Wonderful wheezees

[Stitcher48]

Thankyou my fellow wheezy friends for the support ,what a difference a day can make I feel so much lighter in myself today,I have been feeling quite low this year with the worsening of my mobility and forgive me if I don't use the right words as I've lost a lot of them,when my blood gases were so bad i was very confused and my language got terrible ,it was as though my mental dictionary had pages ripped out and sometimes I'm at a loss for the right word,I'm Irish but always have loved the English language ,I do like to talk a lot, but I started to think I was getting dementia as some days I couldn't even think of the word for a chair. I have never spoken Irish, English is the language we were brought up with and added Derryisms as you might find if you watch Derry Girls on channel 4,I've had brain damage in the past about 4 or 5 years ago and I think I'm back on the waiting list for neurologist,but it is so frustrating when you can picture the thing in your mind but can't come up with the word. My memory isn't as good now either but I digress.... I just wanted to say thankyou for the support and the explanation as to what was going on but I still can't understand why my niv machine didn't alarm or record me not taking a breath ,it records leaks in the mask which is what nurse kept saying was happening but I knew that wasn't so...there I go again attention span of a gold fish..thankyou,thankyou,you have really all lifted my spirits.

[sassy59]

Bless you Stitcher, we’re a friendly, supportive lot on here. Don’t worry about how you communicate just so long as you do. It’s good to hear from you.

Take care and glad you’re feeling better. Xxxxx

[Caspiana]

Fellow wheezes. I love that. xx 🌸🌼🌷

[Stitcher48 in reply to Caspiana]

You'll love the name of the choir lovely respiratory nurse set up and I'm hoping to join once I get back on my feet.."THE WHEEZY WARBLERS",isn't that just wonderful ,to come up with a name that makes you feel included even if your singing isn't great,but I hear it's great exercise for the lungs and great craic ,I saw them perform a few years ago at a BLF meeting,all ages and abilities if people had to sit they could and I even saw a few fellow oxygen users,I'm so hoping I'll feel well enough this year to join. I've just got so many different complications at the minute and I got all dressed up to go out today but was so exhausted just getting ready I didn't make it to town but I'll try again tomorrow,I'm so annoyed I missed out on the sales this year just couldn't even navigate the Internet though I am waiting on a lovely looking pair of boots just hoping they will fit as returns are a real faff,should have read returns policy first as it's changed since I last ordered a treat like this,difficult to find lovely shoes with comfortabuy low heels,they mostly look like my grannies,so hopeful these aren't too high and fit,just 2 inch heel but that is the highest I can go before back pain hits with a vengeance. I love shoes and handbags...they rarely let you down..clothes a different story as I'm only 5'2 and let's be honest overweight,it's always disappointing trying something on and it's gorgeous on the model but looks ridiculous on me,oh for the days when I was a size 6,such a long time ago now but until I went on steroids I'd never have believed I could get overweight but 30 years ago I was on a very high dose of 40 my of prednisilone a year at a time,I believe they did so much damage and I was given no information about them and the false appetite they give so basically as long as it wasn't moving I ate it and ballooned from a size 6 to a 26,hard to come to terms with but I would lose the weight but never all of it and then be back on steroids again,this was for ulcerative colitis,in my 20'sleep my respiratory problems were misdiagnosed as panic attacks? been a list of misdiagnosis throughout, my age was given as a reason GP said I'd been so young to have developed such chronic lung disease ,just bad luck really,I'm not even 100% sure I have sarcoidosis as I couldn't be sedated for biopsy but they believe that's what's going on but I'll never be sure as I do have other things going on not typical of sarcoidosis. Must get back to sleep,I feel like I've found a lot of new friends and it's so lovely. To be able to have people who understand what it's like to feel exhausted just getting dressed,that would be amazing.

Well night night fellow wheezees make sure those masks are on well tonight lol..I look like hannibal lector in mine lol.😭😂😂😂❤❤❤

[Caspiana in reply to Stitcher48]

What a wonderful, wonderful name for a choir!! I hope you can join too! xx 🎼🎶🎵🎤🎹

[Ergendl]

I'm with you on the thinking in pictures. It's annoying not to be able to recall the word when you're speaking - probably why I prefer to use the written word.