Hi, I've recently been diagnosed with Interstitial Lung Disease and am really struggling to come to terms with it all.

[MrsShimmy]

I am a mum of 3 and until now was a tutor in Adult Ed teaching Dance and Textiles. I'm stuck at home mostly as I'm unable to walk far and dont feel safe driving. My Mum is also poorly with secondary breast cancer. I'm not sure where to go for help! My care so far has been excellant but I'm starting to worry about the changes in my life...I'm only 44 and was looking forward to years of dancing, travelling and fun.

[mrWheezy]

Hi MrsShimmy, sorry to hear of your news its a very difficult thing to take in at first. Can i ask have you had a specific diagnosis yet as ILD is an umberella term which covers many lung diseases, it may be that you have one of the more manageable and treatable conditions. I am 38 and have Idiopathic Pulmonary Fibrosis and Pulmonary Hypertension and my progression has been very aggressive, I have only been poorly since september last year and am at end stage now with only the option of transplant.I hope you find the answers you are looking for, we are all on here to help each other with our ups and downs, sharing our stories and experiences.

Tony

[maggie44 in reply to mrWheezy]

Hi Tony

I should have replied to you before. I'm so sorry to hear about your ill health - terrible at only 38. I know that idiopathic Pulmonary Fibrosis can be very aggressive on its own - to have pulmonary hypertension as well is even worse. I know, since I have recently been diagnosed with that as well as the NSIP. I am just waiting to go into RB for a couple of days to get started on some medication for the PH - hoping it improves my breathing a bit.

I presume from what you say that you are on the transplant list - that must add an additional level of stress! Have you been able to get involved in any of the trials for IPF or were they not helpful for you. I do hope you have some success with a transplant soon. Take care and will be thinking of you also.

Maggie

[MrsShimmy]

Hi Tony,

thanks for your reply. They are finding it difficult to find the exact diagnosis, the biopsies are doing the rounds!

I hope you are able to have a transplant soon.

[maggie44]

Hi Mrs Shimmy

I am so sorry to hear of your illness, particularly at such a young age and with family responsibilities. Even when I was diagnosed in my mid sixties I found it a big shock. I had just retired and was looking forward to doing all the things I had promised my husband we would do when I finished working the long hours I did. Best laid plans!!!!

I think it is normal to go through a range of emotional responses - shock, anger etc I think it can also sap your confidence ( particularly as being short of breath can be rather frightening at first). I cannot imagine how you must be feeling with a family to care for and your mothr ill as well - I hope you have support available from other sources.

As far as gaining more confidence is concerned, I found going to a pulmonary rehab course helped enormously because it helped me understand my condition more and also gave me strategies to use when I became breathless. It also gave me the confidence to exercise sufficiently to become short of breath and build up my fitness level which after a serious infection and a stay in hospital had got really low.

Like MrWheezy I hope you are getting a careful diagnosis because as he says, there are a number of different manifestations of lung fibrosis and different treatments for some - no cures as yet I'm sorry to say.

Perhaps talking to one of the nurses or specilists at BLF might be helpful. They can give you information about different conditions and their treatment and perhaps advise on what practical help might be available.

Take care - will be thinking of you.

Maggie

[Hidden]

Hi Mrs Shimmy

Yes - as Maggie suggests - give the Helpline a call (03000 030 555) - have a chat with one of the team and we will do our best to give you any help we can - even if it's just the opportunity to talk to someone.

Take care

Mark

[MrsShimmy]

thanks Maggie,

I am going to ask my consultant about Pulmonary Rehab when I see him on the 20th. The diagnosis is ongoing, not for want of trying...they call me the woman of mystery!

I think I am fustrated as much as anything, I'm a typical mum...running round at 100 miles an hour....well I was anyway! I dance all over the country and am really missing the dance comunity altho I get lots of visitors its not the same.

I'm off for a lung function this afternoon, my 3rd so far....fun, fun, fun!

hope you have a good day

Mrs S

[tanyamarie]

Hello, MrsShimmy,

Good luck this afternoon with your test. Hope all goes as well as can be for you. Sorry to hear about your mum too.........

Just take it one day at a time as you will feel differently as to what you can and can't do on a daily basis, as you probably have discovered and the more support you can have the better it will be for you. Talking on here will help to relieve some of the frustrations you may have especially if you feel you don't want to burden your mum. The sooner you get a definitive diagnosis the better so your treatment plan can start because being in the dark about your diagnosis is scary isn't it.

The rehab course will do wonders for you and as you are so young I am sure the medical professionals will pull out all the stops to help you.....more so than the older generation I think. (In my dads case anyway).

Take care and hope you feel better soon x

[MrsShimmy]

thanks to all who replied, as Tanyamarie says its all about taking it one day at a time, I think that the rapidity of it all has worn me down (in February I only had a bad cold...). I have a wonderful family and loads of great friends and my faith and church family will help me be strong...everyones allowed a wobble sometimes though eh?

take care xx

[Gilliam]

Hi MrsShimmy

I wanted to drop a quick note to say how sorry I am to hear you are suffering from this horrible illness. It is frustrating especially when you are used to running around doing lots of things. Of course you are able to have a wobble and this is a great place to share experiences and frustrations. I have felt very alone in the past as it is hard to explain how the breathlessness affects you both physically and mentally. At least on here you can vent your emotions to people that actually get it and ask for advice.

Keep in touch

x