I have complex health issues centred on ILD and auto immune issues. My wife is very distressed by my health issues and the fact I can't be 'fixed'.
Is there any group, forum or support she can go to to get some help to understand my condition and come to terms with how it affects me?
Thanks in advance.
Hi Wheezysister, I’m carer for hubby Pete who has COPD, sarcoidosis, heart disease and back problems. I joined this wonderful forum back in 2012 as felt lost and isolated. It would be great if your partner could join as everyone is so supportive and welcoming.
Here to help if at all possible. Take care xxx
Thanks.
As well as her joining this site it is well worth looking on Facebook to see if there is any groups on there. I have just joined a couple of group on Facebook for a different condition and the support on there is invaluable.
Will do. Thanks.
Best wishes. I agree with Sassy- this forum offers a lot of support.
Thanks a mill
Your wife would be more than welcome here. She can ask questions or just join in with general banter, or read what others say about their conditions without making any comment at all.I used to wish my husband would join - but he's not a 'joiner' so I just read bits out to him that I think are relevant.
I also belong to a local Breathe Easy group that meets once a month and partners /siblings/friends are all welcome. Again, my husband is not a 'joiner', so he gets information second hand from me.
When I first became unwell, I think we both thought I was the only person around with lung disease. We were surprised to find so many people we know are living with lung conditions.
Remember, it's 'living with'! Yesterday, for example, the Breathe Easy group outing was to Highclere Castle. It was great!
Did my husband come? Of course he blooming well didn't, but he heard all about it when I got home!
I think it has helped him to hear me talk about things, including the difficult issues that sometimes crop up. Be sure to let your wife know about things that are going on on the forum. Don's poems are often a good way of opening up a topic, I find. I usually read them out to my husband and after having a laugh at Don's inevitable humorous punch line, we talk about the issue he's raised as well. They are often lung related.
Anything that will help your wife know that there are others out there living with lung conditions will help her feel less alone with it and may help her to understand what you are feeling and going through.
Xx Moy
Thanks a million, Moy. I'll get her on here asap.
check you r nearest Action for Pulmonary Fibrosis support group in your area, full of information and support
That's handy advice. Thanks.
Hi, this is a great forum for people with lung problems and their loved ones 🙂. I know from my own experience that no question seems too trivial. There is so much support as well as friendship and laughter 🙂xx
Thanks
Hi. I presume you have pulmonary fibrosis. If it is there is a group that’s called Pulmonary Fibrosis Carers. I hope that will help her.
Well, I have auto immune ILD with Obliterative Bronchiolitis on top of severe asthma which is the illness of many years standing. There's nothing about PF in any of my records. The ILD and OB are courtesy of COVID which I caught after all the shielding in December 21.
Also have various other issues of an autoimmune nature (inc. scleroderma) and atrial fibrillation (af).
The combo of lung issues and af mean I am terribly breathless most of the time. I am also dog tired a lot of the time and feeling persistently under the weather.
All in all, she's fed up with it all. She doesn't get why diagnosis takes so long, why treatments are sometimes slow to work or don't. I explain in detail.whats going on and what doctors tell me etc. but it's like she just can't get her head around it. For her, one is either sick or well and there's no gray area.
I am for sure going to try to get her to participate here so she can get some advice and support.
Hi . I’ve got scarring at the bottom of my lungs which I believe to be ILD. But no it doesn’t mean you have pulmonary Fibrosis. I just thought if you did it would be a useful group for you. It does take a long time for diagnosis of anything. It’s all part and parcel of the times. I had covid I think after Christmas I also had Shingles with it. Luckily I had the vaccinations for both. I was pretty poorly at the time but lucky in the fact I’ve got over it with no side effects. I must be strong somewhere. I know it’s not my bones as I’ve had several fractures. It’s amazing I did get over Covid so well. I wouldn’t want it again.
Oh and other people don’t get illness. It doesn’t matter what it is. They just thinknyou can be how you’ve always been. I’m afraid it’s not always possible.
For sure
Do you take her to all your medical appointments. It certainly helps my wife as she gets to ask the questions that she has.
She's not wanted to come. She has a lot of antipathy to the medical profession based in her own and her family's experiences. But that's excellent advice. I think she'd feel better hearing from the consultants first hand, given how frustrated she feels. I also think maybe she feels I am not telling her the whole truth. She's quite the desasteriser, bless her. She's scared to death, I know. I want her to be less stressed and terrified. Thanks, homely2
This is really interesting and reminds me that when I was first diagnosed, my husband didn't get it either. He, too, was one of the 'either ill or well' brigade. 'Fortunately' (although it was bloody awful for me at the time) I started to have severe vertigo attacks and, because of this, my husband began to accompany me to my appointments.
At first, he couldn't understand why I was taking so much medication and he was convinced that all my ills were due to side effects! In other words, if I stopped swallowing all this junk, I would be fine again.
My GP soon set him straight and encouraged my husband to ask questions. My husband then came to my respiratory appointments with the consultant and heard very similar things from him. The consultant discussed x-ray and CT results and made it clear that they showed my lungs were damaged. He explained that I needed all the medication I was taking to keep myself well.
The cardiology appointment was by phone and I encouraged my husband to listen in. He heard from the consultant how atrial fibrillation can leave you feeling exhausted and breathless. I had an ablation last year and have found the difference quite remarkable. Also, my GP discovered that I was severely anaemic and treatment for that has brought my energy levels back up.
My husband comes to most of my appointments with me these days and speaks up if he's not sure about something. He asks questions and adds to the discussion, which is great. He's not frightened or overawed by the doctors anymore.
A major change came about when it was discovered that he needed a new heart valve - he had never been ill before! It was a shock to him as he thought he had a chest infection and was told he had fluid on the lungs due to a stenosed valve. The valve was replaced but he still has heart failure. His outlook on medication has changed completely since then!
Perhaps your wife will begin to understand, but if my experience with my husband is anything to go by, it won't happen overnight. There are those of us who can't be 'fixed' but we can learn to manage our conditions and still lead as full a life as possible. In the meantime, our other halves may be struggling because we are no longer the same people - perhaps we're a bit slower, or can't do as much. Maybe illness makes us grumpy some days. Perhaps some of the fun goes out of the relationship for a while. And, yes, perhaps they're frightened to death!
I think we have to make an effort to let them know that we're still the same person inside. If we can't go places, we need to let them go and 'do their thing' without making them feel guilty for leaving us. It's a two way thing - if we want them to care for us, we must care for them!
I'm sorry that your wife is too frightened at the moment to face it all. I hope that time will show her that you're still the same 'you'. You can still find things you can enjoy together and you can still have fun.
Just another thought - if she won't come to your appointments, perhaps your doctor could send a copy of his summary to you and you could show it to her, or read it out. That way, she would know you aren't concealing anything. My consultant usually follows everything up in writing and that's been very useful for us both.
You need to support each other now. I really hope things work out and become a bit easier at home. It takes time to adjust, but many manage it and I hope you and your wife will find ways of doing the same.
xx Moy
Thanks for the smashing reply. Very encouraging and helpful.
It can be hard for partners, and there isn't so much information for carers / partners, who naturally want to help!
I would suggest that the best way to help you is for them to be informed about the conditions you have. It is a hard balance for you to explain how you are feeling and experiencing your illness with not feeling 'you are going on about it the whole time'!
Try to think about ways your wife can help you, either by doing something practical (e.g. helping with something you find difficult to do) or asking for her to simply make some time to listen to you without trying 'to fix'.
Joining Health Unlocked forum is certainly a good way to understand better what it means to live with these illnesses.
It does take time for both of you to adapt to this 'univited' addition to your life.
Ace. Thanks so much.
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