First mepo tomorrow - hopefully this’ll stop me wheezing!

[EmmaF91]

Hey everyone

Bit of a rant this time - I’m just very frustrated at the moment! I’m tired of being asthma-ry, tired of not being understood by family, and tired of being tired!

I haven’t been consistently well since June, with daily and nightly issues almost the whole way through. The only times I’ve actually felt good and managed to sleep through is for a few days after iv hospital treatment, otherwise I’m up 2-3x a night and I’m over-relying on my ventolin during the day 😒. I’m on steroids (25mg atm) but still having a lot of issues, but if I go up the steroids keep me awake - I can’t find a ‘works on lungs:let me sleep’ balance. It’s been worse since I had to stop xolair due to allergic reaction.

So not only am I tired from my symptoms, but I’m tired from waking up all the time and from the drugs I’m on. I’m constantly borderline, living in my yellow zone, bouncing in and out of red constantly, and very rarely in green. I can’t workout what I can do to calm it down - all my GP can do is keep sending me to hospital, and at the moment I know I’m not ‘bad’ enough for that. 🙄

Then I have people telling me that I just need to work through the fatigue. They don’t understand that being a severe, difficult (currently unstable) asthmatic is tiring - my mums a ‘normal’ asthmatic and really doesn’t understand this! If I don’t sound bad to them, then it’s not a problem - I’m just being lazy 😡. Or they think I either need hospital or I’m absolutely fine. 9 days after release from hospital is plenty of time to be back to normal, so I just need to start doing things again, work through the fatigue and it’ll clear up! Any tiredness I feel is because I’m either lazy (and CBA), depressed or it because of CFS (diagnosed aged 11, 16 years ago when it was all the rage). If I’m depressed then I just need to sort myself out and get out of the rut, if it’s the CFS then I shouldn’t ‘give in’ to it (I used to use pro-plus/red bull but can’t have caffeine now due to meds). They don’t understand that waking 2-3x due to asthma is more tiring than waking due to insomnia or kids etc. You wake up struggling, sort yourself out and fall back to sleep knowing the cycle will begin again in a couple of hours and then struggle through the day. 😒😖😤

I tend to hide when I’m struggling cause I don’t like the attention and the ‘are you ok? Do you need hospital?’ I get when I do but I’m not ‘bad enough’ to go anywhere (another thing they don’t understand). Then I get lectured when I try to explain I’m tired! To make things worse, my brothers got crohns and they understand how that makes him tired, and don’t keep on at him even if he’s not actively ill (probs because he never got diagnosed with CFS 🙄😤)

I’m just tired of it all, fed up of being wheezy and frustrated that I’m made to do things I shouldn’t because people don’t understand (ie lift things in and out of loft as we’re currently decorating. No my lungs don’t like the dust or paint either!). Fingerscrossed tomorrow will start a slow improvement in my lungs and thus my tiredness (esp as I head into my ‘bad’ season)! I’m currently not working, however I have an interview coming up soon and want to be well for it!

Sorry for the rant - thanks for letting me get it off my chest 😤🤬😅

[cherokee6399]

Hang in there. I've been suffering like you for a long time. Actually this whole year. I am going in for a bronchoscopy to see if I have mucous plugs. They doctor will also flush out my bronchial tubes of the thick, sticky, chunks stuck down there. I hope it helps. Sometimes I feel like I have lung cancer but my cat scans show that it is just asthma. Best of luck to you. Stay close in touch with your doctor.

[EmmaF91 Community Ambassador in reply to cherokee6399]

Thanks. I think I had forgot what being uncontrolled was like - I was like this for about 2/3 years before I started on xolair which vastly improved my control. Unfortunately that stopped in July so have slowly worsened since 🙄. I just just having a pity party day yesterday as I was tired and frustrated cause I know I can be asymptomatic!

Currently unsure if I’ll get my injection today cause I’m symptomatic with (v high) HR and a relatively recent history of infection. Bloods and ecg then I’ll know the plan! 🤞🏻for the mepo and no trip to hospital!

I hope the brochoscopy/gunk clearing helps to calm things down for you x

[Shellc]

Hope goes well with mep ,I’ve had 7 so far and can say I’ve improved but for very fatigued with first few, I have also gone on a vitamin regime of vitamin d and magnesium , altered my diet to no wheat and sugar and am feeling so much better as well as making my home asthma friendly

[EmmaF91 Community Ambassador in reply to Shellc]

No mepo today 😒. They think I’m still getting over my virus (bloods clear, but high HR/palps plus bad asthma). Back for my 3rd attempt on the 22nd 😅.

I’m glad it’s working well for you! Hoping I’ll get the same response! 🤞🏻

[lucia_m]

This sounds dreadful, really feel for you. I hope the mepo helps.

[EmmaF91 Community Ambassador in reply to lucia_m]

Thanks - I think I was in a funk yesterday and throwing a pity party 😅. Now I just have to get ‘well enough’ so that I can get the mepo 😂 x