Self consciousness is such a battle of wills. But I wasn’t giving up lightly- Today the plan was to venture out with my new more compact homefill cylinder with full intentions of heading into town via the train all by myself (first time with oxy) to catch up with an old uni friend I see once a year (oh my gosh public transport my vulnerable mind cries). Family member ask do you want me to come with you? (thoughts going through my head-“Yes please hold my hand”) However my determination says otherwise. “Thank you but I’ve got to do this for myself!”
Of course there was a little creative planning required for example getting to the train station which sits halfway up a steep hill. Instead of being dropped off at the usual entrance where there’s 6 steps up, I asked to be dropped of further up the hill to go down 20 or so steps. This also meant a longer walk along the platform to the ticket office. The incline is where I struggle the most.
I’m not going to lie I was nervous being on my own. The outward journey went smoothly. I had a great afternoon catching up with my old friend. The return journey was a little more difficult. I forgot to factor in the peak hours and found myself on a train full of people, probably tired returning home after a full days work. The train departed and apart from the rumble tumble of the train I felt so conscious of the noise the pulse setting was making. I know it sounds louder for me than it is for others. I know I could have set it to constant flow but I didn’t want to draw anymore attention to myself by moving. Silly I know! Battle of wills- Some you win some you loose. I’ll be better prepared the next time 🙂
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BreatheasyBe
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Well done you!!! Give yourself a pat on the back!! What you have just done isn't easy or at least I don't think it is as I haven't gone out with my oxygen yet even though I've had it for about 2 years . I use it at home 16/24 and its in the car, I use it to recover from a wander round the store. I like to be invisible. 😀
I was sort of forced by the council putting up bus lanes throughout the city making it impossible to drive to many locations near the centre. I feel we are being unfairly discriminated because these bus lanes are restricting many of us from going to certain areas or we have to stump up extra to get there by taxi even if we have our cars sitting at home. The bus lanes in Glasgow are now covering a fairly large perimeter around Glasgow Central station. There is no concessions for the disabled cars driving through the bus lanes just big hefty fines.
Yes the noise at the beginning does sound and you do feel as though people are looking at you when they are not it does sound louder than it is. Just out of interest how big is the cylinder what does home fill mean. I have quite a big bottle. Did have a small one but couldnt have the pulser thing that helps save oxygen. We were told couldnt be done. So just being nosey
Hi Spacecar1 I was originally given a canister the length of my back that could only operate on constant flow. A rucksack was provided for that one. It gave me 4 hours use at 2 litre/min. The canisters for home fill are two different sizes. I’m using the smaller one for short trips as they are still quite heavy. Mine fits into a tote bag. The downside is you only get around 1hour 20 mins constant and only one setting at 2litre/min is available for constant or around 5 hours pulsed at 2litre/Min, however on the pulse setting there’s a range between 1-5 litres per min (timings would be different to reflect the change in setting) for the smaller of the two. The larger one gives you around 2 hours constant around 9 hours pulsed again at 2litre/min and has the options between 1-5 for pulsed. Make enquires and let me know how you get on. I forgot to say what homefill is. Basically we get a concentrator it is quite large a bit bigger than a small suitcase with another small cabin sizeD machine sitting on top of that. We can attach the cylinders to the machine and fill them up ourselves as and when we need.
Thank you so much. Might have a word with our oxygen people. We do find the pulser thing does conserve the oxygen but it's such a big bottle. Hubby has to be with me because I have arthritis in both hands and wrists so cant lift or carry oxygen. So trying to find ways yo help hubby with the weight etc. Hope you trip to b and q goes to plan.
Hi I’m not very fit myself and know exactly how you feel. I’ve been doing small things to gauge just how far I can go. Trying to push my steps total a little further each day. I’m not going for a marathon and the 10,000 steps is so far away. My target currently is 1500 and I’m only improving this figure by 20-100 steps factoring in the good and the bad days. And if I take a dip it’s like starting all over again. Good luck x
I know what you mean I get out of breath so quickly basically go to clean up after my dog. It has been so cold out I haven't done much. I remembered a school song and we use to do it while skating The Hokey Pokey, my dog gets pretty excited when I do it so I have been getting a little more exercise. He loves it. It is pretty silly though!
Well done. Doesn’t sound like an easy journey you had by train especially all the steps . You will get used to venturing out knowing how much better you feel for making the effort. I go shopping with mine and it goes to my weekly bingo session with me, the canister in my 3wheel trolley. People do stare but will ask if I need any help . Good luck 😉
What a great achievement BreatheasyBe, well done to you. Next time will be easier and now that you have proved yourself you wont feel the need to refuse a lift to the station. Proud of you x
Well done you! Do you know you can ask for Special Assistance on trains? I do this at airports too. I was visiting my daughter recently which involved me changing trains at liverpool. This can be tricky, because I had to change from northern rail to mersey rail without much time between trains. Ring beforehand and tell them where you are going. I was met at the station and my luggage carried. They got me on the train first and stacked my bags. I was met at the other end and taken to the lift and put on my other train. I was then met at the other end. I didnt need a wheelchair but these are on hand if there is a long walk. It takes so much stress out of travelling both by rail and air.
Well done BreatheastBe, be very proud of yourself. I’m reliant on O2 24/7 mostly 4litres, I drag my little cart along everywhere I go. Mines battery/mains operated so if I plan my journey right I can be out all day. Have you thought of getting something similar? I was very reluctant to venture out 2.5 years ago but, as I live alone, I had to. I couldn’t manage the station though unless i was having a really good day and I never know when those are coming. Joy. x
Hi Joy123 I’ve only just been given the homefill system a week ago and only need oxygen for activity such as walking and exertion. I’m sure I’m time I’ll be able to sort something out especially if I’m planning on going back to work. Im more tired today sou obviously stretched myself so a rest day it is - it’s awful outside very wet here so I don’t mind a day indoors. There’ll be itchy feet tomorrow x
Hello BreatheasyBe . First of all well done!! 👏👏👏 I also just looked back on your previous posts and was very relieved to read your meeting with HR was not the horror you thought it might have been. Very glad for you. 😊
I remember being very aware also of the sound of my oxygen , especially in the lift where people are in such a small space. But please believe me it gets easier with time and oxygen becomes like a second hand bag almost. People often look because they are curious, not so much because they are rude. Keep venturing out friend. And keep the updates coming.
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Phew, that was a hot one.
