What next? Feeling a bit down with it all

Hey all

I know a lot of you are struggling at the moment, I know it's not just me, but I really don't know what to do with myself any more. In the space of 4 days this week I have been in hospital TWICE, first time I had so many nebs I thought I was going to end up looking like one (this was after I had nebbed at home, to no avail), and was kept overnight, and the second time I was working a night shift (luckily in a hospital!) and had to go down to A+E for millions of nebs, IV magnesium, O2, the usual...have been on pred since sunday but I am still so short of breath, even walking up one flight of stairs has me reaching for my inhalers. I really don't want to go back in, and I'm not bad enough to consider it yet, but it's only a matter of time...

I am on what most doctors consider ""max meds"" - salbutamol, symbicort, spiriva, oxis, ciclesonide, home nebs and now pred for a little while. There is no point in making an appointment with my GP - although she is absolutely fantastic, there is nothing more she can do to help. I am at my wits end with my cons (never see the same one twice so it seems, so am going from pillar to post with meds) but have an appointment to see them in a few weeks time, but even so I'm not sure what they can do for me now either...

I'm sorry for the rant and moan but I am really depressed with it all, my asthma is restricting my life, my work, everything. I know there are people worse off than me, but I wouldn't wish this on my worst enemy. Even sat at the computer now writing this I am breathless and struggling a little...how am I going to complete my degree at this rate?!

Any general advice would be very much welcome, as well as possible next-step meds, and do you think I should arrange an admission with my GP (if this is possible - only ever gone in in emergencies, though many, many times!)?

Hope you are all keeping well, and that the nasty thunderstorm passing has allowed your lungs to recover!

Emz xx

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Go to hopsital and say you are struggling to cope with your asthma at home for more info see When to get help post in medical.

Dont be silly by staying at home i did this last year and ended up in for ages and ages and very poorly get seen to now!

We are not hear for medical advice you should know that the amount we say it on here.

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I got in a similar situation in January. I was really struggling to do pretty much anything and was just stupidly tired and couldn't cope with it. I was on 60mg pred, QDS nebs plus PRN. There was pretty much nowhere to go. I was waiting to start Xolair and was in no condition to do so at that time. Consultant had conveniently gone on holiday and at the time I had no support from the respiratory nurses.

Went to the GP and she said it wasn't an emergency - I was able to talk albeit in slightly broken sentences, and had managed to get there instead of going to AnE. There was nothing she could do for me but there was no way I could cope at home for much longer. I was getting more and more tired. I wasn't going to get better out of hospital so she admitted me from the surgery onto medical admissions. What I am trying to say is that it might be worth going to the GP if you dont feel you are acutely unwell enough to warrant AnE. (Obviously if you are struggling to talk etc then dont hesitate to go down to AnE). I have found being admitted from clinic/GPs far less stressful as I am ""with it"" enough when I arrive to know what is going on. It might just help you a bit not to keep on struggling at home and have a couple of days with someone else doing everything for you - meds, food etc.

I don't know if I have really helped but that is what I would do. Also have you tried any theophylline/aminophylline tablets? I also swap from spiriva to nebulised atrovent when bad as it seems to provide more relief- I dont have the puff to operate the spiriva inhaler when bad.

PM me if you want to chat. Good luck with the degree. I am going in to my final year so I know how you feel.

Em

xxx

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Hey crazybaby

Do you have a resp nurse at the hossie you could talk to? I have an excellent resp nurse who will see me whenever I need to if struggling and arrange addmission etc.

Please dont sit at home struggling, if you feel worse please go to A+E and take someone with you to explain the situation about how you have been unwell for a while.

Clare

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Hi, have PM'ed you. I think wherrers advice re GP and admissions is another possibility to add to what I suggested. I'm sure your GP would be happy to help

Which Spiriva devise do you use? I've got the Respimat which comes out as a vapour (like a neb) so no puff needed. If you're using the handihaler (sp?) it would be worth asking about changing or using nebs as suggested.

Hope things pick up soon.

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Totally understand where you are coming from at the moment and hope that you are managing ok tonight??

I have been struggling for 2 weeks now, so unbelievably tired due to waking every night, now on max drugs as well plus salbutamol and atrovent nebs through the day and night. Trying to continue with work as following an HR meeting, i have to remain at work for 8 weeks with no sickness otherwise we move ever closer to losing my job (this is only week 2). Am seeing the GP weekly and the hospital con weekly so they are keeping an eye but have not reached the stage of needing A&E (for which i am grateful) and am kind of managing at home with nebs etc but i feel i am running out of steam and the doctors are running out of ideas...i want to state that if i was needing emergency help i would seek it, but it feels a bit like limbo land where i am in between being at home and feeling poorly but managing and being in hospital. I never been in this position before and it does really get you down.

I really do hope that everyone else who is struggling is ok and hugs to all

Cory xx

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Thanks for all your messages, it is really good to know that I am not alone. I am thankfully ok this evening (am at work at the mo!) and hoping it stays that way.

I am definately going to go and see my GP, might be worth having some sort of organised admission plan, if not for now then for the future.

As for the spiriva, I have the Handihaler type device, switched from atrovent (only have to remember to take spiriva once a day, rather than 4!) but I have atrovent nebs for emergencies, which are usually very helpful indeed.

And yes, I know you guys aren't hear for medical advice - but sometimes, it's nice to know you're not alone

Hope all are well xx

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I don't know whose decision the Handihaler was and their reasons for it, but if you're sticking with the Spiriva (and once a day seems preferable!) it would be worth asking the GP about switching to the Respimat as you don't need the puff to operate it.

Hope you're OK tonight. It's fairly cool and the rain seems to have finally passed so things might (hopefully) settle down.