It's slowly beginning to dawn on me that having COPD simply takes over your life...from lugging oxygen about to buying vitamins and Manuka honey and stuff to squirt up your nose 'cos of germs and remembering to use your hand gel and not being able to tolerate the perfumed stink of Ariel washing powder but needing to buy proper Eco-Friendly and thinking about getting a de-humidifier and trying to keep warm and not even putting your nose out of the door if it's frosty or windy...
Then you have to have hobbies. You can't just sit about all day staring into space so money has to be spent providing you with an occupation...well...it does with me 'cos I have to have wool and fabric and pay for Ancestry and books on my Kindle...
Showering, instead of wallowing in a hot bath...remembering to keep away from the kitchen when the gas cooker is on...unless you unplug yourself first of course. Shopping takes on a whole new level when the tubes from your tank get tangled round your glasses and small children ask in loud voices Mummy...why has that lady got that in her nose? When I smile at them they burst into tears...
And you get bottom wind. I never used to get bottom wind...but I do now and it's usually in a crowded place and I stick my nose in the air and pretend it wasn't me...
Wondering if you can still buy shoe horns 'cos you can't bend double to get the backs of your shoes on properly...and those slippers you see advertised in the backs of old-fashioned magazines...the ones that are fur lined and have a zip straight up the front...you look at those and think they must be comfy...if they came in nice bright colours I might buy a pair, but they are brown and grey and an awful sort of plaid.
Going to the hospital to see someone or other and having a porter appear out of nowhere with a wheelchair that he forcibly shoves you into...I can walk, I wail...and I drum my feet and wriggle about and he wheels me into the lift without so much as a by your leave...keeps up a constant line of cheerful chat and asks where am I from and I tell him and he laughs...Bandit country, he says. Go on he says...guess which part of the country I come from and I raise my eyebrows and sigh and say Mayo? Good woman yourself, he replies...
And people treat you as though you're do-lally...the x-ray person asked the nurse who was with me 'Is she wearing a bra?'...I piped up...No, She isn't...they did have the grace to apologise though. Said she has many dippy old ladies coming through her door...thought I was another one.
The last time I met with the consultant she asked was I beginning to accept my limitations...and I said I wasn't...never would...you slowly begin to learn to live with them...but accept them? Never.
Another enjoyable read with aspects that I'm smiling at , as that's seems life to me too. The only difference is, I can accept the illness it's here and very visible to myself and others , learning to live with is difficult, It changes the rules daily, limitations have good and bad days, when I'm busy it makes me tired, when I want to be happy it makes me cry, when I want to join in with the fun it quickly reminds me to just Sit and watch, and my pet hate is lying but around family and friends I've now become a serial liar as to not disrupt their lives to much with this life destroying illness. But hey ho, I'd never have met my HU family without it, so hey Alpha 1 take note it's the only thing I will thank u for. Xx Sonia xxx
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That hit a chord Sonia, i too am a serial liar for the same reasons, had a tough year 'til last october, and think family/friends are well aware of my limitations these days!! Much love Kin Xx
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It's the tiredness that gets to mine...or used to, they aren't as bad now.
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Hi Sonia I know what you mean about the lying where family is concerned though now I am slowly letting them know that tiredness is a common side effect of COPD especially after eating. I find that since being diagnosed my emotions have changed. I laugh a lot more but feel very tearful at anything sad in the news or in a TV programme and don't watch anything with violence in it. I haven't told them that my lung function is at only 42% though I know many members on here are much worse but still do there best to keep as well as possible. X Joyce
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That's me as well...I cry over sad stories which I never used to and get more angry as well over injustices...and tell fibs about how I feel...lol
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I lie as well...' I'm grand...not a bother on me'...lol...mind you if you say it often enough you begin to believe it...xxx
Another great read,and a smile,it's just amazing when you tell us things it's as though we are with you, it like they say "it's the way you them em". I know what you mean about the slippers,Lol
Dear Vashti, your writing is always of great interest, so descriptive, I was wondering if you've ever considered publishing your writings? It could go towards publicity for COPD, just wondering and please keep writing ! x x x x
Vashti if I end up as loopy as you that wouldn't be a bad thing
Hi vashti I refuse to give too. You have to deal with things far more than I do, but I feel this inner power radiating from you, I've been told I have it too. The wheelchair thing is to do with health and safety and all that, I'd love to see how these doctors and NAFF Dieticians woud deal with what you do as you about your daily love! Love LeeLee. X
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Health and Safety my eye...I think the porters just get bored!
So very true Vashti, 'though i always try to find the positives. Just think if you did'nt have COPD you would probable be to busy to write your lovely posts, and that would deprive us all!! Love Kin Xx
Morning Vashti, Everyone who has or been involved with Lung disease knows exactly how you feel, It really does take over every aspect of ones life, You obviously cope extremely well and thank God have a wonderful sense of humour, Take care of yourself, Bulpitwas
Hello Vashti, I laughed at your story but it is not funny when we are going through it. I was so angry when the doctors treated me like some dim wit who did not know what they were upto. Never mind though now I am wiser as they say and they don't tell me fairy tales any more!!! Plus as I reminded my local hospital some people might be offended by things like the nurses bra comment. Thank you for the daily story sums up the daily life of many on this site I am sure xx
Honestly Katie you need to see the funny side of situations don't you? I've learned over time not to be put off by Doctors and the like thinking they can use jargon because I won't question it...I do. And if I don't understand I'll ask them to repeat until I do understand...!
I related to your story in every way. Luckily I have only had one exacerbation, which was in UK before I was on oxygen, and I had to go to A&E. I did not get out of hospital for 8 days, as I required Oxygen and intravenous antibiotics. I had seen criticism on TV about hospitals in UK, so I was not surprised by what went on, but was horrified that it was allowed to happen.
They could not find an empty bed for me, so they found a frame and a mattress which did not fit. Luckily, for the first two days I was 'out of it' as my temperature was so high. Once I realised that the bed was the way it was....mattress sitting at an angle of 45 degrees across the bed, and hanging over the edge....I complained, and got a new bed after 3 days. The staff shouted at me as if I was deaf or stupid.
I had all my prescriptions and medications from France with me, and , in spite of feeling ill, I managed to translate anything difficult for them. I asked them just to give me the French meds., as it would be easier...Oh! no. Instead I was awakened one night by a doctor pushing a pill into my mouth and saying, "Come along dear, just take this for us." As I did not know what it was I spat it on the floor, and then discovered that it was medication which would have kept me in a 'dopey' state, and one I had been offered in France, but refused.
Most around me were ladies in their eighties and nineties, and they did little else but sleep. A younger lady was brought in to the bed next to mine. but she was sent home as she had MRSA, (one of the main super bugs) Finally they moved me to a side room beside an elderly lady with Dementia, who spent lots of time during many a night emptying her bag and searching for hearing aid batteries, while the hearing aid sang to me. She kept ringing her bell, and, by the time someone responded, she would be asleep, so they did not respond to a bell from that room very often, (and that included bells from me.) Nurses used to have loud conversations outside this room, as " Don't worry about her, she's deaf!"
My husband is ex-military, and I did suggest to the consultant that the military could learn from this hospital about torture using sleep deprivation and white noise. Luckily he had a sense of humour and allowed me to leave! I slept for two solid days when I returned to my sister's house!
We are returning to UK to see family in 2015, but I will have a POC (Portable Oxygen Concentrator) with me, and a rescue pack of medications from my specialist to get me through all possible problems, (Fingers crossed!)
They dole out sleeping tablets here in Ireland...I'd have been a shadow of my former self otherwise...the old ladies slept all day and then were awake all night...lol
Good for you vashti - know your limitations, yes but accept them, never! I do not like it if people don't even acknowledge the person sitting in a wheelchair or wherever, it is rude and not nice. Pete is not in the same position you are in and does not have oxygen but he does suffer every minute of each day with his breathing and his bad back, which we hope will be seen to sometime this year. He knows that his life has changed, and as his wife and carer so has mine, but it is what it is and we get on with it. Sarcoid in his heart is yet another problem added but we carry on.
I think a good hobby for you could be making plans for some lovely colourful zip up slippers that people would actually want to buy. In the meantime, stay as well as you can, keep smiling and don't let anything or anybody stop you from living your life to its fullest potential.
Thinking of you and wishing you well. Spring is on the way. xxxxx
All you can do is carry on and make the very best of your life...may I ask why Pete doesn't have oxygen? It sounds as though he may be in need of it...
As for slippers...see the link that Valcopd left...seriously bright and colourful slippers and some of the boots are on my 'gimme' list...lol
Pete has not been assessed by the Royal Brompton for some time now as his back is so bad but hopefully he will see someone this year. He has not been considered in need of oxygen but that may change in the future.
The slippers are fun and great colours so I hope you get some soon.
My favourite is my body isn't broken not my brain, I can amazingly still think for myself. I may be limited to how much I can physically do but there's still plenty I'm capable of.
I no what you mean I try to beat this I push and push myself my family treats me like nothing wrong I don't no if that's a bad thing I get up go to work come back do house work cook tea then go back to work 5 days a week by week end I am ill takes me al week end to get over it by Monday I do it all over again I mean how far do we go to show family fiends and people that we can do and nothing changed we are the same person as we was before x
Vashti, your ability to express the experiences that come with this blasted disease are priceless. Your humor, emotion, frustration and maybe a little anger touches most everywhere I've been. I have found trying to explain myself to my Children is futile. So,I just keep on going. I also have afib and a very erratic heart rate. The ekg really gets the cardiologist studying. I was finally given a pacemaker 3 1/2 yrs ago that made a dramatic difference in my breathing for a time. It's still better than before but I can tell as I have periodic "spells" that I'm shorter winded. I cannot begin to say how this site has been such a place of comfort, reassurance and though I don't know you, I feel a kinship.
As someone else mentioned, you should think of writing a book!!!
Nice post vashti. I don't let it rule me. I'm lucky that I don't need to lie as my OH and my grown up children fully understand what I have. Unless I'm poorly we don't really talk about it as they are used to me taking my time if need be.
Hi Vasti I enjoy your posts! And I know many people with COPD and on oxygen and I can honestly say the ones that truly inspire me are the characters that live for today! No matter what their age or limitations they continue to enjoy life and yes spend all their money on wonderful holidays. keep active and let COPD fit in with you!
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