I feel sad and alone

[mnonchan]

Hello, It has been about a year since I posted here for the first time and this is the second time. I have COPD from the complication called GVHD from my stem cell transplant for my lukimia. It has been getting worse and I was in hospital a few times last year and twice already this year. Last year I was using oxygen when I go out and I could drive and go to coffee shop or small supermarket but I got weaker and weaker once I got infection and nowadays I stay home in bed most of the time and use oxygen almost all day, even just walking to bathroom is struggle and I try to take quick shower everyday if I can but it’s been very hard. I cough and if mucus is stuck wrong place I get very breathless , I get scared when I am home alone sometimes. I have nurse visit a few times a week and I just started to rehab today at home. Hope I can get some strength back, I lost weight and hard to eat nowadays. I know it will take a lot of effort and time but I do hope I can do a little more again , I hope it’s possible. I feel so breathless sometimes and hard to do anything. I get panicked little things and I have cough attack unexpectedly timing, too. Thank you for reading.

[peege]

Bless you mnonchan, I think panic attacks go hand in hand with severe s.o.b.

Have you spoken to your nurses and GP about the feelings of panic? They can help with a mild medication. I'm sure the rehab sessions will help too - you'll need to eat a little more to build up some energy!

Are you in the uk? The British Lung Foundation have an excellent DVD for rehab exercise, the exercise can be gentle as you like and show sitting exercise too.

Please do keep coming back, we are a supportive bunch and can hold you up while you get a bit of your life back. I don't know about oxygen but many other members do. Take care, very best wishes to you. Peege

[mnonchan in reply to peege]

I am from Japan and nurses and doctors aren’t so helpful about mental stage that much unfortunately. I will try to eat more and move more and keep on trying. thank you for your kind comment Peege

[peege in reply to mnonchan]

Just little stretches in bed will help to begin with.

When you have the energy and when you're a little stronger check YouTube, write 'sitting pulmonary rehabilitation exercise' in the search bar. Good luck. P

[mnonchan in reply to peege]

I will try to check , thank you 😊

[sassy59]

I do hope you can become stronger over time and will be able to do a little more.

Sending good wishes to you for better days ahead. Please stay in touch. Xxx 💖

[mnonchan in reply to sassy59]

Thank you for your kind comment sassy59. I am willing to come here more often and keep on trying to get better.

[Caspiana]

Hello mnonchan . 🌷🌸🌹🌱🌻🌺🌼🌿

I am really glad to see you posting. 😊 Being ill means to a certain extent we become a bit isolated. I often feel so. And that can be extremely stressful. That's why I come here pretty often. It's such a vicious circle isn't it? It's so very, very hard at times. 😑

We talk almost everyday 📨 so I won't write a long answer here. But just know, you aren't alone. Please come and participate here when you feel you are able. You may be surprised what difference a bit of support can make even if it's online. *BIG hug*

諦めるな！

Cas xx 🙋🐕

[mnonchan in reply to Caspiana]

Thank you Cas, you have been very kind and your encouragement means a lot to me , I can’t really express with words how thankful I am . Yes I don’t want to give up and I believe there is still hope for me . Hugs

[Caspiana in reply to mnonchan]

I am grateful too, for your support. 😊 Thank you mnonchan . 💕

[Balloo]

Hia I am inn hospital now awaiting MRI scared won't be able breath . I have done yoga all life I hoe will work . I find a breathing spiritual not too much program helps . Nice music tapes a cat to cuddle .wishing you well .and if you want a real. Good cry go for it xx

[Kristicats]

Hi mnonchan sorry to hear of your loneliness. Hope your moving about and that rehab will take you back to last years health so you can get out and about again🤞Sitting in bed can make things worse sometimes as your muscles aren’t making much oxygen. There are some good gentle chair exercise online and BLF have info and cds too. Have you tried the purse lip breathing when you feel panicky ? Maybe the exercising will give you a better appetite?Your doctor may be able to recommend something for the phlegm .Good luck and keep in touch with your lung buddies here💐💐💐🤞🤞

[mnonchan in reply to Kristicats]

Hello Chriskho, thank you for your kind comment,yes actually I do purse lip breathing often, I learned it from my rehab last year. My rehab yesterday was good, physio gave my massage around lung and did stretch around. I walked to kitchen and she helped me easy cooking. We will do more cooking together I think. Yes it will be good to do some chair excercise, I will check what I can do. Thank you 😊

[Kristicats in reply to mnonchan]

My mum is recovering from pneumonia she’s 87. She is setting a timer ( kitchen clock I think) and is walking just around the house for 5 minutes a few times per day. She is gradually increasing the minutes . It’s really helping her and she feels safe in the house . Get better soon 🤞

[mnonchan in reply to Kristicats]

Wow, she sounds like doing very well, it’s a good idea, maybe I should try when I am not home alone. 👍

[mnonchan]

Hello Balloo, thank you for comment , how was MRI ? Yes I try to relax , listening to music or watch movies. I get breathless if I get upset or when I have to hurry and just thinking about it sometimes. I used to do yoga but not nowadays, maybe I should start trying little by little at home .

[Balloo in reply to mnonchan]

Scan fine nice doc gave me happy pill chilled out to bob Marley! And nothing to worry bit nerve trapped neck agreed I go chiropractictor as i do always now in social housing. In place i don't know I not lived in this country for 40 years don't have relatives. Me and oriental cat !

[mskpjb]

Hello mnonchan. I'm sorry to hear that you are feeling so sad and weak. Please let your doctor and nurses know about the panic attacks. They can give you a low dose of a tablet that will help with that and it will also make you feel less sad. You really must build your strength up by eating more, again your doctor can provide special drinks to help that. Please don't feel that you must have something special to say to come on here.We are all your friends and don't want you to feel alone. We have another young lady from Japan, our beautiful Caspiana. I'm sure she'll be along to reply to you. Much love, Sheila xx

[mnonchan in reply to mskpjb]

Hello, Sheila, thank you for your kind advice , it’s nice to hear from people who understand what I am talking about and get some ideas what I can do for problems. Love and hugs

[James48]

Hi mnonchan, sorry to read you're having such a tough time. Meditation might help as well as all the good advice from other folks. It gets thumbs up from the medical community and it will have a calming effect on you if you practice. It requires no physical involvement apart from gentle breathing. It is normal to lose concentration at first but it doesn't matter. You just try again or leave it if you're not in the right mood at any time.

Plenty meditation videos on You Tube that talk you through it.

Here's link to one.

youtube.com/watch?v=X7iBnp8...(Not working as expected?)

Best wishes

[mnonchan in reply to James48]

Hello,James 48, thank you for recommending meditation, yes it will be very good idea and I will have look the YouTube you gave me the link. I realized I get up set and sad with little things a lot more since I got this lung problem and it’s very good for me to feel peaceful mind .

[Discomushroom]

Try watching movies. There's a ton of must-watch movies which can enrich you culturally and intellectually. And anxiety is the exact time to have a cinematic education. I can recommend you this website for watching movies 123movieshub.red/.

[mnonchan in reply to Discomushroom]

Thank you disco mushroom I will try