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I'm lost..

Candyred profile image
24 Replies

Hello all..

you wouldn't believe how many times I have written this out, read it, erased it, started again etc etc.. Here goes yet again.. I cared for my mother who died recently with COPD. It wasn't nice to watch however I did my best.. I was diagnosed to with mild COPD 5 years ago which is now moderate. I stopped smoking when I was diagnosed.. I am on various inhalers and depression tablets to..To say I feel ill is an understatement. Chest tight, back pain, headaches, constantly breathless no matter what I do.. Even walking has become a huge problem and that's in the house!.. Never mind trying to shower myself. I type this with a heavy heart as I feel I have no one.,no one to understand me or my thoughts!..

I spoke to Doctor McAlpine at Monklands Hospital, who basically said "you need to manage better"..

I am only 48. Yet I feel much older.

Sorry for sounding like a drama queen..

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Candyred
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24 Replies
velvet55 profile image
velvet55

Hi Candyred

You are not a drama queen, but you do sound down in the dumps.

The great thing you have done today is to post on here....You are not alone anymore...You now have us all... , to share your thoughts with... and believe me when I tell you...we all understand how you are feeling....Many of us have been there.

Keep posting....we are all here to help and support you

Velvet xx

grannyjan profile image
grannyjan

Hi candyred, It sounds as if you have been through so much lately. Losing your mam must have been a terrible loss for you, and seemingly you were suffering copd at the same time, you must be very frightened. There are plenty of very kind people on here that will give you loads of good advice, as well as listening to you when you are feeling down. Don't be afraid to have a good moan we all need to from time to time, but we also like a laugh, and there will be plenty on here to make you do that too. Try and get your GP on board to help you manage your copd, and your consultant can refer you to a pulmonary rehab clinic, which teaches you the correct exercises and breathing techniques for your condition. I hope this has been helpful. keep in touch and take care.

jan x

Magpuss profile image
Magpuss

Sorry to hear of your recent loss. You don't sound at all like a drama queen but perhaps you're expecting too much of yourself, too soon. Grief affects people in different ways and it can be very draining. I'm sure you'll get lots of useful advice and encouragement from many on this site and they'll probably be much more help than I am as I've only recently been diagnosed with mild copd. Just keep coming back, I'm pretty sure you'll get lots of replies soon. Chin up, and take care.

Candyred profile image
Candyred

Thank you so very much x

Hi as you were young to be diagnosed with copd and your mother died of it, have you ever been tested as there can be a hereditary link though this is rare. It is called alpha 1 deficiency. If you haven't been tested for this then you need to ask your doctor. It is only a simple blood test.

The other thing I though of do you have an oxymeter? This is the thing you put on your finger and it measures your oxygen levels. You can buy them for about £20 or so from lots of places - try Amazon.

It's natural, after watching your poor mum suffer so that you are very worried about your own health. We all know about lung disease on this site so you are never alone with your worries on here. x

in reply to

Yes I think the oximeter would give her some peace of mind. It did for me.

I never could afford a good one as they are at least $50-$60 here in the USA So I found one on the Listia auction site where you bid with credits (no money) you earn so I got a new model, new in the box for nothing! It charges on a USB cord you plug into your computer.

casper99 profile image
casper99

Hi Candyred and welcome to the board. I'm sorry to hear you have just lost your Mam. I lost my partner to lung cancer 6 weeks before being diagnosed with moderate COPD.

I've suffered from depression and anxiety for over 30 years and when I found out I had COPD, as well as my loss, I went into meltdown.

I suddenly felt much more short of breath, couldn't eat anything and lost loads of weight, became so weak I could barely get out of bed ect...

It took me a long time to climb back out of the abyss but, I got there eventually, once I realised that most of it was being caused by my grief.

It is almost 4 years now since he passed away and my COPD has stayed the same since diagnosis. I'm just a lot more aware of it now.

Your grieving, and it will be making you feel ill. It takes time but, you'll soon pick back up.

Start trying to get out of the house a bit more, even if it's only for ten minutes, it'll start making you feel stronger. It made me feel a lot better because, it stopped me stewing on things and also made me feel I was doing some exercise for my lungs.

Try to keep your mind busy. I took up knitting Lol. I still do it now.

Keep coming on here, there is usually always someone on the board to talk to, when you need your spirits lifted. xx

Candyred profile image
Candyred

I feel stronger just reading all of your posts.. Thank you so so much xx

peege profile image
peege

Hi, I'm so sorry about your mum and your feeling so bad.

I lost my mum in 2009 on a glorious sunny day. I was quite shocked at the level of grief and we weren't even that close. Your mum's your mum at the end of the day.

Spend some of your time looking at old posts with replies, put anything into the search bar And all manner of informative posts come up.

Also, go back to that Dr Strangelove and tell him that in order to manage better you want to go on the Pulmonary Rehab course (use the search bar for info) it's fantastic at helping you get stronger and learn a lot. Many of us gave never looked back since doing it and some have gone from moderate back to mild.

When I did mine I was a bit down, one session a counsellor was waiting for me at the end for a chat and to offer me counselling. I didn't take but now I wish I had.

Lastly, the BLF helpline us also great. They've got respitory nurses AND counsellors to talk to. Do please be good to yourself and give them a ring 03000030555 office hours or email.

All the best to you. Grief is a very strong emotion, no wonder you feel ill.

Oh I just thought of something else, get yourself some good multivit&minerals, some effervescent vit c. You need to watch your immune system doesn't weaken at the moment and get the lurgys.

Best, Peege

Oh Candyred, I feel so much for you. I'm going through a difficult time st the moment but I know from experience that the lovely people here have helped me so much. We really understand the different problems we each have and I can promise you we are here for you. Please feel free to offload here - it's helped me to be able to,do that. Take lots of care. Jan x

sassy59 profile image
sassy59

Hi Candyred, you have just lost your dear mother and cared for her during those final weeks/months so no wonder you are feeling ill. All that stress on top of everything else is not good but you can get through this. You need help and no doctor should just be telling you to manage better. See your GP and tell him how everything has been for you lately.

I really hope that you will improve over time and so glad that you have found this very helpful, informative site which is full of wonderful people. Take good care of yourself. xxxx

Dedalus profile image
Dedalus

Sorry about your mum, but now you must take care of yourself - ask your GP to arrange for you to attend Pulmonary Rehab, which really is a great help and gets you back on track regarding exercise, diet and even just speaking to others who have the same condition - it really does help. Take care and keep coming back to us with any problems/questions etc. xx

in reply to Dedalus

I agree...Pulmonary rehab makes everything better. I am going again after not going for a few years. I know I need it. Just got out of hospital 18 days ago after breathing in smoke and had a flareup and couldn't breathe. I am on oxygen now 24/7. I wasn't before I went to hospital, but had it handy at home just in case. Now I am scared I will be on it forever? So I'm hoping the Rehab works so I don't need the oxygen.

Dedalus profile image
Dedalus in reply to

Don't be scared Winded, just try to stay positive. You've made the first move by going back to pulmonary rehab - tell the wonderful respiratory nurses there about your feelings and any problems you may have as they are definitely the right people to help. I hope you'll be through this bad patch soon and get your oomph back (any drawback has us on our knees, but you just have to keep getting up and fighting on). You will get there eventually winded. Keep us updated. All best wishes xx

in reply to Dedalus

Thank you, DEDALUS! You are so kind. Yes i will fight this tooth and nail because this is a terrible feeling thinking you will die when you cannot breathe! And then not being able to do the things you use to do or go the places you use to go or get out away from the house very often. Thank you for your concern. You made me cry........but that's OK. It was because of your compassion.

katieoxo60 profile image
katieoxo60

Hi Candyred, sorry to hear you are going through a bad time, the DRs response seems a bit hard. You obviously need some support right now due to your mum's death and your own health needs. Do you have a depression group near you, or a breath-ease group or maybe the help line on here could tell you. We can support you in some ways, but sounds like you need some more personal contact close at hand while you face this crisis. I am alone so I understand what you are saying, it is a long day when there is no one to talk to. In our city we have a system where you can ring up and make an appointment to talk without a doctors referral, for depression, anxiety, stress ect, or they can be contacted on line, but not everywhere has this system. We are here if you feel really upset and need support there is always someone around so post and ask . take care xx

onamission profile image
onamission

I'm sorry to hear your not well COPD is not good I thought I had no one and I'm a firm believer you have to have a medical condition to understand it.

Make and appointment to go back to your GP and look if you have a breath essay group in your area they really helped me.

We are always hear if you need to talk

Ohtwo profile image
Ohtwo

I'm so sorry for your loss. I can't really add much as it has been covered by the lovely people on this site. I would say keep popping in on us. I don't post much, yet I always pop in and try and take part. I am never judge for this, some days are not good but if I have a problem these lovely people always have the an answer, they care, they understand, they make you feel strong, the make you laugh, they share photo's, their banter is very uplifting, there are quite a few characters too. When you have problems they are there battling along side you. Since I found this site I never feel lonely, so don't forget to pop in each day.

Take care

Kindest regards

Gwyneth

baseman profile image
baseman

You sound sooooo fed up, candyred. Are you a member of any club? I noticed in your post that.."I tried my best" Is that a clue to your feelings at the moment? We all do what we think is the right thing. When you have only one decision to make it can only be the right one, so I wouldn't "beat yourself up" about that.

I know people have said this to you before, but you have to think positively. For a start, what did your doc mean when he said//" you have to manage better?" Did he mean your COPD or your life in general? He doesn't sound very sympathetic to your situation, does he?

What kind of hobbies do you enjoy? Sometimes you need a distraction in order to bring some meaning to your life. After all 48 is no age at all.

Finally, always remember..you are not alone. Please use us a kind of "rant wall" (!) if you like. Sometimes just "bottling it all up" can be self-defeating. And don't worry, a lot of people on this site have gone through what you are going through at the moment.

Hope things improve for you. Please keep posting..we are here to support you.

Kind regards

M67W77 profile image
M67W77

Hi candy red, is there a breathe easy group near you. The one here has been a great help. You will meet people with the same symptoms as you have. I have made a few good friends at the one I attend.

juney_99_antique profile image
juney_99_antique

You don't sound like a drama queen, you sound like someone who needs a good old cuddle. You have gone through an awful lot and have coped admirably but maybe you now need to concentrate on yourself. People on here will never fail to be there for you and will help you in any way they can. Take care and know we are thinking of you.

marian-b profile image
marian-b

Hi candyred so sorry for your loss it's terrible when you feel so low I haven't been on this sight very long but the people on here are lovely wonderful people I don't post very often but I read comments every day you will pick up so many tips and advice chin up we are all here to help each other xxxx

FarmerD profile image
FarmerD

Hi Candy,Don,t beat yourself up for feeling bad.Having so recently lost mum you are bound to feel down.This illness seems to have depression built into it just to make our lives even more difficult.When,after a bout of pneumonia my health went down very quickly I too got very down and thought the end was just round the corner and I nearly gave up.Then I got angry with the illness and decided I would take control and not let the gremlins win.Ask your GP to get you on a Pulmonary rehabilitation course.You will meet others with your condition and learn breathing methods and lots of simple things that make life easier.Understanding exactly what is happening to us makes it easier to cope with.You are young with plenty of life left.I will be sixty next year have very severe emphysema and get very breathless just standing up sometimes but I managed to improve my lung function with a good diet and exercise.You too can improve your situation,you have already started by meeting us because we will help and support you as much as we can.You are not alone so keep in touch,pick our brains about anything,we will help.Kindest regards D. 💐

Candyred profile image
Candyred

Thank you

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