Hi next episode in my turbulent life several months. Ago we were asked to go to a murder mystery night I agreed under duress thinking it would never happen it is run by ageing better for over 50 s it was to get me to go out not been out on a night since December it was franks birthday this week so I said I'd give it a try .So stayed in bed till 12. Had a bath then started to get ready slowly very slowly Had a Bad panic attack son came to pick us up had to be literally pushed into car Breathing atrocius.So we got there for 6.30 organisers mam on oxygen so she understood me .Started to calm down when worst nightmare my oxygen packed up it had been filled before we left it is a new unit so I was told kept making a puffing noise then stopped I am on constant but thought I'd try demand to see if that would keep me going wouldn't work either Didn't have our car because Frank was hoping to have a drink so son took us .Had to phone son to come for us early .Thought well we still have the other unit we were given another because one would not be enough if we had a day out now oxygen been put up and what happened when he filled it or tried to would only fill half way the other day for no reason at all liquid oozed out really brought it home to me how dependent my life is on oxygen and nothing we can do till Monday go out again on a evening doubt it .
What a night : Hi next episode in my... - Lung Conditions C...
What a night
Your oxygen supplier will have a on call over the weekend take Care Margaret
Dorothy
Thanks Dorothy I feel like I have a sign on my head saying kick me again Take care Dorothy
Aw!! How awful for you Margaret, this was beyond your control and spoiled what could have been an enjoyable evening for you and Frank. I am so sorry it turned out like this for you. Don't let it spoil any outing you may plan for the future but do understand how you feel..I am not on Oxygen but suffer anxiety attacks and I try to ignore it when something is demanded of me, sometimes it works and others it doesn't.
Thank you Annie I had to really push myself to go though my heart was going so fast as Ieft home took ages to get back to a reasonable state take care
As well as having COPD, I have suffered with anxiety since I was a child and now my youngest daughter is ill again and I know that I will have to come up trumps again to help her when all I want to do is bury myself away from all the stress, as well as my older daughter getting married again in October (she has the same illness as well) - it's all a nightmare and I have a 'Frank' as well who is fantastic.. It makes me feel guilty when I leave it to him to cope and I just feel useless as I have always coped in the past and dealt with everything. Its a strange feeling to not being in control!
I know how it feels to feel useless can't stop worrying about everything also and not being to do anything makes me so mad I'm no nearer to getting rid of pain and when I'm anxious it seems worse I'm just so worried about the future I thought I was turning a corner but the last week has completley floored me .Hope things get better for you and you don't take the strain of the wedding on yourself just try to enjoy it hope Daughter is feeling a little better you to take care
Hi T2D. You got yourself out and had a good time until the oxygen issue. Well done that is fantastic. Please don't let it up you off as you are doing really well. Take care sweetie.
Thank you but like I say I think it will be another 8 month till I repeat the excercise can't chance being away from Oxy just yet .I was really trying too Best wishes
Hello Time_2_drink: Are you able to get a portable oxygen concentrator that gives you the amount of oxygen you need? That might help to ease the anxiety knowing you have the oxygen when you need it for sure. At least you can always use one or the other as a backup to take along with you. That is how I use to do it. Thankfully, I do not need oxygen anymore after routinely exercising (exercises to strengthen the diaphragm) , taking appropriate vitamins/minerals and quitting smoking. Good luck and do not give up trying to live a fun and full life.
Thanks the oxygen nurse said I could loan one to try out if we wanted to try a couple of days in out touring caravan I don't think I will get one to keep glad you don't need oxygen now
Thank you. I took out a loan to pay for a used one I had found advertised for sale.
It has been a year and a half with no needed oxygen, but I still keep my concentrator in the car when I go places. That shows you just how anxious and nervous you get if you have ever been in need of oxygen as you do not forget the horrible feeling.
I will not resell my unit ever. It will always be a part of my life even if I do not have to use it.
Ii would feel just the same as you always err on cautious side. If I were to buy one. Then it would need to be cool Netanyahu flow. Typical of me I'm mouth breather so demand no good Unfortunatley and still getting falling sats .Im interested to find out what excercises you did to help you come of oxygen although I doubt I will ever be able to but would like to be able to do the regime you did to make me a bit fitter and healthier so to speak regards Margaret
Most all of them are the same as any exercises that strengthen the stomach muscles.
We have a TV show here called "Sit and Be Fit" that I now watch and exercise by because I have to have some order, also, to do exercises, or they don't get done. I also went to rehab for 2 months, first, in the beginning. Even the stationary bike will strengthen those muscles. If you can feel the exercise in the stomach, then you are strengthening the diaphragm as well.
Also, way back then, I did the breathing exercises. They help to strengthen it too. I, too went to the Better Breathers classes. They teach you those breathing exercises.
The best breathing exercise is the 4-7-8. Breath in to the count of 4. Hold to the count of 7. Breath out to the count of 8. Do them daily. See the links below.
drweil.com/videos-features/...
drweil.com/health-wellness/...
Thank you for your help will start to practise once again thanks .
you have a "full" emergency kit! 👏
i am on oxygen 24/7 and when going out, i carry the tanks. i always take extra just in case something goes wrong with one of them.
It can be a nightmare trying to get it right believe me last night frightened me I have no back up only have liquid oxygen and concentrators at home. Plus the large emergency tank for power cuts .
I understand how you feel Dorothy, but you must not let one bad evening stop you from going out again, I have Bronchiectasis ,Asthma and RA, and I do many times get the panic attacks, but have taught myself meditation and it does help, I hope it will help you.
I hope you will feel a lot calmer soon.
All the best to you,
Didgerdo x
Hi Bit of confusion my fault in way I replied to Dorothy thanks for reply I get so wound up its very hard to relax I keep on trying all I can do Take. Care Margaret x
What a fright you had Margaret but it will be sorted out and you will be able to go out again. Things do happen to you though. Birthday greetings to Frank. Xxxx
Thanks sassy I know I'm a walking well just about lol a Disaster Frank says thanks xxxx
I'm sure you just wish something would go right for a change, but look how well you did to get out in the first place. You've come such a long way - don't let this spoil your progress! xx Moy
For something to go right would be a flipping miracle lol just when I thought I'd turned a corner so to speak I get bit on the bum again .Take care xx
Stick a plaster on and have another go! Lol!! xx
Yep. The only way is up. I hope lol x
Hi T2d I have mentioned to you before that I changed from liquid oxygen to cylinders for the same reasons that caused you problems. I am on constant flow at 4lpm and atleast when I go out ( always with a full cylinder ) I know I can keep an eye on what`s left in it. If I`m in a cafe I`ll turn it off for a while so that it lasts even longer. I don`t understand why you stay with liquid oxygen. Take care, Sheila x
Hi Sheila I have pain in shoulders for which I had gold injection so find the cylinders heavy to carry. And from what I'm told they last even less than liquid so having a day out would be a no go Best wishes Margaret x
Hello..stupid question....whats the difference between liquid oxygen and containers?
Eileen
The liquid oxygen has a mother unit tank that. Stores the liquid which you fill your portable with good job have Frank. Or couldn't do it. The cylinders are like they have in hospital someone maybe able to explain better .
Thank you... so is it oxygen in the form of gas?
I live in Swizrland and my daughter is on liqid oxygen 24/7. She has been considering a concentrator
I don't understand. How does she sleep with it the liquid needs filling every couple of hours and not advisable to use 24/7 I think we are at cross purposes if you look on Boc website you will be able to see what we class as liquid oxygen .
She has 2 mother tanks for use at home and overnight. She fills her two smaller tanks from this when she goes out. With both smaller tanks she can go out for the day. We also have oxygen stations in some places where she can fill up if necessary
What a good idea to have filling stations that's something I don't think will ever happen here .
Recently filled up on the ststion in Lucerne.... nice room to have a rest too. They are run by the swiss lung foundation. Get on to the BLA about it.😀
I Don't see it happening in my life time .But what a marvellous idea and a pleasent room to rest also very forward thinking and not to worry about having enough oxygento last a day out with the Swiss lung association are to be applauded take care .
You too and i hope you soon make it out again. Perhaps a beta blocker would help to keep you calm.
Yes basically .
Yes they are heavy, I can`t carry them so I use a trolley or my rollator. But if I was going to be out for a length of time, my son would take me and carry extra cylinders in his car. It`s all a learning curve isn`t it. I`d love to just be able to get up and walk to the bathroom without a cannula stuck up my nose ! But I can`t so I just have to get on with things. Not without a grumble or moan - I`m no saint ! Keep well, Sheila x
Can I ask how long the cylinders ask the reason I ask is I have been told about a breath easy Breathercise group about 10 mile away I was told they sometimes go on day trips. And even to the theatre. I can dream what I am getting at is. I use a wheelchair and they hire a coach and have a full day out how would I be able to do this just looking at logistics isn't it funny or not how much we took for granted after last nights catastrophe. Played solitaire till 3am to try to calm down then half asleep at 7am took water tablet 10am thought must take water tablet so duly did forgetting I'd already done it hence I'm stuck upstairs near the Bathroom .
i am stage 4 copd and on 3 LPM constant flow. the portable concentrators use up the battery power very quickly when on constant flow, and i shallow breath so "pulse" dose does not work for me. when going out, (theatre, dinner, etc) my friends all carry a canister for me. i also use a walker to hold the canisters because they are too heavy for me. (i use the size
up one level from the wine bottle size). the thing i am worrying about now, is that my legs and arms are feeling quite weak and i am wondering if this is something anyone else has experienced?
i used to go to pulmonary classes but stopped due to weather constraints. it is happening quite quickly and "wheelchair" keeps rippling through my thoughts! i am also finding it tough to push doors open open...you know the heavy entry doors. any ideas??
I am worried that the concentrators Battery would fail whilst away I am on constant flow 3/4. and a mouth breather oxygen nurse. Getting us a loan of portable concentrator. So we. Can try a couple of days in our touring caravan if it doesn't work out Unfortunatley will have to sell it .We would need to be on a hookup.and not to far from home there's also the logistics of cooking oven is gas so that's a no go .Am worried that concentrator. Won't work in bed if I manage to sleep .I use a wheelchair I'm not brave enough to walk around with oxygen .I have found on a morning my feet and hands are very painfull sometimes cramping I don't know about you but I find the bedroom Drawers heavy to handle they are solid pine and sliding the wardrobe doors hard work makes me feel useless once again sorry you had to stop PR Like you I find things escalating rapidly from Xmas present buying 22Dec planning Xmas day and night out with in laws to be took in hospital next day and on oxygen life as I knew it over just unbelievable .
My cylinder lasts 2 hours on 4lpm constant because I`m a mouthbreather. I`m determind to keep my legs working as long as possible so I won`t give in to a wheelchair. I have now bought myself a 4 wheel rollator as the cylinder is too heavy for me to carry. It`s brilliant because it also gives me something to lean on when walking
and a seat to sit on when I want a rest. I`m sure they would carry more cylinders if I wanted to join a coach trip with a Breatheasy group. Good luck with the water tablet ! I`ve done the same myself on occasion. Sheila x
Hi wouldn't you think in this day and age with 3D printers that can make a gun. Body parts etc someone could come up with a solution for lighter canisters and a decent amount of user time if we were nose Breathers it would be a lot easier for us no restraints or I should say less restraints 2 hours is not a lot of time especially when you get stuck in traffic hope you have a pleasent day Margaret x
Yes I live in hope that one day they`ll come up with something a heck of a lot easier to carry about. I really wish I wasn`t a mouthbreather. The problem is I find any effort ,including walking, makes me gasp and I can`t gasp with my mouth shut. Hope you have a good day too. Sheila x
So sorry your evening ended like that Margaret. Were you enjoying it before your oxygen started playing up? You did so well getting there despite your feeling of apprehension. It was probably too much for you. You have a fair amount of appointments during the week and the visitors to your house, going out in the evening may be one step too many at the moment. I hope you have gotten over the trauma by now. I agree we should push ourselves but not so much that we get into a state. Have you finished your PR now Margaret, I'm half way through mine and really enjoying it. Talk soon. Love Lilian xxxxxxxx
Hi Lillian yes PR finished glad your enjoying yours I must admit since it finished Monday I've done no excercise. As such Tuesday night really gave me a fright. .The organiser of last night rang me this morning to make sure I was ok so kind she was really very nice I'm going to use my pedals this afternoon when water tablets have done there job and thinking of going to a breath easy group who do excercise next week I have rang to make sure I'm not the only one with oxygen its about 10 mile away. I must keep excercise up but need structure love Margaret xxx
You have a lot of people looking out for you Margaret. Didn't the PR six weeks go quickly, I hope you carry on with your exercises, I hope I do too. Like you, I need structure in my life, not too much but a certain amount. The breathe easy group sounds good, I don't think we have them where I live, PR has made me want to do more. I don't really like groups of people but when you all have one big thing in common I find it good. Enjoy your pedalling this afternoon. I really admire you Margaret for all that you have achieved over the past few months. Belated Happy Birthday to Frank, hope he is well. Love Lilian xxxxxxx
Frank says thank you. We did. 8 weeks PR The breathe easy group not in our town it's about 10 mile away or just over I to don't like big groups not got on pedal yet will do it when watching tv later. Love Margaret xxxx
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