Struggling

[docmel]

To be in 10 liters per minute of oxygen when amubulating or really doing anything just really limits me cause even with that I can not walk for a long period of time I still drop to 88 % on 10 lpm. Just gripping here as I can no longer see my purpose in all of this ... I sit and watch tv, eat, read, and of course the bodily functions. I just don’t know where I fit in anymore my contribution to society is nill. Pondering a very boring future 4 walls.

[Damon1864 Volunteer]

You do have a future, why not try a hobby, or do a course. I felt the same, but have been dooing an open University course for the past three years.bit has given me a lot of pleasure and continues to do so. I have a purpose in life and a lot more confidence. So please never think you have no future.😊 Bernadette xxx

[docmel in reply to Damon1864]

Well my hobby crocheting cost money oh and I can’t go and pick out my yarn for my simple blankets. Next sewing would be awesome but I’m not Very good at it. I just keep trying is all I can do hobbies I used to be an awesome person with goals in life...sorry all just down.

[Karenblue]

I think the same to can’t walk do anything just sit n eat

[Jeanne1125]

Oh my! Please don't ever give up. I'm new tell me how I can help.

[Damon1864 Volunteer]

Never give up, there is always something or someone to fight for. Yes this disease takes it out of you, but please try to be positive. There are a lot of good things about your life, all you have to do is realise that. 😊Xxx Bernadette

[docmel]

I guess just pray I’m not sure how to occupy myself as all my hobbies are just as boring as with little purpose as well. Just do them to occupy time.

[Harry13 in reply to docmel]

Sorry to hear that you are feeling so down docmel. I've not been out for two years or more and it does get you down. buy your self some paints and doodle.

You never know you might be another Van Gogh. Good luck. xxx

[Tricity125]

Hi. Things do get on top and try to bring you down quility of life is every think but same apply to us as active people life is what you make it try to set 1 small goal a day I've been there house bound for months fought back and increased my fitness till I could get out this was a huge effort for me but it's what I wanted do you have a garden have you any support there's things you could aim for I got a telescope when I could not get out. And. I did quite a lot of bird spotting. I got to see. Some really close up of some Right colourful young passing birds. Well that helped me painting poems in this wonder age of the inter net Are you able to get on line

[docmel in reply to Tricity125]

Yes I get online and I used to think I would write a blog but about what my life is like but I just feel like that is going to bring people down. My husband makes busy work for himself so he doesn’t have to be around me....I’m just

[Tricity125 in reply to docmel]

I know. It's tough I had a partner but we. Are more or less separated. If you can try to talk. It's also very difficult for your loved ones watching you struggle I like to think if other way round I would of done more or handled it better but we all different plus I've had to become stronger minded she just gets to stressed and it gets her down I've been there though when it seems she avoids me sadly this illness is a cruel one but. If going to survive must really dig deep Iam struggle from moment I open my eyes to just sitting upright takin my meds is enough to make me breathless then washing and brushing my self. Tidy. That's a real big one to breakfast time I do above I feel kind ok and think well at least I've pushed myself but no matter how strong. It will time to time try to bring me down. I can be sailing along nicely then a slight up set can trigger like a over whelming sense of panic or pressure. Only for a few minutes but I learnt that this is normal but must fight it or suffer. Depression and feel low. This is a real bad one once it's done it's worse and takin over then must try to be super human and kick it right up the back side negative lead to a downwould spiral Please. Fight it can't let it win

[Jeanne1125]

I just retired after 30 years in a school admin....and have NO hobbies, my bad. Smoking took up most of my time, so I know how you feel I have 3 children and the youngest is in college away from home. Be positive.

[docmel in reply to Jeanne1125]

I really try to be positive it has been very difficult of late.

[O2Trees]

People are saying 'don't give up' and that's right. But I also wonder whether just now you need to know it's ok to be down and then to know that we have your back and will fight for you. There's quite a lot been written on the tyranny of enforced positivity. I know for myself sometimes I feel I just need to be allowed to feel cr*p and sorry for myself and just have that recognised. Then, having that acceptance, it's easier to come up again.

We are here docmel but Im wondering who you have in your offline life. There are befrienders who visit those who are alone, who you could probably contact through local volunteer agencies when you feel up to it. Maybe you could also call the BLF helpline (03000 030 555 office hours) and talk to one of their nurses about this - Im sure you won't be the first to bring this feeling of hopelessness to them. Thinking of you

[docmel in reply to O2Trees]

Well I live with my husband and my two grown sons. I just went on palliative care and this was to improve my quality of life but so far I haven’t seen an improvement as my biggest limitation is not being able to get out because of my oxygen demand. When I go out it is with two tanks that would last about 4 hours but they are heavy and combursome. The only times I’ve been out this year is three times with a friend who is scared I might have an issue and run out of oxygen which happened once and I do my best to manage it but sometimes it happens. Then I’ve been out to the various doctor appointments and my yearly evaluations. It’s hard is all.

[O2Trees in reply to docmel]

Yes, it's really hard - I find it difficult to imagine how hard, and frightening too. Is your husband helpful? Do your sons still live at home? Really hope you feel a bit more 'up' before too long. In the meanwhile keep in touch - see how many of us are rooting for you.

[Rebecca6 in reply to O2Trees]

You are always so wise.

[O2Trees in reply to Rebecca6]

Many thanks Rebecca, I just try to use my experience as a guide - sometimes it works, sometimes not. Hope you're having a good day

[docmel]

I’m trying all to be positive.

[hypercat54]

Just been looking at your other posts and I was wondering whether it is still an option for you to have a lung transplant or not? And whether you would want to go for it now. You are young but it has to be your decision of course. x

[docmel in reply to hypercat54]

No transplant is out....

[Hacienda in reply to docmel]

Waiting for my Transplant gives me the will to Live each Day, so I can pick up that phone and receive the Call. Yes, it is Frightening, But at your young Age there is a future for you to live. Mental Anxiety is so scary. Please Please Love yourself, you are a very Special and Beautiful Woman. Love n Hugs. xxxxx

[Dedalus]

II can truly empathise with your situation, even though I can walk a little further on less oxygen. It is sometimes so debilitating and of course you're going to have these thoughts and get depressed from time to time. However, I'm sure your husband, as well as others, want you around for as long as possible. You never know what is around the corner in the form of new treatments for this condition, so definitely worth your while to be here and be you, even with limited mobility. We all have good days and bad,so I hope you feel better soon and get that fighting spirit back. Sending all best wishes and hugs x

[docmel in reply to Dedalus]

My family... we just had Memoial Day weekend and my husband who works on computers had his entire weekend scheduled out to set up both hardware and software for a server he is setting up here in the house mind you he already has 3 of these set up and running. We were in the same room for several hours spoke maybe 10 sentences to each other. He is having a difficult time as am I with all the changes that have been occurring since N0vember 0f 2017. My sons we live in the same house but I only see one of them everyday Nikki he assists me with dog walking and makes sure I eat. My daughter and grandchildren I haven’t spoke to them in a month phone tag here lately. My brother doesn’t even call. I hate feeling unproductive. I used to work two full time nursing jobs back i the day. My sewing and crocheting cost money without any return plus I’m not that good at them. I was a work horse and now i contribute a disability check that isn’t even a 1/4 of what i made prior to becoming disabled. Yes I’m Lucky to be here but aren’t we all? What sets us apart? Is my purpose to become like Jabba the Hut? We are talking about a person whose greatest asset was taking care of people. I am contributing less and less here at home. I get up with hubby make him a cup of coffee while he supervises the dogs doing their business. The next thing i do is make coffee for hubby’s moving mug and then braid his hair. Then from 630 am to 4 pm I watch tv, eat, sleep, and read. Throw in a couple of dog walking supervision’s, bathroom trips and snack runs to the pantry this is my day....I’m glad to be alive but don’t like to feel Iike a drain on society. Thanks for the well wishes perhaps I will get out of this funk soon.

[Dedalus in reply to docmel]

Bless you - you're gauging yourself against how 'productive' you are and how you think others perceive you. PLEASE don't do that. I think its time you told your family how you feel - its as if you're all treading on eggshells because you don't know how to broach the subject of your health with each other. They are probably taking the lead from you, and if you don't mention it they won't because they don't want to upset you!! I'm sure they'll be horrified to think that YOU think you're a burden to everyone. Please discuss and get everything out in the open. Even if you/they hear a few things that aren't too palatable you will feel so much better than just imagining (usually wrongly) how others think and feel. Give it a go!!!! Hugs x

[wheezyof]

Hello Docmel,

Your description of feeling so down, on the scrap heap, is how (I think) all of us feel at some time with these terrible lung problems.

If your oxygen lasts 4 hours but is cumbersome I think there are possibilities. Can you be issued a concentrator for outings? Would it suit you? Do, please ask your oxygen nurse about it, they are really only the size of a shoulder bag.

Getting out can be difficult but how about joining a Breathe Easy group? As everyone there has or is a carer/friend of someone with, lung disease they will be very understanding of your limitations and any equipment you bring.

You cant get out to get yarn for your hobbies? Look on line. If you shop around on line there are some lovely yarns but prices vary so looking takes up a lot of time!

Home made crafts are great as gifts, most people love them. Well my daughter-in-law is an exception and allowed her boys nothing home made!

Hospitals are always on look out for lots of things. Among these are mittens for babies in incubators, the mittens need a hole for canulas, crochet octopus for prem babies, twiddle muffs for elderly people.

That way your crafts are not just time fillers they are wonderful gifts.

If you look around there may be a knit and Knatter or crochet group near you. They are held in libraries, churches or village halls. Again most of the members of groups like that are lovely. I was introduced to Knit and Knatter by a friend from our Breathe Easy group.

Meanwhile please keep in touch with us, your friends, on here

sending hugs xxx

[Joy123 in reply to wheezyof]

Hi, I don’t think there’s a portable concentrator that delivers 10lpm?

[Hacienda in reply to Joy123]

No, mine will got o 4 only. xxx

[sassy59]

I just want to send you love and hugs docmel. You are on a downward spiral just now which is understandable but please keep talking to us on here.

We can all suggest things but really you need the motivation to want to do anything just now. I wish I had answers but I don’t.

Take care and thinking of you. Xxxx

[donut43]

Like damon 1864 says, get an interest to take your mind off your considerable difficulties. Bird watching painting books or a course suited to your situation. Knitting crocheting with gentle exercises in between. Never give up do your best in everything.

Dan

[kernowdame]

Hello Docmel. I hope you are feeling less down this morning. I have found making knitted and crochet things for charities helped me feel more useful. I went on line and found various places, a couple even said they could provide the yarn. But I recognise how you feel and send best wishes.

[docmel in reply to kernowdame]

Did that two years in a row hats and scarves for the homeless I’m broke and well not that good at crocheting I know 3 stitches.

[Joy123]

I’m sorry to hear you’re feeling so low docmel but you’ve got a lot to be grateful for having a husband and children at home is amazing. Lots of us feel like you sometimes and live alone (my family all grown and left) and have to struggle to do everything for ourselves. As others have suggested, a little excercise, no matter how small, walk to the kettle etc. and make a cuppa, fold the washing, little jobs but all exercise. The more you do the more you’ll be able to do and I’m sure you won’t feel so low and worthless. I’m alone, oxygen neatly 24/7 but I still look after myself. I eat properly, I don’t carry any extra weight, do lots of lung clearance and, as I’ve said, do as much as I can. I sit down a lot but try to keep going. It’s hard and sometimes I’m very low but I’m determined to keep going. Good luck. Joy x

[docmel in reply to Joy123]

I do walk about my house to the kitchen, bathroom, and family room. I supervise my dogs at least once per day while they are doing their business. I get up shower dress just like anyone else. We do laundry on Sunday and i help fold and i put my own clothes away. Are these thing sopost to be my goals now?

[Hidden in reply to docmel]

🙄

[mskpjb]

Hi docmel sorry you're feeling so low. It's hard to feel trapped in. Have you thought about getting a mobility scooter ? You could carry two cylinders on the back and even if it wasn't possible to go in many stores with them you could go to local park. I'd be lost without my scooter and try to go out for no reason other than to get some fresh air. Sheila xx

[john110865]

Docmel

The idea above from Sheila sounds worth a try? I often see the scooters around, either parked by the pub, in the supermarkets or walking the dog normally

Like you I am on 10L / min ambulatory, but I manage to get out and walk the supermarket, sure my SPo2 drops to 82 ish, but I manage. Just don't give me a hill - my dogs escaped 1 day and it was hell!

So, questions, I do not see the reason for your Sats to be low? Are they low all the time or just on standing / walking? Be interesting to compare notes!

In the meantime, keep well and listen to this youtube.com/watch?v=y6Sxv-s...(Not working as expected?) - I bet you SMILE

[docmel in reply to john110865]

I have usual interstitial pneumonia a form of idiopathic pulmonary fibrosis. First symptoms 2008 diagnosed in August of 2010 via open lung biopsy and have had yearly check ups since 2010. I was told 3 to 5 years to live and I’ve beat that by a few. I wouldn’t be hanging out on a site for no reason....

[AviaTorBlue]

I can relate to your concerns. Breathing difficulties, wallking beyond five minutes imposssible. But the recipe that brought me to this place not completely same as yours. I found some help in the past and I can be productive in-house. But I am housebound for not being able to join in activities due to limitations. Doctor suggested I fit some exercise in regardless. I thought, "Get real". But seeing Pharrel Williams video has sparked me to do small bouts of dancing at home. To go outdoors for exercise, well the heat and humidity would thump me. The sun puts me to sleep with no trouble. Have fun looking for your answer.

[lKeith]

docmel

Hi, please do not despair you need to ensure that you not become a spare part. Think more of yourself & less on society. Take up an interest at your pace and don't try to contribute to the greater society instead contribute to your own well being. Don't feel down hearted, most on here are not as able to do things anymore but they keep going & find something to keep their interest.

IKeith