Employment & Sleep Issues

Hi Debra

You are not on your own. I worked at a College and during enrolment (mainly August through to October) we were expected to do a days work then enrol on the evening through until the last client left, sometimes 8.00pm. Then we would have to cash up. I was ill after each main enrolment and every time I had my "back to work" interview I explained how ill I became, but they never understood. They thought it was just me trying to get time off. In the end I left, I couldn't take anymore. I haven't worked since. Now I rest whenever I need it, but the guilt of not working when you know the finances require you to is only making your situation worse. We manage. 

 

Its very rare I sleep well and I never feel well rested but I am much happier these days without the stress of work and people who don't understand.

Hi Debra,

Me too. In the end I have settled on a job writing freelance, which in theory is a bit more flexible as I can write at times of the day or week when I feel better, but at the same time, if I've arranged three articles per week or whatever, I can't just not do them if I feel too ill all week. 

But at least I can work from home or even bed and don't have to be all perky for 9am every morning! Perhaps this might suit you?

Hi debra

I worked for 50 years with bronchiectasis but I won't pretend it was easy. I had to take time off work and employers didn't understand. When I was young I didn't have the same medical support that I do now and I spent an awful lot of time struggling. Later in life I got more help and although I was still ill I didn't need to take so much time off. I managed far better when I worked part time, preferably working three days a week with two off... Not always possible of course but I did manage it for a while. I sleep well most of the time but I do have bad nights sometimes - mainly with bunged up sinuses. I clear my chest before bedtime and use my seretide puffer which helps with breathing.

I don't regret working even though it was hard. I made great friends and learned a lot. And it kept me "normal" and didn't turn me into an invalid. If my mother had had her way I would never have had a job but I am glad I persevered.

X

Hi Debra,

When I colonised pseudomonas in 2005, I had to reduce my hours to four days a week and one hour less a day in order to spend more time on physio and reduce stress. In hindsight, I should have reduced my hours more!

I would say it is wise to only work part-time, though full time might be ok if it is a job with very little stress.  Pseudomonas is a nasty bug and any prolonged tiredness or stress can make things worse - it did with me anyway.

Even with my reduction in hours, I continued to have repeated infections (mixing with people in the office) and ending up hospitalised for IV antibiotics four times one year.  I eventually gave up work as my health was so bad and have felt a lot better since, with no more hospital admissions.

If there is an option to work at home, that can help with the infection rate as you are less exposed to people with colds etc.

I have given up my job miss the money but found had to keep up it was busy 7 to 8 hours a day rushing round and going from late shift to early shift but still have trouble sleeping and still wake up feel tired 

Hi debra.

I'm 48 and haven't been able to work full time for many years. It's been worse since I got the pseudomonus bug. When I was 34 I went to college and did a hairdressing course as I knew as I got older I wouldn't be able to work full time or even part time for anow employer so I still do a bit of hairdressing but my clients no that if I'm unwell or I'm on ivs I maybe out of action for a few wks maybe you could think of doing something like that (I don't know how old you are so maybe college would be to daunting) The other thing you could do is Avon (assuming that you live in the uk) this means you can deliver the books which is good exercise and it can be a good little earner. I hope this helps in some way as I know how difficult it is to lead a 'normal' life with bronchiectasis. Ultimately you need to take care of yrself so don't overdo things as you will be even more tired.

Rach xx

debra, I wor

Debra, I worked for nine years with BRX. Two at fulltime and seven at partime. I retired two and half years ago and did not begin to have fatigue until 18 months ago. I think that your doctor might be of help to you in dealing with the fatigue along with all of the ideas that you get from all of us on this site. For me personally, what has helped the most is starting Azithromycin MWF about a month ago. Their is a noticable difference in how much less fatigue and illnes that I am expereicing. So you might think about that. Some doctors are fearfull of casuing an immunity to antibiotics for some bacteria and that is legitamte I'm afraid but, my infectious disease doctor felt it was safe enough to try. Others on our site have had good results also. Maybe some have not, but I have not seen any such report.

Hope this helps,

Russ

Just to follow up Russ's post, I have taken Azithromycin 500g three times a week for the last 10 years - since I picked up pseudomonas. It isn't used as an antibiotic, it's used to prevent the pseudo from operating efficiently and keeps it under control. Also acts on inflammation. So no concerns about 'resistance' as that isn't it's purpose in this case. its made a huge difference to how I feel.

Hope that helps someone on here