British Lung Foundation
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Back again ...Jury is still out

Today I slept until 1130 am and yes I was up going thru the motions and making hubby his coffee for while he is getting ready and then one for when he walks out the door. He thinks much of this is mind over matter my lung disease, my depression what ever is going on much of it and the getting well is about mind set. Yes a good attitude helps I tell him that but I don’t even feel human anymore...

Many people don’t understand that reference of not feeling human but I’m only 51 years old I should be doing my passion of taking care of people in their homes and teaching them about their medications and drawing blood for them so they don’t have to go wait in a line at the hospital where the truly sick germs are... I don’t know how to help myself other than to keep going to bed and getting up the next day. I used to be a registered nurse it was all I wanted to do i worked from 7 am to 11 pm daily two jobs then blam! You are sick now you can’t do your job. One bad cold could kill you they say, one ....so I protected myself to keep from getting sick face mask 😷 when in public places carry around hand sanitizer and Clorox wipes be safe not sorry. I was at one point thinking I got this but my mind keeps just racing about trying to stay busy and feel like I contribute to my family as I never want to be a burden. I now know how ridiculous I sounded to my patients that literally were just waiting to die.

I have my family but we are not very much like a family who even lives in the same house and I often get on the nerves of both my sons and my hubby cause instead of handing over the reigns of grooming my fur babies I make them help me. I know it will take it out of me but I need to do it to be relevant and feel like I have purpose. The littlest things are getting hard 10 lpm when up and moving around blast those nostrils clear I am so incredibly bored of TV, books, and even online being on the computer.

I’m going to look up how to sew a blanket entirely by hand craziness I know but every time I set up an area to sew my hubby takes it over with his computer repair stuff and at least if its by hand he can’t take my space on that as it will be my lap. I have never sewn anything entirely by hand sewing machines are much easier to use and stronger stitches I feel. So if you don’t see me on here I’m probably sewing by hand I have lots of blue jeans maybe I’ll make a blue jean throw blanket and pillow...????? To be continued...

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Hi I have heard that being ill and losing your independence is akin to losing a loved one. You are mourning the loss of your life and you have to go through the phases of mourning.

I was thinking - would you be able to use your knowledge in a voluntary setting? Something you could take part in from home and online? That way you would still be using your skills and would feel useful and more a part of society again. x

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So pleased you are posting regularly docmel and letting us know how you are feeling. Bev is right - you are grieving. I can really feel how devastating it is for you to lose your passion of your work, and so young. 51 is too young for that. All the things you say you're bored of are things I love, but if they were the only things I could manage, I think I too would resent them and find them boring. The lack of choice must feel awful.

Ive seen artists make things with old blue jeans. If you do make something, whether with jeans or something else, why don't you take a pic of it and post it here? Take care and see you tomorrow x :)

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I think it was the lack of control over my life that affected me the most after my illness and diagnosis, lack of my own money, loss of my role as a carer and housekeeper even, no paid employment.....which were all part of my identity . I seemed to become a ' non person' ....always sick.

But after a few years, I realised it was only me who could fight my corner, I learned to adapt , but not completely ...I still have bad days.....but believe in yourself , because as the ad says ' you are worth it' .

I started knitting and crocheting for charity , and still do...it gives me an aim in life and enjoyment. One of our previous members was a great crafter and patchwork quilt maker, she had a space for her machine, can you find a spare table for yours somewhere. I have been checking you tube for new ideas.

I can still garden a bit, I have pots that I fill with flowers, and a few succulents and cactus inside that are easy care. It helps in a way that my friend and neighbour has similar health problems and we can moan and laugh together in the garden...and we buy each other plants when we manage to get out.

Meditation and relaxation have helped me cope too. There are on line education courses for free...I have studied history, nutrition, mindfulness amongst other subjects and you have on line contact with others on the courses.

But keep in contact on this site, I have been here many years now and it's been a life saver and a good link with others in a similar situation. Take care.

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I have a spider plant....she is pretty prolific I rooted and gave away 12 plants over the last 2 years and have 6 spiderttes that I am currently hoping to take root. Then I’ll have to get them planted and given away usually I give to people buying new homes family, friends, and neighbors. Truthfully not very time consuming or stimulating for my brain. I like to see the smile on their face cause I know they were expecting card and cash and well I’m poor. Lol.

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Hi. I can identify with a lot of what you are experiencing and agree with what Knitter has said. It is tough adjusting to such a restricted lifestyle. I like to make jewellery and donate it to local charities to raise funds. You Tube is great for videos on how to do things. I am also trying to do painting and drawing because these are things I can also do sitting in the chair. I also like to write. In the colder weather I crotcheted a double blanket. Stand up to your other half! Everybody needs some space of their own. Next time you make yourself a space, leave your stuff on it so there is no room for computer bits! Hope you start to feel a bit more like your old self soon.

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Three great replies there docmel from people who do care and empathise, let me be reply number 4.

I recall when Pete was forced to give up work at 44, he was totally bereft and lost. It was difficult for us all but he gradually rallied and started collecting model cars and buses. They’re floor to ceiling in a spare room but that’s another story.

I loathe the word burden and please don’t think like that. Your family sound a bit scared and it would be an idea to sit them all down for a chat if that’s possible.

Keep talking to us. Xxxxx

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Yeah watching my family watching me struggle is hard. I know why the dog runs away before they die. The thing is I could go like this for a couple of years I’ve already beat the doctors first if 3 to 5 years that was in September 2010

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Keep beating the Doctors. Xxx 😘

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Glad you felt able to post and share your feelings on here. I know a lot of us share that feeling of loss and grieving for your old self when you were able to do as you wanted. Its a big shock to the system and needs time to adapt to. I know I feel that. You need to have your own little space for your crafts, unfair if you cant. There are some good ideas here from other replies like finding some voluntary work you can do from home or courses, perhaps like open university. I'm sure there are other things too. I like knitting and want to learn to crochet. There's a sense of achievment when you finish something and if its for charity that's even better. Take care and let us know how you're getting on xx

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You are fighting these feelings, which is great, but do get help from the medical professionals in the form of counselling AND CBT (cognitive behavioural therapy). They will both help you. You will feel better soon about your situation (no-one should be defined by how much they can or cannot contribute to the household). Take care and do get help with your depression (you'll feel so much better) x

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Well to be truthful I am on anti depressants and have seen a psychiatrist for this as they say it’s situational need to adjust the psychiatrist said I don’t understand why you aren’t processing medical claims or working to do referrals he seemed to think that I’m easily hirable even with needed 10 liters per minute of oxygen when I ambulating, arguing, anything that requires exertion. I would certainly cost some company lots of money as I think health care should be universal and available for everyone.

Yeah I didn’t like him and since I’m in an HMO for medical care and they don’t contract with any psychiatrist I’m not paying for round two out of pocket it takes 6 to 8 for one to feel the effects of the anti-depressant or so they say. Hubby and I don’t make a lot of money and if not for living with my youngest son we’d have to find a new place to live. Currently in a single family home next to a dog park and with a fenced back yard. I love it here would hate to have to move. If we had to it would hasten the end as I’d certainly have to let go of one of my fur babies most places only allow two dogs. Sorry for the rambling...

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Then do ask your GP (or Respiratory Team if you are under a Respiratory Team) for a referral for CBT (Cognitive Behavioural Therapy). It definitely helps x

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Of course I have a respiratory team but all referrals go thru primary care doctor and in my case it took 8 weeks to find the one psychiatrist whose fix is go back to work his notes even caused me to be evaluated to see if it is possible. Ummm no not really

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I mentioned your Respiratory Team because they were the ones who set up the CBT professional for me. Things are different in different parts of the country, unfortunately. Would be great if things were standardised for everyone. I know you had a bad experience with that terrible psychiatrist you were referred to, but do ask your GP to refer you for CBT. It definitely helped me. Good luck.

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Hi Dedalus

I have all the same problems with coming to terms with my ipf could you explain what cBT is please as know I definitely need help as the fear of dying has taken over my life as well as the symptoms

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Its Cognitive Behavioural Therapy. It helps you to see why you are thinking in a certain way and help you to manage your thoughts before you descend into panic mode and depression. In the beginning I didn't think it would help me, but it did. It's not a quick fix. I had three or four sessions before I could see any progress. If CBT isn't available ask for counselling (just explain how you feel). Unfortunately there are waiting lists for this type of help, so I hope you don't have to wait too long for either. You can message me if it would help to chat. xx

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Thank you so much for getting back to me and explaining this to me also for offer of talking, I just keep getting upset all the time

See specialist in July she may get me an appointment or would I need to go to my Gp x

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I think you need to ask your GP for referral in the first instance. If he/she can't/won't help then you can also ask your specialist in July (nice that you have that back up). Its very positive (no pun intended) that you're looking into seeing someone for your anxiety etc (that's half the battle). So Glad you're not just giving in to the depression/anxiety etc. By the way, are you taking any medication for depression/anxiety? I didn't want to take meds for depression because I thought it would become addictive - not at all. I felt so much better after a couple if weeks and only needed to take them for two months (and didn't relapse). If you're not being prescribed anything ask your GP for something to help. You're being proactive, and that's the main thing, so good luck. Do feel free to message me any time (you can personal message me if you want the content to remain private). Hugs xx

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A blue jean throw will be nice and comfy for the colder months great idea

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maybe Docmel,if hubby and younger son were to be introduced by you to this site and read some of the comments by others they might gain a little insight into your condition and be a little more understanding of how it affects your daily life.just a thought as it is so important to have loved ones on your side...........regards and best wishes Ski's and Scruff's xx

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This is a really good suggestion Ski's x

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Hi docmel, I would definitely recommend cognitive behaviour therapy. It helped me tremendously. It will help you to change the way you feel about your situation and make you realise that you still have a lot to offer yourself and your family. My husband is extremely helpful and caring and completely took over to the extent that I felt surplus to requirements. Obviously, it will not cure your respiratory illness, but mentally it will help you to cope with your depression and reduce stress without judging you. Your activities and hobbies are just as important as your husband’s. Make some space for yourself and move your hubbies things out of the way when he tries to take your work space.

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I can't add anything to all the wise warmhearted suggestions here but just want to send you all my sympathy. Claim that space! and please let us share the progress of the blue denim patchwork for your nephew. That's a lovely idea.

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Thanks to everyone for the rallying around I needed the boost.

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Hi Docmel

you have loads of good ideas from these lovely peoples, I am sending you a big hug as I now exactly how you feel, take care xx

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