think while trying to or sleeping arghh awful 

must good to hear u have managed to eat that’s a positive for us and keep it up as will keep throat muscles working and hope u enjoyed ur nap I feel often need these now lol 

well hope to chat soon and anything just let me know if I can help I will try my best 

pauline 

hugs 

Hiya Pauline,its so hard when you arent working too as i find the days hard to fill though i do try to get out for a walk somewhere most days,i start going a bit stir crazy stuck in the house tho not great for the dryness going out in this cold weather but always wear scarve and try to keep my mouth closed outside,i walk a nieghbours wee dog,we had a dog for 15 years but lost him 3 years ago and it pure broke our hearts,we now have a rescue cat as i cant really do what needs to be done if you have a dog,hate people who do what the wee dog i walk owners do,she just locks him in back garden and never takes him out because she cant be bothered,think if you take on a animal you have to be prepared to look after them so he gives me a reason to go out cos if i dont he doesnt :(,yes every day diffirent,was great yesterday but its back with a vengence today but will just look forward to next good one,going to walk into town to look for birthday prezzie for my daughter,hard to buy for so soon after Xmas!,have you kids?Hope you are having a good one today and will talk soon,God bless,Roisin xx

Hi dolly27 

It really is hard to fill days no energy either so can only do the littlest of things before I’m tired so frustrating at times wen things need done and definitely going mad being in the house all the time 

it’s nice u have the dog to walk and at least can get out like u say keep scarf on as this weather does make u more dry and u right if u have a dog should take responsibility or don’t have one I think the dog is lucky to have u walk it bless 

and I love cats don’t have any but they are more free spirits and easier  I think ur right with a dog is like a child u have to work round them and can’t always do wat u want to better to just dog sit or walk one I am really feeling the cold at the minute or I’m to hot it’s mad as I’m sure I wasn’t like that before drives me nuts 

I hope u had a nice walk in town and found something nice for ur daughter it’s very hard after Xmas

i have six children and 11 grandchildren and there birthdays are as u can imagine all year round ha and one is new year so it’s very hard now and the grandchildren  I need to right them down as so many of them lol 

didn’t have to bad a day yesterday but did get a few dizzy spells and think cause I’m just tired never seem to sleep and today about same tired sire it’s the treatment we had as wasn’t like his before 

well best let u get on and don’t forget I’m here and ask anything 

if I can help I will 

hugs to u 

pauline 

Hi i can only say i had problems swallowing and dr prescribed me artificial saliva spray you spray it in your mouth dont know if it will help but maybe worth a try just to moisten your mouth a bit .i had it because if crohns disease but a dry mouth an throat is the same i dont thinki its expensive best wishs paul

Thank you Paulus,have to see my consultant on Monday so going to ask about the spray,tried Xylamelts last night when i woke up during the night with dry mouth and found i actually had saliva on my teeth when i woke again,i was delighted because i am scared of my teeth going bad th rough the dry mouth,had nice lunch there and some retail therapy so good wee day for me,hope yours the same x

Hiya Pauline,tried the Xylamelts,think spelling that wrong for first time last nite when i woke up with dry mouth and seemed to help a bit so going to take them at night and they will hopefully help,had a lovely lunch there,garlic mussels then small roast beef dinner(took the rest of roast beef home for later lol)then strawberry sundae,was pure delighted cos i put loads of butter on and dipped my roll in the sauce and was able to eat it,was like a Xmas dinner for me lol,had ready brek on Xmas day,all small steps but we will get there in end,busted now and lying down,omg,6 kids and grandkids,i would have heart attack,barely coped with 2 and a dog lol,envy you the grandkids,my sonis gay and lives with his partner,they intend to adopt some day but many years off and my daughter no intention off any till shes at least 30,wise woman lol but she works with kids and her best friend has baby so that does her!!hope your days keep getting better,gonna snooze now,God bless,speak soon Roisin xx

Hiya Paul,just awake,had lovely wee snooze there,hope i sleep tonight lol,yes i am really careful about my teeth and try to gargle with saline water every time  that i eat and have cut down on biscuits and chocolate,good for the figure as well as the teeth i suppose lol,dropped 3 stone so only good point to come off all this,my friends bro has crohns,its a rotten illness and i hope you are getting all the help you need,i know he was back and forth to docs for ages before they finally diagnosed him when he collapsed and ended up in intensive care!He is doing great now with his medication tho still has bad days but thankfully nowhere near as much,am trying to drink loads of water as it helps with loo too as morphine certainly doesnt help that aspect of life,so sooner i can get off that the better,the morphine,not the water lol,am going to make a liar of myself now and have a cup of tea and a bikkie lol but couldnt face a dinner so that will do instead,hope you have a great weekend whatever you are up too God bless x

Hiya Pauline i meant to ask do you still have to take painkillers or are you off them?

Hi dolly27 

good to hear u are taking naps I wish I cud to but don’t seem to be able to nod off and same at night with sleep arghh think why I’m so fatigued 

and also the xylamelts heard of them not sure were it get as sound good for dryness 

like u can only eat soft and things with gravy or sauce mayo anything as long as not dry 

did try chips but still to hard for me well the outer but inside not I can manage with sauce mayo still have horrible feeling swallowing but think that’s just me well I did always wonder how i managed 6 kids lol as was times I’m sure I wanted to run away lol 

there is three girls and three boys

and yes great having grandchildren just need to get better it enjoy them more as u know not easy wen feeling so rubbish at times and they don’t understand 

one of my sons is also gay and lives with partner so no children for him they don’t plan to even adopt maybe that will  change 

and yes ur daughter definitely wise woman 

my youngest daughter out the three is 28 and has none And don’t think she will she very independent likes her job and going out and holidays and single at the moment 

youre dinner sounded lovely by the way I bet I did feel like a nap after I get full quick and still have my protein drink to to keep weight on 

and only hing I sometimes have now is dissolved paracetamol and the mouth  washes 

and use nasal spray doctor gave me 

well I let u get in hope u sleep good and chat soon 

god bless u to 

pauline hugs