I feel lost and so alone

[Shazrab]

Hi everyone iv not been on for a while so iv not had a chance to see how your all doing through the winter, I do hope it’s been as good as possible for you all. My problem is I feel so alone I’m not looking for sympathy but thought some of you may understand , iv got chronic bronchitis asthma so basically copd the respiratory specialist told me this in jan this year my gp said they v known this for about 1 year now but just wanted to make sure nothing else was going on so the respiratory dr said it’s up to me snd gp to deal with it and decide when I need antibiotics and steroids . I also have gathering of about 20 blood clots in both lungs so iv been on apixiban since they were discovered back in aug last year the up to date scan suggests the apixiban aren’t working as after 6 months I had went from 14 to 20 clots . My specialist says he is now going to send me for a scan called VQ spec ct iv never heard of this my previous scan was a VQ that found the blood clots any way now my real problems have began. Since taking an infection in Nov last year iv really been going down hill it keeps coming back and I feel so ill I’m in so much pain in both my lungs feels kinda like bad toothache also they both feel heavy and really tight I find it so difficult to even go to toilet I am unable to do any personal care for myself my body is so weak. My hubby has heart problems and has had 3 heart attacks since last March iv no one but him for support and now I just feel a real nuisance I v lost all friends and family due to when I took I’ll about 10 years ago with arthritis they all slowly left my life I do miss them but they all have their own busy life, what I’m saying is iv no one else to turn to my daughter is s nurse she’s 26 and although she’s a loving giving young lady for some reason she can’t deal with me being so ill and unable to do things go out shopping with her or even have conversation because if I talk for even say half hr the pain gets so much worse I also run out of breath now . All I reall can do is try and read but sometimes I’m too weak to even hol s book. I don’t understand this illness I feel like I’m suffocating and if I even open window for air it makes me worse I don’t know why I seem to deteriating so fast every day is worse than the one befor I don’t know how to help myself. I can’t even get out of bed now to sit and even have dinner or watch a film with my hubby due to weakness . I looked on YouTube for exercise to do but found myself totally exahsted and fall asleep and I have to say I’m scared out of my mind I sleep and I’m afraid I won’t wake up. At the moment I’m forcing myself to walk around the bedroom but then again fall asleep. My oxygen levels have been a steady 85 dropping during the night to around 78 . Iv only managed to leave the house 3 times this year that was for scan hospitals Appt and gp Appt . And slept each time for 6 hrs when I got home . I’m so scared of this sudden feeling of being suffocated desperately trying to breath also the pain is unbearable and I do find myself crying. I’m in pain killers dihydrocoden & paracetamol also a buneprophen peach but still have pain . The specialist says I shouldn’t have pain that’s bad only mild but my gp dissagrees that’s why he put me on the thing I’m on also my ventolin inhaler doesn’t seem to help the way it did so I take it every 2 hr 4 puffs . I am sorry for such s long post I just wonder can anyone relate to what I’m going through and help me with your advice please I wish I had someone I could tsk to face to face that could tell me about their experience please help with advice any at slll I would be very greatful many thanks 🌹I wish you all good days x

[sassy59]

I have read through your post and feel so sad for you. You seem totally lost and your poor husband must be struggling too.

Please ring the BLF helpline on 03000 030 555 and speak to a nurse who may be able to help and advise you.

You really need all the help you can get and I hope things improve soon. Xxxx

[Hidden]

I am so sorry you feel so poorly. Please try not to despair. You need to go back to your doctor, you shouldnt have to suffer tis way. There is lots of help you could be having. I’m sure many many of us have felt in the depths of despair, i know i have. You feel its never going to get better. Its natural to feel depressed and cry. I am sure it will get easier for you but you need to ask your doctor for more help that will get you feeling better. You can always post on here, lots of friends and always someone will reply. Just talking about how we feel on here really helps. Take care, i wish the best for you.

[knitter]

I do feel for you, I know at times in the past I have felt much as you do, but I was treated by an excellent GP, who sadly has left.

Has your infection been identified and treated with the right antibiotic , and have you been given a preventer inhaler as well as your Ventolin. Does your GP or specialist know how much you need to take of the Ventolin every day?

I was given the right antibiotic and a long intensive gradually tapering course of steroids when I got to the point of finding it difficult to even walk to the bathroom, let alone shower or wash. And I was monitored as well.

Have you been assessed for oxygen therapy at all?

I hope you get the treatment you deserve and need soon. Please ring your GP tomorrow and explain how your condition is affecting you and your family.

[aeparcs]

Hope everything will be fine soon ♥

[breatheeasy1]

Hi I'm so sorry to hear how awful things have been for you recently. Please don't apologise for having a good long moan, thats what this site is good for!

Knitter has given you some.great suggestions above, and I agree you must go to your GP and tell them how you are feeling. Don't suffer alone. And keep us posted how you get on...x

[joyce74]

You obviously need a care package in place which would help you and your hubby. Do get in contact with your doctor to get the ball rolling. Hope you improve very soon.

[Ergendl]

((((Hugs)))) Shazrab. Do speak to the BLF nurse and your doctor, as others have recommended above. You've done the right thing coming and telling us what's been happening to you. Hoping you feel a bit better soon.

[helenlw7]

I’m so sorry that you feel so sad. After reading your message I’m sure that there must be something else that can be done to improve your medical issues, and also support for both you and your husband, who must also find life difficult. I’m sorry that your daughter can’t come to terms with your illness. This is a really good place to talk, everybody is very caring, and can often give helpful advice.

[fcag2001]

I do hope you call the nurse on the BritisH Lung foundation website . Perhaps you should be in hospital getting IV strong antibiotics and some intervention re your blood clots . It might be a good idea to keep asking GP to refer you to a good consultant . If you are anywhere near Manchester ask to be sent to Wytheshawe hospital they are excellent with complicated lung problems . The most important thing is to keep believing in yourself and keep asking your GP for help if you are not getting better. Your local social service department should be helping you with a care package and perhaps you can have meals delivered etc . Let your husband know how you are trying to be strong and that you hope he is feeling ok himself . Sad to hear about your friends but as others say this is a fabulous site with lots of caring people who will help You as best they can . Keep in touch with everyone and stay as strong as you can. You are having a really difficult time but maybe soon you will feel a little better if you get the correct medicines . Good luck.

[vronny]

Dear Shazrab, I am so sorry you feel so dreadful, you must go to your dr, or see if you can get him to come to you, you shouldn't be suffering like that , I personally know how you are so scared but I am sure it will get better you are not alone while you stick with this group there are so many people who will help on this page Hope you soon feel better Love and hugs Vron xxx xxx

[Hidden]

Shazrab you've some lovely caring replies, just what this forum does so well. Care, people really understand and really care.

The number for BLF advice is 03000 030555 . Do call today, they have counsellors as well as expert lung knowledge.

Thinking of you

[Dedalus]

Great reply from knitter above. Have one addition to make to that - a steroid inhaler (I was put on Pulmicort Turbohaler 200) which helps greatly with the inflammation. Sounds as though you definitely need a course of oral steroids (and/or correct antibiotic) BUT please ensure you are also given enough to taper, so that you come off them slowly to give your body time to adjust. There is a LOT that can be done to help you so don't give up - just ensure you're being given the medication you need. ALSO, a gentleman on this site site kindly told me about garlic for the inflammation. I can't do fresh garlic (crushed cloves each day) so take garlic capsules every day (1500 mg) which am sure have helped me. Good luck with it. Sending hugs xx

[Hidden]

hi.

you need to see your gp and give him a very good idea of how you feel.mental health is important.xx

[casper99]

It's so sad to read how low you've become Shazrab.

I am not as ill as you are but, you sound so like myself when I hit rock bottom mentally.

It was the worst 6 months of my life.

It's hard being physically poorly, day after day. It grinds your spirit down and stops you eating and sleeping, until you become so physically weak, you feel like giving up.

I'm sorry your daughter is no help and you have no one else to turn too but, there is help available and you can come through this, believe me.

It'll be a one day at a time process, but, dig deep for the strength to take action and seek help.

Family are often not the people to help us when things are tough. They don't understand what being chronically ill feels like and can often say things that make us feel even more wretched.

I found that help from outsiders, saved my sanity.

I don't know if you already take medication for depression/anxiety, but if you don't, I think you need to tell your Docter, exactly how low your feeling and ask for some help.

I know from experience, how mental health problems can make any illness far far worse.

Please let us know how you are getting on. I will be rooting for you to get through this. xx

[Shazrab]

Hi everyone I wish you all well and hope your keeping as good as possible , I have to say iv managed to read through all your lovey responses and I was totally overwhelmed so much at all the help and advice you all gave me . The support has really healped me mentally to think of you all caring enough to reply with so much support and advice, I can’t thank you all enough. I’d just like to answer some questions iv been asked by you all firstly the infection I have is called heamophilus influzea I have now been on about 5 courses of antibiotics 4 doxycycline they made me very sick so I wasn’t keeping them down iv tried all sort of things but eventually I got 3 courses of steroids along with another antibiotic I can’t think what it’s called now . I felt a massive weight start to leave my left lung while on steroids but the other side effects were unbearable . I’m also on ventolin inhaler and relvar ellipta it definetly helped at beginning but now I don’t notice any difference , also I take tablet called carbocictine . There are only 2 antibiotics I can take due to being allergic to the rest my gp gave me another prescription for them they begin with a c I think I spoke to him on the phone but forgot to say quite s few important things but anyway unfortunately I don’t even feel at all better after taking all them along with the steroids. He said he feels bad as he doesn’t really know what else to do and is contacting my respiratory dr to ask for advice, I’m sorry if I’m moaning again I don’t mean to I really wanted to thank everyone on this site for help and support you’ve all given me not only now but since iv joined. THANK YOU THANK YOU ALL sooo very much I cried a lot after reading all your advice I was so touched and once I get the courage I will call the bfl line I’m nervous about calling . I always am on the phone . I wish you all happy and healthy days ahead 💞💞🌹🌹xx

[casper99]

Awww, don't be nervous about calling the helpline shazrab, you will feel better for talking to someone.

I admire your Doctor for his honesty and him taking the time to refer you to someone more knowledgeable than he is. hopefully, this will lead to some better treatment for you as it's well known that our Doctor's only know a little bit about everything, rather than a lot about something, that is unless they specialise is a particular illness.

I hope things improve for you soon. xx

[Shazrab]

Hi again to you all , I hope your all doing as good as possible . I was coughing up unreal amounts of blood last week so my hubby went into my gp with a sample also to get some advice,he told me to go to A&E right away so we did after drs there looking at all my background info and taking blood doing x Ray they said they couldn’t help , I needed an apptment to go back to my respiratory dr ASAP they couldn’t take over so it’s best he see me and decide what to do so after 5 hrs I was sent home no better off still very scared but thankfully it all settled down again the nxt day. I actually felt I could breath a little better and was sure I was going to make a recovery now but by Monday 2 dats later everything was back to same now my gp is going to e mail him again - he got no reply last time but I hope I don’t have to wait until July to see him. I thank you all once more for your help one thing I wondering my respiratory dr said last time I’m coughing up blood due to the copd it’s natural so not to worry does this really happen to any others ? Thanks j wish you all breath easy days ❤️