Sick of it all

I am a chronic/difficult/annoying asthmatic and in the last four months I have been on a downward slope. I can't get off steroids and as soon as i get to about three I'm so bad I'm back to eight (40mg) all my friends have just stopped calling and I suppose that's because i don't want to speak anyone anymore and the pred weepiness isn't helping.

I just can't deal with it anymore. It feels like my whole life is ruled by my body and the many allergies that come with it. I hate going to the hospital and three admissions in six weeks hasn't helped matters. I don't know I suppose I was always optimistic about it... I knew the drill I would be rubbish but I would get better- well this is the longest I have been at rock bottom. Even the supermarket is too much for me at the moment.

I give up. I really do. I have no life, and no hope. I wish the pred wasn't making me sadder but i'm sure it is. I used to be able to cope with it.

Sorry for venting.... just needed to get it out somewhere. I have my I'm fine mask on all the time in real life... it's just easier that way.

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Hi there. Couldn't log off to go to bed without saying hello.

I see from your other posts on here that like the rest of us you can give cheer and hope to others and would hope that you can find the same here. Like the rest of us too, you find asthma can be a right pain both in the hassle and in the way our friends and sometimes even our family don't really understand what its all about. I cough when there is a lot of dust on the roads or when I'm passing a building site and now my husband is asking if I should be working in the garden. Actually I'm fine in a garden but just not ours at the moment as there is a building site over our fence. New Health Centre going up - handy eh?

Hang on in there, honey, and rant and grump as much as you like. This board has big ears. Board rules state quite rightly that we can't give medical advice, but hearing a forum member say they think their symptoms are worse or steroids not working any more, we will suggest you go see the GP or asthma nurse or point you in the direction of the Asthma Advice line or email. I've emailed the Advice Line myself when I thought my GP wasn't listening properly.

Wishing you better times, wss.

Take care.

GrannyMo 8)

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Hey wss,

I'm so sorry you feel so rubbish, I was just wondering if there is any way you can get better controll over your asthma.. for instance are you on a theophyllin type of medication? and you under the care of a specialist asthma centre like Brompton or Heartlands? what does your normal consultant say about your asthma controll?

Do you think you could go and talk to your GP about how down your feeling? you shouldn't have to feel this way, its not fair on you. Maybe your friends feel helpless that they can't do anything and thats why ther've not been calling, maybe you could give one of them a ring and ask them to do you a spot of shopping or take you shopping?

I had a really rough patch with my asthma before Christmas which lasted a good 5 months and was in and out of hospital despite being on coninuous 40-60mg of pred, and I honestly didn't think things were going to get better - but, they have! thing's arn't perfect but they are sooo much better than they were, so keep your hopes up! One of my good friends once told me, 'I have asthma, but asthma doesn't have me' and thats the way it should be!

Good luck - let us know how you are getting on;

ally x

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Hi it would be worth talking to your doctor how you feel, sometimes they just don't have a clue as to what the medication is dong to you, they may have ideas on how to help. Is there any hobby which isn't going to make you worse that you can do? I do know how you feel, I gave up all my hobbies a few months back, was really depressed. I'm on pred, hormones and high dose antbiotics, I feel emotionally all over the place but I'm trying every day to do something just for me, it's tough as every time I move my lungs hurt.I've been watching my favourite movies and even laughed when feeling really low.Eating my favourite foods (not helping waistline but not giving up yet!)

Your real friends will be there for you, any others who disappear are not worth worrying about, found out this myself. Also made new fantastic friends who I wouldn't have made if I'd not been let down.

Take care and hope things start getting better. My asthma has been yucky since October and like you still waiting for some control, went months with lungs killing and being fobbed off there was nothing wrong and now I'm really ill.

Kate x

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Thanks everyone. I have a consultant appointment tomorrow so will speak to them to see what they think about it.

I know I bring some of it on myself as I have a fear of hospitals and because of that didn't go back to my consultant for a good few years and this is where I am now.

The suns out so it should lift my mood a little.

Enjoy the day folks

x

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Hi Wss

(((((zen hugs)))))

These are the hugs that I would give you if I was there and I could hug you

I can't

But please accept them anyway - sometimes a hug from a friend can make life a little more bearable when grey skies are very lowering.

Take care

Feejay

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Dear WSS & everyone else,

I am a children's nurse specialist & I read this site often to try to see things from the other side.

I am always moved by how much you support each other & care how things are going for each other.

Well done all of you & keep it up as I see just how bad life can be for the children & their families & others just dont understand do they?

WSS,

I really do hope you feel better today & I am so sorry that we (the health care professionals) dont seem to be helping you.

Pred does make you down so you are normal in that respect but if your are this bad you should be under a specialist difficult asthma clinic not a generalist who might be able to think of other treatments that might help. Omaliumab, Methotrexate for eg.

Maybe someone should look at your case with fresh eyes to see what can be done.

You can get a new referral which might be a bind at first as you have to go over everything again but it might be what is neede or if you are in a specialist team tell exactly how it is effecting you & dont be timid. We need to know just how it is for you.

Do you have a specialist nurse or practice nurse that you could talk to? or another asthmatic you know? Please dont give up keep pushing if it is not good.

Good luck

Ann

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Hi all thanks for all the support. I had my consultant appointment and spoke about the weepyness and the not sleeping and they have given me some support. Unfortunately I have to stay on 40mg pred until my peak flow reaches 350..... this may take a while! upon which time I can try and reduce to 20mg.....

I had my ige levels back and she said they were sky high (they all said greater than 100?) so the lady looked pretty sad when she was telling me....my NIXUS (? i think... the thing with the cloud you have to blow up and then blow out.... inflamation level thingy) was high too so think its all dropping into place

Anyway it's positive in a way as i sometimes felt like I was a fraud.... going there and feeling a bit better then getting worse etc.... but think its when im in contact with an allergen.

Hopefully I will have some leaway soon....!

Thanks again for this support this forum has been invaluable to me!