Coping with Uncertainty

[Lavender-Flowers]

Hi,

I wanted to ask about coping with uncertainty.....

I was seen by a rheumatologist last year for my symptoms and was sent for a lung scan to check for blood clots and apparently nothing was found so I was discharged. I was referred back to hospital to chest and heart for my symptoms and now have been told that a nodule in my lung was noted and should have been followed up. Similarly a heart echocardiogram labelled normal showed thickened heart structure (don’t know what but was listening to the doctor muttering the report out loud to himself). I still get chest pain daily (for over a year now) sudden breathlessness and other symptoms. My blood pressure rockets after a simple slow walk on some days.

One doctor has me confused by saying I am perfectly healthy before the reports were read and minutes earlier a nurse was even concerned enough about my blood pressure to go notify a (different) doctor. So I am to have a MRI despite earlier saying I have had too many investigations! Another doctor has said that that the lung nodule is probably not to be worried about but not definitely. The letters to my GP are also full of errors.

Unfortunately my parents are elderly and are finding things tricky enough without me saying anything and my partner doesn’t ask. I’m worried about the hospital getting so many things wrong, what this nodule is given I have daily chest pain, the mood changes brought about by fluticasone and ipra(?) bromide, the long wait for tests and results etc.

I was wondering how to cope with the uncertainty and worries without concerning my close ones.... does anyone have any thoughts?

[Hidden]

Hello Lavender-Flowers. I have read your post several times and given it some serious thought. We are dealing with 2 different issues here aren't we.

Firstly the disgraceful dereliction of duty towards you which has been shown by the various doctors whom you have seen. They have given you no answers and do not even seem to have read the results of tests properly or passed on correct information to your GP. Also they seem to be coercing you into having an mri scan when you have said that you do not want any more tests. You can refuse this and you can also defer it until you have had some answers as to the correct results to previous tests and what additionally they expect to find from an mri.

I would suggest going to your GP. Tell them that you want them to sort this out and get some answers for you. Don't take no for an answer. All of these people, including your GP have a duty of care towards you and I'm afraid that all too often they need to be reminded of it.

Secondly, you are afraid to tell your parents that you are having investigations because they are elderly and need help themselves. Well, they are adults, they have coped with a lot in their lives I guess and are probably capable of giving you some emotional support. Only you can judge this. It doesn't matter if they don't know the details.

Your partner may be reluctant to ask about you, waiting for you to open up

They may not care or may not wish to have to take your needs and worries into consideration ( if this is the case I can't think why you are still with them)

Again, only you can decide and act accordingly.

You need support, that's for sure. Whether from your partner, a friend or of course, the great folk on here.

I hope that helped you to sort out your way forward a little bit.

[Caspiana]

Hi Lavender-Flowers . 👋

What an awful predicament. I was shocked to read your experience. As an RA sufferer with RA induced lung disease, you have my sympathy. I think Hidden has basically said everything, but I want to reiterate her point about your loved ones. I know what it's like not wanting to worry/trouble your parents but believe me you, they are much more resilient than we could ever be. There were certain things going on in my life that I hid from my mother for years, because I was so afraid of burdening her. But in the end I told her everything. And lo and behold , she didn't crumble, instead she propped me up and supported me. Best decision ever. The truth is we can't do this alone. You need not be alone. As for your partner, it must be painful not to have their support and I'm sorry for that. Please do not feel like this is your problem, meant to be hidden from everyone. It's not. Please also remember you have this wonderful community to fall back on anytime.

Sending love and hugs,

Cas xx 🌞🌻🌱

[SquirrelsHolt]

Hello there dear @Lavender-Flowers and you certainly have been given the run around with getting a proper diagnosis. I feel sad for you --there's nothing worse than going round and around in circles.

Our two members @Caspiana and @Littlepom have both been in unison with their replies and would encourage you to speak to your nearest and dearest,so that they are informed about your health issues and that they can offer support etc.

I wish you well and please,please come back and update us. You will always have support from this forum.

[sner]

Hello LF,

Everyone else has done a good job replying, I'll add my 2p too, though it's not very different.

It's absolutely imperative that you get answers from the doctors. The point is not to attribute blame. The point is to ensure that you are getting the best possible treatment and that you have been properly diagnosed. Now, even if doctors are well meaning, and on the ball, you can still get misdiagnosed, so it's important that you go in there and be firm (without being rude, but like LP said, don't take no for an answer).

Now, it's possible they don't answer, because they don't know or they themselves are uncertain. Certainly, hearing a doctor mutter to himself is not what you want. However, you need to ask for an explanation (and if you don't understand 100% what they tell you, keep asking for clarifications). With the explanation, ask for a plan.

"So, we do X, then what?" If X shows Y, what do we do, if X shows Z, what do we do?"

If you think that you yourself can't handle this, because some people (including myself), can just be too polite for their own good... then take someone with you, who you think can help. Someone who's good at this sort of thing. My wife for example, if it comes to me, would send heads rolling to get answers. I myself, have trouble doing that.

Regarding not telling your parents, it's hard for me to advise this way or that, I don't see/understand everything that you see/understand. However, the partner not asking you, that's a little much. One hopes that s/he's just doing what he thinks you want, but you must tell her/him explicitly what you want. Remember, your better half can't just read your mind (especially if he's a man...!! :-). We must share the good and the bad. This is not a time for you to be "alone".

Re coping... well... this is difficult. You need to be able to clear your mind somehow. Meditation is one way to go, puzzles/sudoku/computer games etc are another way. If you lose yourself in movies, watch some more movies. Go out with friends. Laugh circles are pretty good. Petting zoo maybe? There's something for everyone, but you need to find what works for you, and it's never too late to try new things.

Personally, I play football to de-stress. As it happens, I'm currently injured and can't play footie, so I play computer games. It's not as good, but for a little time more while I recover... it'll do.

I hope this has been of use LF! All the best and good luck!!