Overwhelmed by severe asthma

[CWhite2610]

Hi, I am 26 years old. I was wondering if anyone else struggles with living with severe asthma- I feel like it dictates a lot of my life and what I can/can't do.

I work as an ICU nurse but have to take extended periods of time off because I end up in hospital with flare ups. I am on biologics, and steriod dependent but I do not like having to take steriods everyday. I am usually pretty positive about my condition but I guess I am just overwhelmed with appointment after appointment and I don't feel like I am getting anywhere?

I have to take a lot of medication everyday to deal with the side effects of the steriods. I kind of feel embarrassed because if I go out, I have to take a whole bag of medicines with me.

My boyfriend is very understanding and very knowledgable about my type of asthma-as he is a doctor- but I feel like its such a burden and causes me to feel low.

Just wondering if anyone else finds it overwhelming?

[floating_]

I get quite overwhelmed too actually (on Xolair and Prednisolone, as well as a bunch of other things). My best advice is to seek some mental health support. It'll do wonders for your ability to cope with it.

[Anselm198]

I totally understand what you are saying. I hope I can offer you some hope. At 26 I was in and out of hospital including ICU. I am now 57 and thankfully keep out of hospital. That is not to say that I don't have flare ups because I do. I have so far managed to keep working. The Church of England have been amazing over the years as you would hope they would be and the NHS should also provide understanding and support for its staff over illness.As for the bag of tricks that we carry around, well I still need that. Mine includes adrenaline and hydrocortisone because illness loves friends.

I agree with the other writer get some mental health support but it does need to focus on living with a serious illness. Asthma UK Forum and the Brittle/severe asthma Facebook group also helps you to know that you are not alone in this. So pleased you have a boyfriend and I shall pray that your relationship blossoms.

My own mantra is enjoy life.

[Davenpos]

Hi ...I am 51 now developed asthma at 26 first attack ended up ventilated...was on many different drugs as well steroids ...seemed to settle for a number of years then in 2016 ended up on ecmo...since then ventilated every 6 months up until started on benralizumab but still require high dose steroids daily ...It has messed my life up totally , emotionally socially and financially ...I try to stay positive but it so hard as I miss my old life ...

Chin up Hun .x

[Meliko]

I agree with the suggestion to look at some mental health support, just to try and get your head round the fact that you're still YOU, even though you now have to carry a big bag of medicine around with you and the asthma feels like it's taking over your life. Try googling IAPT? They do some 'living with a long-term health condition' courses, I found it really helpful and (also an NHS worker) work gave me time off for it because it was seen as part of working with my disability

[Birthday60]

I understand but there are things you can do which will help. I’ve had severe asthma since I was a few months old and before inhalers were available. I am now 63. Asthma ruled my life - couldn’t go on Girl Guide camp or sleepovers with friends, couldn’t visit houses with dogs and cats or go house riding etc. however the lack of inhalers was actually good in the longer term as I had to really work on my breathing and now I understand the importance of keeping lung fit. Seriously get fit , slowly and carefully improve your lungs

[hilary39]

I totally empathize. I have severe asthma and am on a slew of meds too--Symbicort Spiriva Xolair and daily hydrocortisone because I was on prednisone so often I developed adrenal insufficiency.

It is really hard for my healthy husband and our friends to understand how cautiously I have to live my life. I can't step foot anywhere with a cat or dog or I risk I severe attack. I even get attacks now from the pet hair on people's clothes so we have to be really careful who comes over to our house.

Now that we have an infant, it would be a million times easier to meet parents (in non-covid times) at their houses but absolutely all the new families we meet seem to have pets so we are limited to restaurants and family-friendly spaces in public which can be really hard to explain to people who don't understand allergic asthma.

I totally get feeling like your chronic illness hugely impinges on your social life. I also feel

exhausted from having to be hypervigilant all the time and even when I'm healthy I fret about when and why the next flare will hit.

I have seen a therapist, talked a lot with friends, read a lot of books, and I'm in a better space mentally a lot of the time but I think no matter how much you work at coming to peace with having a chronic illness there's always the potential to feel really anxious or depressed by it and especially when that illness can be debilitating and potentially deadly.

One book I love is How to Be Sick by Toni Bernhard. That helped me more than almost any I read. I also like Healing Your Chronic Illness Grief by Jaimie Wolfelt.

And of course this forum is a godsend! I am so grateful for everyone's wisdom, thoughtful posts, and support here!!

Hope you're feeling a little less overwhelmed over there!

[Littlerunner14]

You are not alone. I too feel overwhelmed by my asthma diagnosis. I have not been diagnosed long and still under investigation as I’m getting worse as time goes by, each attack brings a longer recovery and I am now finding, after my last attack in October, that I’ve developed anxiety, struggling daily and can’t snap out of it. I feel depressed and frustrated with myself for being like this and having to cope with recurring illness. My airways appear to be hyper sensitive to the slightest trigger and the more I stress about it the worse it gets. I was never like this before I developed asthma. I would agree with the other posts about mental health support. I think this is going to have to be the way forward for me. However, when I felt overwhelmed during my last attack and reached out on this site I found that the fact people took the time to offer advice and support really helped get me through. I am hoping a couple of weeks off work at Christmas may help me rest and be able to come round a bit and get back to exercise which I find is a great help mentally and keeps my lungs healthy.

Take care