MY JOURNEY WITH COPD - part 3 - British Lung Foun...

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MY JOURNEY WITH COPD - part 3

You can blame the snow on me! Sometimes I am such an idiot I wonder how I ever got to 74 & 9 months.

Because we cannot go abroad any more to escape the winter, I booked a long weekend in a country house hotel starting tomorrow when the weather is getting worse and there is a yellow warning even down here in the south west.

Consequently I didn’t sleep last night and I am getting more anxious by the minute. I do this on a regular basis, arrange things to force myself out of my safe bubble and then worry myself stupid.

No matter how many times I tell myself

•It will be fine.

•It always is.

•Hubby’s not worried.

•What’s the worst can happen.

•Lose the holiday, so what.

•Stop thinking JJ.

•Relax.

•You are quite well at the moment.

•There’s a pool.

•Good food.

•A glass or 4 of a nice Shiraz.

•Entertainment each evening including a Ball & Boe tribute duo. Just love their music.

•What’s not to like.

I go through this mental torture every time.

Now, this has nothing to do with my COPD but all about my depression which is MUCH harder to live with.

HOW DO YOU COPE WITH ANYTHING OUT OF THE NORMAL DAILY ROUTINE?

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Hi Jeanrita, can I ask where you are going? It sounds lovely and very relaxing. I like the sound of the entertainment.

Pete and I often go to Warner hotels as Pete really enjoys them. I do too of course but I’m the worrier.

You will get away and enjoy yourselves. Let us know how it goes. Have fun. Xxxxxxxx

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It’s our first trip to a Warners - at Cricket St Thomas. Only 75 minutes away so hopefully we will get there. Nice to know you like it.

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I did wonder and yes it’s a beautiful place. Have fun! Xxxx

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Put your snow chains on and have a fabulous time!

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Hard to get round my fat legs!!😂

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😂😂😂

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Sorry to hear Jeanrita is it possible your sleeping habits are not up to snuff . Have you ever considered sleep study ? Since I have CPAP my nights have been much more pleasant going from 18 apnea’s per hour a night to less than 1 for the entire night. Not suggesting you do but maybe an option

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Interesting. My COPD consultant has set me up for the sleep clinic and I have to get my sats machine on Valentine’s Day! Can you tell me what to expect. I will try anything as I feel I am exhausted all the time. It is a fairly new phenomenon as I used to be a good sleeper on the whole but now

I wake up every two hours or so and have to go to the loo.

All advice gratefully received.

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Hi Jeanrita, I have just done the sleep study and are going for my results tomorrow so I may go on an air machine I will keep you informed, I’m also doing a 3 year copd study with the hospital too but they also give you a complete check.

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It’s painless just an adjustment to the equipment. At first it was awkward but I don’t even think of it anymore and yes I feel much better throughout the day. The importance of a good night’s sleep !

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Hi Jeanrita, I got my results last night from the sleep study, I have severe sleep apnea, I stop breathing 35 times in an hour, one side effect is the urination problems and really bad tireness.

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Sorry for delay been offline as away.

That’s scary isn’t it but now you can get it sorted and wake up feeling refreshed instead of more tired each day.

Best of luck.

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Hi Jeanrita, that correct but these things don’t come cheap, I won’t be going on the sleep study till April as I have to save for that, and as far as the machine goes I was thinking I’m going to have to give it a miss for a while as I’m looking at $2,000 for the machine as you have to buy it from the hospital here

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I did not realise you were in America and had to pay. Our NHS is brilliant and it never occurred to me that I might have to pay. I currently have a nebuliser and a portable oxygen machine both supplied for free. It does make me wonder though how much longer this free service can continue. Yes, we pay for it direct from our wages but it is no longer enough.

I hope you manage to get some help.

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Thank you let us know how your going, I see in your picture there is two guys are there two of you’s?

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Take baby steps! 😊

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Enjoy the break!! X

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Hi Jeanrita that list of things you tell yourself sounds just like me. I don’t have depression but I do have severe COPD. My problem is anxiety caused by a fear of not being able to breath. Although I have a portable concentrator to use when I go out as I’m sure you all know Oxygen doesn’t help with breathlessness. I have had so many times when venturing out of gasping for breath I now get really anxious/frightened of not being able to breath when going out. It is so frustrating as I have always been a very independent person. You’re really not alone with your feelings. Barbs x

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I so get that.

Today we went to a hotel in the country and it was a big rambling affair with different buildings. I was advised to go to the restaurant to sort out our dining arrangements and then to the entertainment area to pick a table and then to find our room. I did say I couldn’t walk far but what is far to a healthy 18 year old!

I was struggling for breath very quickly, possibly because it was so cold today but I have never felt so totally knackered and I had no idea how far it was! I stopped and took my ventolin, walked a few paces then had to stop all the while other people staring at me thinking I was about to collapse.

Rom 225 eventually came into view And I was so relieved.

Thankfully my scooter was in the boot but I rarely use it indoors, never been necessary before but it proved a life safer. Hubby went to the car park and drove it back and now I can enjoy the rest of our stay.

I will have words with the management tomorrow explaining that any distance can be too far for someone with COPD.

We will miss tonight’s entertainment as I need my bed and a rest but hopefully back on track tomorrow.

Barbs, getting stressed makes your breathing worse as I’m sure you know but you don’t want to become a prisoner. Keep taking little steps and Good luck.

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I agree I had that same experience in a hotel a few years ago and my daughter had to go and fetch my scooter. My problem is much closer to home at the moment. For me it is a long way from my front door to my car which is parked on the road. I contacted Adult Social Care 5 months ago for some help - I’m still waiting even after complaining. I want to try to get a home improvement grant to put a hard standing for my car so it would be much closer. I need an O.T. Assessment as they have to fill in the application form. It all just wears you out because people don’t understand. I will get back onto them I just have to find the energy. Barbs x

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I hope you get what you need but it seems to me that is getting harder and harder to get help especially if it’s health related. Unless of course you are an addict or just out of prison etc. It makes me so cross.

Good luck my dear,

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