were from here/

[Dion3844o1]

hi sat here thinking as ya do its no wonder i keep feeling down fed up iv come to conclusion iv been struggling with my condition for a while at the beginning things went slow then picked up i was put in touch with a nurse he came once never came back then i found out it was down to my specalist well why ?all my specialist said 6 month down the line is did a nurse come see you?i spoke to him ??well i dont get it so now what happens il tell ya i go for more tests late dec then more jan /feb then wait for results then in the meantime im virtually house bound because im that out of breath im stuck with a life sentence if i want it or not but it would be easier if i had a nurse to support me with breathing technices at least i feel let down like i dont matter just dont no were to go from here xx

[SquirrelsHolt]

I totally understand where you are coming from Dion3844 and could you ask your Doctor to refer you to a PR course which teaches you so much and there are gentle exercises etc and you'll be with other folk in similar positions. Waiting for our Consultant appointments can take months and by that time,for me anyway,depression would have set in! Hope this is of some help but come back and tell us if you had any luck ?

Take care.

[Dion3844o1 in reply to SquirrelsHolt]

thankyou for replying origionally it was my dr who refered me and the nurse came out but i no the nurse was going to speak to the specalist which he did but he never came back and i dont no how im keeping it together i really dont i have bipolar as it is iv no life not no i cant go out i cant breath i cant go anywere for fear of coughing fits the list goes on i thought i had it bad with the bipolar but id have that 10 times over if i could have my life back .

[valencia]

That sounds exactly like me x

[Hidden]

Hi Dion

Terrible I know, self-help works though..go on youtube and you will have a world of breathing exercises, gentle exercises, advice..go on the NHS website for info, phone the BLF helpline.,

Fortunately when you can’t count on the system, you can count on the world of internet, on associations..you need to reach out there when you are ready to..

Doesn’t stop you trying to get your GP to do his job and your specialist to check on what happened, to find out where that nurse has gone to..

Take care and good luck x

Fran

[winter2013]

What a bad time you’re having Dion! Sending you good luck, warm wishes ..x

[Dedalus]

It's understandable that you're fed up Dion and feeling unsupported,but they are still doing tests, which means there is some forward movement, albeit slowly. Great advice from Happylondon above. Even small baby steps with exercising will help. Good luck with everything and please keep us updated x

[Dion3844o1]

thankyou all for replying im feeling a bit more posative today thank god for this site it has really helped me im gonna look into stuff on the internet and nhs site like happylondon put to me thankyou, il keep you posted take care x

[SquirrelsHolt]

Dion3844o1 ,3rd attempt to send this,3rd time lucky ...? Never,ever be afraid to persist politely to your Doctor, again and again if necessary,that you feel as if you've been left,without any plan of action other than awaiting results. You perhaps have to talk about your bi polar and that you are unable to leave the house. I'm sure there are organisations that will visit and sit and chat if that would break your day up.Your Doctor should be able to refer you to the social services in your area although you can contact them yourself- you say you are able to go on the internet,so perhaps start there,for more localised help? Only suggestions .....I know it feels such a battle when you're not feeling well. This site,BLF offer a superb amount of help/advice and its free to call. Their number is on this website. Hope you have some luck.

[Dion3844o1 in reply to SquirrelsHolt]

thankyou so much x

[eccosse]

Hope you get it all sorted soon Dion

I kinda know how you feel though in a different way

I have been under the Specialist for a number of years now BUT since moving to another specialist in RD&E Hospital I feel really let down

I am supposed to get regular checkups but my last one was away back in June/July

I have had numerous appointments cancelled and rearranged the last one being the end of November now they tell me the earliest appointment is March 2018

After working from 15 till 67 years of age and putting money into the NHS this is how you get treated

sorry for the rant

Pat

[Dion3844o1]

thankyou for the reply i no exactly how you feel my aunt took me to a private dr a few yrs back cost her 160pound we were there a few minutes and to be told what we already knew and a prescription huh the only good thing is oviously money talks we got to see him straight away x

[Dmactds]

You're at a place we all find ourselves eventually; while others may mean well and some are even paid for their input, analysis and prescriptions, ultimately it is on us to do what is necessary through pulmonary rehab sessions, learning breathing techniques and just plain old walking no matter how laborious any of it may be.

You're at a well known place called "do or die" and it's really that simple; each of us can simply lay down and wither away..., OR we can decide we want to fight this nonsense and get up and do something to better ourselves.

It'll be a constant battle..., but what else are you doing with the rest of your life..., watching the telly??

Regards,

Duncan

[Dion3844o1]

thankyou Duncan for replyIng and given me a polite kick up the backside your right ;and there's no way I'm gonna sit and die I suppose I need to accept it is what it is and get on with it I'm just scared of the unknown like anyone I suppose but nothing I can do take care x