A happy post

[AirIsUnderrated]

I want to thank nurse Claire at Asthma UK, Emma and Twinkly, numerous other lovely people who have advised, helped and reassured me - and Fostair.

At the end of March I had a nasty virus which may or may not have been Covid. At that point I couldn’t even have a shower without struggling for breath. I’m still post-viral. I’ve had 7 episodes of exhaustion and low-grade fever since then, but I can breathe. This week I’ve just finished painting the lounge!

In the thanksgiving spirit of our friends across the pond, I am very thankful that I’ve come so far in the last 8 months, even though it often doesn’t feel like it.

If anyone has any happy stories of recovery, improvement or just gratitude, please share?

[twinkly29]

Aww thanks!

Glad you are better than you were! The fatigue/exhaustion I get frequently anyway (well not the same as yours but my own variation, probably linked to my asthma issues) and it's horrible. So that needs to go away for you! But yay for better breathing!

[AirIsUnderrated in reply to twinkly29]

Yes, to start with I put the exhaustion down to simply having to work hard to breathe. And it probably was, because it IS! But now my breathing is controlled and the exhaustion isn’t, so there’s more going on.

Anything to be thankful for for you? X

[twinkly29 in reply to AirIsUnderrated]

Thankful for my brilliant GP who is always fab, and my resp team (I wasn't a month ago lol) as I know they are on my side..... and thankful for having recently had an admission so therefore avoiding one on my birthday tomorrow 🤣

[AirIsUnderrated in reply to twinkly29]

Oh happy birthday for tomorrow! I hope you manage to celebrate somehow. Have you anything nice planned?

[twinkly29 in reply to AirIsUnderrated]

Will go and see the sea but do that most days anyway. Not much else .... oooh chocolate cake eating! But tbh that's as exciting as it would have got anyway.

And thank you!

[madonbrew in reply to twinkly29]

Happy Birthday Twinkly for tomorrow!!

[twinkly29 in reply to madonbrew]

Thank you!

[Some12U in reply to twinkly29]

Wishing you a Happy Birthday Twinkly 🎉 Enjoy that choccie cake! 🎂 🙋‍♀️

[AirIsUnderrated in reply to twinkly29]

Happy chocolate cake day! Xx

[madonbrew]

Aww bless you! Really hope you start feeling a lot better soon and that your exhaustion fades away! Glad you can breathe more easily!

🤗 Dee x

[AirIsUnderrated in reply to madonbrew]

Thank you! Any happy stories from your end? X

[madonbrew in reply to AirIsUnderrated]

It’s quite mixed...I haven’t ended up in hospital this year for any of my health probs! That’s a good thing! 🥳My surgery asthma nurse is on the ball 😊 even if hospital have deserted me somewhat 😡 I’m on stepped up meds ...feels like never ending inhalers 😂😂😂 and have had lots of steroids. Now see the physio for asthma 👍 My kidneys are staying stable..ish at 37% function 👍 Have started on insulin for diabetes which has had lots of challenges ( especially alongside the pred) but I have an awesome diabetes consultant who has helped me heaps! ❤️ Hoping my immunologist will look at my asthma treatment next time I see ( well talk to) him in early January!

I’m not working now because of Covid, but have stayed safe!!! And I live with my parents so it’s not too big a problem financially.

So yeah, some good news and some challenges!

[AirIsUnderrated in reply to madonbrew]

That’s a lot to contend with! I love how positive you still manage to be. 👍🏻

[madonbrew in reply to AirIsUnderrated]

Bless you! Thanks! I’m the type of person who just keeps going mainly! It’s all chronic so have had it all a long while now, but there are days when I’m like aaaaggghhhh!!!! The diabetes has thrown me the most as I used to be really anorexic. In more recent years starting to feel a bit more confident about food and now I have to try figure it all out again 😅 Thankfully, like I said, my diabetes consultant has been amazing and emails me regularly! I’ve been so blessed by her!

I’ve been doing lots of arty crafty stuff in my spare time which I’ve loved having time for! And getting better on my piano 🎹😊

All of us have our challenges but it’s good to stop and take a look at the good stuff 😊

You guys here and on another forum help heaps!!! 😘

[AirIsUnderrated in reply to madonbrew]

Ooh what crafts do you do? I make cards, crochet and recycle candles. (And collect unfinished projects from previous arts and crafts...) 😄

[madonbrew in reply to AirIsUnderrated]

Ooo, that sounds brilliant! I like the recycling candles idea!! Wish I could crochet 🧶...lol...I tried to learn but just ended up with a massive long row 😂😂😂

I also like making cards...in fact have been making my Christmas cards these past few days. I also have a sewing machine that I get out every now and then...just made some little gift bags...out of ‘The Snowman’ material ...actually I have a bit of a theme going because my cards are based on The Snowman too this year.

I’m also a Christian and have just made a nativity scene picture out of lots of bits and pieces I had in my craft box.

It’s something to do isn’t it during lockdown!! What’s your latest project?

[LilsBaker2023 in reply to madonbrew]

Hi madonbrew, I'm a Christian too. I've gotten very crafty this year. I've made salt dough ornaments for family and friends and this coming week I'll be making Christmas Fudge. The recipe is in the BBC Good Food Magazine for Christmas. I'm sure it's online too.

Sorry to jump onto your conversation like this AirlsUnderrated (I just love crafting and sharing the Gospel). I use the Fostair NextInhaler and your right about the sweetness. I sometimes refer to it as Sherbert 🤣 I find rinsing my mouth with fizzy water or apple juice helpful (like you would with mouthwash) and I do swallow the water or apple juice once or twice to ensure all of the dry powder has gone into my system. Maybe try it that way and see if it makes a difference?

🎄 LilsBaker2020 🎄

[madonbrew in reply to LilsBaker2023]

Hey LilsBaker, that is great to know!

Christmas fudge sounds really amazing and tasty!!! I might have to look it up...other than I’m diabetic so I shouldn’t really but it sounds so good!

Hope you’re doing ok?!

Dee x

[AirIsUnderrated in reply to madonbrew]

I'm also a Christian. 😀 Last week I was supposed to be playing Mary in the church's Star Trail production, but of course it was cancelled. I've been doing that every first week in Advent since 2012.

My current projects are a crocheted cardigan for myself, and a couple of lap blankets for the church. It gets cold in there, and I had an idea to scatter my creations around the pews for anyone who might need them during the service. Of course the churches have just closed again for Covid, but one day they might be in use.

I usually make candles throughout the year and sell them around now at church. Proceeds go to the charity Rett UK, as my little cousin has Rett syndrome and they have helped her enormously. But this year my lungs and energy levels haven't allowed me to make many, so I'll have to skip a year as I can't have a sale anyway. The parishioners bring me their candle ends and unwanted jars, and I just clean them up, melt down the wax and make more. I've never bought any wax. I also recycle the ends of the church candles for re-use in church. They're expensive, so that helps.

I saw some Snowman fabric last week, but I can't remember where it was now. A nativity scene! What fun! Are you on Facebook? There's a UK crafters selling site for preloved products (not finished craft projects) that is great for second-hand, good priced bits and bobs. It might have been there that I saw the Snowman stuff. x

[madonbrew in reply to AirIsUnderrated]

That is such a brilliant idea to make lap blankets for church! I bet they love you! Goodness, I haven’t been to church in ages...since the 1st lockdown. I go to a big church in Bournemouth but haven’t been brave enough to go back yet since shielding.

I’m not on any social media...this is my only little hub along with 2 other forums. That sounds good though...the U.K. crafters! Mind you, I have so much arty crafty stuff I would know where to put anymore for the time being! I’d love to have a little craft room one day!!

Hope you’ve had a good day!

Dee x

[madonbrew in reply to AirIsUnderrated]

Ps...I’m usually the donkey! 😂

[AirIsUnderrated in reply to madonbrew]

Haha! Which end of the donkey? 😘 I also haven't actually attended church since lockdown #1, but that's mainly because the rest of the congregation is over 70 and I work in a GP surgery. I couldn't live with myself if I brought Covid into my precious congregation.

I would LOVE my own craft room. Hubbie and I share our study which means he has his working-from-home with his 3 monitors on one desk and I have my crafting on the other. I sometimes make cards and sit in on his Teams calls where I hear only his part of the conversation, and occasionally things get heated. It's better than soaps! 😆

[madonbrew in reply to AirIsUnderrated]

😂😂😂...the whole donkey!!! I have an Eyeore onesie that I wear!

Bless you looking after your congregation! You sound so lovely and kind!

I know...how amazing would a craft room be!!! It would be on my wish list if I could ever afford to buy a house 🏡...lol...along with a walk-in wardrobe!

What does your husband do for work? At least it keeps you entertained! 😂

[madonbrew in reply to madonbrew]

Eeyore even!!!

[AirIsUnderrated in reply to madonbrew]

Lol not really kind, but an outlet for my crafts that doesn’t involve clogging my house up and helps others has to be a winner. 😘

Hubs is principal systems engineer for a multi-national oil and gas company. He works far too hard and long, with lots of people for whom English is a second, third or fourth language, so he needs all the patience he possesses. It’s technical stuff that is difficult anyway before you add the language challenges in.

A walk in wardrobe - fantasy indeed! Actually the craft room would still be my choice if I had to decide between one and the other. I’m a bad example of a woman! 😄

[EmmaF91 Community Ambassador]

Nawww thanks 😊

I’m glad you’re doing better!

I’m thankful for better control by simple measures! Switched my spiriva from AM to PM (on advice from a nurse I’ve never actually met 😅) and night/morning issues lessened. Switching heating on for a few hours before I get up and in the evening lessened them even more! And switching from steroid tablets to steroid injections has meant almost 2 months now without major problems 😊

[AirIsUnderrated in reply to EmmaF91]

That’s really amazing. All this small stuff adds up, and it isn’t taught to, or even often valued by consultants. It’s the kind of thing that Resp nurses ought to be able to suggest if they had the time. It gives a measure of control back to the patient, and the importance of control can’t be understated. 👍🏻👍🏻👍🏻

[Some12U]

Glad to hear you are improving, AirIsUnderrated. Sorry you’ve had a rotten time since March, with several repeats of symptoms. I had Covid diagnosed in the Accident and Emergency Dept in September. I too am grateful for the support from Asthma U.K and kind folk on here.

Enormous fatigue and shortness of breath were my worst symptoms as well, and the fatigue was bone grindingly awful. I was actually ill for about five weeks then slowly picked up. I haven’t returned properly to how I was before however, my asthma has worsened a little so I need additional medication. I built up my energy gradually with longer walks every day, and fatigue has gone. It sounds like maybe you had/ have Long Covid which is a type of chronic fatigue (six months or more for a diagnosis). I’d suggest you speak to your consultant perhaps, if not see them ? In Scotland anyway, anything to do with Covid has moved away from G.P’s surgeries to the hospitals. I hope the paint is low or no V.O.C. and don’t overdo it! Good luck 😊 🙏 I’m a Buddhist, and I believe prayer is important too.

[AirIsUnderrated in reply to Some12U]

Poor you! That sounds really rough. I’m glad you’re out the other side.

I have no consultant. I had no chest issues until this virus in March. I haven’t got an asthma diagnosis except for the coding on the system for needing Fostair, but I can’t come off it without symptoms returning.

Yes it may have been Covid but it was before any testing. I had a negative antibody test 12 weeks later. If it isn’t long Covid then it’s post-viral syndrome which is pretty much the same thing. I’ve learned that working through makes the fatigue worse not better.

[Some12U in reply to AirIsUnderrated]

It’s a shame you’re not in the “system” as such and makes it harder perhaps to proceed, as you haven’t had an asthma diagnosis. You can presumably speak to your G.P though? I guess they may think your breathing will improve eventually and you can stop the Fostair inhaler. It’s frustrating not to have a firm diagnosis of Covid, with the testing shamefully not available to the public at the beginning. Oh yes, working through the fatigue makes it worse! I ate only microwave ready meals to start with, and then had a stool in the kitchen to cook and sit. My walking was increased only by small increments each day, e,g, firstly around the garden, then half way round the block etc. It sounds like you moved beyond that stage anyway. Hope this helps 🙏

[AirIsUnderrated in reply to Some12U]

Yes I’ve had multiple calls with different GPs. They seem to follow a pattern now. I say it’s not getting any better, they are all optimistic and suggest blood tests, I point out that I had those x months ago and nothing was found, they say let’s do them again anyway. I do them. Then I call for the results and they say everything is clear, have I tried x, y & z and I say yes. It always ends the same; they run out of time and say it must be post-viral. 🤷‍♀️

But my breathing is controlled, and I’m getting better in between the bouts of fatigue, headache and fever. I felt terrible 2 weekends ago and this week I’ve felt really good. 👍🏻

Did you get any useful advice/help/support?

[Some12U in reply to AirIsUnderrated]

It really does sound as if you're making a recovery, even if it seems too slow. A good week is a good sign I’d say, and well between bouts and breathing settled. With post viral fatigue it can be two steps forward and one back, I’ve had PV F before in my life. PACING is what I was told that time ( Not easy but the path to recovery.. not over drawing the energy balance in your bank!) This time the help has just been on the asthma side. Hard for medics to get to grips when blood tests keep coming back normal, it’s frustrating. Many, many people are suffering Long Covid / Chronic Fatigue now though, so they have to recognise it. There’s was a good section in “Patient Info” I found through my surgery’s website. I’ll see if I can find you a link.

[Some12U]

Need to sign up to patient access.com, or down load the app Patient Access. Select Patient Info from a list of services at the bottom of the page, then type in Covid. Masses of articles including Long Covid, thorough info including what Dr’s can do to help, I noticed. Though that’s probably the x.y.z!

[AirIsUnderrated in reply to Some12U]

Thanks! I've browsed some of that, but there is always more being added. I'll have another look. 🥰

[Some12U]

Glad it was useful! Take care, 🙋‍♀️

[Claire_ALUK Partner ALUK Asthma Nurse]

Hi AirlsUnderrated, thank you for the shout out(s) and so glad you are doing so much better. Always great to hear some good news in these strange times 😊👍

[AirIsUnderrated in reply to Claire_ALUK]

I know, right? So much fear, aggression and confrontation out there at the moment. It isn’t surprising, but we do need some cheer to counteract it. Thank you again! X