Finding it hard to be positive

Hi well after much humming and ah in we got away. It's a beautiful place cote ghyll in osmotherley lovely scenery our caravan is beside a Beck which goes to a redo our or maybe it's the other way round the campsite has been carefully planned the area we are in only has 6 vans the vans are scattered through out the park and the family area has children's play area and a nature trail there is further along some static caravans. And a row of holiday cottages plus a camping area for tents plus a plush youth hostel which also has family rooms you can order a take away from there or buy fresh baked bread and rolls it has a bar which is reached by a couple of steps so that's out some lovely walks to cod beck resovoir but there you have it walks I would love to be able to explore Frank bought me a voucher for 3 days wifi which I disagree about paying should be included in the price another money making racket he has a mobile wifi gadget but can't get signal its a bit hit and miss this one .Had a few lows last night Dodgy Breathing and really low sats 50sand 60s Frank asked if I wanted to go home but couldn't hack the hassle off him having to repackage everything so we went to bed .I woke up tried to swing my legs out of the bed to be met with a wall couldn't comprehend what was happening Frank woke up to the sound of me thrashing against the wall he switched his light on and I realised where I was the bed is a fixed one against the wall and a window on the other side is the toilet and shower the wall comes half way down the bed so you have to shuffle to get up the bed and when frank gets up at 3am he had to climb over my legs and 9 times out of 10 finds them with his full weight .Anyway I got to the bathroom then had the bed to conquer again .Few hours later repeat the actions but realised I just did not have the stamina to climb Back into Bed only my book inhaler glasses oxi meter where on the shelf above the bed no way could I get them Frank woke for another nocturnal visit and passed them to me he set the nebuliser up and stuck oxi on my finger 38 now I know I've got as low as 43 but this is getting ridiculous Frank put it on he was his normal tried it on me again this time it was 40 Frank asked again if I wanted to go home today I said no so he got back into bed and I sat on the bed till he got up at 10 I have told the matron and the hospice how low I'm going I'm fearful for my future 😷

P

48 Replies

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  • Oh dear Margaret that sounds scary for you. It's a shame as the place sounds nice apart from the bed situation. I just hope that you can be helped and that you are listened to.

    Thinking of you. Xxxxx

  • Thanks sassy I'm at the end of my tether xxx

  • Love and hugs Margaret. Xxxxx

  • Margaret,i am not aware if you are on long term o2 or have ambulatory,but it sounds like a good blast of o2 would set you up for a while and make you feel more comfortable and possibly give you time to enjoy your surroundings.It seems a shame to have made all the effort to get out and about and then have to return home.I do hope you can enjoy some quality time out of your normal environment,Best of luck...........skisx

  • Hi I was suppossed to be 16 hours oxygen but sats been that low been 24 hours also I was on 1 at rest 2 amboltary. In June I was. Put up to 3and 4. Given a card to say I retain co2 and the oxygen nurse is coming back with a view to put it up in December while I was in hospital I had to go on a bipap machine and I know I can't live the rest of my days on it so oxygen Unfortunatley isn't going to fix it .much tell you how bad my luck is I brought my marathon liquid oxygen vessel with me although couldn't have liquid oxi fill here I thought it would eke the canisters out it froze and I lost the lot I got a loan of a portable concentrator for use in the caravan but it only goes to 3 and can't use pulse mouth breather the list goes on and on take care 😷

  • Sorry you have had so many mishaps,i am on ambulatory and by choice/habit i am a mouth breather so i have had to train myself to breath in through the nose to use my portable concentrater,on pulse.it doesn't feel natural but i persevere because i want to keep my mobility.Give it your best shot and once again better luck to you over the weekend........skisx

  • I have tried but like you found it un natural and with my sats going so low it. Worries me that I won't get enough oxygen perhaps there should be classes to show us how to breathe through the nose x

  • I'm glad that you got there Margaret and it does sound like a very good campsite. I'm confused about the bed as I thought you were sleeping in your own van. Anyhow, I hope tonight is easier and that if you sleep on the outside of the bed, that things might be easier tonight. I just don't know what to think or say about your 02. It's incomprehensible to me that you could be left to manage at home with sats that low. Are your cannulas properly inserted and would there be an advantage to wearing a mask rather then a cannula at night ? Sorry if these are things, you've already been asked, I'm just clutching at straws here. Wishing very hard that this evening will be better.

  • It sounds very difficult. I can't help at all as it's all outside my experience. Just wanted to send you live and hugs

    K xxxx

  • Thank you hugs and love appreciated xxx

  • I hope you have a better restful night tonight ....and you enjoy what you can of the weekend xxx

  • I did send you a reply must have pressed cancel xx

  • Hi angie I slept at the bottom of the bed managed that did get to sleep but woke at 4 unable to breathe took inhalers tried to breathe my sats up then before 6 Frank had to do me a nebuliser my sats where really low so came of poc and went on canister on 4 for a few minutes Frank wanted to pack up and take me home I refused don't know how many more times I can do this I'm stubborn waiting for son he's driving up to see me xxx

  • That's not so good Margaret I'm sorry to hear that . But kind of happy in a way that your being stubborn staying as your son's coming to see you .Can you try to sleep in a high back chair of sorts at all bless you xxx Angie

  • I Don't want to be separated from Frank him upstairs and me Down I'm afraid if that happens I will give up xxx

  • It's a bloomin awkward scenario for you my lovley I hope you get some resolve to your ongoing problems especially as you tried so hard to get away this weekend ❤💙

  • Hi Margaret, you are really in a tough way until they get your O2 sorted out. I have one suggestion for you ,however, one that I have followed 100% since I had a lung lobectomy 5 years ago: Do not force the bed anymore ; instead find a comfortable chair or recliner and relax, read, and fall asleep there. It is absolutely the only way I get any sleep. By the way, I am now also on 24/7 oxygen. It hurts to hear how you are suffering and I just want you more comfortable. Kindest Wishes,judg69

  • Thank you for your reply I have a recliner but I haven't the strength to put it up and down when we bought it a few years ago along with a reclining sofa there was quite a substantial. Difference in the price and of course didn't see this coming forgive me ignorance what is a lobectomy I have a vague idea but I may be wrong take care x

  • Hi again Margaret, a lobectomy is surgical removal of a lung lobe, usually due to lung cancer. Anyway, back to you, you really do need to get to an environment where they can stabilize you and your oxygen. Margaret, please try the chair idea, any chair, you may just find yourself drifting off to sleep, perhaps because it is not the 'big production' of getting ready for bed and getting into bed which it seems starts to ratchet up your anxiety. Kindest Wishes, judg69

  • Margaret, I can't add anything useful to what's been said but just wanted to send some love and strength, and hope you can manage to get some enjoyment out of your trip despite the awful stuff that's happening. Thinking of you, jean

  • Thank you Jean I'm very stubborn it's a absolutley gorgeous spot hoping this rain stops. and. can see something off the place Frank is all for going home but I said what if I can't get out again just looked to see if The Doctor has reissued the fluid for my nebuliser last week I got a message on my IPad saying I could not have anymore till it had been reviewed so the matron phoned surgery and requested it has not been done it is a good job my friend who lives in turkey has brought some over I honestly never expected things to progress so quickly thanks for the kind words take care Margaret 😷

  • ((((Hugs)))) Margaret.

  • Thank you x

  • From your description, the camp site sounds lovely but I appreciate the limitations eg with the steps and walks - not so great for you. In our caravan we made the beds up as twins rather than double. Is that a possibility for you? Thinking about it, you wouldn't have the right bedding with you, would you? One of you could end up cold! Hope you manage to sort something out for tonight. I take my hat off to you for giving it a go - and to Frank for doing all the setting up! You've got a good bloke there. I hope things are better for you today. xx Moy

  • Hi moy the Bed is a fixed double permanent I slept at the foot last night just had to pad it with cushions obviously no head board that end so Frank would have my feet under his nose if he moved over lol ..Had another night of low sats and breathlessness wonder when or if I will ever get a break .The seating in the living area of the van does make up into a double But the reason we got van with separate bedroom was so Frank didn't have to make bed up every day xxx

  • Your van sounds like a very nice one and I can see why you want to use it but also now understand your difficulty with the bed. Poor Frank having your feet under his nose - phew! Lol! I guess the same thing applies to you having Frank's feet under your nose - now wonder your sats are down. Haha! I still think you are amazing for giving it a go. Hope you have nice weather and are enjoying today a bit more. xx Moy

  • I replied earlier just looked it's not there typical weather Been sun and showers most of the Day Unfortunatley my feet are up like puddings. Usually my left one swells a bit and sometimes my knee But today it's both of them and the right one is painful Wonder what's next lol Sats still playing silly beggars xx Margaret

  • Hope you have a better day tomorrow. xx Moy

  • Don't know what to say Time_2_drink, it seems you are fated to mishaps, after all your effort and your husbands care and help things still go wrong. Guess if you were not ill the bed situation would have been funny. It sounds beautiful where you are, hope you are a little better today, you do need to rest after a long journey. Can you hear the Beck trickling? Hope you can get a little pleasure from the beautiful countryside fora few days. xxxx

  • Hi Katie yes you can hear the Beck if you look on google osmotherley and cote ghyll Holiday park are there It's a strange Day raining then sunny and vice versa I'm hoping today is going to be Better after another Bad night it's a good job I'm stubborn But I am finding it a struggle xxx

  • You are doing well , stubborn like me then. Don't give in easy. It can be our downfall sometimes we need to bend a little for our own sake. Hope you enjoy the rest of your short break. xxx

  • The gremlins are out to get me today I've sent several messages only to get message failure not impressed having paid to have wifi then it won't work in the caravan only the awning The reason Frank got it is so I could go on net in night whilst he sleeping we have mobile wifi but won't work here my feet are like 2puddings usually left one swells slightly and sometimes knee But today it's Both and right leg paining. I'm fed up xxx

  • No surprised you are fed up, wifi can be awkward in some areas it is due to poor mobile signals, just like hotels it is often only available in the reception areas. Sorry about that especially when you paid extra. Now you know what is mean't by home comforts . Hope your pain is better this morning and foot swelling down. I thought the heat was causing my foot swelling, could be making yours worse maybe. After all this I bet you will be glad to get home again. Safe journey back, take care speak again soon xxx

  • Really feel for you battling every day but so proud that you are fighting back. Hopefully the fresh air will do you good. Have you got a sofa in your van you can sleep on, might make it easier for you to get up of a night. Take care x x

  • I managed at the foot off the bed last night and I would have further to go to the Bathroom we have a sliding Door that we close off on a night then there's the Bed a vanity unit and d sink then Door to toilet and shower xxx

  • Hi@T2d So sorry you`re still having all these problems but I am glad you got away. Hopefully you can make things easier for next time by taking note of what caused problems. I`d certainly take cylinders next time - they`re not going to freeze and you`ll be able ( as a mouth breather like myself ) to have the oxy on 4lpm. Your post brought back some lovely memories as my late husband and I went all over with our touring caravan. The dog and cat came too ! Do try to sort out any problems and get away as often as you can. Sheilaxx

  • Thanks I had to request the cylinders last time they only gave me 4 I have 6 this time but it's to last till Monday and as you know they don't last long I am pleased that I Brought such lovely memory's to you it's really difficult when your a caravaner to have limitations .I have horrible fear of being put on a ventilator or worse Because of my low sats this CO 2 is causing so much Hurt xxx

  • Hi there lovely Margaret- what's the weather like today? Has it stopped raining? My breathing always gets worse when its raining or just generally damp outside. I've looked up on Google where you are and it looks so beautiful. The caravan site sounds pretty good too! Are you still under your awning? If u can,just try and sit back and relax,I mean properly relax. Do the deep breathing stuff as if you were almost meditating- it will make you feel less stressed hopefully. Apart from the eventful night/early morning you had,what else have u been up to? Love Cx

  • I really Don't know what is happening to my replies I sent you a PM got Message failure replied to this post to tell you I'd sent Pm then I just Done another Pm only for that not to go as well to top it off I returned to this post to tell you what. I'd done and that had disappeared as well flaming gremlins in the works love Margaret xx

  • Well Gremlins deffo at work on us today. I've not been able to send anything again until now. Hopefully you'll have a better night,tonight and the Wi-Fi or whatever doesn't mess us about tomorrow. Cx

  • Hi Caz got this but don't understand where the PM Both of them have gone just had a bad do and the pain in my foot is just awful dreading getting undressed hopefully the messages I sent you will get to you later hope that all is ok with you love Margaret xx

  • Would you believe I've just sent you a post on forum but sent it to my self so if you look below this you will see it hopefully xxx

  • Right I admit defeat when the test message went I confidently sent a proper message for the 3rd time and it's disapeared with the others so tonight I admit defeat but it's strange posts go to the forum love Margaret xxx

  • Morning Margaret.... Isn't it total madness. All forum chat seems to get through but PM's have a mind of their own at the moment! Hopefully your foot didn't keep you awake all night. How long has it been painful.... You may have to go and see your Doctor or else its another thing to worry about? I'm hoping the rain stopped for you as its quite sunny and warm here. I'm going to attempt a PM so fingers crossed. Just in case it fails,keep foot up,perhaps sitting under your awning and let your lovely husband wait on you....hand and dare I say it "foot" ??!!!!!???!!

    Cx

  • I wish Margaret, you could have a good night's sleep for once, you must hate night time. Maybe you over did it with the journey etc and of course all the worries you are having. Are you staying for the 4 days, you may feel better once you are rested. Really hope you have a better night. Love Lilian xxxxxxx

  • Frank is talking about taking me home and to the hospital tomorrow then driving Back for caravan I Don't know what to do just haven't the energy and on top of everything I now have massive throbbing hurting feet what next love Margaret xxx

  • Hope you get some rest tonight. Take care

  • Thank you I pray I will But got terrible pain in swollen feet which is new to me have water tablets only one foot used to swell and sometimes knee But today it's Both and right foot hurts I want shaking up lol take care

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