The Diary Of Onebrokelady Aged 60 And A Half

milann

That’s fantastic news about the ESA. I didn’t get the winter fuel allowance with mine though…..apparently there are 2 kinds of ESA…..one gets the fuel payments the other didn’t. Can’t remember what they were called. Hopefully you’ll get yours 🤞

Sun_Addict

Mr SA is in the support group but doesn’t get the winter fuel payment. The other group is based on household income so anyone on that gets it. Hopefully you’ll be on the income one 🤞

Cherryfudge

For anyone about to get a senior railcard, it's cheaper per year to get a two-year version, or at least it was last year. However, it's obviously more to pay up front.

Seasidegal58

Just a head's up for everyone to be on alert - I've been receiving texts over the last couple of weeks purporting to be from the DWP asking me to use a link so that I can receive my Winter Fuel Allowance! A couple of family members have received these also. I think we're all pretty savvy about these scams on the boards but it might be worth mentioning it to any older friends or relations who might take these as gospel!

Onebrokelady

milann said:

That’s fantastic news about the ESA. I didn’t get the winter fuel allowance with mine though…..apparently there are 2 kinds of ESA…..one gets the fuel payments the other didn’t. Can’t remember what they were called. Hopefully you’ll get yours 🤞

Yes theres two sorts, one of the YouTubers I follow was caught out because she didn’t realise and did t pay for some dental treatment which she wasnt allowed to so she was fined I think 

Onebrokelady

Sun_Addict said:

Mr SA is in the support group but doesn’t get the winter fuel payment. The other group is based on household income so anyone on that gets it. Hopefully you’ll be on the income one 🤞

Sun_Addict said:

Mr SA is in the support group but doesn’t get the winter fuel payment. The other group is based on household income so anyone on that gets it. Hopefully you’ll be on the income one 🤞

Oops presse the quote button twice 😀 i think I might be in the support group , they probably do t get the  WFA because they get a higher month.y payment than the other group. 

Onebrokelady

I had my appointment today and I’ve been diagnosed with fibrotic hypersensitivity pneumonitis which is a progressive form of pulmonary fibrosis caused by breathing in a substance of some sort that causes an immune response. 

They have said they think it’s from keeping chickens and the antigen is feathers and bird poop. I now have to rehome Babs my hen 😢 and I also have to get rid of my sofa because the cushions on the back are full of feathers 😳poor DD2 has also got to get rid of hers because it’s the same sofa ☹️ I have to have my house deep cleaned to get rid of any traces of the antigen because it’s carried inside on your clothes. I have to wear a mask when I’m around the chicken until I can get it all sorted.
They don’t 100% know that this is the cause but it’s the most likely cause, I also have exposure to hay and black mould so it could also be that.

The treatment plan is avoid the source of the problem at all costs, maybe steroids , maybe immunosuppressants and likely oxygen therapy at some point. It’s not curable but if I can avoid the source of the problem it might slow down the progression. I have had some bloods done today and also have to do a 6 minute walk test to see if I need oxygen . My lung function at the moment is 60% and she thinks I can improve that if I follow all the advice and I do the pulmonary rehab. 

So the plan now is I’m going to rehome the chicken asap ( dd2 might have a colleague who will take her ) then ditch the sofa ( luckily I have chair I can sit in until I replace it. DD2 is then going to come and clean my house while I stay at her flat because I’m not allowed to be here while it’s being cleaned. It’s literally damp dusting every surface including the walls , mopping the floors and cleaning the bedroom carpets. I, so glad most of my house has laminate floors, I just wish I had them in the bedroom too. I’m not allowed to visit anyone who keeps birds in their house as each time I’m exposed it can make the inflammation worse and cause more scarring.
There is a possibility of me taking part in a clinical research trial, it’s a rare disease that they don’t know a lot about and they mainly use steroids to treat it but they don’t have proof this actually helps so they are doing a random project where some will get the steroid and some will get a placebo for 8 months. I might not be able to take part because I’m on a low dose of steroids already.  I can tell them from my pint of view that the steroids help the symptoms because mine I have got a lot worse since they dropped my dose. They also said you won’t know if you are on the steroids or not but I’ve been on 40mgs of steroids before and I can tell you I was bouncing off the walls 😀I’ve never felt so good in my life so I think I would be able to tell 😀

I’m relieved I now have a diagnosis but sad at the repercussions. I didn’t ask about prognosis as the appointment was an hour and a half long and I was bombarded with lots of info. If I do clinical trial I will see the team more often to be monitored but if I don’t I will see the consultant again in 6 months. The consultant I saw was really nice and I now have contact details of the whole team if I need any advice.

Next stop is pulmonary rehab which starts next Tuesday. I haven’t heard back from them yet but it can take up to five days so I will wait until the end of the week and then give them a call if I don’t hear anything.

My boss is phoning me tomorrow for an update then I’ve got the occy health appointment on Wednesday. She is also writing to my gp and I will get a copy of the letter which she did I can use for evidence if I need to.

Cherryfudge

Wow, that's a lot to take in. I'm glad you have a probable name for your condition, but I'm sorry it means letting Babs go. And how awkward about the sofas. I hope Babs gets a perfect new home and you get some cosy new seating (maybe FB marketplace?).

It all seems to be moving quite quickly in terms of appointments now, and it's great you have people you can contact should you want advice.

And just a thought about the cleaning - curtains and blinds too, I guess? Even lightbulbs and tops of cupboards, and clothes that might have allergens on.

dawnybabes

Well it’s one way to get a deep clean done, can think of better ways though ! 

Hopefully the rehab thing helps your lung function and removing all the allergens from your home might make it easier on your body.  Do you have to wash all your clothes as they will have been in touch with Babs / sofa ? 

jwil

Glad you've got some answers now.  Shame about the chicken and sofa.