Do any of you get disheartened by your illness?The coughing. Wheezing. Breathlessness.
The medication. The side effects.
The battle to see a GP.
The ease with which you pick up seasonal illnesses. Having to say "no" when you are unwell. Having to stay indoors when the weather is bad. Keeping your distance from people because you don't want people to know how bad your illness is.
Saying farewell to the things you used to be able to do.
Am I disheartened? You bet I am.
Hi Madbiker 1
The simple answer is Yes!!!☹️ Really really frustrated and angry at myself and this illness and I am really sorry that you are feeling the same. I guess it doesn’t help you much but you are not alone with these feelings🥺
I especially resent my medication and their side effects which just seem to have made a bad situation worse. But I have to accept they keep me alive..🤷♂️
Do you have anyone you can talk to? Have you tried the forum helpline? I think the nurses are great and I’m sure would have some better ideas than me to help!
Sending virtual hugs.. take care 🌷
sorry to hear you are disheartened I also feel this way!!
For me it’s the cycle of chest infections recovery pause repeat
Gotta to talk to someone like Pipsqueak says
Perhaps Asthma UK helpline?
Be strong bro
Incredibly disheartening. I’m 38 & newly diagnosed with chronic bronchitis and my life has changed dramatically. The constant fatigue, wheezing, mucus, acquiring every respiratory illness going. I disgree when people describe copd as a death sentence, more akin to a life sentence - locked up in a maximum penitentiary unable to do most of the things your did previously. I won’t blindly tell you to stay positive as that would be to insult you. As Jimmy Carr said all we can do is ‘try our best to accept the apology that life will never give us’.
I remember sitting in the doctors surgery, again, felling so poorly. Another course of Pred awaited me. I was not happy. As I gazed out of the big bay window, a young mum, pushing her child in a stroller, was running down the street with a cigarette hanging from her mouth. At that moment I felt life was extremely unfair. I had never smoked yet had always struggled with activities. This wasn't my fault and I followed the rules, but that young mum, a smoker, could run with such ease that I had never enjoyed. I had never felt so resentful.
As a 4 year old I used to hide my Pred so I didn't have to take the evil tasting tablets. Medication was kept in a high kitchen cupboard, but one day I took a kitchen chair, climbed up and just about managed to open the door and get hold of the offending pills. With the imagination of a 4 yo, I hid them under the dining room sideboard. There was an interrogation but my body language let me down, I was a terrible blusher and the fact I looked at the sideboard was a bit of a give away.
My sister still talks about the family guilt surrounding the methods used to force the Pred pills upon me. I was 7 before I was prescribed Ventolin.
And yet I do feel guilty for giving my parents so many sleepless nights and frights whenever I turned blue. I don't know how they coped. I must have been exhausting.
However, I'll take this respiratory disease over my siblings rheumatoid arthritis, cancer and heart disease. Asthma has nearly had me several times which may explain why one of my favourite songs is Elton John's I'm Still Standing. Not singing it today though; in bed with another blooming chest infection.
Merry Christmas!
I do feel fed up at times about the limitations that my asthma/COPD means I have with my life these days. The steroids have thinned my skin so that I bruise easily and my skin tears and bleeds freely at the least damage. I mind that, but of course it’s just a side effect of the meds that help my breathing.
I am sad that I cant do the sports I used to, and I can’t keep up with my friends and family with walking, so I can’t join in with walking activities or have to do it at my own pace, so I don’t get invited to join people on active outings or holidays, and it is becoming isolating and lonely at times.
I did used to smoke, so I have to accept that I have brought this on myself. I know people who also smoked who don’t have this, it’s just luck of the draw I guess. So I just focus on what I can do, keep myself fit at my own pace, and enjoy other activities that are less physically demanding. But yes, I do mind, and sometimes get very p***ed off. I’m a glass half full person though, so I have to have a strict word with myself and get back out there again 🤷♀️🥂💃
As you can see, we all feel the same way from time to time, but there are good days. Most of us are supported by good people, and I hope you are as well. It is not your fault - or anyone else's - that you're ill, it just is. Eventually, you will get better, the wretched freezing cold will go and you'll feel that life isn't so bad after all. Do you do any sort of craft/art things? They do help to take your mind off your situation when you can't be a mad biker, especially if you can sell them for charity. If it taught me nothing else, having asthma taught me patience. If I waited long enough, I got better. I trust you will too.
I get what you're saying and there are definitely better and worse times with asthma - but not sure it's necessarily helpful for everyone to frame it as 'you will get better'. With severe, poorly controlled asthma, you don't necessarily get better overall, even though there are better and worse times of course. But some things are a permanent fixture, or what you used to do is no longer an option - which for some people can mean losing really significant hobbies or careers.
That doesn't mean there's 'no hope' or that you can't appreciate the better times, but I find holding out for 'getting better' in terms of my asthma overall (vs short term worse periods) is not a helpful way for me to look at it, when that's not realistically on the horizon. I feel relatively lucky because I haven't lost anything like a career, but for years I wasn't able to properly engage in hobbies I enjoyed that most people wouldn't expect to be affected, and even getting back into them now they're still affected sometimes and I'm still aware of how they could be more affected again. I've not done very well with 'maybe everything will get better' as a mindset, though I'm not advocating perpetual gloom of course - just reframing differently may be needed.
Obviously we're all different, and 'my asthma will get better' may well help some people, but I wanted to give a different perspective - though that doesn't mean losing hope and feeling that life is always going to be rubbish.
Madbiker, I definitely do get it, it does suck and it is hard! I do agree with Chrissiemons about looking for new things you can do - maybe arts/crafts isn't your thing, but it may help to see if there is anything you can do currently that you do enjoy. I get that it isn't a replacement though, and that is hard. Do you have anyone professional you can talk to (health psychologist attached to your asthma team for example, if there is one)? It doesn't take away the rubbish aspects of course, but it might help to learn ways to deal with it.
Very much so. My asthma really limits our social life because I have such a severe asthmatic reaction to cat and dog hair that we can't go to anyone's house who has pets or have guests with pets since the cat and dog dander on their clothes bags shoes etc. gets all over our house. It's really limiting and hard.
Something that I have found helpful is seeing a counselor who specializes in chronic illness. I meet with her once a month by video and talk about my frustrations and anxieties and since she deals with a lot of cancer patients, she really understands my fears around mortality and frustrations navigating the medical system (and her stories wind up making me feel grateful too since her poor patients go through so much!)
This illness has a lot of ups and downs but thank goodness for our wonderful community here!
I do similar and it is helpful, though personally I don't find it helpful to hear about other patients as I tend to feel guilty rather than grateful, and it drives me even more to minimise/ignore my own issues and how I feel about them. Mine has taken a while to get me to admit that the actual illness, not just the medical stuff around it, bothers me and to stop minimising it and pretending everything is fine. She doesn't let me get into 'but it's not as bad as it MIGHT be because other people have xyz', because I tend to use that as a way to avoid confronting how I actually feel.
I'm glad it's helping you though - just like asthma can be very different, I think we all have different ways of dealing with it. Though the medical system frustrations seem annoyingly common!
Asthma has destroyed my career and my life, but I also feel lucky that I got it on the year Xolair got approved.
Until recently I just got on with things. Asthma for over 30 years, diagnosed with Bronchietasis 13 years ago. Unfortunately the last year has been very different. Having to cancel going places , infections and flare up one after the other. Exhaustion breathless etc etc.It has become a bit overwhelming if I am honest. I think knowing my life has changed and will probably not return to the way it was a year ago is sad and depressing.
However as I write this I know there are lot of things that I can still do and should be greatful for that. Your post has really made me think about what I can do and not concentrate on what I cant. I wish you well you have really given food for thought thank you xx
I have had eosinophilic asthma for the last seven years.Sadly mepolizumab, benralizumab and omalizumab have not worked sufficiently well enough to get me off steroids. I am waiting to start dupilimab in the new year.
I am still working- for how much longer I do not know. I have to do a fitness test every year. I was 50 in the summer and believe me it's getting more difficult.
Steroids have kept me going but my GP is reluctant to prescribe them due to the quantities I have had.
At the moment I have one of the seasonal bugs that is going round - this, coupled with the extreme cold means I am gasping when I go outdoors.
Roll on summer.
Yes, it's very hard not to at times. I was diagnosed with lung disease at the age of 60 and feel cheated out of my retirement. Hard to feel differently at times although it serves no purpose other than to feel miserable but you certainly aren't alone in how you feel.One of the benefits of forums such as this is being able to offload to others who understand.
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Returning to work after long medical leave, not getting responsibilities back. So frustrated. 
New confused and fed-up!
