Advice

[Jackyw1056]

Hi Everyone. New to the site. My sister has been diagnosed with Non specific Interstitial Pneumonitis (think that is the way it is all spelt!!). Both me and my nephew are looking for advice on how to support her through this. Are there any counselling services that we can speak to/attend? It is the enormity of the situation that none of us can get our heads around. We live in the West Yorkshire area. Many thanks in advance of any help. Jacky

[sassy59]

Welcome Jackyw1056. I’m sure your sister will be grateful for your support. It’s a shock for you all I’m sure.

I can only think of ringing the BLF helpline during office hours Monday to Friday on 03000 030 555. They have nurses who may be able to help with your query.

Wishing you and your sister well. Xxxxx

[Jackyw1056 in reply to sassy59]

Thanks very much for your reply. I will ring them .

[Oshgosh]

I was diagnosed with. Non. Specific. Interstitial Pneumonia last year.

My first priority was finding out about it. It’s impossible to get any positive info about this.i also have been diagnosed with lupus this year ( how lucky can 1 person be?)

After a few months I came to terms with it to some e tent.

I did. T,which he me sort my head out a bit.i accessed it through my GP

Also did pulmonary rehab which was offered by the respiratory team ,it did help me.

The important thing is to stay positive

I go to the gym,I’m not the best athlete,but it keeps joins muscles moving.

Also attend a living well group.

Sorry can’t give you anymore positive feedback,but a positive attitude does help. I’ll be happy to give you any support I can. Take. Care

[Jackyw1056 in reply to Oshgosh]

Thank you so much. Yes, my sis is going to pulmonary rehab soon. She is now on oxygen so her capability, exercise wise is very limited. You take care

[Oshgosh in reply to Jackyw1056]

They’re very careful with you at pulmonary rehab.

The principles are to strength muscles joints etc.

I found the education bit really valuable.

The Most important thing is to stat positive try to maintain her social/ workforce contactstexts Facebook etc.

Get out as much as you can.even if it’s only a coffee,it helps make new contacts.

See if there’s a Breath Easy group near you

Supported by the. BLF details on their website.

Take care

[Jackyw1056 in reply to Oshgosh]

Thank you. We do get out as much as we can but I work so it tends to be at weekends. She has a very good friend network who are really supportive towards her.

[Oshgosh in reply to Jackyw1056]

That’s good. Tell her to accept any invitation. It does you good to get out and about..

Re counselling I don’t know what’s available in your area.lookfor leaflets etc available at pulmonary rehab and other areas,also google for stuff around coping with chronic life limiting illness available

in your area.

The living Wellgroup I go to is for people with a life limiting disease.

You can be referred or self referred.i referred myself..

It takes place at a hospice locally.

They don’t have beds,do a load of psychology,psychotheraphy,counselling.

There 4-5 of us with lung issues,a person with MND the rest of our 20 strong group have issues around cancer.

I do for one day a week.it does help

[Jackyw1056 in reply to Oshgosh]

Thank you. I will do some digging.

[ProudYorky]

Hi Jacky so sorry to hear about your sister I'm from West Yorkshire was diagnosed with the same illness in March last year at Pinderfields Hospital.It has taken me a while to get my head round it and to pice together all the relevant info and ditch the garbage out there . I am going on a 6 week course in Jan which I'm told will be of great help .As you and your sister will already have been told there's not a great deal the specialist know about ILD as it's a fairly new diagnosis due to advancement in technology .What I will say is steer clear of Google on the net as this will not only confuse you all but put the fear of good into you and her . Just take notice of what her specialist tells her the rehab team will answer anything she needs to know . Speaking from a sufferer of this disease she like many say needs to think positive try to be as active as possible without overdoing it . She has to realise and come to terms with the fact there will be many things she can't do that she once could that where you and the rest of the family will be her rock . But theres a fine ballance don't treat her like an invalid as this may be negative to her well-being . There no way of sugar coating it she's in for a tricky ride but with care and treatment and plenty of love life won't be doom and gloom .She needs to get out if possible special in the fresh air . Unfortunately there's nothing much to ease it no sprays work . She will I presume have had flu and pneumonia jabs . Hope I've helped a little positive thinking all the way

Best wishes

Just add 2greys on here gave me a great link to a speech by a very prominent consultant but I'm struggling to find the link maybe if 2greys reads your post he will kindly post it you

[Jackyw1056 in reply to ProudYorky]

Thank you so much. Good point about mollycoddling her 😂. I know I am doing that but it breaks my heart to see her struggling 😢. She has got pulmonary rehab starting again soon and the oxygen nurse gave her some good breathing techniques yesterday. She is actually still ‘working’ but on sick leave at the moment. She would love to be able to go back but I think she is coming round to realise that in all probability that will not be possible . Once again, thanks for your advice and I hope that you enjoy your life.

[Knittingnora55]

I hope you can find someone to help you with this I'm sure you will on here stay brave x

[Jackyw1056 in reply to Knittingnora55]

Thank you. Our mantra is positive mental attitude 😂