Struggling this morning...

[meganoscar123]

Hi guys, I'm still new to this site but know it's ok to share with you my week which has not been great, just as I thought I might get down to only 10mg Prednisolone p.d following a bad asthma attack 3 weeks ago (is resus) I have now caught a horrible cough and cold with a sinus infection so back up to a high dose steroid and onto Doxycycline antibiotic again. This winter has been really hard to get off oral steroids (I finally got off them last Summer after 2 and a half years only for Autumn to kick in with all the spores!) and I'm feeling frustrated, disappointed and really down. My husband is miserable and grumpy with me. I feel a failure.

[sassy59]

You are not a failure megan and should not feel like one. Pete has never been able to come off pred completely but he is doing ok.

Living with illness his hard but you can get through this with the love an support of family, friends and the wonderful people on HU.

Feel better soon. Xxx

[Tee1008]

Oh, megan! I do feel for you. It's bad enough not being too well without "Miserable" and "Grumpy" making you feel more upset. How can you possibly be a failure?? It's hardly your fault people spread their germs about.

I expect your husband is worried about you and that's how it comes out.

I hope you start to feel a bit better soon

Tee x

[meganoscar123 in reply to Tee1008]

Hi Tee thank you so much I do try to see it from my husbands point, the prednisolone changes my mood although I try hard to stay 'bright and cheerful' as much as possible but the reality is there are no other meds they can throw at me I'm on max of everything and a simple cold really knocks me for six! I think I know that the future is 'Prednisolone shaped' which is scary as I already have weakened bones in my hip and spine at 48. Perhaps some of you have a mantra or phrase you tell yourselves at times like this, I would appreciate adding to my repertoire of 'tomorrow is a new day'!!

[Tee1008 in reply to meganoscar123]

I'm not an expert on long-term use of prednisolone (or the devil's smarties as someone on here calls them) I have only had to suffer them in short courses, and don't get on well with them at all...but if they help you, that's the most important thing.

As for a mantra...see Toci's post of a couple of days ago "Words of Wisdom", lots of sensible stuff from a 90yr old!!

Taking another knock healthwise is depressing, Megan, but you have been better and hopefully will be again.

All the best

Tee x

[meganoscar123 in reply to Tee1008]

Thank you Tee, the 'devil's smarties' brought my first laugh today all be it coughing and spluttering! Yes I will be well again and the Spring is round the corner which will hopefully mean better breathing. I hope you have a lovely weekend, thank you for your kind support. x

[velvet55]

Hello Megan

First of all you are NOT a failure.

You have had lots of bad luck picking up infections, and if you need the Meds you must take them.

Secondly tell Mr Grumpy / Miserable you need some support, from him.

Megan here is a Velvet Tip....😂....Don't get mad with him, Get Even....Starch his Underpants !!! 😂

Velvet xx

[meganoscar123 in reply to velvet55]

Hi Velvet you have made me smile, thank you, I have worked hard to bring my mood up from this morning, I made a quick bowl of homemade carrot soup at lunchtime (something I know I do well and tastes good) and started researching Bronchial Thermoplasty at the Brompton which may help severe asthma to ask about at my next consultants appointment later this month so I feel I've done something proactive at least. I try to always see how draining it must be for a husband to have had a healthy wife for 24 years and suddenly have to cope with me not being always strong and able to do everything...can't be easy for carers out there.

[velvet55 in reply to meganoscar123]

Hi Megan

Glad it made you smile 😂

It is hard for carers, but , in sickness and in health, and l am sure you would help him if the roles were reversed.

My husband has recently under gone a hip replacement, l went out of my way to nurse him back to health...l even got him a special chair for by the sink, so he could sit down while he was washing up ! 😂😂

Keep smiling

Velvet xx

[meganoscar123 in reply to velvet55]

Hi Velvet your husband is a lucky guy to have you there for him. My husband said he is taking me out for lunch tomorrow if I am feeling up to getting out so I don't have to cook. It is the little things like that which help, and he has started to come with me now to my Brompton appointments as I admitted I was afraid of having an attack up in London on my own. I have sometimes got to overcome my own stubborn streak that I don't need help. Still adjusting I guess to life with a chronic illness for last 4 years. It's a learning curve!

[velvet55 in reply to meganoscar123]

Hi Megan

That's nice of him...so he's not so bad after all.

I have always been able to cope until my Asthma and COPD have got worse, its mainly my energy levels, l get tired.

I share my feelings with Mr Velvet, and l let him know if l am struggling.... He is not a mind reader, neither is your husband,

Have a lovely time tomorrow.

Xx

[bayleyray-uk]

Hi Megan

Totally agree with Velvet you are not a failure, if you need the meds take them. Partners can take some time to get their heads around the changes they will have to make. My hubby still gets it wrong sometimes like suddenly deciding we should trudge around a day store just after we have done a weeks shopping and I've put it away. So I came up with the one big thing a day. So shopping, shop bought sandwich = homemade dinner or shopping, did store = takeaway and as he prefers home made meals as the meerkats say simples. All I can suggest take him with you to every consultation, docs appointment, don't hold anything back from him.

Sue

[meganoscar123 in reply to bayleyray-uk]

Hi Sue, I like your strategies where as I will be at work all day, then come home and cook from scratch to then feel totally wiped out later. The last few months of constant viruses on top of asthma have meant I have had to give in and admit I am not superwoman who can do everything. My husband does the shopping now I can't lug the bags and the housework as dusting is a nightmare for me and vacuuming whacks me out so really I guess we are a pretty good team that has it's off days like any other. Having him come to my appointments has I think given him the perspective to see my struggles from a new perspective when the Dr says there is nothing else meds wise to offer.

[Hidden in reply to meganoscar123]

Hi well if you are both working all day it's about time he did his share isn't it? He can do the next 24 years x

[meganoscar123 in reply to Hidden]

Morning coughalot2, hubby has had to up his game in terms of helping but I have naturally been quite stubborn about 'giving in' so we both have had to adjust. My husband has a hard physical job so he's tired at end of the day but if I cook he clears up and he's turned out to be an ace bargain hunter while shopping so I look at it that my illness has given him a new skill to his bow! Have a lovely Sunday x

[bayleyray-uk]

Hi Megan,

I have had Chronic Asthma and hayfever for years and like yourself although I had been diagnosed with Chronic Asthma tried to be superwoman and became very poorly in the process. I was lucky to be able to take early retirement due to a reshuffle at work and did start to slow down a bit. That's when my Bronchetsis was diagnosed (had probably had it for years) and a little later COPD joined in just to annoy me. Like yourself the Autumn spore explosion has started become a bigger problem for me over the past three years

As I said 1 big thing a day and a couple of little things. To do lists have started to become my favourite pass time. I never get disheartened if I don't complete my days list but feel happy that I've done some of them.

I have been on maintenance antibiotics for just over a year now and that has cut down the flare ups and am now on a trial run of maintenance preds. since January it has helped keep my lungs from being so inflamed but I am starting to have side effects now which are not nice, it was a big decision to make and I know it is not good for my bones and immune system.

When written down it looks pretty yucky but I'm able to look after the grandkids, visit my Dad, do a bit of light dusting (and I do mean light), moan at hubby and ponder the fact I might have to think about going on a diet because the preds. are playing havoc with my appetite.

All of us hear on the site help each other to get over the rough patches and share in the good times.

Cheers

Sue

[meganoscar123 in reply to bayleyray-uk]

Hi Sue yes I have had every single side effect with Pred except glaucoma (I get 2 free NHS sight tests per year due to steroids) and heart attack, although I have high B.P controlled with yet more meds, which is why I like the term on this site for Pred; the 'devils smarties'. The worst for me is the mood changes, insomnia and the desire to eat the fridge at 4am!! I too use to do lists but I think that was more the menopause kicking in...so frustrating walking in a shop and not knowing what the heck I went in for ha ha! I am exploring taking my private pensions early and if I might qualify on ill health grounds but at 48 there will be big financial penalties so I hope to keep working if I can. You are right it is about what I can do each day, not what I can't. Everyone has helped me so much today, a big thank you x

[bayleyray-uk in reply to meganoscar123]

Megan,

I had to laugh about you eating the fridge, I've just eaten a omelette with bacon and cheese in it and realised it's was 2 in the morning and eggs don't even agree with me. I'm off to bed and hope I can get to sleep before 4 this morning.

Night, night

Sue

[velvet55 in reply to bayleyray-uk]

Hi Sue

A bacon and cheese Omelette 💝💝 Yumeeee

It's 5.45am and l am about to make one...it's your fault !! 😂

Xx

[meganoscar123 in reply to velvet55]

Morning Velvet, I just replied to Sue that the omelette sounded so good...it is true if anyone mentions something good to eat when I am on Pred my brain goes into overdrive thinking about eating it...we must make a resolution only to talk to each other about fruit and veg...ha ha like that's gonna happen!! I find even when I've had breakfast I've fast forwarded to lunch and dinner planning what I can scoff! This time I have put on about 5lbs in weight but 2 years ago went from 8st 6 - 11 stone which as I am munchkin height (lost 3/4 inch in height due to bone shrinkage from Pred) was a bit heavy. I try Mon-Fri to keep my scoffing frenzy under control. Hope you have nice things to look forward to today x

[meganoscar123 in reply to bayleyray-uk]

Hi Sue, Oh my a 2am omelette sounds sooo good, that made me dribble!! I hope you did get some sleep last night. I am given sleeping tablets whenever I take high doses of Pred as I just feel like I've plugged myself in the mains and get no sleep at all without them which makes my moods even more dire. This morning think the antibiotics are kicking in I can breathe through my nose, chest feels a bit iffy but only to be expected, but hey the sun is shining, not so windy today so if I venture out for lunch I may not be poleaxed with my breathing. Have a lovely sunday x

[Sherry44]

Megan I am so sorry for what you are going through. Sometimes a bad cold can knock even a healthy person sideways. Look after yourself and say this mantra - Every day in every way I am getting better and better.

Love and best wishes.

[meganoscar123 in reply to Sherry44]

Hi Sherry44, Thank you for your mantra, that is one that I will tell myself each morning when I wake up. I worked 9-3pm today, have popped a healthy homemade dinner in the oven and will rest now as I feel a bit pooped! My chest feels a little easier which is positive! I hope you have had a good day x

[Sherry44]

Thanks Megan. I am so glad you are feeling so much better and more positive. It's not easy I know. You certainly worked hard today and I am sure you will feel whacked.

Like everyone else I have good days and bad days. Today has not been to bad but the

damp got into my chest today when I went out. Hope it dries up tomorrow.

Love and best wishes

[meganoscar123 in reply to Sherry44]

Hi Sherry sorry I was not online last night as working until 9.00pm and got home bushed! I hope today was better for you as at least it was drier, damp/wet/cold weather is terrible for those of us with knackered lungs!! I have finished my antibiotics and feel a bit more like me again, still on 20mg Prednisolone but know that will reduce as I recover, just keep having to resist eating the door off the fridge! x

[Sherry44]

Dear Megan - Please don't eat the door off the fridge. It won't do either you or the fridge any good!!! It will give you the most horrendous heartburn! I often wonder if heartburn is all part and parcel of the knackered lung business. I seem to get it quite often for no apparent reason.

Joking apart, I am really glad you are feeling so much better and hope this will continue.

Love xxx

[meganoscar123 in reply to Sherry44]

Hi Sherry, your right all that plastic from the fridge door plays havoc with the intestinal tract ha ha!! I take Lansoprazole which manages heartburn from steroids and also controls acid reflux which exacerbates asthma. Thank you for your love and best wishes it means a lot, have a good day tomorrow, never forget we may have knackered lungs but we've still got our sense of humour! xx

[Sherry44]

Hi Megan. Thanks for explaining about heartburn from steroids. I am on symbicort which I have take twice a day. I also take Metrapac for heartburn. I had a feeling all this was connected with the lung problem but wasn't quite sure so at times the

imagination ran riot thinking of all things it could be.

As you say, we have our sense of humour which keeps us going. Couldn't get through life without it. So far today has been OK.

Love xxx

[meganoscar123 in reply to Sherry44]

Afternoon Sherry, hey good to hear your Thursday has been ok, I've just got home so can chill out a bit tonight. Like you I am on Symbicort (highest dose Symbicort 400) but up to 8 times a day to try to control my symptoms. The Symbicort does not normally give me heartburn but boy the Prednisolone does! Today was not too bad, cold frosty start which shocked my lungs but I had a bad coughing fit which I think is all the mucus from chest infection coming up ...Yuk!

My consultant at The Brompton emailed me back to say that we can discuss Bronchial Thermoplasty when I see him on 24th but he said there are some new drugs in the pipeline he wants to throw at me...but how long is the pipeline? How many years away might new treatments be? I read they are trying to get Xolair as an inhaled treatment rather than the expensive injections in hospital to control allergy triggered asthma. x

[Sherry44]

Hi Megan. I take it that as you are attending the Brompton you are living in the South East. They seem to be producing so many new respitory drugs now. I think it must be finding the right one for each person. I live in the South West (Somerset - beautiful but oh so damp!) However, I am not feeling too bad except for coughing - non-stop sometimes. I suck a strepsil and then take a sip of water which seems to help.

Hope your day goes well. Look after yourself.

Love xxx

[meganoscar123 in reply to Sherry44]

Morning Sherry, yes I live in rural West Sussex in view of the South Downs, lucky you living in Somerset, the beautiful Levels and Exmoor...stunning! We get out to the Middle East whenever possible because it is the only place I feel truly well with my breathing, hot dry air with little or no spores. My consultant recommended I live there ...need to win the lottery first. I think the damp air fuels our coughs with all the fungi we inhale here, or as I call them my 'fun-guys'!! I have been working from home today catching up on emails and calls from bed, (lazy I know!) feel warmer there but going to get myself going in a minute up and out to our village. My husband has stepped up a gear and been very supportive and much kinder this week which has helped my mood lift, and I feel proactive in asking my consultant at The Brompton week after next about Bronchial Thermoplasty which he has not ruled out but also his comment about possibility of new drugs he may give me in pipeline. I find sucking on a fisherman's friend ( ha ha) helps with my coughs and strepsil's are good too. Hope you get to do something nice for you this weekend Sherry x

[Elizabeth0228]

You're not a failure. You're feeling crappy and can't seem to shake it. Also, the prednisone reeks havoc with your emotions. Hang in there. Make sure to get rest and fluids while going through this. You'll get better.

[meganoscar123 in reply to Elizabeth0228]

Morning Elizabeth, thank you for your reply you are so right about Pred reeking havoc with emotions that is one of the worst side effects feeling angry about everything and everyone without knowing why??...awful! This round of steroids I think I have controlled those emotions more and the doxycycline has made me feel a lot better yesterday and today. My husband has caught the cold and cough now and is really unwell....he understands now why it knocked me for six and he's got an immune system like an ox!

I decided as I'm off today to make my command centre from bed so I have done a load of emails and phone calls and am only just thinking about getting up to pop to the village...lazy I know but I've worked all week and need to be kinder to myself when not feeling great. You all on this site definitely make life better with your support. I hope you have a lovely weekend Elizabeth x

[Elizabeth0228]

Good idea getting bed rest. Sorry to hear hubby caught the bug. Yes, prednisone is quite aweful. I feel like too too much coffee constantly being poured down my throat with no relief when on it. Also found out I need open heart surgery in a year. Don't know what affect asthma and bronchial copd will have on it. Stay in bed for a few days. You're body needs it. Have a good weekend also. Don't grel guilty for taking care of yourself.

[Elizabeth0228]

That last sentence was: Don't feel guilty for taking care of yourself. Kindle Fire is a tap key system which allows for too many word errors. Sorry about that.

[Elizabeth0228]

Just thought of something. I have a face mask that covers my nose and mouth from the cold. These are usually sold for skiers and can be purchased in a sporting store. It helps my lungs to stay warm when breathing outside in the winter cold.

[meganoscar123 in reply to Elizabeth0228]

Oh thanks Elizabeth I will see if I can get one as I do wrap my scarf over my nose and mouth when it is bitterly cold but always falls down! That mask sounds ideal. I am sorry to hear about your need for open heart surgery, guess you may have to up the steroids a bit before surgery maybe? I developed heart problems while taking anti-fungal drug Itraconazole 2 years ago to clear fungus invasion of my sinuses and I have a leaky mitral heart valve that may need repair in the future. That is why my consultants jump on my asthma and hit it hard with Pred etc as attacks are so bad for the heart, your doctors will know how best to manage your asthma and copd with your surgery and keep a close eye on you. x

[Elizabeth0228 in reply to meganoscar123]

When you get the mask, since it covers the nose and mouth when I go into a store I pull the mask down to show.my face.so that people don't think I'm there to rob them. I didn't know I was going to get that kind of reaction but wearing it outside doesn't seem to matter to anyone. Just thought I'd pass that along. It really works no matter how cold it gets and you can wash it too.

[meganoscar123 in reply to Elizabeth0228]

Oh Elizabeth your post did make me chuckle! I had visions of all the staff behind the counter ducking when you come in a shop with your ski mask on and then calling the rozzers!!

[Elizabeth0228 in reply to meganoscar123]

I know. It was amusing once I figured out the shocked faces.

[Six1]

@meganoscar123 U are not a failure I'm on20 mg Prednisone for my copd emphysema an sarcadois trying 2 taper them down plus I'm on,Oxygen fairly new ,,2 site really nice people Keep YO HEAD UP!