Denial

[Brenviking]

I was diagnosed with eosinophilic asthma nearly two years ago. I am on mepo and down to 5 mg of pred a day. However the mepo is not as good as a high dose of steroids - I struggle to do things that I used to - I used to love exercise but now it is so much of an issue that I hate it.

I am a bobby - I am 47 next week and to be honest, I am not sure how much longer I can carry on in the job - I would leave and get another job. Unfortunately my family are not very supportive and have no idea how hard things are for me now. Trying to talk falls on deaf ears - I have seen this before when somebody is ill - it's called denial.

At my last appointment I mentioned that I had struggled to move some paving slabs and I was blowing a bit. The nurse remarked that my treatment was so I could walk to the shops - at that moment I realised some quality of life is pretty much all I can hope for.

Best of luck to anybody who is suffering with this bloody awful disease.

[Josephone]

Hi Brenviking

I was also a bobby when I developed eosinophilic asthma. I was 55 and retired at 60. It was a tough spell for me to cope with this illness, I'm now 73. I persevered and managed to live a normal life as much as I could. I have been on mepolizumab for the last two years and this medication has improved my condition significantly. I trek and canoe quite a lot. Hope this is helpful. Best jo

[Mintoes]

Hi Brenviking, sounds like you’re having a hard time with this horrid disease which is not just “a bit of asthma”.

I know exactly how you feel about the steroids, if they had zero side effects I would love to be on them all the time - I’d be superwoman!!

It’s very hard accepting the finality of not being able to do what you want and I still struggle with it.

Work really should make reasonable adjustments for you though in my case, I would rather have health than adjustments. Unfortunately this is not a choice we have and I suppose long term , really high doses of steroids are not a good thing.

I don’t agree with the nurse at all, we have the right to do more than “walk to the shops” keep fighting and trying to get as fit as you possibly can and if you need more medication, push to go back to your respiratory consultant.

Hang on in there.

Ps possibly good news for Mepo users... apparently they have almost developed an auto inject system so self administration will be available for some of us.