Scared for the future

Hi. I've been sick now for 9 years after having pneumonia. I never recovered. In January I caught it again with swine flu and nearly died. Since then my breathing is bad and I sometimes panic. I have to go for a ct scan tomorrow and I'm scared. I have to have an ambulance take me as I can now only walk a few steps before becoming so exhausted I can't stand up.

I have 2 children one who is only 14. I don't want to die yet but feel like I have got long. Part of me just doesn't even want to go for the ct scan as I'm dreading the news. My last x ray showed my lungs were scared very badly. I know I sound like I'm moaning but for 9 years now I've not been able to walk out of my house.

I'm just wondering If there is anyone out there who can relate to me? I feel very alone and scared at the moment.

33 Replies

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  • I'm so sorry that things are so hard for. And please don't apologise for moaning. We do moaning here and are good at listening to moaning and have loads of virtual boxes of tissues and virtual hugs for each other. There are members who can identify with your problems. You are not alone. I hope you find your doctors helpful and supportive and that you have a network of friends and family to help (and carry) you through these difficult times.

    All the best

  • Thank you for your lovely message. I'm glad you don't think I'm moaning. I don't have any family just myself. I've had to take time off work as I am so sick. I was basically collapsing at the end of the day. It is hard being by myself and I just found this website by accident. Glad I did.

  • Hello Annielou, that sounds really awful for you especially as this had been going on for 9 years. I hope you do go for the ct scan and see how it goes.

    You have every right to be upset and never apologise for moaning.

    Please keep in touch as this is a wonderful forum full of kind, supportive people who love to chat and moan too sometimes.

    Take care xxxxxx

  • I am going to go for the ct scan. It will drain me for a few days but I know I need to have this done. This website sounds amazing. I only submitted my post a few minutes ago and I've got so many encouraging replies. I think we always fear the worst don't we? I know it's not good but until I'm given bad news I will carry on. I have to for my children.

  • Hi Annielou, do not be scared of the CT scan, it is not as scary as it may seem, I was afraid I would have to roll over onto my front, I have been afraid of lying on my belly for years, I needn't have worried, I was fine I calmed down and was able to listen to the voice in the scan which tells you when to breath in and out, it is easy, you can do it. It was the CT scan that saved me and gave the Consultant the diagnosis I had been waiting for. I had bronchiectasis. There are many of us on this site who have walked in your shoes. I say take heart there is help available, it is natural you should be thinking the worst when you have been ill for so long, but lets hope the CT scan gives you the diagnosis which will enable the docs to help you. We are all thinking of you, do not feel bad about moaning as you put it, it is part of this site and the reason so many of us hang on when things seem black and we have all had a good moan at one time or other. It does you good and makes you feel better knowing so many others are feeling the same way. The other part of this site which helps me is the advice we all give one another. We may all have different names for our complaints but we do have the same problems. Good luck and take care. Maximonkey

  • but for the grace of God. we are all on the same road with many diffrent makes of cars.. destination hell.

    i can relate to you... children and all. am not alone as i have my little family with me 24/7, i can still do things with them and for them but.for how long...am scared for them every day.

    i hope you get to spend a few more years with yourboys..xxx

  • I totally relate to you. I have a car which I'm so grateful for without that I'd never see the world. But for 9 years my poor children have had a broken mum. I can't do half the things I'd like. The thought of leaving them is unbearable. Hope things get better for you too.

  • You,ll never be alone on this site , always someone here 24/7 take care 😘

  • It certainly looks like that. So glad I left my message. Such kind replies from people I have never met. I felt a bit bad for moaning after what happened in London last night but I felt so alone. I don't now.

  • Hi Annielou7 we all need a good moan now & again so don't feel bad & we all on here know how bad it can get so moan away girl we are listening 😊

  • Thank you. I have nobody I can really talk to and I don't want to upset my children too much so keep it to myself. They can see how sick I am so I know they're worried. My oldest son has learning difficulties. He said if I died he would kill himself. So things not too good at the moment.

  • Hi Annielou, Im sorry you've been having such a hard time, it's not surprising you are so distressed. Have you been given a proper diagnosis? Do you have a consultant? I see that an x-ray shows scarring following the pneumonia if I've understood it right. You could call the BLF helpline nurses to talk through what questions you should ask your doctor or consultant about the new CT scan results when you get them. Their number is 03000 030 555, office hours.

    Since your walking is so compromised, Im wondering if your muscles are badly deconditioned. This happens after pneumonia and then a vicious circle happened whereby your muscles become weaker, its harder to walk, and your muscles become weaker still.

    Im shocked you don't seem to have had help to properly recover and build up again. Could you ask your doctor to refer you to pulmonary rehabilitation? This is a course of exercise and education to manage lung conditions. It may sound scary to you, since your walking is so difficult, but each person starts from where they are currently at and builds up slowly. Many of us here have done PR and most are hugely helped by it, even if they were very bad when they started.

    We quite often get new people here whose doctors have not helped them enough. We have learned that we need to be proactive on our own behalf to get what we need which is why I suggested called the BLF helpline. But forum members will also be able to provide help and suggestions so keep asking anything you want to know. And let us know how the CT scan goes. Take care, :)

  • Wow! Thank you so much for the great advice. Unfortunately my doctors have not been very good with me. They kept saying it was my thyroid and giving me levothyroxine which just made me feel 10 times worse. I have just found a new doctor who is brilliant. She's sending me for the ct scan tomorrow. Plus I'm seeing a lung nurse. I am going to write down what you said and tell her. I didn't know all this. I thought it may be copd. But I've been told I'm not well enough to take the test. I'm also borderline diabetic. I've lost so much weight and always Thirsty. Thank you for your great advice.

  • Oh Im so glad you have a good doc now - that should make a big difference. See what she says about the PR I mentioned above. It's available in most areas, though sadly not all, and there may be a waiting list. But assuming she says it's ok, you could start yourself by just taking one or two extra steps each day at home, going up and down on tiptoes holding a chair, and doing one or two sit-to-stand exercises - these will help strengthen your muscles. On the other hand she may feel you need to get more treatment before she refers you - Ive no idea. If diet is an issue, it might be an idea to ask for a referral to a dietician to make sure you're eating the best you can to make you stronger. And make a friend of your lung nurse - they usually know loads. Good luck!

  • I wish you the best in your tests, Annielu7. Try not to let the fear overcome you. This is easier said than done, I know. God bless. This psalm has always been helpful for me in times of trial.  Psalm 23:1-6

  • Thank you. I do read my bible and used to go to church a lot. But since I have been sick I haven't been able to go. I will read this verse. I cannot believe the amount of help, support and advice I've been given. This morning I felt lost, scared and very alone. I'm now feeling encouraged and I know I can come back here for advice. Thank you and god bless. X

  • Hi Annielou, just wanted to say welcome to our little forum. Sorry to hear you've been through it lately, a lot of the others have given you some sound advice, the only thing I would add is if you smoke do try and give it up! Good luck tomorrow my dear. Love S Xx

  • I did smoke but as soon as I had pneumonia in January I stopped. It's been so very hard and now and again I do slip up. But my life is not worth wasting over smoking. This forum is amazing. So many lovely genuine people. They've really lifted me.

  • Hi Annielou, Welcome to our little forum the folks here have helped me a lot since I was diagnosed back in jan 2017, some are like a second family. I feel your anxiety's as I was in your shoes not that long ago I have 5 kids and my youngest is 3 but mylife is improving day by day. Feel free to message me if you need someone to vent at and I hope tomorrow goes well for you. xx

  • Thank you. You know exactly how I'm feeling. As I'm writing this I'm so nervous as my appointment is in 2 hours and I've got an ambulance picking me up soon. Dreading it. I'm so happy to hear you are improving. That has made me smile. 😀 Thank you for your encouragement.

  • It's the morning of my ct scan and I won't lie I'm nervous. I'm going to be injected with dye so everything shows up better on the scan. I want to thank everyone for their amazing messages. They've helped me so much. Yesterday I felt I was the only one feeling like this. It is sad to know others are too. But so very encouraging for me. I will report back later when I'm home from the hospital.

  • Welcome to this wonderful forum Annielou. I have had copd for 13 years and was also diagnosed with IPF 2 years ago. I've had ct scans with the die, and it's nothing to worry about. I find if I shut my eyes I don't panic so much, think of sun, beach, anything to take your mind off where you actually are.

    Keep in touch with us all here, stay strong, and if you have a bad day, think tomorrow will be a better day. xx

  • Still waiting for my ambulance and thought I'd check comments. Glad I read yours as I'm so nervous. I hate needles always have. You'd think I'd be used to them now as I've had so many in the past few months. I'm going to think of a beach and me sunbathing, with the sea in the background. Poor you copd is so scary. I may have this or emphysema. My doctor thinks it's the latter. I will be strong and be back later with my news. Thank you for your lovely comment.

  • Sorry to ask but what do's IPF stand for as I am fairly new to this forum, and do not understand what it stands for?

  • Hi ruby80 it stands for Idiopathic pulmonary fibrosis. It's scaring of the lungs and breathing becomes increasingly difficult. I also have copd which doesn't help. I've been quite well since I was diagnosed with IPF, 2 1/2 yrs ago but since February I've had 4 hospital admissions and not been very well at all. But I try to stay positive, and do what I can but it depends day by day. My motto is every new day is different and keep smiling 😀

  • Hello Annielou7, sorry things are not so good for you right now, sure we all know the feeling. When I was first diagnosed, like you I needed an Ambulance to go to hospital, now I have adapted and can walk as long as I don't rush or run :) The scans are usually to check how your illness is i.e stable ,better or worse. So the doctors can decide what is best for you. Do have a moan if you want, or rant we are all human and find life unfair sometimes. Don't bottle up feelings that will make you feel worse.Do go for your scan and good luck with it, everyone worries a little when a scan is needed.

  • Thank you. All these comments mean so much to me. And chatting with others that are going through the exhaustion is so helpful as we can relate. I can walk a few steps but I then feel as though someone is tightening a metal vice around my waist and lower back. After a few steps it's agony. So I think a ct scan will hopefully show up what this is.

  • That is what the CT scans are for, on going pain can really bring you down but it maybe referred pain caused by other things. look forward to hearing how things went today.

  • Good luck for today, Annielou7 . Do let us know how you get on.

  • Thank you so much. Of course I will be back in a few hours. It's so nice to know I now have somewhere I can come back to were I can tell everyone what I've been through today. Thank you everyone.

  • Hello and welcome Annielou. Good luck for your tests today. Please let us know how you get on x

  • I'm back and managed to get through it all. I didn't like they dye they put in my veins. I felt like I was going to wet myself. Lol. I'm totally exhausted now but have to pick my son up from school in an hour (the joys of being a mum) I just wanted to let everyone know I'm ok. It was totally painless and ambulance ladies were lovely. Will get results in a week or so. Thank you to everyone for their lovely messages. I will still come here to chat as it has helped me so much.

  • So pleased it went well for you, I had a cat scan last week and like you felt the need for the loo! Come and chat whenever you want to Annielou always someone around. Take care Xx

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