Scared.

I stayed so strong thru the tests and result that I had all the symptoms of CTEPH, my lungs confirm but they just want to check my heart to confirm and see how bad.

I made jokes, tried not to worry that I seem to be more breathless than ever

I have been trying to deal with council tax errors, utility bill errors and today on the phone yet again it was like a damn burst, i started crying, letting out the weeks of stress and worry. Family doesn't know. Husband had a breakdown over guilt of not being able to help more when the problems started, he even left for a short while as he felt so helpless.

I have no friends local and feel so alone.

How do you cope with trying to live as normal when you are so scared.

[sassy59]

Not easy Helen and I do feel for you. Please be assured that there are lots on here just like you and they will do all they can to support you and give helpful, kind advice. I live as wife and carer to Peter and he has had sarcoidosis for almost 24 years and copd for nearly 5 years. We have had our scary moments but pull together and get through. I do understand your husband's feeling of pure helplessness but he needs to be with you and talk to someone who could help him through this too. The BLF nurses are there to help and can speak with hubby too.

Try and tell your family as keeping it from them is not a good idea. They may be relieved to know and want to help where they can. Please contact BLF, just click on the red balloon, and come back onto this great site as and when you feel like it.

You are not alone here Helen. Wishing you well. Take care xxxx

[jenss]

Oh dear Helen, I am so sorry to read this. Please please (and I know this is not easy) try not to worry as it will not help. Try to enjoy every day, find something good: a movie, a book, a phone call with somebody and also carry on as normal as you can. Hopefully, you will see your dr soon so that they can give a definite diagnosis and a treatment plan. There may well be options of medications and/or other treatments such as operation that will help you get better.

In the meantime could you ask your GP to prescribe you an antidepressant or antianxiety drug to help you? They are low dose and not addictive but help a lot. I will be thinking of you- all the bestxxxx

[diggerruth]

Oh Helen, I so feel for you and not too much I can do to make a difference. However, there should a Welfare Rights Department in any One Stop or your local Council Tax office. If you or a family member could ring them, they will defo be able to help with benefits, they may do a home visit or give you an appointment to go there. It may seem daunting at the moment but would be worth a try. Other option ring your GP surgery and they can sign post you to some support. I sure, that you will get a lot of practical support on here and most importantly moral support. I wish you the very best of luck love! Ruth xx

[Hidden]

I have benefits, I'm not even thinking of the review for dLa, an extra problem.

The bill side is more no one seems to get anything right, if my husband is my son (?) I was 2 when i had him!

Feeling a bit more in control now. Was the first time I had let myself think about my health in ages.

Had a good chat with my husband who understands my fear of telling my mum anything, a hurdle i will put to one side and just concentrate on keeping me and my relationship healthy.

thanks for the support when i needed it.

[scorpiolass]

Sorry to hear of your diagnosis & anxieties Helen but really pleased you have been able to reach an understanding with your husband. Sometimes we keep strong & in order to do so hide our feelings from everyone, including ourselves. It's a survival thing. When we do allow ourselves to get in touch with how we feel, the tears do start & I think we can be all the better for it. But if the feelings become overwhelming, I agree with Jenss that perhaps antidepressant or antianxiety drugs may be helpful to you.

I am thinking of you. Love Mx

[Offcut]

I have PH with paralysed diaphragm, Restrictive Lung Disease, fibrosis and exercise intolerant. To help things along I have had long term heart conditions with a few other issues! It does seem like the world has fallen in around you but please try and be strong. There are a number of specialists centres around the country that can and do deal with this. Might be worth a chat with your GP/specialist.

The problem with PH is the rarity of the condition 2-6 people per 1,000,000,000 So it is fair to say some doctors may not be up to speed with the condition Do not take any notice of Doctor Google forums I was diagnosed with it a little over 2 years ago but they cannot say how long I have had it for. My pressure is not high but the lack of lung function compounds it for me. I know the sudden loss of breath on the simplest of things sometimes is frightening but do not let it rule you (I know it is easier said than done) I still go out and getting from A to B will not always be quick but I will do it.

Please feel free to message me. I am happy to talk you though my way of coping.

Be Well

[amberbond]

sorry do not know what CTEPH means so unable to try and offer support.