Wat is happening

Hello me again. Haven't been on, 4 a bit. I still haven't had my lung function tests I really don't no watz happening. It's been like 9/10 weeks. I felt like I'm dying an I feel so alone an scared my kids r gona grow up without their mum. I've no idea what is happening to me. I weezey every nite an crackle swell I do t have a cough at all. But I am starting to notice real shortness of breath during the day now. I've chased it up 3 times an they just keep saying it will b a few more weeks. I don't no if I've got copd cancer I've no idea an my head is a mess. I keep looking at my kids wen they r asleep an breakdown complete crying panicking. So scared. X

23 Replies

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  • please don't give up hope, I know it will seem like nothings happening but you will be ok. Worrying will only make you worse please try to stay calm. I used to worry and panic but realised it was doing me mo good. There is always someone here to talk to, so please don't be scared, you take care. 😊 xxx Bernadette

  • Thank you I'm trying to calm myself now with some breathing exercises. I have just seen so e of my msg from the other day an tbh I feel I have bit like a pain in the butt so I'm sorry if I'm annoying ppl (not you) I'm only young this is a huge shock to me an in very scared not 4 me but wat this will do to my kids. My 19 year old is not around to help my mum has go e to Ireland an my partner an my sister r always working. Itz hard to look after two young ones an get the answers I need. But thank you xx

  • I think part of the problem some of us are having reading your posts is that you appear to use text speech, which can be difficult to read.

    Regarding your tests, do keep on phoning to get early appointment. Make sure they have your number. I was called and asked if I could come in the next day once, as there had been a cancellation. Also, make them aware you can be available if a cancellation comes up (if you are able to go at short notice).

    I know it's frightening and worrying when all you want are answers. Try and keep positive and keep your breathing under control. If you have to ring everyday, to get and appt, then do that. The meek stay the bottom of the list in my experience I'm sorry to say.

  • Yea I am using txt an my phone tends do change words I write or miss letters so annoying wen I read it back in sorry. An thank you I will do that. Xx

  • Did you get a new doctor poppy x

  • Your children are your top priority, and you obviously love them very much, so you must stay strong and calm for them. As you say, they need you, so get on the phone about that appointment and go to your GP and say you're not coping and desperately need more help, especially with your anxiety. Perhaps a friend would go with you? Having young children should mean you're at the top of the list. Have you got a new GP now?

  • Hi poppy, you are not a nuisance and people on HU do care very much. Sometimes it's hard to get through each day but you are so please don't be too hard on yourself.

    I agree with Catwoman you do have to keep chasing for an appointment and you will get one.

    Best wishes to you and take care. Xxxxx

  • Thank you. Xx

  • Hi poppy it is hard isn't it I also am a lot like you in ways and finding everything a struggle I do hope you get some answers soon .poppy like others have said find it difficult to read text speak I know sometimes phone predicts for you but if you check it through then you will be able to put it in words that us of the older generation can understand and you will get more advice take care of yourself xx

  • OK I see what u mean about txt speech I'm Terrible with Ll this kind of stuff yes it really is hel. I can't explain to u how it feel to look at my children an imagine them having g to go through such grief of losing their mum my kids are my everything an I want their life to have as little emotional pain as possible it is wat has made my life very hard. And if u have a brain line mine I feel 4 you. It's torture. I have a bipolar brain so It isn't easy. Xx

  • I hope u r OK. I'm keeping t sure of your home story yet so not sure what's happening with u. Xx

  • I'm not sure of your home story yet. sorry mistyping again. X

  • I can see you are a very good mum and sure your children love you very much yes I have a lot going on fighting another infection etc take care xx

  • I just can't imagine being able to live like this. I Lool like I e aged 10 years since all this started an trying not to get infections with two you g ones is very hard. I hope u recover soon. Take care. Xx

  • Hi. Poppy it is hard to imagine isn't it I'm afraid I feel the same but there are lots of people n here who are coping and give good advice so I hope things look up for you soon xx

  • I think I'm go a go to A&E 2day I had chest pains s all nite funny enough lots of pain on my rite side an down my rite arm which hopefully means not a heartattack but still a worry an shortness of breath is worse. I just hate hospitals I get such a bsd anxiety whch doesn't help shortness of breath. Yea I'm sure there r people so much worse being much stronger than. I me rite now I'm normakkt string this has made me so vulnerable an my wife after a wasn't happy about taking the day off work. Feels like I'm a burden. Xx

  • I'm quite young like you 41 (not sure what age you are) I've got two young boys so I know how hard it can be when you are struggling with illness. I've finally had a consultant appt this week after 2 and a half years of struggling and he says I have bronchiectasis.. my view is though as I have kids I'm going to do everything I can to stay well for me and them and try to channel my energies into that rather than thinking too much about the what if's.. I know it's hard and yes you have to push and push for answers but like me you will get there in the end! Good luck xx

  • Thank you that was really nice to read. Yes I have to make lifestyle changes an it's all very overwhelming we have u feel so rough physically an mentally. That's such a long time to wait. I feel like my home life is about illness. I'm 39 40 in September. It's awful my partner just got in from work at is doing all the housework I'm not managing an it's not me to B sitting on my back side an I hate it I'd welcome any advice on lifestyle changes. So wat exactly does this mean 4 u I've never heard of this diagnosis although this is all so new to me.sorry 4 my ignorance about your liness. Xx

  • No worries at all it was all new to me too until I joined this group which has been so helpful. Bronchiectasis is a long term lung condition along the same lines as COPD so there is no cure however it is manageable with drugs, physiotherapy and generally trying to look after yourself and avoiding infections if that's possible! I've not had to make massive changes to my lifestyle at the moment however I am extremely tired and struggle with any physical excertion and when I do get an infection it knocks me off my feet literally! I am always looking for new things to improve my symptoms like drinking goats milk, taking up swimming etc as I intend to control this as well as I can! I know it can seem overwhelming at times and you just want to hide in a corner and cry but at the end of the day our kids need us so we have to try our best to be there for them! My husband does sometimes tire of me being ill as I know it's a strain on other people but I've had to try and realise that the house being a little dirtier than I would like is not the end of the world! Have my fingers crossed that things start to improve for you soon xx

  • Hi Poppy. I'm also a mum to 3 young children so I do understand your anxiety. When my lupus/CTD started to affect my lungs back in 2012, my rheumatologist faxed my referral by mistake to the lung consultant at the Nuffield rather than within the NHS and the appointment was just a 10 day wait! I decided, for peace of mind, to pay for the initial one and then slotted into the NHS for testing afterwards - is this something you could consider?

  • One day at a time Poppy--I have learned to live that way and do not think the worst--I have days like that and weep--but I try and pull it together and not worry--I just had lung tests and see Dr Wednesday to explain results--I know something is wrong--but I also know they can work with you and keep you going with semi decent quality of life.....Put your faith in your higher power and let go--Its going to be ok--Hug your babies--and when you start to worry--and think what if--counter attack it by saying what if im going to be ok--and regain my life--It can happen --Here to talk anytime--MmeT

  • I was like that in 2010. I had no clue what was causing my shortness of breath. I was a single mom with three boys to raise. The fear is horrible, but turns out I had asthma. I am now on meds and I feel better. Don't give up.

  • I know where you are mentally...I'm also a youngish mum ..43 ...very recently diagnosed with pulmonary sarcoid (they think!) ....trying different meds but the first one didn't work ..am on high dose steroids now and have horrible side effects ( weight gain ++, numbness in arm, pain in joints peristent cough still.. I worry they are gonna change the diagnosis to something aeful all of s sudden .... but you kniw what ...i've now accepted I don't have control over my diagnosis only what I do and feel about it.

    Love your kids, create great moments for them .... keep pushing out those negative thoughts ... life is beautiful and never long enough....take each day as it comes..... and do keep calling for the tests...you can control of how much you do and feel xxx

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