The Diary Of Onebrokelady Aged 60 And A Half

milann

My sister was diagnosed with fibrosis of the lungs (can’t remember what type) when I was fairly young (she was 13 years older than me) this was many moons ago. She was given a very short life expectancy. One doctor really upset her by saying ‘that’s what to expect when you smoke’ she’d never smoked in her life. She was told she wouldn’t be strong enough to have children. She had 2 healthy boys. There were spells when she was quite poorly after catching a cold etc but 90% of the time she was fine and lived a perfectly normal life. She took medication but I can’t remember what.  I know there have been advances in medication since she was diagnosed (her boys are now in their 50s) She lived until her boys were mid 20s and when she did pass away it was a heart attack and nothing to do with her chest condition. Just remember the internet tells you the worse case scenario. 

Take time to absorb the information and get the specialist help that’s out there. It does make sense to look at your career options. Would it be worth trying to get a GP appointment to see what they have to say whilst you’re waiting for the specialist appointment to come through. 

Enjoy the new kitten 😻😻😻

Onebrokelady

enthusiasticsaver said:

Sorry about the diagnosis OBL and I cannot believe that you had to learn about it through the app without the doctor explaining it to you. You sound upbeat and good you have found a support group  and hopefully can get support IRL as well through family, friends and work. Early retirement may be a good idea if you are constantly exposed to viruses  in your work. 

Thank you ES 🙂 I must say I was shocked to see it like that on the app. I will have support once I tell people what’s going on, I just need to be sure of my fa to first. I’m definitely veering towards early retirement after working a full shift yesterday because I did struggle .

Onebrokelady

Cherryfudge said:

Well done on all the positives. It goes to show that those nice things go on happening and you can influence that. Caramel latte, chocolate cake and a new kitten sound like a really good combination!

I was a good day 😀 but then chocolate cake makes everything better 

Onebrokelady

Willowtree222 said:

Glad you got some rest. It's an amxious time and that will impact your health as well..hopefully you get some answers soon.

Applying for PIP isn't easy, but even the lower rate is £290 every four weeks, which will contribute to at least buying anything you could need to help you. 

Take care. 

I will look into pip if I do leave my job, I would also be entitled to ESA so need to check that out too 

Onebrokelady

peb said:

I know you have put off applying for PIP but I really do think it's time.  It'll really help on consideration for retirement and planning.

Hugs

Hi yes previously I wasn’t ill enough to consider PIP but this does change things. I would also be eligible for ESA too.

Onebrokelady

Baldybear said:

Delurking to say hugs and hope you manage to see a specialist soon.

Following on from satchmo and exercising lungs my dd has to do this although different diagnosis, she was born with cdh and also has scoliosis, she has to exercise her lungs daily.  Easiest we were given is bubble pep which is basically getting a milk bottle and some tube and blowing bubbles into water, the difference in pressure of the water makes your lungs work harder, its so simple but seems effective x

Hi thanks and I love your name 😀 I will investigate exercises for my lungs. I’m hoping I will be referred for pulmonary rehab which will advise me and I’m also walking as much as possible again 

Onebrokelady

foxgloves said:

Oh my goodness, @Onebrokelady - What a thing to have to get your head around. I think for now, the most important things are keeping yourself as well as possible, taking care of number one & doing everything in your power to see that specialist as soon as possible. 
Sending love & as many positive vibes as I can fit in this little message,
F xx

Thankyou Foxgloves it’s certainly been a lot to get my head round. I have allowed myself a week to get my head round the info then I’m into proactive mode so I’m making plans for keeping myself active and living life to the full as much as I can.

Onebrokelady

milann said:

My sister was diagnosed with fibrosis of the lungs (can’t remember what type) when I was fairly young (she was 13 years older than me) this was many moons ago. She was given a very short life expectancy. One doctor really upset her by saying ‘that’s what to expect when you smoke’ she’d never smoked in her life. She was told she wouldn’t be strong enough to have children. She had 2 healthy boys. There were spells when she was quite poorly after catching a cold etc but 90% of the time she was fine and lived a perfectly normal life. She took medication but I can’t remember what.  I know there have been advances in medication since she was diagnosed (her boys are now in their 50s) She lived until her boys were mid 20s and when she did pass away it was a heart attack and nothing to do with her chest condition. Just remember the internet tells you the worse case scenario. 

Take time to absorb the information and get the specialist help that’s out there. It does make sense to look at your career options. Would it be worth trying to get a GP appointment to see what they have to say whilst you’re waiting for the specialist appointment to come through. 

Enjoy the new kitten 😻😻😻

Hi thanks for this Milann I’m finding out there are lots of different lung diseases with varying prognosis so I really need to speak to someone to clarify exactly what’s going on. I have a rough idea of what to expect them to say due to the CT scan but there are still variations of damage and progression. The nes kitten is so cute and a complete madam 😀

Onebrokelady

Hi everyone  2025 is turning out to be the year that just keeps giving because now the cat has been diagnosed with a tumour in his bladder 😢 he is 19 and we were kind of exepecting to lose him at some point this year so it’s not a massive shock just sad. The tumour is inoperable due to where it is and his age so the plan is to keep it stable for now with steroids. I have to take him back next week to review if the steroids are helping then we will decide how to proceed. I spoke to DD2 to let her know seeing as he is actually her cat and she agrees that we will wait and see how he gets on but I think it will be weeks rather than months to be honest.

I worked yesterday and it was a struggle. I was quite breathless at several moments throughout the shift as it was busy so lots of walking back and forwards to different rooms and talking for long periods of time. I did also have a pain in the bottom of my ribs but this could be the remnants of the pleurisy that I had last week. I have found I’m constantly clearing my throat which is really annoying but can’t be helped. I’ve always had a problem with strong smelling fragrances and I had to leave the room at one point due to a parents perfume. The same thing happened today on the bus, a lady sat behind me and her perfume was really irritating my airways , this isn’t new though I’ve been like that for a few years. I’m bought some different wash liquid last week and I’m not going to be able to use it because it smells too strong, I can tell it’s irritating me because the end of my tongue tingles when I use it. I’m going to have to buy my usual Sainsburys one as soon as I can.

Today I requested that the consultant that referred me for the scan explains the results to me so I have a phone appointment on the 14th of February, he’s a Rheumatologist so probably won’t have a clue but there also a blood test result I want to ask him about so I can do that at the same time. The consensus in internet land is GPs vary a lot in their knowledge of this disease and seem to be very bad at explaining it to people. I’m going to check the Rheumatologist has referred me to the respiratory team and wait to see what they say. The wait to see a respiratory consultant also varies a lot and it seems 6 to 8 months is normal so I probably won’t hear anything yet. I also didn’t get to speak to my manager yesterday because she was off so I’m hoping to see her on Friday. I’ve got my shifts up until the middle of March and there only two shifts on the ward that I need to see if I can swap.

Im meeting my friend for coffee tomorrow then going to DD2s for tea, I made a leek croustade today so I’m taking that with me. 

Today’s positive is that I ran for the bus and didn’t die while  carrying the cat in his basket. The bus was at the lights when I came out the vets and I would have had to wait for ages for another one so I sprinted across to the bus stop. Luckily the road was clear and there was a queue at the bus stop so I made it in time. There’s life in the old lady yet 😀

Cherryfudge

I'm very sorry to hear about the cat. I hope the steroids help.

I am similar with strong perfumes apart from it's my upper lip that smarts a bit. Not painful but not something I'd want to live with. I'm currently using a scented fabric conditioner at half strength because it smells so strong!

And look at you, running for a bus and carrying something as you do so!