I am well and truly fed up. I managed a whole week out of hospital and I am back.
I am also fed up as some staff think its funny or look at me like i am weak. In fact I am anything but. The psychologist I am seeing (who is awesome) has been encourage me to accept my lot and ask for help and do less. One doctor told me today all my problems are i am over weight. I mentioned I carefully count calories but exercise is hard if not impossible. Apparently I need to do more. I was not sure if I should laugh,cry or punch him. Yes I could loose some weight. He ran away after that saying lungs are not his thing. He does somthing else. Awesome.
Whilst I am moaning... i really feel like I should give up and stay home. I have run out of fight. Hopefully I will find some soon.
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Larrythelathe
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Positive thinking, sounds stupid but it works for me. Just found out I have another health problem , and wondering how the heck to cope with it, but I will I'm strong I'm amazing, in fact I'm earth shattering. So are you, you just forgot for a little while. Good luck
I was never bothered by my asthma until 3 ish years ago and then I had a bad exacerbation and it made me realise that so many ‘medics’ know or understand very little about asthma. There is NO way you can exercise when you are having a flare up (and I’m a fitness instructor!) and having no control over your body is frustrating and scary. I really hope you start to feel better soon.
Thankyou. I went for a shower this morning. I am now done in. I laughed at myself so things could be worse
Before I had astma in 2014 I cycled every day. I used to go do 100 miles in the alps. Now I think the bike would break
Frustrating is the thing. In my mind illness is weakness. Even though I know its not. I beat myself up doing things then pay the price. I am getting more aware of my thoughts and actions. Its a funny feeling to think about your thoughts.
I used to think it was weakness too, used to believe I was invincible. It’s not nice to know we are not. Just look after yourself, you are not alone in this
ye that would amusing. I would also like them to breath through a straw and walk down the corridor and back. Then hammer them with nebs so their heart goes like the clappers allowing very little sleep.
Having sad that he was only one to have offended me. So 99 percent are awesome.
I some times feel like such a hassle when people shout welcome home, back again? Etc
I too have been told to lose weight - I can diet but exercise beyond walking is difficult. I must admit that in the past I have got good results from using resistance machines in the gym. Building up muscle strength eats calories. I've always struggled with cardio type exercise so weights/resistance really helped me. At the moment I'm just thinking about it 🤔 😉. Easier to think than do.
They are very unprofessional if you ask me and medical staff want a pay rise!!!! Ignore them if you are poorly go to hospital that's their job to help you not mock... Lots of us have gained weight we've been locked inside for months me personally a stone 3 proper meals a day TV and snacks so yep I'm fat. Please go if you need help and always fight with your last breath if you have to. It's not your fault you are ill. 😊
Sometime you just can't it takes time. Why change your views if you are struggling to breathe all that doesn't matter you/we need help, that's what the professionals are for. Never feel guilty or weak most of us have been there. Take care of you.
Sorry to hear you're having such a hard time. It's difficult how invisible asthma can be to others. Even when we are struggling to breathe, it can be hard for others to see. I definitely am in no shape to exercise or even go on a long slow walk when I am in an asthma flare. I understand! Take good care and keep getting the help you need and know we understand and empathize here!!
Oh dear that's not good. Hope you are feeling better soon. x
it’s very hard to lose weight, and 19 out of 20 people who manage to lose weight gain it back and sometimes more.
For me it was the right Med that stopped that revolving door in and out of the hospital.
My allergist put me on Tudorza because it does what Spiriva, but I don’t tolerate Spiriva.
When I went on Tudorza, I went from being in the hospital 26 times in 24 months.
Now? One one night stay in the hospital in 20 months, and I think that was just erring on the side of caution because of my history. That’s also the only time I had to go to the ER in 20 months.
My doctor tried one new med in three months so we would absolutely know whether a Med helped. If you change two or meds at once and you improve, you won’t know which one made the difference.
I would urge you systematically to try new meds. It’s important. My last severe exacerbation, I had an acute kidney injury and now I have diminished kidney function. It’s a good thing I went to the hospital because the kidney failure started suddenly started at home but I didn’t know it was happening.
It is really hard especially when you feel judged and scrutinized. I can deal with the constant ups and downs (ups being like molehills and downs like a huge valley!) But the mental emotional feeling judged, scrutinized, not heard, not understood is way harder.
Remind me, are you under a consultant? If you can be referred to psych somehow, someone who works with people with long term conditions (sometimes comes under palliative care which can be a bit alarming but is just because it's long term/chronic which of course asthma is) that might be helpful. I hated the idea of it when I was referred to the hospital's breathlessness service to see the psych person but she was amazing and really got the difficulties faced by people like us with a difficult, and often difficult to control, condition. Not just dealing with the physical side of it but how it is having to deal with doctors not listening and stuff. Her input and subsequent "report" has fed to my consultant. Ok it's not perfect but it has helped.
Oh that's good. If only medics could be made to do courses with psychologists so they could make them understand the impact some of them have. As you say, many are good. But one person can have such an effect.
I am sorry you are going through this rough patch. Sometimes medical professionals are not very nice (when I was 14, I waited six months to see this “amazing” rheumatologist. (I had bad problems with my joints). Went to the appointment, and he didn’t even look at me. In the room, he late his lunch, called some store on the phone, and ordered something with his credit card. 🙄 (Then reports back to my GP that I have nothing wrong with me). It was the most uncomfortable doctor visit I have ever had. I felt so stupid for being there! I should have known it was going to be bad when he came out to the waiting room and yelled at this woman in a wheelchair telling her to stop her faking and go to X-ray (leave the chair there and walk!!). Then he looks at me and calls me in for my appointment! Everyone in the waiting room looked at me with shock/sadness/sympathy. Haha I will never forget it. My mother was with me, and she stayed in the waiting room, making me go there alone. Haha
I was thinking the other day if, or how, I can lose some weight. I have been in a flare since March (my father died, and I have been so busy with work and my mother and the pollen/humidity all happening at the same time.). I want to get back to exercising, but just getting dressed these days cause me to lose my breath and I have to sit down or I feel faint. So, the problem is: if just putting my clothes on makes me gasp for air, how am I supposed to exercise??? The gyms just opened up here, and I would love to do my favourite kickboxing class....but I know I would probably faint right now if I tried. That would be embarrassing. I worry that because I have put on a few pounds (30), if I go see my doctor, he will just tell me I have gained weight. I know I have. So I don’t go see him. I don’t even know what to say to my doctor even if I were to go see him about this. The bad experiences I have had in the past (with other doctors) have made me really hesitant to seek out any help at any time. I just keep telling myself: It will pass. I will be fine.
I think the fact that you are brave enough to get help for yourself is amazing! I wish I was able to. It is a good thing you are getting the help you need. Don’t mind the doctor who thinks he is doing you a favour by being a jerk. Hope you are feeling better soon.
We all know weight does not help our health it's a fact
BUT
1)
As psychologist said - you need to ask for help and do less - the problem we have is that we compare ourselves to what we should be able to do for our age, what we used to be able to do and what other people our age can do.
This thinking is not helpful to ourselves as we go through the cycle of pain. Feel good so do too much and then suffer for days.
It is important to recognise that it is not weak to ask for help and to pace ourselves.
Yes challenge yourself but not in comparison to others nor what you could do before you had the condition.
2)
If we do less to avoid triggers or because the symptoms make it hard to do things then this makes it harder to lose weight.
As someone who not only has Asthma but also has a number of other conditions that make losing weight difficult (inc PCOS) I know I am overweight, I try to lose weight as I know this does not help me .
Really you would think the way Dr's talk about the weight you would think:
(a) that we didn't know that we are overweight and its a problem
(b) that they don't believe we are doing anything to try and lose weight
(c) that they believe the weight is the problem to everything so don't look into anything else
3)
We have to be kind to ourselves. You know you are doing the right things don't let comments like that demoralise you and if you do stray from the healthy path, don't beat yourself up get back on. You can only do what you are capable of doing.
I found after 3 car crashes that pain affects mobility which affects activity which affects weight.
You can eat as healthily as you like but without combining it with activity it will be hard to lose weight and activity depends of your symptoms and health.
By overdoing your activity you will deplete energy and increase pain making ability to be active harder.
These insensitive jerks are a wind up. I'm sure they think you must just eat all day long, which if they understood Asthma/breathlessness is not really achievable! After all isn't a symptom we go off food of skip meals...
I've often been told my asthma exacerbations are due to poor technique. Funny how when I'm better the same doctors now praise my technique!
I am home at last. Came home yesterday. My peak flow went to 400 but today its back to sub 200. I really wish I knew why. Its crap. I am feeling somewhat let down. That's first time I have had mad things to say about NHS.
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Struggling again :(
Hospital again
In hospital yet again
