Sorry to moan just needed somewhere to rant. Very fed up and emotional this evening. Back in hospital again only escaped from my last stint on the 3rd of September. Keep having to rely on family and friends to pick up the piece and play mum to my children. Missing them and missing normal!!! My asthma is all over the place even with xolair injections. Keep picking up viruses.
Anyway rant over. Hope you are all well.
😣. Lots of bugs about at the moment I think... back to school season! Thinking of you - hope you feel better soon x
Rant away, we all understand, and those darn steroids are making life difficult. My Asthma is not settling but managing to stay out of hospital. I am lucky in that I am managing to cough up the crap, so it does not take control. Keep drinking the water - it will make it easier for when the Vampire comes around, and help shift the muck, or thin it down so it is not so sticky. Injecting myself three times a week now with immunoglobulins (antibodies). This may also be helping me together with my nebulised antibiotics and prophylactic antibiotics. I think the bugs dare not take a hold!!! Thinking of you.
Thank you. Have also been classed today as brittle type 1 as well as severe that I had before. Does that mean anything to you? I'm unsure of the difference x
Hi , I was on xolair for a good four or five months before I started to notice the change, it was slow and I was and am still poorly at times but overall the difference is I can have really decent "normal " times. Winters of course is always difficult and September is never a good month- often because the temperature drops, and the damp starts. Overall though, I am now able to do things I haven't been able to for years. I am on lots of other meds as well as xolair . I have a very good team, they are supportive and always willing to listen to me rant!! I forget at times how far I've come - but they remind me - I feel lucky to be able to shower alone and walk upstairs most of the time , work and go out with my friends - which was impossible before! Hold on in there - give it time - I feel for anyone struggling , it's a hard time if year at the best of times Least of all when you feel down - sending best wishes x
Yeah winter for me is never good. I pick up everything going. I've been on xolair for 7 nearly 8 months. It has helped a bit but not enough to get me off any steroids which is what is causing me to pick up viruses and infections. X
Oh that's a shame, sadly it doesn't work for everyone - it did take me over a year to get off my steroids, weaning off , I was on them for three years solidly before , ,back up then down again - over and over ! - and I still go on them at times, every time I'm ill. This year from Jan to June I was on them at least four times but since then none! Yet !!
I have emergency ones at home all of the time, and I also have friends and family that do everything during those bad times, thank goodness ,but now my children are older, we have taught them to understand too and they help me too when necessary - it's such a horrible disease - and very lonely- people do not understand how low you feel at times. But it's really important to try to stay positive because that does help.
I may not be helping telling you all this but I'm trying to say you are not alone - and
I really hope you start feeling better soon x
Thank you. It's all good to hear. I've tried to get off them but every time I drop below 30mg my lungs kick off. It's a hard disease to understand and live with but I guess many of us do. X
You aren't ALONE. I took and came off steroids so far my adrenal glands stop working
Back in hospital again :(
I’m having a moan
In hospital yet again
Been back in hospital Pneumonia again!!!!
