The community matron came today I've still been coughing nasty mucus up so yesterday hubby went to doctors and got sputum pot when she came today she took sample for testing she coming back Sunday 9 th. .She phoned doctors and asked him to prescribe antibiotics said I have reduced entry on right hand side and crackles on left he has given me 7 days amoxicillin also she asked him to increase my oramorph bottle size prescribed 2.5 to 5 mg 4 times a day but only given 100 mg per month doesn't work out she asked for 300mg bottle when hubby went to collect from chemist only given 100mg back to square one so I am stressed out and got decorators incoming supposed to have started today phoned Wednesday said it would be Friday .Today they phoned again and said it would be Saturday I'm worried about paint smell although I asked for low omissions and having to use commode in shed. And then I've got the chairlift issue and a well known company hassling So I feel like giving up
I feel like giving up : The community... - Lung Conditions C...
I feel like giving up
No no no you fight the good fight ,when the chair company ring again tell them you have Orderd one from another company if they are still hassling you
Take care
🤗🤗Dorothy
Thanks Dorothy I really feel so low and at the end of my tether I don't think I've had one good day since I been on oxygen december so glad of this site
Its rough isn't it I feel for you hope your doing better in the next few days...
Thanks I finding it very hard to cope xx
Oh dear I got on oxygen exactly when you did Time--It is so hard to adjust--so you arenot alone--I abhor it--but it keeps me alive-I rarely go anywhere now-and alone a lot so have to make an effort to keep going sometimes Mmet
Madametobacco o I must feel like you alone sometimes
and want to give up But I just been for a drive with Hubby I looked at the mountains and the lights and shades shining on then then I thought how could I give up So try to keep going I hope for all the best for madamettobaco [nice name]
Hi T2d, don't get too stressed please and don't give up either. The nurse can help sort the doctor out if that's what is needed and the stairlift hassles can be ignored or told to stop. People don't understand what you are going through so need to be told. I tend to deal with phone calls so Pete is not stressed.
You may have to keep on to get anywhere as nothing is easy these days. Hang on in there.
Good wishes to you. Xxxxx
You keep up the fight ,you will be fine. Take care 😊 xxx
It seems like it is a loosing battle and no light at end of tunnel just really unhappy xx
Thanks sassy I am finding everything so hard I know plenty of people in same boat I think the stress of not sleeping properly the bloody awful hot and cold episodes feeling to weak even to get dressed and that pain still with me under breast had no answers for any of it and never leaving the house it has all got to me sorry for off loading xx
Hang on in there ,soo soo difficult as one of the other members said you are not alone and the wonderful thing about this site I've discovered ( I'm new to it ) every one is just soo supportive and it good to offload to people who understand ,
Thinking about you
Annabel x
Hi annabelle well it's a couple of months since I wrote this post and afraid things ain't a lot better still having the sweats and pain still scare stiff and hating being on oxygen and having no quality of life .Although since I have been going to the hospice on a Tuesday gives my husband a break and the staff there are trying to get my GP to change my medication for pain to morphine tablets no joy yet take care
My hart goes to you ! I too resent and hate what I've been inflicted with , I live on my own and sometimes realy struggle but we have to keep going , we ( hopefuly all of us ) have people who love and care about us ! It's my daughter I live for , she lost her father ( my husband ) when she was 14 .
I just think how she would be and the distress if any thing happens to me !!
It's difficult I understand ! But I'm sure as long as we are alive they are happy !!
Just hang on in there x
I think everyday that my husband deserves a better life than he has with me I honestly feel a burden to him and just can't imagine living the rest of my days being do unhappy and feeling ill x
My daughter lives in Cardiff , I live in Inverness ! She is all I have twice in the last year she has had a call from hosp , can she get here Asap ,
I have literally died twice in front of the poor girl ! You ask your your husband and he will tell you I'm sure how Lonely he would feel with out you there ! Coming into an empty house ! I looked after my husband at home ( he had cancer of the lugs that went to his bones his spine collapsed and I had to get him on to a commode etc , but I dident mind as long as he was breathing and able to talk to me And I to him I was grateful and honestly it's your sadness that proabably
Might get to him more than your illness !!
It's easy to say ( believe me I know ) but for him if not the both of you see if you can try ! X
Hi annabelle. I understand what you are saying but the truth is I am not strong enough mentally to deal with this illness try as I might I can not see a way of getting through it and that is the truth frank deserves a proper life not the nightmare we are living .Today been to the hospice was the last day of a course been going to called being in charge and was coerced into having hair and make up done and a massage was told it was to make me feel good about myself I'm afraid it only served to make me sadder thinking of what I have lost best wishes Margaret
I am soo sorry , may be I have t reached that stage yet
I do know I hate hate it all ! Keep posting tho cos I'm sure it helps
Nite nite x
Hope you have a restful night xx
Thank you , you too xx
Welllll !!!! Consider this a telling off .You don't give up on anything you keep fighting the fight and talking the talk ....things will come good positivity is a must ...you think positive and things will get positive ...negativity breeds more negativity.... ppffttt to what's getting you down smile and enjoy what you have good luck keep well and be happy lol 🕊🕊🕊🕊
I wish sorry to be so negative but it seems futile every day the same go from bed to chair scared to move sweating and freezing unbearable every day my husband has to change the bed sheets because I sweat that much before freezing never rid of infection so it seems and seems like fighting for pain relief .And going up to bed early because don't won't to use commode in shed xx
you will get on the other side of that crap--promise just hold on--Mmet
I really hope you are right I really do
T2d I wouldn't lie to you--I know the feeling-- like no one really understands how bad you feel-we all have only our frame of reference about pain,sweating etc--so in some ways it is a real lonely feeling--but many of us have come close--and from what Im reading I certainly have--Life isn't perfect now--I have days I just stay in bed--but I want to see what the next chapter is going to bring--and I figure Im here for something--you are helping people with your honesty--so let'er rip--People really love the truth even if it isn't perfect--Sometimes we have to let others carry us--That's a hard one for me--but Im getting close--I cant do all my cleaning--many things that were a breeze before--I started seeing a counselor this week-It helped me understand why my grown kids don't seem to be there--and that was hurting Just the act of doing something I needed for me helped so back next week--Im so sick of being ill and it seems my life revolves around it--but there is a reason and what feels like falling apart is sometimes just rearranging you and you will be better and wiser when it is done--Okay my friend--write write--it helps--Hugs Mmet
I have also been having counselling but it is over the telephone I have not been able to go to the office because of infections and also not wanting to leave home with oxygen I have become agrophobic I think when we did go to a supermarket I had a meltdown I think it was about a month ago. Best wishes Margaret
I used to have panic attacks after I quit smoking so I know how awful they are--I am mostly home except groceries and drs appts--we mustn't look at this like our lives are over--I am getting old-even if I stay like this it wont be THAT long but --I have to remind myself--when things aren't so bad--not just oh this sucks--My feet and legs are swollen now--so I want to start my worrying--but trying not to--took a water pill and try to pee it out--Its to bad you are so far away--we could freak out together--lol MmeT
I also got water tablets I have not taken for 2days so fed up of going to pee but now I have stair lift I will do better and drink more I stopped drinking a lot which I know is wrong now I can drink more best wishes
do you have pulsing oxygenator? I just got one and those tiny 2 liter tanks last 6 hrs now---so don't feel so bad going out--H=when were you diagnosed? MmeT
I got oxygen 23 December what a Xmas present lol I can't have pulsed oxygen because I am a mouth breather just my luck I'm pleased you can use them better than big tanks Margaret
I have heard people use them that are mouth breathers--I am soooo pleased--tiny little tank lasts hours and hours-weird smell and a little whoosh--They are still trying to put this sleep apnea rap on me--I find it ironic that everything I have is what the commercials are about on tv--heart failure,a-fib and copd-type stuff--what the hell is going on?apnea is the popular catch all for breathing problems--so gonna hang that on me next--- Im not crazy ---its true-why is that?? Mmet
Oxygen nurse said I am not suitable which is a shame have you been having tests for sleep,apnoea Margaret
T2d-sort of been having tests--they put me on all night oximeter --but I have to do a deeper study--god I don't want that shit--look like a zombie at night--my breathing goes way shakllow during sleep--but they aren't sure it stops--another test with 6 litres of o2--which will blow me out of bed-cant wait MmeT
When I was in hospital in December I had to go on a bi pap machine it was horrid .Did you have the tests at home or hospital
please don't give up, we are all here to support you. Take care 😊 xx Bernadette
Thanks just do low don't seem to have any quality of life has well as the infection which is my fifth since November everything else is getting to me it is awful to have to go to bed early because of worry about toilet and then spend night drenched in sweat and next day spend most of day in bed for same reason 😷
Give yourself a break, allow yourself three or four days or a week if necessary to stop fighting and just get as much rest as possible. Don't worry about why 'this' is happening or why you feel like 'that', just try and accept it all for a day or two and give your mind a chance to get some rest and find a little peace. You can't rest if your continually anxious, or if you're continually fighting anxiety. If you're being pestered by the chairlift company put the phone down everytime they call, don't worry about seeming to be rude - they're being a nuisance, not you. Rest is as important as medication, if you can get on top of your anxieties you might find that the fluctuation in your temperature improves. I say that because at a time when I was expriencing high anxiety I was either freezing cold or so hot and sweaty that I felt as if I was going to pass out. Just rest as much as you can for a while and give yourself a chance to accept things, instead of worrying over them.
That is exactly like I am I am that wet with persperition you could ring me out and then split second froze .I won't be able to rest for a while has I say decorators coming Saturday at 8 and reckon they will be couple of days so will have to go downstairs early and have to use commode in shed dreading it but I totally understand what you are saying I have had these hot and cold episodes for 3month now totally wore me down
Use of the commode is no more than a necessity, it might not be ideal to have it in the shed but if it gives you privacy and is easier for you to get to than the bathroom then for now, that's two problems that you don't have to worry about. Having decorators in isn't ideal either, I don't think anyone likes the upheaval or the 'intrusion' but it's only a short term inconvenience, just try and steer clear of anything that's going to aggravate your lungs. When the decoratings finished I do think you ought to try and find out what help you're entitled to ask the council for. I doubt that they'd think a commode in the shed was suitable as a permanent toilet fixture, but they can't help if they don't know about the problem. Get some rest as and when you can, and stop being frightened.
I won't be able to avoid the paint sofa done stairs no good for sleeping so just have to hope ok .occupational therapist just rang coming next Friday I know we don't qualify for help financially but asking for advice .I am in bed soaking and in pain fed up thanks for your reply
Magpuss is right T2D, you must allow yourself time to get well and then tackle things, one by one. Your husband sounds like a star and I'm so sure he and your family would love to see you looking brighter. Everyone will be just that little bit happier. It doesn't always come quickly enough but preserve with getting well and the rest will follow. Just hang in there!
i know it makes sense but it overwhelms me the painter just arrived so fingers crossed paint smells won't be to bad
Commode in the shed? That's pure luxury. Sometimes when I'm at top of garden gardening I use a bucket in my shed!! Haha!! My children and grandchildren think I'm joking, I can assure you I'm not! x
I never thought of it that way joy a luxury commode lol x
I may be butting in here but I'm reading these posts can feel I need to join in, I recently quit smoking (one month quit lol) but I have felt some of the same emotion you have that without smoking what is life why get out of bed I mope all day feeling sorry for myself I can't smoke poor me,so my message to you and myself would be I think we need to adjust to our new lives the way it is now life stop moping about what is lost and find new things to get into, like new hobbies needle point,cross stitch knitting crochet reading a good book,let's start a fresh day and only focus on the things we can fix, all life's worth living!!!🙂
Hard life to adjust to 5month ago was sunning myself in Lanzarote carefree fast forward one month and tied to oxygen endless infections and pain feeling trapped and scared lots of adjusting to do like I said if I could get pain under control and have some relief from the hot and cold fevers I maybe learn to cope better but at the moment it is all just to much take care
Oh goodness, I do feel for you - hang on in there though, best wishes x
Thank you I decided to stay downstairs a bit had to use commode in shed feel totally demoralised and out of breath can't decide should I have nebuliser before I climb the stairs or wait till I up there decisions decisions x
I expect you feel everything is hopeless at the moment, I felt like that a couple of months ago, trapped in the bedroom because if I went downstairs I wouldn't be able to get up again, would have stayed downstairs but our 2 seater sofa is too small to sleep on. I began to hate that bedroom. nearly as much as I hate pneumonia!. Felt hopeless! 2/3 months on and last night went upstairs without using the stairlift and only moderately breathless. I know I am going to need the stair lift again but for now I feel as if there's hope, and I am 80. Your hope will come back and you will appreciate the feeling so much. I wish you didn't have to go through such an awful time but it will get better.xxxxx
Lillian thank you so much you are mirroring exactly how I feel .We also have 2seater sofa it feels like you are trapped doesn't it .I am so pleased that you managed the stairs without being to breathless I bet that was a great feeling and I hope when I am finally clear of infections to be like you xx
It was a great feeling T2d. I . have severe copd, infections since last October, felt blooming awful but now, at last am back in the land of the living. I know you will come through this, you've probably gotten over the worst, just get over the next few day with decorators etc. Try not to over think things regarding the stair lift, just get one! Just had a slow walk round the garden and thought it would be nice to share the walk with you, enjoy the bit of sun and a bit of a chat (not while we are walking), can't walk and talk at the same time. I wish I could do something to lighten your load. Lilian xxxxxx
I hope you enjoyed your walk Lillian infections are the devil aren't they just can't seem to get rid but by what you have said I am a month behind you so hopefully won't be to long before I get some respite from them I know it is inevitable that I will need to get a stair lift but finding it hard to come to turns with not to say the price of maintainance contracts I keep trying to ignore it but it's like you say the bedroom becomes a prison I feel like a prisoner anyway been out of house 3 times since December partly my fault but also because of infections where you ok using stair lift when you first got it I must admit I am very wary .Thank you for being so kind Lillian xx
Like you. T2d, I only went out about 3 times in 3 months and that was to the doctors! Not one for going out much really, a nice trip to Matalan, about 3 miles away is a nice afternoon out for me. Now I'm ready for that trip. Haven't used the stair lift for 3 days! I was never wary of the stair lift always feel 100% safe. You will soon improve and be where I am today. Get a stair lift! I hope the fumes from the paint are not bothering you too much. Not much long now. xxxxxx
Tommorow is the big test emulsion on walls and ceiling been OK the undercoat isn't to bad but tommorow will be the test the gloss .I am pleased you looking forward to trip out I used to like matalan but since December only been dressed 3 times living in pjamas .You are doing well with the stairs congratulations my husband though he is good says you will be all of a dither with stairlift I am wary but what is alternative sometimes he opens his mouth without thinking xx
I think men come from a different planet! Can you wear a mask for tomorrow, I know sometimes they make breathing more difficult. If it's nice weather could you sit in the garden for a bit, well wrapped up! You won't be all of a dither with the stair lift, I am a very nervous person but not at all scared of the stair lift. Nothing to be scared about. I lived in my pyjamas, that's ok, makes life a lot easier when we're feeling so ill, and cuts down on the washing! Stop procrastinating about the stair lift, it will also give you a psychological boost, knowing it's there you won't feel trapped. I arranged for the installation etc, had I left it to my husband I still wouldn't have one. Bless him. He's very helpful otherwise! Hope tomorrow isn't too bad. xxxxxxx
Hopefully smell won't be to much gingers and everything else crossed I know it seems like I'm harping on but the problem I have with sweats and freezing cold makes sitting outside difficult unless hubby runs a extension cord outside then I can plug fan in and blanket if cold think I'll just stay put .i am going to go upstairs about 7 so I can take water tablet and have a few glasses of water I will stay up there then .Dont like to have much to drink downstairs hopefully lift will sort that out Top marks for sorting your lift I bet the sales man directed everything at your husband xxx
Yes, stay put. It's a bit too chilly to stay for any length of time outside. Just do what makes you feel better, or not worse. When I was imprisoned in my bedroom I hated the room, but now after spending the day downstairs I love my bed. I go about 10pm. Do you have to get up during the night with your water tablets. I take them occasionally when my legs swell up. A few months ago I was on them all the time, 2 types. Then having to go many times during the night, could hardly walk with backache and not being able to breathe. (I would have liked a shotgun!) Now after 5 months I can breathe better, no backache, I get dressed every day and life is worth living. This is going to happen to you too 2Td, it won't seem like it now but it will. The salesman did only talk to my husband but not for long. Hope you have a good night's sleep. xxxxxx
Hi Lillian came up about 6.30 was getting panicked about stairs so thought it best to come up I wish I could sleep but not having much joy on that score I usually take water tablets between 4and 6. In morning. But having to be down stairs early did not want extra visits to shed so I took about a hour ago and am drinking plenty of water while I upstairs so will be many visits tonight .its a nightmare back and foreward glad you font need them all the time now that shotgun would have run out of bullets by now I expect .It feels so wrong me being up here and other half doing his own thing downstairs beginning to feel like I am no longer a wife but a patient .I can imagine you put salesman right enjoy rest of your evening xx
Before I had the stair lift I went up early, I dreaded going upstairs so I wanted to get it over and done with. Why is it that I found walking up the stairs was not too much of a problem but as soon as I walked into the bedroom the sob hit me, it is so awful but calmed down after breathing excercises. I know the nightmare of having to go several times at night. It certainly isn't easy. You could tell someone who doesn't have copd that you were up all night going to the toilet, but try explain the pain in the body and the sob, you have to be there. It is wrong that you are up there, when I was trapped in my bedroom I felt isolated and invisible. That was me feeling sorry for myself! No, it wasn't!! It's not easy feeling so full of pain and seeing others appearing quite happy. I hope you can cope with the paint tomorrow, soon be over. Hope you don't have to get up too many times and hope you get some sleep, don't worry about the painters coming early you're more important than they are. Try not to worry you're going to be alright. XXXXX
Thanks Lillian they have already kicked in second visit I am really short of breathe it is awful my hubby just brought me a tray up I didn't eat much dinner and didn't want any tea he cut up kiwi fruit orange banana pear cubes of cheese and rocket and rhubarb pie and cream he looks shattered you are spot on wanting it over and done with when the painters not here sometimes I don't go down till 3 then back up early I must admit the stairs have become even more of a challenge I feel like you did isolated miserable and also I feel useless well 10 and a bit hours till I have to face them again xx
It doesn't sound as if you had a very good night. Its horrible having to be woken up to go to the toilet, those few hours sleep we are getting are so precious. Your supper sounds delicious, just the sort of food I like with a bit of avocado added. My husband used to look really tired after traipsing up and down stairs and I used to get a bit 'ratty' with him, we always take it out on the one we're closest to. I thought that was going to go on forever! It doesn't. I can't believe the difference to as I am now as I was a few weeks ago. I think you will start feeling better after this week, you will then get a good night's sleep and it will build up your strength. I'm going to Matalan tomorrow, still a bit afraid of mixing with people and catching a cold or something. Are you still getting a lot of pain.? My backache after about six months has now gone, just take a couple of paracetamol. How are you coping with the paint fumes? Will they finish today? Hope you have a good day. xxxxxxxx
Hi Lillian glad to hear you having trip out tomorrow Hope it goes well for you I know what you mean about mixing with people my son says don't worry about other people if you go out they are to involved with there own lives .My husband has the beginning of a cold but not a lot I can do about it .The painter has finished I haven't seen it yet I am in living room you have to go through kitchen to get to living /dining room knocked into one which is a bit of a bind to get to stairs .So because of distance not smelt anything yet not going upstairs till it properly dry then I will do my drinking don't want to many visits to shed . Last night I had one of my hot and cold episodes 2oclock this morning. I had to wake frank because I was drenched the worst yet He got me some clean night clothes I try not to wake him when I am like that but my breathing was shallow and I got a bit concerned very .He is trying to sort out problem with oramorph last week the matron rang doctors and asked him to give me 300mg bottle instead of 100mg only got 100 when he went on his iPad to request some items of my prescription he found out that 300mg was on the script so has had to go to chemist then to doctors and we are waiting to see what is going to happen .He also phoned the matron to see if results from my sputum are in Doctor only gave me 5 days amoxycillin she said she is going to call in about. 2 obviously it will depend upon her calls when she gets here. I still have pain unfortunately waiting for pills to dull it a bit .Sorry to be so long winded oh by the way l like advocados too xxx
What a night you had! Of course you had to wake up Frank, you would do the same for him. Do you find Amoxycillin helps.? I found it quite ineffective, they didn't work and was then prescribed something beginning with C, can never remember these names. That really worked, made me feel worse for a few days then started to feel better. Sod's law that now with everything else you're going through Frank gets a cold! Don't you dare catch it!! We are so lucky we are not alone,I don't always appreciate it but know I'm lucky. Had a glass of wine with meal yesterday and I had such painful wind going round my chest, wine has never caused that before, it's fine now after a couple of tablets beginning with O. Might have to give wine a miss. Why are you having such trouble over your prescriptions! I have no faith at all with doctors. They should know that you are asking for it because you need it. I've never had a sputum test, didn't know about them until I joined this site. I have learned so much from being here and am so grateful that people are generous enough to share their experiences and knowledge. I hope the matron will sort things out for you. Is she a District Nurse? When is the OT coming, they may help your decision with a stair lift. Get one!! Didn't go to Matalan remembered dog had to go to vet our daughter came to take her, so will go tomorrow. How long did your shallow breathing last? must have been awful. I used to watch a lot of daytime TV, very bad, but better than nothing. Do you take your water tablets for swelling. I hope the paint dries quickly and the fumes disappear and you can go up take your tablets and get into bed. You must be exhausted from your very early start. Have a good evening. xxxxxxxx
IShe is a community matron she can't prescribe yet but she has been shadowed by another matron who can .She has rang the surgery about the oramorph and it is being sent to pharmacy .When they came last week they took a sputum sample like I said guess what the lab has lost it I seriously think I have a gremlin on my back you just would not credit it .She is coming back Sunday afternoon and wants another sample I had one for her today but no good because on antibiotics .The doctor wants me to go for a chest xray so that will be my outing don't feel like going .I was also asked when do I see consultant again I said I haven't seen one yet so they making referal I'm a bit worried about that what a shame the wine caused you discomfort are we not allowed any enjoyment yes the furosemide for ankles but not been bad latley don't know whether to give them a miss for a bit amoxycillin no good for me either but I been given another 2 days so a weeks course I am fuming about that sample never going to be rid of infection at this rate .It is a good job you remembered the vets I hope your dog ok and you still go to matalan tomorrow .Not sure how long breathing was off it seemed like ages probably wasnt I told matron about being wary of climbing stairs she said I have to do it even if I sit down every couple if I got sat wouldn't be able to get up I don't think she keen on stairlift Frank going to put a socket in for lift he wants me to hire one I'm a bit apprehensive because the price is so low also think it will be the straight one walk the first couple of stairs hopefully .i would love it if I could go to bed no sweats and sleep doesn't seem much to ask does it Oh just remembered. Matron asked if I had heard any more from hospice you guessed it nope .I just realised haven't had any food since breakfast Frank has offered but to be honest appetite gone although he has made me a nice smoothie. I know he means well but he laden S my plate I have tried to tell him little and often oh god this sounds like a moan hope you have a nice evening and if you do have a glass of wine you don't get any problems xxxx
What! lost your sputum test!!! How could they be so irresponsible and why am I so surprised! It happens too many times, so now you have to wait until Sunday. Pleased you got your oramorph, did you get the right amount. The very best thing for you to have an xray and see a consultant. I know it take a great effort and planning to get there let's hope it's not too early in the morning My doctor told me to only take the water tablets when ankles and legs got swollen, so I only take them 1 or 2 times a week, I'm lucky I can take them in the morning it is so difficult for you. Good that Frank is going to put in the socket, it doesn't matter if you hire one buy one or steal one as lon as you get it. Don't know why your nurse isn't in favour of a stair lift, doctor advised me to get one. If we can possibly get upstairs without too much discomfort we would do it. Like I do now. You need it now! No, it's not too much to ask for a night without sweats and a good night's sleep. I have a good night's sleep and you will too. I hope you've managed to eat something, I ate very little but didn't lose weight, I had a lot of fluid. My husband wouldn't know how to make a smoothie, also we haven't got a smoothie maker! I don't know what you mean about the hospice, you're not going are you? Sorry about the questions but you are the only person I talk to who has COPD, and you have to have it to understand. Have a peaceful evening. xxxxxxx
LIlian you do make me laugh.....to quote you re stair lift..." Doesn't matter if you buy one hire one or steal one..get one " Hilarious!! . I do enjoy the conversations sbetween yourself and Margaret they could be turned into a short novel..Brilliant.
PS I know the ones I'm reading are a year old but I also know both yourself and Margaret are still around and on this site....so I'm hoping you will both see this. Xx💐💐
I know can't believe they lost it well I can with everything. Else that has happened Sunday she will take the specimen then will have to wait till get results from lab that's if it doesn't go astray pleased to say got the oramorph and got the 300 mg so ended up with extra 100mg although if I am supposed to take 20 mg per day I should get 2 bottles a month not one it is a nightmare .i couldn't face dinner got another smoothie he makes them in soup maker got a smoothie maker in it The hospice I got referred to because they do a course called be in charge teaches you coping stratergies nutrition and a little excercise .Apparently it was a 6 week course But people complained it was to long so been condensed into 3 weeks I went for a assesment a couple of weeks ago but have not heard back .I am hoping I have a better night but. It is so long since I had a decent sleep and a pain free night but I live in hope don't apologise for the questions it is good to have you to talk to you know I am really mortified at the thought of the chair lift but what option do I have just wish I knew which firm to go for I can see franks logic about this rental one and he says if it doesn't work out we can go for curved in future hope you have a restful evening xxxx
I hope you had a better night, did you manage to overcome the paint fumes, that's one bit of stress out of the way so you can tick that box! I wish you would get over your fear of chair lifts, when you get better you won't need it as much but it's always there a bit like a mental crutch. Try hiring one, as Frank says. Just give it a go! The hospice referral, is it like PR? I've been referred to a local one. I've read a lot on this site about it and how much good it does but to be honest, it terrifies me, I don't think I could push myself that much, I can manage gentle excercises but really don't like the idea of pushing myself until it's difficult to breathe. I do realise how good it is though and admire the people who do it. I wonder when you will get your xray and consultant appointment. Do you have to travel far? I had my xray in the local surgery, but anything bigger than that would have to travel to Bath about 18miles away, we had a lovely little hospital here which of course, closed down. Popping down to Matalan later want to get a couple of fitted vests as I can't wear a bra, you spoke about this before. I'm a bit heavy on top and not a pretty sight without a bra. I've tried different types, sports bras etc, but I always have a tight feeling round my chest, although don't have to be wearing a bra for that! I expect you're downstairs now, do you manage to walk to the kitchen etc, well of course if you walk to the shed you can walk to the kitchen. I haven't been out apart from drs visit since last Oct/Nov and a bit apprehensive about it, I wish I could just put my coat on and go, but I have to plan every detail, I make it really hard work. I hope your pain is easing, how often do you take the medication? My pain was backache Dr said it was sprained from too much coughing. It's amazing after all those months it's gone! What is causing your pain? Have a pleasant afternoon. May I ask you what your name is please? xxxxxxxx
Hope you manage to get what you want from matalan yes it is a major operation planning a trip out when frank picked me up from hospital last time he misjudged how much liquid was in the machine and I travelled part way home with non not reccomended .Intoducing myself I'm Margaret a bit more friendlier .The doctor wants me to go within the week for a xray hospital not to far but to be honest not looking forward because I never been as a out patient and I can imagine people in waiting room watching me with oxygen on will look for quiet corner that is of course after I manage to get out of house with nobody seeing me paranoid arent I .I think it is just gentle excercises at hospice it's more about coping and management .Have you been referred to pr I wouldn't fancy making myself breathless purposely I think I have referal but matron said there is a long list so who knows I had no problem with paint he used Dulux Eco uses it in care homes he said Didn't want to come downstairs today but pushed myself it was after 12,though just like to be near bathroom as much as possible I made myself get dressed only about 4th time this year if that Don't know how long I will wait to see consultant Do you know Lillian I wish I could just sleep the days away dreadful isn't it .I am having telephone counselling At 2.30!had one session .Last Tuesday our anniversary was suppossed to have one but my sister in law turned up with flowers as session started so the counsellor was very short with me and said do you want counselling or what if you cancel again I will have to take you of the course really upset me take care Margaret xxx
Hi Margaret, don't think you are the only one who wants to sleep the day away, I used to do that and then couldn't sleep at night. You just want to escape from the misery you are feeling at the moment. I felt just like you do and couldn't see a good ending, but started gradually and then suddenly the darkness lifted and I was back. It is your turn next, not long to wait now. I have never been on oxygen but can imagine how very inconvenient it is. Was your breathing affected on your return visit from hospital without oxygen? I bet that caused an argument!! No you are not paranoid, people in the surgery aren't looking at you they are looking at those with shaved or purple hair or covered in tattoos, or wishing that child would stop crying. I have been referred to pr but I don't mind waiting, the longer the better. Very well done for getting dressed, it's such hard work. I remember when I was going through some of what you are and I got dressed for the 1st time in weeks, my son came round to visit and said You're dressed! I think everyone was pleased when I dressed. I remember sitting in the bedroom sob, pile of clothes to change in to and it seemed like a mountain to climb. Now I sit on the chair and get dressed automatically. I get my clothes out the night before as I don't want to have to worry what to wear in the morning. I hope your phone counselling goes well, don't forget she's doing it because she gets paid to it. Nice you had flowers from your relative. Hope you have a nice afternoon Margaret, I'm going to Matalan now. xxxxxxxxx
Hi Lillian hope you got what you wanted in matalan and you are ok after your trip out .I have had the phone counselling now and remembered what you said about it being her job .Frank has put the socket in for the chair lift and also made the phone call to get one fitted we are going for the straight hire lift for time being will walk first couple of stairs and then if things do detiriate we will have to go for the curve but there is a lady on here who has same problem with her stairs only in reverse who has managed the straight for 5years .I have just come down from bathroom thought I would leave the shed for later for some reason I am feeling quite tired and just realised i have not eaten since porridge this morning must do better I just can't find my appettite I bet your son was pleased when he seen you dressed frank was when he came upstairs and seen me xxx
Frank's been very busy! I'm getting really excited about your stairlift, You will be alright with 2 steps and then you can sit down and relax on the stair lift whilst it does the work. Are you getting it next week? Hope the phone/con went alright and that it did you some good. You will feel tired you've had a very tiring few days. Does the new paintwork look good. I try not to look at mine! Yes, best to try and eat a little bit and often, build your strength up, let's hope you get a good night's sleep. Now some of your problems are being resolved, paint, stair lift etc. you will feel less stressed and maybe a little more relaxed. Matalan went very well, very proud of myself and very grateful. When you go you will find a lot of nice things there, I quite like their Homeware. I bought 3 vests and a pyjama top and a washing up brush. Went round Home bargains The last time I went the shelves were full of Christmas stuff now it's full of Easter stuff. Nice to get back home. How is Frank's cold, I bought some First Defence today and used it before going to Matalan. I've learned so much from this site. Does Frank sneeze loudly, my husband, Mac, does, really irritates me, all those germs going everywhere! Have you decided what you are going to wear tomorrow or will you wear the same as today, I made mine last 2 or 3 times as they didn't get dirty. Am going to watch yesterday's recording of Broadchurch tonight looking forward to that. Do you watch TV? Sometimes it's difficult to concentrate. I expect you will be going up soon. Have a pain free night. xxxxxxxxx
Frank is sneezing very loudly and spreading his germs I will have to get some of that first defence does it work do you think .pleased that you got what you wanted in matalan I used to love home bargains couldn't face it now in case I saw someone I knew .I will probably put same on except pants obviously if I get dressed will try though waiting for phone call for oxygen delvery usually had call by now hope it afternoon slot .Thetes Frank sneezing again he is going for a bath shortly when he finished watching Vera i should have one also real effort at the moment I am freezing cold but heating on high in a minute will be boiling can't win I was going to go up now but i have got pain so taking painkillers and will go when frank comes down I have not sat down stairs on night without him while been ill so hope I don't panic I really know I'm being daft but it is awful to be this way.The paint work looks good but everything needs to be put back in place .I also recorded broad church but like you say I find it hard to concentrate we have just had Vera on but I couldn't tell you what it was about Stair lift should be in next week latest Did I tell you one of the matrons against me getting stair lift she says need to use stairs to excercise lungs hope you enjoy Broadchurch xxx
Hope you had a good night Margaret. Did you manage to get dressed today. I understand your problems having a bath, for weeks I washed myself at the sink, was terrified to get into the bath, was also afraid of the shower in fact, afraid of everything. Like me, Margaret, you will get over this, and soon will gradually start feeling better. Your stair lift will give you a new lease of life. If stairs are good for us, exercise etc., why do so many people live in bungalows? I don't think that battle with the stairs is good exercise. Hope you got up the stairs alright last night. How is Frank's cold! I don't know if the First Defence works, people on this site says it does, it certainly feels potent. Watched Braodchurch last night, very good. Who do you think 'did it'? I like Brenda Blethyn in Vera very good actress. A nice sunny day today, should do a bit of gardening but not ready for that yet! It's very frustrating looking round the house and garden and seeing what jobs need doing. Men don't seem to notice these things. I'm thinking about getting a cleaner. Is it your medication that makes you hot and cold? Antibiotics used to make me perspire at night. Hope you got your oxygen delivery. Have a pleasant afternoon Margaret. xxxxxx
The oxygen man has replaced my ambultory oxygen Twice Frank has filled it and it has emptied itself .The chap checked it over and said the valve was faulty good job I wasn't out with it could have happened anytime .Frank wants me to get up have a bath and go for chest X-ray xx
Whether you have a bath or not go for your xray, do you have to have an appointment? Has your oxygen now been replaced? xxxxxxx
Hi Lillian I never got into bath last night was really shaken when I got upstairs I stayed down till after 10 because I was panicky about going up. part of the reason I was really shaken when I got upstairs forgot to put the oxygen up to 2,silly woman .I haven't watched broadchurch yet but seen last weeks on Sunday might watch it today At the moment his cold not to bad fingers crossed .I like Brenda Bletythn very much good actress .I am still upstairs I really am struggling Lillian going to have to have something done about it I don't think it the medication because he sweats and cold started first I agree about bungalows so first defence will be worth getting do you think. I am rambling a bit aren't I . The man is here with the oxygen they said between 12and4 so spot on .
Crikey Margaret, what a time you are having, I don't know anything about oxygen numbers, how long have you been on oxygen. Did you take your water tablets upstairs? Did you have to go often. You must have been exhausted when you actually did get to bed. Not long now for your stair lift. Just been for a little walk, there's a path at the bottom of our garden and a field with horses lovely. This time last year I was taking the dogs (we have 2) a Cavalier and a pug, for a long walk every day, can't walk very far yet, but don't mind too much, compared to what I was like a few weeks ago. I said to Mac this morning, I never thought I would walk down that path with the horses again. You will get there too Margaret, we will never run a marathon but who wants to! I wonder if you are having an xray today. I hope you do. Let me know what happens. Pleased you have your oxygen. Pleasant thoughts. Lilian xxxxxxxx
Hi Lillian just had a bath exhausting but smell sweeter lol Frank has phoned about Xray I am a bit annoyed doctor didn't tell us it was at the one life centre and Frank phoned the hospital so they cancelled appointment at one life and now I have to go to the hospital more stressful sounds lovely where you live I am getting stressed at leaving house will let you know how it goes xxxx
Lovely that you had a bath, I expect you feel so relieved that you've actually done, it' such hard work when you're not feeling well, but worth it! I found it stressful leaving the house, the thought of it was worse than doing it which wasn't too bad. I was more stressful about Mac's driving, he still thinks he's 18! I expect you will have your results in a couple of days. Hope your afternoon isn't too bad, at least the sun is shining xxxxxxxxx
Mac thinks he's sterling moss does he .The bath was hard work but at least managed with help from Frank The sun has been in and out all day bit like me hot cold hot cold When I got to the hospital the receptionist was really rude and directed all her questions to Frank even though i spoke to her I went on oxygen December 23 hate it feel trapped but hats how it is .My son and grandson called round this afternoon son hurt his back at the gym went to bathroom when we got home nearly absolutely shattered me had a go at sorting some draws but ended up in tears when I saw all my lovely clothes I will never wear again .Had to admit defeat and use commode in the shed this time because if ii had gone up now would have stayed up .I bet your dogs give you a great deal of pleasure. Never got round to broad church yet Frank watching antiques road show flipping acorn stair lifts been hounding again today that company are shocking hope you having nice evening Margaret xxx
Why won't you wear your lovely clothes again Margaret? Have you lost a bit of weight, if that's the case you will have to put more weight on when your appetite comes back or buy new clothes! That nurse was so insensitive, it should be part of their training to talk directly to the patient and not the person they are with! You feel like putting your hand up and saying 'I'm here'. I hope your son wasn't hurt too badly at the gym. Lovely seeing your grandson. I was so selfish when I was ill, didn't really want visitors and always pleased when they left, didn't even want to talk on the phone. You did such a lot yesterday, had a bath, went for xray, had visitors, why did you decide to tidy your drawers, no wonder you were weepy, you over tired yourself. You did it though, very well done Margaret. If you have to use the shed at the moment the weather is better for it. I expect you're feeling a bit tired today, watch Broadchurch! I hope you had a pain free night and didn't feel too hot or cold. Tell Acorn you have ordered a stair lift from another company, they would then have no reason to call you. They were very pushy with me. Have a relaxing afternoon. Lilian xxxx
Afternoon Lillian I had another bad night with the sweats was that bad that frank got up at 4am and gave me a bed bath
.Message went to soon sorry about that we told acorn we got another company and they asked who I told frank to tell them was none of there business they are shocking .That receptionist at the hospital was horrid pity I didn't have that shotgun lol .It was frank who brought draws for me to sort I really could not be bothered but done A bit to please him more clothes for charity shop .I know what you mean about not wanting to see anyone when you are ill but rarely see my grandson I know it difficult for him to see me like this .I hope to watch broad church later .Well Lillian I have done it stairlift installed seems like the end of a era but what choice did I have I got a rental have to walk first couple of stairs but while I can less intrusive than the curved .I really need to put some weight on could have cried when I looked at myself in the bath .I hope your dog ok after visit to the vets have you had your dogs along time love Margaret xxx
Sorry you had a bad night Margaret, are you downstairs now or having a duvet day? What would we do without our other half? I hope Frank is also getting enough rest and his cold is better. I do hope you are having a relaxing afternoon, the sun is shining and the birds are singing. Has the doctor suggested anything for your rise and fall in body temperature? Miserable time for you at the moment, it will get better! xxxxxxxx
Hi Lillian I am downstairs and dressed don't know if you read my other message yet first one went to soon slip of the finger .I Had to be up for the stairlift people will have to have a few practise runs lol I think Frank has passed his cold on to me but what can you do when you in same house .I think he was very tired yesterday when I went to bed he said he was going to do a few things but he fell asleep .The doctor doesn't have a clue what to do about my hot and cold turns but they are a night mare .I finish antibiotics today but still bringing up gunk take care Margaret. Xx
Gunk better out than in! Frank really needs to get some rest, he needs his strength to help you through this bad time then when you are better you can help each other. You will turn a corner soon Margaret. I wonder if you will feel better when antibiotics are finished. Hope your practise runs go ok. Lilian xxxxxx
I've just read your 2nd message Margaret. Wow, you've got you lift installed, that was quick. Have you used it yet? Are you nervous about using it. Lovely feeling when you can sit down and it carry's you up. How do you find the first couple of stairs? Can you manage the lever at the side that turns you round when you get to the top? Yes, straight lifts much less intrusive. I'm so pleased, it certainly will help you. You can always put that weight back on, would be a lot more difficult for you now if you were overweight. I lost about 1/2 stone, the mirror tells me I look ugly and flabby!! Can you manage the lift with your oxygen. You don't have to fear going up tonight. You will start to feel better soon. My Cavalier is 11 and the pug is 7, my daughter came to look after them and me when I was ill, I didn't really care about anything. Your news gave me a 'lift' today Margaret, thank you. xxxxxxxx
I lost over a stone and half since Xmas mirrors are awful aren't they .So far no problem first couple of stairs fingers crossed .just a bit of jigging about to find best way to carry the oxygen and use the lever to turn will have to play about with it .The lift took less than a hour to install I got two remotes with it .Frank was playing about with it I said what are you doing he said just checking it over for you .I think if I buy one in the future would probably get remote seat .You have had your fogs for sometime I bet they are good company my grandson has a little Yorkie he is 14 now Callum was nearly 3 when they got Chelsea xxx
That was quick for the installation, mine was about 2 hours but had to drill hole through wall for lead to fit in socket. I think hiring is better then if you decide to buy, you know exactly what you want. They are very quiet aren't they. Mac said I look quite regal going up in the lift, I said, 'don't be an idiot!' I like Yorkies, very good age 14. Just put a few sausages in oven for tea, Mac's gone to Morrisons to do shopping. Had a little walk this morning, I could now go a bit further but afraid I might not make it back! I hope you can relax a bit more now that the worry of the stairs has gone. Have a pleasant afternoon. Lilian xxxxxx
Afternoon Lillian Frank did the socket himself Frank! Is going shopping this afternoon I wish I could do some cooking not allowed to use oven 2with oxygen feel so useless .The lift is a lot quieter than I expected I don't feel confident enough to go up without Frank just yet so will have to go to bathroom before he goes out .I would love just to put my coat on and go for a walk but no chance of that at the moment lysine care Margaret xx
A very good afternoon to you too Margaret. I know what you mean about cooking, I'm not keen but it's nice to have the choice of doing it if you want to. You will soon get used to the lift, and forget your misgivings about it. How long do you have to be on the oxygen, is it a long term thing. As I have mentioned, you are the only person I talk to that has copd, so don't know very much at all about oxygen and stuff and what I do know I have learned from this site. When you do feel well enough to go out you won't need a coat just a cardi. What a lovely afternoon! Lilian xxxxxx
Hi Lillian the oxygen is permanent. I started of on 16 hours a day but now I am more or less 24 hours which is upsetting but every time I come of it my sats drop it used to be nice just to sit watching tv without a tube permanently stuffed up my nose .It does look very nice outside as I say frank is out shopping I just sat waiting for Jim to come home I do do miss my old life xxx
Hi Margaret, how do you feel now that you have come off the antibiotics. a bit better I hope. How are you getting on with your stairlift? Lovely day today. Had insomnia night before last, for no reason, so yesterday felt exhausted, today I'm alright. How long have you been on oxygen? What was your health like before this awful setback? Do you think that because you are on oxygen it's taking you a little longer to get over it? Hope Frank's cold is better. You will get some of your old life back Margaret, you have a good few years in you yet! Don't suppose there's any news about your xray yet. Have a nice relaxing afternoon, can you manage to sit in the sun? Lilian xxxxxxxxx
Hello Lillian I have not got up yet yesterday Frank called the doctor out the occupational therapist had come to talk about. Stair lift. She seen that I looked unwell and advised frank to call the doctor I had been in pain all day and bad sweats Thursday. Night With he doctor gave more antibiotics but said not to take care bless really necessary couldn't give me anything else for a he pain and I asked if I could get something to help me sleep but she said no .I am sorry you had bad night with no sleep it's horrible.I have been on oxygen since December franks cold seems a lot better .I have decided to stay in bed later this afternoon will have to have a bath that will shatter me so will probably lay back down then try to get up for couple of hours I have a terrible thirst today enjoy your afternoon xxx
I'm sorry you're still feeling so bad, a bit of a waste of time the doctor coming, have you started the new antibiotics? Do you take Amytrypiline (sp) or anything like that? I've been taking sleeping tablets for about 30 years but I wish I didn't! How was your health before December. Since I was diagnosed about 10 years ago, had a few chest infections and a few bouts of pneumonia and recouped quite quickly but this last one knocked me for six, didn't think I would recover from it. I do know how you are feeling, but it will pass. I hope your bath was not too difficult and you manage to get a few hours downstairs. Have you got the hang of the stair lift yet? Just been down to see our son's flat which he is renovating for himself, he separated from his wife, it looks very nice. Such a lovely day. Wonder what's causing your thirst, drinking plenty of water will do you good apart from having to use toilet more. Have a pleasant evening. Lilian xxxxxx
Hi Lillian my son is all so separated from his wife but they on good terms my health was a bit like yours till November .I haven'thad bath yet feel exhausted .I continuously thirsty drinking and peeing so perhaps it better I stay upstairs today. .I haven'tstartedantibiotics yet .I will wait till I see matrontomorrow she wants a sputum sampleI am gettingto grips with lift never used it without Frank at hand yet it is very smooth. I watched Broadchurch strange endingI don't know why reply gone like this love Margaret xxx
I used to have quite a lot of days in bed when I was ill, I went 2 weeks without going downstairs, I think the rest did me good, although once I got downstairs I couldn't get back up again. Must be a heck of a lot worse with oxygen! Let's hope your sputum test tomorrow doesn't get lost again, what time is she coming? Why do you think you will be on oxygen permanently? Do you read in bed or watch TV? I would be lost without my PC or Ipad. I do hope you have a better night, it's about time. Lilian xxxxx
Matroncomingabout 4oclock she said yes let's hope it doesn'tget lost again I Have been told it's permanent I keep gettingtangled up in the cable nightmare .I used to read a lot haven'tsince December although still have book with me just in case I play solitaire on n I pad or just stare into space so boring xxxx Margaret
I find playing solitaire very relaxing, never bored, stops you thinking of other things, better than staring into space, which I did and still do. I spend hours playing solitaire, my guilty pleasure!
Me again Lillian a Doctor won't give me anything to sleep tried herbal tablets done no good have to ask frank to knock me out with a mallet haha love Margaret xxx
I tried the herbal tablets I think they were in a green box but no good then I tried The ones in blue box and they were very good. Nytol they are called. I expect Frank refused to knock you out, bt if anything like Mac he may have been tempted, I wasn't a good patient. Love Lilian xxxxxxxx
I have tried nytol both types but that was some time ago I think frank may be tempted lol .He has boughtme S inflatable ring to lay or sit on because my backside uncomfortable probably with loosingweight and sitting or laying all the time but it to uncomfortable oh well he was thinking of me xxx
Hope you had a good night and no bed baths! What a shame you can't use the ring, I hope you're not too uncomfortable. Lovely day again. I'm still in my dressing gown, have a bit of a cough and a bit more mucus, which is green, don't know whether to start antibiotics or wait and see if it gets worse. I sometimes overreact. My daughter is here she is helping to cook our dinner today. I might just go back to bed, but will probably sit in the garden. I hope you're feeling a bit better Margaret. Love Lilian. xxxxxx
Hello Lillian it is difficult to know when to start antibiotics .I have not startedmine yet waitingfor the matronto come she said it will be about 4 o'clock I was soaking again last night and I have had a bath this afternoon I really need my hair washing but can't face it .I am sorry you are not feeling well isn't it nice of your daughter to have with lunch .Frank made some but I just have no appettite .Once again I am not dressed it is really makingme so low being like this .My sats have been dropping very low love Margaret xxxx
I think I may have panicked Margaret. I took my rescue pack of steroids and antibiotics and don't feel too bad now. Got dressed had dinner, no wine, I feel like going to bed now but I can't just up and leave. Mac and my daughter and son in law are now playing scrabble. I hope you got on alright with your matron. Could she give you anything for the soaking? That must be awful.. Hope having a bath wasn't too traumatic! I read that some people never was their hair because they say, it cleans itself. All the things we used to do automatically now have to be planned and it is such hard work. Another thing that goes, the appetite, it's good for me as I could lose a couple of kilos, but not you. Always before I go to bed I have a vodka and tonic really relaxes me, and I enjoy it! Hope your sats get better. I think you and Frank are doing a really good job, overcoming all the hurdles. Shall we start looking for the light at the end of the tunnel for you both? Love Lilian. xxxxxxxxx
Hi Lillian the matron never came she said she is on emergency call out she is coming about 9 tomorrow which is early for me .However I am having problems with my sats they are dropping all the time I have been checking them every half hour and they are in the 70 s and low 80 s. So don't know whether to call 111 .or not I am scared .Glad you feeling better now hope you enjoyed your meal and enjoy your vodka that is what I used to drink I also used to like scrabble sometimes I play it on I pad xxxx
E
Yes, call 111, just to be safe
Just wanted to send the other one quickly Margaret. I don't know anything about sats, but the fact that you are very worried is all I need to know. Blooming matron not coming, I know it wasn't her fault, but you were relying on her visit. Let me know what happens. Love Lilian. xxxxxx
I will let you bow what happens my sats suppossed to be between 88 /92 xxx
If I don't hear from you tonight, I hope you have a much better night. Love Lilian xxxx
Thank you I hope so to I am writing my sats down so I can show matron tomorrow if I don't phone 111 xxxx
Please phone 111 if you are at all concerned about your sats. xxxxxx
I've told frank that is what we should do but I think he wants to wait for the nurse if I feel ill I will get him to xxxx
How are you feeling this morning Margaret. Did the matron come? I hope your sats are better. xxxxxx
Good afternoon Lillian the matronhas been .Frank has gone shopping so I have come back to bed .My sats are better than yesterday I am sweatyand in pain so better in bed when Frank out .I hope you managed to get a good nights sleep last night I just dozed .The matronSaid my sampleturned up there was some bug in it but couldn't say what because I have had so many antibiotics .She told me not to take any until she got results from what she took today l.hope you enjoyed your vodka last night I will see how I feel and might have one tonightxxxxx
Good that your sats are better Margaret but not good that you are sweaty and still in pain. I wonder how long it will take to get your sputum results back. Have to take our Cavalier to vets for a check up, she hates the car and yaps from the time she leaves the house until we get back, goes right through me, she's a lovely dog though, I wish I felt more up to it! Still has to be done. I have been so wrapped up in m health over the last months that I have shut everything else out. Had a call from the pulmonary rehab today, they are going to send me a letter regarding an assessment day. I took another antibiotic today but no steroids, feel ok but mucus still green. Hope you have a relaxing afternoon Margaret. Love Lilian xxxxxx
Hope your dog wasn't to noisy in a he car and you feeling a bit better I am fed up of feeling hot then cold seems to be no happy medium .How do you feel about PR .i asked the matron today she said there is a long list .I went up to bed when Frank went out got up at 5 didn't sleep .I have no appetite I had toast for breakfast yoghurt for dinner and same for tea the matron asked if the dietician had been in touch Broadchurh tonight will record it watching Vera now I hope everything ok at the vets xxx
Hope you're having a better day Margaret and that you had a better night. Your appetite should start returning soon, I eat a lot of yoghurt, prefer lighter meals now. Annie, our dog, was quite good in the car and at the vets so it was alright. My vacuum cleaner broke down so ordered a GTECH yesterday and it came this morning! Having 2 dogs we need a strong cleaner. I hope this one does the trick and I hope it's light enough so I can use it. A bit cooler today but still nice. Are your sats better now? I will watch Broadchurch tonight, then watch Vera on Catch-up. I think I will walk twice round the garden and then have a game of Solitaire. Have a nice afternoon. xxxxxxxxxx
Morning Lillian I can't get myself motivated I am still in bed had a couple of hours sleep but still feel worn out .I have counselling at 2.30 for what good it does .pleased Annie was good for you yesterday .Hope your vacuum cleanerdoes the job .My appettite has disappeared all I ate yesterday is yoghurt and toast .I Have some porridge this morning .I recorded Broadchurch to at church later and will be playingdolataire as well take care Margaret xxxx
I know what you mean about motivation Margaret. I have a big lack of it. But it's coming back gradually. Whilst you are feeling ill just do things you are comfortable doing. Doctor's and nurses and councillor appointments are all stressful but very necessary, don't stress yourself out about other things. If you feel like staying in bed longer do so, do things at your pace. When you get your health back you can think about motivation then, if you want to. Have a stress free afternoon. Love Lilian xxxxxxxxxxxx
ThanksLillian hopefully like you I will get some motivation back love Margaret xxx
Hi Margaret, I wonder how you are today and if you had a better night. Are your sats still low? A bit cooler today. I hope you managed to get downstairs today without too much effort. I had a couple of walks round the garden this morning and got a bit sob, very windy, wondered if that caused it. The new vacuum works very well, was amazed at the amount of dog hair and stuff it removed. I hope you have a pleasant afternoon. Love Lilian xxxxxx
Hi Lillian yes the wind would make you sob plus the excercise .Im pleased your new vacuum cleaner is doing a good job .I don't know whether I will make it down stairs today just been to bathroom and sats fell to 59 really low I am sat on bed eating porridge either lunch ot breakfast no appettite and my sats are only 79 it is a real worry and I'm bringing up the green stuff are you still I know doctors don't reall y want me to take abs till they have results back I'm fed up of it all take care Margaret xxx
Hi Margaret, I bet you are fed up with it all! It seems that if your doctor and nurse don't think there is any danger with your low sats, try and trust them, if they were really concerned they would do something, then again, if you are really worried I would ring 111 just to get a second opinion and to put your mind at rest, you have every right to do that. Did you manage to get downstairs? I suppose with your low sats you're afraid to. I'm not taking the antibiotics now, I feel better, not having any mucus so don't know what the colour is. I think my COPD is emphysema so not too much mucus. When will you get your results back, soon I hope. Did your sats go down when you stopped the antibiotics? Do hope you feel better soon. Love Lilian xxxxxx
Hi Lillian I came downstairs at 4.00 my sats fell to 64 when I got downstairs I am bringing lots of green mucus up and my pain is just unbearable even with Meds .Frank phoned BlF for advice but the nurse on holiday this week .He then rang the matron and she said not to take the antibiotics till the results are back I am really fed up I bet you sick of me moaning .I am pleased you seem to have shaken of infection hope you have had a good day did you watch Broadchurch I haven't yet take care love Margaret xxxx
If I felt like you do Margaret I would moan a lot more than you, in fact I have done. This has gone on for so long now. it must be getting unbearable for both you and Frank. I don't think the antibiotics you were on are very effective, they didn't work on me, when they find out what your infection is they will put you on stronger ones, which hopefully will do the trick. Which antibiotics did the doctor/nurse leave you the other day. Where is your pain? I watched Broadchurch last night very good. How are you getting on with your stair lift? I think you are so overwhelmed with your illness at the moment any outside benefit will not help until you until you can get rid of your pain and utter discomfort. When that lessens you can then appreciate other things. I hope you have a better afternoon. Love Lilian. xxxxxxx
Hi Lillian forget what antibiotics are they are down stairs begin with a c I watched broad church last night my pain is beneath my left breast and it is now going under arm I have just had a bath and hair wash I could cry looking at my body I will try to go downstairs later but at moment can't I hope I get to know about infection today because good Friday tomorrow I been told love Margaret xxx
Hi Margaret the antibiotics beginning with C knocked my infection for six, after a couple of days of feeling worse, I forgot to take the 1st one with water, essential, the infection started to clear and I felt better. Felt well for2 weeks, then had a visit from relative who had the flu and back to square 1 and back on antibiotics and steroids, now fine. That started last October lasted until end March/April. Your pain must be awful, what causes that? I had a few pains round that area the doctor gave me some Ozomeprole sp. and that got rid of it. Your pain may go when your infection has gone! Must have been hard work having a bath and washing your hair, but it's done now. Don't force yourself to go downstairs if you don't want to., just rest. Be kind to yourself. Love Lilian. xxxxxxx
Hi looks like your pain was gastric this isn't its like you are being stamped on and squeezed had it since January I Definitley feel a lot fresher after a bath but could only bare to stay in it long enough to have hair washed totally shattered me I am hoping to find out when or if I can start abs did you watch Vera think it was last one still got firms phoning about stairlift they never give up .i am fed up of this life Lillian totally cheesed off xxxx
Hi Margaret, I wonder if your ambulance as come yet! I'm pleased you are at last getting the attention you need. Just relax and let them look after you. Hope you come back home feeling much better. Love Lilian. xxxxxxxx
Hi Lillian ambulance people phoned said they where very busy so we came in car about 9 pm last night have to have a ct scan and I on I'v drip also been told have fibrosisI am devastated. Managed to connect to wifi but not sure when can again take care love Margaret xxx
Hi Margaret. I expect you were shattered when you eventually arrived at the hospital, do you feel a little bit more relieved now that you're being taken seriously? At least you're on the right ab's now. I don't know much about fibrosis, but let's hope you get the right medicine to keep you at bay. Are the doctors working over Easter!! Try and relax now Margaret, there's nothing else you can do. Look forward to hearing from you whenever you find it easy to do so. Good Friday today! Love Lilian xxxxxx
Hi Lillian it seems fibrosisis very bad I am scared Lillian xx
I know you're scared Margaret, but nothing can make you feel worse than you have the last few months. Maybe now you can get the correct medication and there will be an improvement in your wellbeing. From what I read many people have lived with fibrosis for years, someone has had it for 20 years! Let's wait now until we get the results of all your tests and keep our fingers crossed. Try and eat a little, they may give you a sleeping pill tonight if you ask. Hope you can relax a bit this evening Margaret. Love Lilian xxxxxx
I hope you had a reasonable night Margaret and managed to get some sleep. How are you feeling today. Do you have to take anymore tests? I hope the hospital is not too far from your home which will make it easier for Frank to visit. A bit nippy today. Look forward to hearing from you when you are able. Love Lilian xxxxxxx
Hello Margaret, I do hope you are feeling a little better. I wonder how long you will be in hospital. I miss our little chats. I hope you are being well looked after. Have a pleasant day. Love Lilian xxxxx
Hello Margaret, I hope you are benefitting from being in hospital, I also hope you are being cared for. Are you managing to sleep? I find hospitals very noisy at night. I think of you often. Get better soon. Love Lilian xxxxxx
Hello Margaret, I expect it's difficult for you to message anyone. I hope you are improving and feeling the benefit from the attention you are hopefully receiving. I miss our little chats. Love Lilian xxxxxx
Hello Margaret, I hope you are feeling better. Would love to hear from you when you are able. Love, Lilian. xxxxxx
Hello Lillian quick line to let you know I home will contact later thank you so much for all kindness xx
I can't tell you how pleased I am to hear from you Margaret. Very pleased you're home. Can't wait to hear all your news. Love Lilian xxxxx
Time-you are overwhelmed and scared for your health too-Just remember it will pass---Believe me we all go thru it and you aren't alone-Have yourself a weep if you need one(that's what I end up doing) pick yourself up and move on--Much Love,Mmet
Maybe when I stop having infection after infection and get the pain under control I will be able to be in a better place everything getting to me and the horrid sweats so bad that bedding nightwear got to be changed and no energy to do it just a viscous circle best wishes
T2D--well it certainly tries on doesn't it? You are not well and it is wearing you down--I wont say rest--you've been told that--but do remember it will get better--It cant continue forever---I know Ive been so weak and tired I thought id die if I took one more step--oh its ugly--I was sleeping 12-24 hrs at a time a few months ago--now I cant sleep and everytime I do I wake up so hot I think Im going to implode-I threw my smokes out the window and the demons flew in--Few good days now-Blah at best but hoping for better--It is slow and been less than a year--Just going to drs throws me into anxiety--and there has been a lot of it--Hang in there--Im with ya kiddo MmeT Now I have cataracts--its like what next--Is an arm or leg gonna come off?
I also can't sleep when I go to bed I just want to sleep forever but the odd hour is all I get doctor won't give me anything .iI pleased you having some good days now hope you get many more hopefully when your eyes sorted you will have more I know what you mean about anxiety It felt like mental torture going to hospital yesterday i look out my window see people walking by carefree and close my blinds 😷
Hi Lillian being admitted to hospital I have to go on a drip because only one antibiotic doctor could give me so waiting for ambulance don't suppose be able to message in hospital will speak text when home love Margaret x
It's so stressful to be so dependent on meds and the medics sorting you out. I have also had lots of probs with chemist giving me lots of what I don't need and none of what I need. I know it sounds selfish but you have to stay strong for the rest of us. Just when you think there's no hope you will turn a corner with your health.
Best of wishes
Sandra x
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