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British Lung Foundation
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A Few Awkward Thoughts...

Need to get a grip...have to remind myself there's time and nothing has to be done now...today.

The sky won't fall in because there's still one kitchen cupboard to paint...

If I don't get dressed it doesn't much matter either...at least t-shirt and cotton pj bottoms don't look too awful...

Doesn't matter in the scheme of things if I spend an entire afternoon reading about smugglers...

Nothing terrible will happen if I eat salad every night for supper and have a bowl of strawberries for pudding.

No-one's going to be cross if I read every single book John Connelly has written...one after the other. Even if I am gobbling.

I don't really care about the dust bunnies under the chairs...or all the scraps of paper with 'important information' stuffed between the books on my desk...

Doesn't matter if I want to go to bed at eight-o'clock...the birds wake me at 3.30am so I'm entitled to be tired...

Sometimes, you see, I'm still adjusting to a life with COPD...still sometimes struggling to make allowances for myself...going from thinking my asthma was getting worse to being told, practically overnight, that I have this illness that I'd never heard of before...the gradual realisation that 24 hour oxygen helps but doesn't cure...sometimes it doesn't even help at all...

Being CO2 retentive makes me slightly doo-lally...my memory goes haywire and I find myself staring into space with a blank where my brain ought to be...

When I told my Consultant that she said it has much to do with the 'artistic' side of the brain...in much the same way my daughter-in-law is with her temporal lobe epilepsy...she might be right of course...who's to know.

No point in simply giving up of course...

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19 Replies
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Hi Vashti well said, easier said than done most times, my cat has decided 4am to 4.30am is a very good time for me to be up, even today when him indoors got up with him, he still thought I was in bed to long, however I did see a wonderful sunrise and I feel so bad going to bed early but hey ho needs must. I do find memory problems especially passwords hard to deal with as up until 6 months ago I did have a wonderful memory and boss always said how on earth did I remember everything from years ago, oh if she could see me now

I agree Vashti, we worry far too much about unimportant things. why on earth is that?

My mum and my mother in law were like chalk and cheese. My mum was easy going and never worried if the place was untidy. My mother in law was super fussy and everything was always in its place. when the time came for us to move my mum into a flat near to us, we decided we would carry out the move, with her consent of course, while she was on holiday. I arrived with my husband and sons and van and Mum had not done the slightest thing to suggest she realised she was moving. Her breakfast things were still on the table! Young son said 'Mum, are you sure Nan knows she's moving? '. did it matter? Of course not and we have laughed about it many times. iris x

I loved that story about your Mum... xxx

I guess Mum knew her priorities. she was 85 at that time and I guess getting ready for her taxi and then coach trip to Eastbourne was as much as she could manage. she had bad osteoporosis but didn't let it stop her doing what she wanted. Still miss her very much. iris x

No point at all dear Vashti xxxx

I agree Vashti, my house has been the same (for different reasons, I've been involved in Wedding preps, Matron of Honour), life goes on even if there is dust on the tv cabinet, coffee and wine stains on coffee table, half made crochet blankets behind the couch!....Someone once said to me what would you rather have on your gravestone....A: She was a really good housewife or B: She really made the most of enjoying her life...Needless to say I'm following the option B...& now I'm going to have to look on my kindle for John Connelly books;)....thanks for the recommend x

I know it doesn't matter...goodness knows I preach that often enough...just felt over-whelmed for a while...xxx

It's a good and positive way of thinking Vashti. Nothing matters that much that you have to feel bad about keeping up to date. I have only a finite amount of energy now and on the days that arthritis pain adds itself to the mix nothing much gets done here!

I often think that, if my house was open to the public, Environmental health would close it down. When I expect visitors I scoop things up and dump them on my bed, have a little tray made up for coffee so that nobody can see the chaos of my cupboards, pile books, magazines, craft stuff that usually litters my big table on the bedroom floor, shoes that clutter the hallway get put out of sight. A couple of clean tea towels get hung on the cooker door make it looks as though I am just this side of hygienic and also cove up the grubby glass door. Down to a fine art now and a massive effort to put things back on the clutter pile when they have gone.

The ironing pile gets covered so it looks as though I am on top of things. Close family gets to see the real thing though.

I could identify with that scenario Polly. Trouble is, by the time I've cleared all the clutter away, I'm tired and take a while to recover. I always feel I've got to give the bathroom a pretty good clean, not that its bad but people may look a bit closer in private just to see if I'm coping! A lot of clutter happens because we try to save ourselves journeys by keeping things close at hand. iris x

Himself thinks your way of covering the oven door is brilliant...he's copied you!

You are so right there Lyd 12, If something get put into low cupboards it's there forever. Plates and casseroles need to be at hand, best china never sees the light of day now, same with nice wine glasses.My kitchen tops and a trolley hold perilous piles of these. A lottery win would make me able to get rid of overhead storage and just have a dresser, larder style cupboard and those lovely swing out shelves for under the work tops. e all have our way of coping though and, of course, a huge wish list of things to make lie easier, although having to manage with what we have means that effort will keep us a tad fitter. Some people would love to have our inconvenient things so blessings to be counted here.

You are so right Polly...we have kitchens and pots and pans and plates to eat from...far too many women have too little...

I sound so shallow, even to myself, it could be a bit of face-saving, would being honest though ,be better for the soul.? I actually do a bit of in depth cleaning. feel really virtuous and then rest on my Laurels.... for ages ..we probably all do it, oh well!!! And then I think, my soul will have to take it's chance on that one.

No point in giving up Vashti and don't go giving in either. Life can be such a struggle some days for Pete and then something lovely happens to brighten the day like our grandson hugging him and saying "I love you granddad" or our granddaughter just staring at him not sure what to think. Our cat decides when she is hungry and that can be any time from 4am till 7 generally. Pete has lived with sarcoidosis for 23 years now yet it was a shock to be told he had COPD 5 years ago. You just get used to one thing and something else comes along. Now he is messing around with his spinal cord stimulator trying to convince himself it will work, it must work, but maybe not just yet! He knows he is fortunate not to have to use oxygen but maybe one day he will.

I love reading your tales on here and just being part of this great site keeps me going and makes me realise there are others out there with chronic illnesses who are even worse off than Pete. We all cope in our own way though and communication is a wonderful thing.

Keep posting Vashti and wishing you well. xxxxxx

I was feeling totally hopeless yesterday...sometimes it smacks me right in the face and I feel like a selfish cow when that happens...but it might help others if I'm honest about the down days...

And why isn't Pete's spinal cord gadget working? The poor man waited long enough for it...

We don't know the answer to that one Vashti but hopefully something can be done very soon. It just means keep having to go to Southampton Hospital and then of course they have to make sure the Medtronic rep can also attend. I just hate seeing Pete in so much pain and feel as if we are back to square one. Hopefully not.

I admire your honesty as it does help to know that you have down days like everyone else. Hope you have a good weekend. xxxxxx

Memory is a strange thing. I find random thoughts popping up from my younger days, events for the past 15 years are a bit hazy, unless someone asks me directly.

One thing I have found, is the numbers get mixed up when I write them down, so they have to be checked carefully.

I also find a couple of busy days can poleaxe me for three days. Bone aching tiredness, constant nausea and earache with tinnitus. The chest varies from day to day according to the weather. Got a cough at the moment which is a nuisance, but that is the tail end of a cold. It wasn't serious, just a darn nuisance. Head colds are my pet hate.

No never give up. You sound quite creative in your illness. But never give up. You can say this in the mirror,"I'll never give up"

I too wake up at 4 am or earlier and I read, ... on self-confidence! This part in teh book said: look at yourself doing something successful, make it brighter, more colourful, bigger. When you reach that peak, press your fingers together to "anchor" the moment, so you can recreate this self-confidence later on by just pressing your same fingers together.

OK, I tried to impagine the "successful" me! ... I fel asleep! Ah well, I can always start again tomorrow dawn!

Yes, you do get used to having O2. Then you realise you can improve on movement, bit by bit; a bit more every week. Have faith in your capability.

In the meantime, you can read some more John Connelly! Cheer up, Mic

So far, the breathlessnes is not too bothersome. It is the ongoing effects of the Meniere's Disease, such as very loud tinnitus and nausea, sometimes worse, that drive me nuts.

I reckon it's only natural to have our off days, more so when you are tied to a heavy oxygen tank to drag around.

We are lucky to be alive today and not in the days before antibiotics were invented. So many of us would not be alive now if it were not for them. Or for surgery.

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