Hi I haven't posted for a while so I thought I'd let you know how things have Been I actually done a post last night it took ages then I don't know what happened to it so here goes again .After a lot of chew I got a loan of a IGo portable Concentrator and 4cannisters to use at our touring caravan I did ask for more canisters they don't last long having been put up to 3and4. I've Been trying to get in touch with my oxygen nurse for weeks because she was going to sort it out for me so I telephoned her but got no answer then left message on her phone no reply then phoned and got a message saying she is off all of August so phoned O800 number 3Days on a trot kept being told would be ring back by this this time I was so frustrated Then decided to write a letter and gave it to Frank to take to where they do the walking test finally I got some feed back and now have A lone of 4 canisters need at least 2 more and Concentrator till September I find it a bit of a struggle with canisters but no aLternative because I'm on liquid I'm dissapointed that I can't use POC with wheelchair to big and I'm a mouth breather So we took caravan to a quiet country site not far from home not many there only 6 vans including ours and only saw 2 people in distance fine by me bit of a bind that Frank couldn't put the awning up hard standing pitch he was going to cook in the awning whilst I sat in van or vice versa But I had to sit in car while he cooked not very nice .On the Saturday we went into the little market town where I encountered a few stares of little girls the heavens opened so I bought some first defence then back to the van .There was a little country pub on the site and Frank really wanted me to go in son had popped up to see us so Under duress I went in after I had sent them to check it out found a little corner to tuck myself in with wheelchair only 2 customers it was tea time only stayed for 1 drink started to have panic attack and could not Breathe I wanted to go home but Frank had had a pint so couldn't took ages to recover .and lay awake all night this is so hard .Since finishing PR I'm afraid I've not kept excercises up so I took the proverbial by the horn and found a Breathe easy group 10 mile away that do light excercise in chairs so I went along then the next week my Bad luck started again my chair lift packed up I was stranded Frank phoned singe nets at 8am and they assured him they would be here soon told them we needed to be at a appointment at 11am and told no problem they turned up at 1am so obviously didn't get .I am still getting lots of pain had my morphine dose put up again at the hospice it's a struggle .The nurse practitioner has arranged for me to have a matron again for a further 12weeks which I am pleased about I know I need support getting lots of breathing problems and panic attacks trying hard to cope but not sure I'm getting anywhere .The other week at the hospice I went into the garden for a vape when I rang the Bell to go in I felt ill they took my sats 43 heart rate 144 sat with me till I recovered had a further do later in the day in the Bathroom Well that's about it except I've been on abs and steroids wish the steroids would give me a appetite living on smoothies one last thing Frank went to the Doctors yesterday to pick up my Morphine tablets they couldn't find the script or the form Frank had to sign so they said they would phone him when they had spoke to the Doctor to get another script time ticked by they hadn't phoned so Frank went Back over they had forgot to phone us par for the course well that's all folks now hope this doesn't disapear .
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It didn't disappear Margaret and reading your post it seems you are having a real roller coaster of a time. You are making some headway though and it's really good to hear from you.
Look at you! Using your oxygen, been on holiday, a trip to the pub and joined a Breathe Easy group. So there were a few hiccoughs but you kept going. Well done.
Hi T2D, lovely to hear from you and despite all the setbacks and problems to be ironed out, I am totally in awe of the fact that you did it. You went away in your camper van, went into town and to the pub. Last January, that seemed like something that could never happen. Well done Margaret ! You are so courageous and have come such a long way.
Thanks it was very hard to do still struggling But tried
This is brilliant Margaret, you were convinced that you would never be able to go in the caravan again and there you were, doing the impossible! Just a couple of nights up the road is a giant step forward.
Morning Don yes I managed it Glad there wasn't many people around though and it was hard leaving Frank to do Everything himself But no option wish I could help him .😷
I think you are doing brilliantly and should be really proud of yourself. I have refused to go out in our touring caravan this year because of the way I have been feeling and getting so anxious about the prospect of it, but now realise I could have done it! I haven't got all the problems you have so it has made me feel rather stupid and as I have said to you before I have a 'Frank' too and it's been a wretched year for him so far but he doesn't complain. Maybe I'll have a review on this matter and if anything it will be you that has prompted me to have a rethink!
Good to hear from you again. But it does seem to be such a roller coaster of a journey. But, you know, underneath the set-backs and disasters I still get the feeling of an indomitable spirit. Good for you and Frank.
You are not wrong it is a roller coaster tomorrow getting a visit from a matron mine was taking away about 5weeks ago so the hospice has asked for me to have another for a few weeks it has been difficult trying to sort things without one Don't know what I would have done without hospice Take care .xx
So sorry things are up and down for you. It is bad enough being ill without having to do all this chasing about, but I hope you managed to enjoy your break a little bit. Your Frank sounds like my Peter, struggles on because he won't ask a stranger for help. We are always hearing how inefficient the NHS is, but from experience it seems that some of the admin staff have forgotten how to do anything without a computer - they have never heard of writing lists so that they can organise their work! Hence no phone calls, replies to letters etc. My respiratory consultant 's secretary was asked by my GP to tell consultant something and had to be told to put a note on his desk! She's the one who sat on letters for four months before sending them, and only then because I phoned! You are not alone in dealing with incompetence but having to do so makes things so much worse. I hope the care you get from the Matron and hospice and soon feel more confident again. With love xxx
The ineptitude of some of the pen pushers really infuriate me more hassle that could be done without .When my matron was taken away without the hospice I would have Been stuck Dreading that coming to a end apparently they where having a meeting about me yesterday hoping to come up with a solution for my pain I've just had morphine increased now my GP is saying I need a review before getting anymore Oramorph and sabutomel does he think I'm magically going to get better and not need them I wish it was the case .Good that you have got Peter like I have Frank feel so guilty all the things he has to do my anxiety level is quite high and Iam hoping that the matron will agree to prescribing lorezapam I have read on the forum that quite a few people take it so I am hoping take care 😷
Mags if you ring the oxygen people and tell them where your going and how long at your caravan they'll arrange for oxygen to be delivered to your trailer for you and even put pipes in for the duration your there splinter
It was a nightmare getting the oxygen to go in the first place couldn't get in touch with my oxygen nurse apparently she's off all of August Been on the steroids and abs I'm suppossed to be getting a visit from her Monday don't know if anyone coming now but I'm going to ring because Monday's Breatheeasy and I do need to go for excercise have you Been back to James cook Did you go in hydro pool how's the oxygen going any word about the coil Take care 😷
I was glad to see your post as I was wondering where you had got to and hoping you had gone away for a few days in your caravan. It doesn't sound as though it was ideal, but at least you got away for a kind of a break. Shame you had the panic attacks as you sounded as though you were doing ok before that. I really admire you, you know. You have some rotten things to contend with but you bounce back again and take the trouble to let us know how you are.
I hope your luck soon changes for the better again!
Thank you for your very kind post moy would be lovely to loose the panic attacks or at least have something that helps control them and my Breathing I'll just have to plod on and hope one day it happens xxxMargaret
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