The day started as normal, after a night on oxygen. I looked outside to see blue sky's and bright sunlight and thought sod this being ill all the time I,m going to have a day of being the person that I used to be before my lungs decided to give up.
Today there was going to be no hose pipe following me around the house and no cylinder fixed to my back. There was going to be 'no oxygen for one day!', a slightly crazy thought but one I was determined to carry out
I started with an outdoor exercise routine out on the lawn, there would be no records broken today but I wanted to see what was possible on 25% lung function and no oxygen support.
Each exercise started ok but ended with a few minutes of me recovering slumped in a chair gasping like a freight train. Iv'e always been told that if your only out of breath and there is no chest pains then its ok to carry on.
Well there was no pain so I pushed on with a few light weights and even managed a little jogg up and down the lawn but that did end with me breathing on maximum throttle for a considerable time. The good thing was that all my breathe easy training kept me concentrating on breathing correctly, concentrating on the out breath and not getting panicky, after all why should I panic, this uncomfortable suffering was completly self induced and very avoidable.
After a rest I noticed some garden rubbish that needed clearing so I set about that. once again there was lots of huffing and puffing with a little head spinning thrown in for good measure but I kept going slowly and eventually finished the task.
There was a folk festival on at Upton Upon Severn only 5 miles away so the family decided we should go and have a look round. Its very flat alongside the river severn so its a good place to go for the likes of us with clapped out lungs so off we went, my wife, daughter and me. I took the portable oxygen but left it in the boot of the car.
We strolled at a steady pace round the town taking in the music, watching morris dancers and checking out the stalls that were set out along side the river.
I even had a 1/2 pint of stowfords press cider while my wife and daughter had full pints of some stronger vintage westons apple juice. Yes it was down to me to do the driving again!
Anyway still going at a steady pace with a little light headedness and puffing I managed quite well and the oxygen stayed in the boot.
I was determined to not look ill today, mix with the normal people and not show my weakness to all around me, there's no doubt I had to think carefully about what I did but I managed it amaizingly well.
We returned home to spend the last few hours of sun on the lawn resting, I even managed to do some more light exercise.
What a day it was, I stopped to think later how did that happen as here I am on the lung transplant list with a quarter lung function, surely that just should 'nt be possible.
So everyone out there don't give in to your lungs not working, be determined and get out there and do things, ok at a slower pace but carry on carrying on.
I'm off to Breathe Easy now, with my oxygen, and I'm going to thank them for keeping me going at this level of fittness, I'm certain if it was'nt for them, then I would'nt be able to do the things I can today.
Tony Come on everybody if I can do it then you can too.
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Determination like yours has to be congratulated ! Well done Tony. You put my puny efforts of walking on a treadmill to shame... I never even lasted 60 seconds before I was gasping like a fish out of water... LOL
What a amazing person you are so glad you had a great day ,after reading this I'm going in to the garden do some excircise then plant some plants and count my blessings I have 37 percent lung capacity and of late was feeling sorry for myself you gave me hope thank you all the best for the future
I have experienced panic attacks Jandon so I know what your talking about. The first one I had my wife called an ambulance, thinking I was having a heart attack.
Queuing in the chip shop or at the cinema seemed favorite places but I eventually found a way of controlling it.
I found if I breathed out untill my lungs were completly empty and then made sure I breathed out more than I breathed in from there on, my heart would stop pounding and everything would settle down.
The attacks got less and less frequent,untill I don't even think about them now.
Your right about not overdoing it, so I make sure that I set the pace when out with others and never try and keep up.
Thanks Jandon, I enjoyed your blog on the parking incident, you certainly put him right did'nt you.
Well done Tony, you've inspired me. I'm on oxygen would be scared to be without it. Going to do lots of things today that make me puff plus extra exercises. Wish I had the courage to leave my oxygen bottle at home when we go to 'the wedding' in a fortnight, but I reckon I would panic.
Hi Lib, Its amaizing how reliant we can get on our oxygen support but there are times we can go without it. I know everyone is different but its worth testing yourself occasionally, you may be surprised, I know I certainly was. You have to just stay relaxed and go steady. It does pay to keep the oxygen nearby and just slow everything down to your pace. I have been told to try and get 15 hours a day on oxygen but that leaves 9 to experiment with eh'
Listen to your body, you can normally tell when your sats are getting low.
Tony.xx
A very inspiring blog, I enjoyed reading about your day and wished I had been at the folk festival too. You have given me the confidence to go to our local folk festival in Leigh on Sea at the end of June.
Cheers Raptor, your right too, no beastie is ever gonna grind me down!
Ok Mr Miracle man, you really are! Congratulations and well done, amazing what sheer b - mindedness can do. I do not quite have the courage to walk without but will try just sitting in the chair, see what you've done!
Don't worry Tina I started in the chair and then found I could walk around the room for longer and longer periods. The more relaxed you become the easier it gets.
Infact standing straight seems the best position to be off oxygen and nothing happens suddenly. I was on permanent oxygen for 5 months before I had the courage to go without. The respiritory nurses and physio's only encouraged me to do it with a bit of caution and common sense.
I'm not too sure about Miracle man but I do push things a bit, only to get the very best out of what I have.
From what Iv'e read you are pretty amaizing with what you are able to do at such an early stage. You will improve but not overnight. just keep on working at your general fitness, I'm sure its been the key to my ability to do a lot more even though my lung capacity has stayed much the same.
Your body, like mine went to hell and back and it can take a few years to recover from that kind of shock to the system.
Breathe Easy deserve a lot of praise for everything they do for us all. They helped me get back from a very low place and now continue to encourage me to stay fit for a possible transplant operation.
Its amaizing what can be done on a very low oxygen exchange if you keep your body in shape.
Hi nixy, Its all too easy to sit and do very little but it dosn't help our situation. I'm glad my little blog got you up to do a bit of something. I hope it went well, Its said that we should use it or lose it so I intend to keep useing it eh'
I read this & I,m determined to get as far as the stone bridge in Weper park I havn't walked that far in two years but you have spurred me on & even if it takes me two hours to get there I,m gona do it
Hi Karen, have you managed to get to that stone bridge yet? I hope you have and it has given you something to build on. Exercise is such a key thing to getting the most out of ourselves and setting a few reachable goals gives you something to aim for.
Hi I sure did, didn't think i was going to make it as it,s 18 months since I last walked that far but, I used my inhalers & made it, I needed a 20 min stop when I got there but it was no hardship as its such a peaceful spot
Thank you for being such an inspiration
Karen xxx
Tony you must be feeling so proud of yourself,& so you should! It must have been a marvelous feeling for you,like a bird suddenly finding there wings!!
Please don't overdo it though,I am sure you would be sensible,you are no fool!!
Once you get those new lungs, you won't know yourself.
Its great to find you can do things you think are out of reach. You just have to stay between your own boundaries and as long as your body dosn't ask for more oxygen than you can supply then all should be well.
Most of my life is spent on tick over with the occasional burst of full throttle but it could all change of course with those new lungs.
Untill then I'm happy with my situation and will continue to push my boundaries with care.
Thanks wendells. What was the outcome of your car incident and how is hubby now?
Hi Tony,I must admit,I am a bit like you,& push the boundaries at times,to test myself.
As for hubby,I thought the biggest problem,was going to be the new hip needed,but head injuries were more severe than first thought,& unfortunately just found out today,looks like this won't improve.So feeling a bit stunned still at the moment,taking it all in.Will keep you updated,
dall your blogs are always a delight and descriptive enough to make us all think we are there with you. Please keep cheerful and also please keep posting. xx
Thanks Lavender1, I always try to take people to my place when writing a blog and also show a positive outlook on what can still be done. Even though we all share the restriction of breathlessness, I believe a lot of us can do a little more than we think.
Do your best to give up those ciggy's as that will help your long term health for sure.
Well done that man ! Don't forget though that the oxygen is keeping your other organs healthy, we don't want to hear next that you're having trouble with elsewhere
I've been meaning to sign up for our local PALS exercise classes since I finished Pulmonary Rehab a fews weeks ago, now your blog has jogged my elbow to give them a ring tomorrow and get on in there !!!
Thats Great elian, you get on in there because nothing but good will come of some regular exercise. Think long term and see where your at in 6 months compared with now. It soon comes round and you'll be glad you did.
Its good to see my blogs can help others push thier boundaries to get more from themselves.
I know exercise has helped me and I owe a lot to the Breathe Easy Team for setting me off in the right direction.
I had a very low starting place and look back now knowing the hard work has been worth it.
Hi Tony, I'm reading the old posts. Amazing stuff on here. Now it's a bunch of fluff! More like facebook! How are you feeling? How about that post of yours? No oxygen for a day. That was 👍 great!! Ruby🌹
Looking back over the old posts can be fun and interesting cant it. Glad you enjoyed this old one of mine, in fact reading it again I may have just inspired myself ha ha to get back to doing more exercise and the pushing those boundaries.
Think a day without oxygen could be asking a bit much these days but never say never. Just gotta get through another winter cus this cold weather is confining me to home which does my head in as you can imagine.
I agree there's a bit to much fluff on HU at the mo, maybe we need some more serious stuff like another Dall style, 'singing for lung exercise and breathing control' video. Ha Ha that got you worried didn't it .
I might put a post on later about todays visit to my amazing chest physio who has been with me right back to my ICU days 6 years ago X
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Come on everybody if I can do it then you can too.
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