Venting/When will it get better ?

[BriSimone96]

Hey Everyone My name is Briana (Bri) And I came here because I feel like no one understands what I'm going through. I've been sickly all my life I'm 22. And I've had Asthma since I was a baby. Recently after an Asthma Exacerbation I was diagnosed with Sleep apnea and Brochiecstasis. I've been sick Every month since Dec 2017 ...December Asthma Exacerbation, Jan2018 Pneumonia, Feb,Bronchitis , and now I'm feeling sick again. I can't get a job because I'll keep getting sick and I barely go out because even the weather changing will send me to the hospital. My family thinks me going to my friends house because she has a baby and my immune system is already baby like and horrible I'm gonna keep getting sick. They don't get that ANYTHING makes me sick . Weather, people, Dust, mold it doesn't matter. Im always sleep and feel tired and never rested, I feel like I live in a bubble and I'll never get better. It almost feels like I'm just waiting each month to get sick guys.I don't like this at all.

[wheezyof]

Hello Bri,

As a Mum, then a granny and now a great granny I can understand your family. Us adults do try our best to protect our off spring from all the evils of the world. However, I was also a daughter, albeit a long time ago, who wanted to grow up and make my own mistakes.

As you say many things cause flare ups for you and it seems a shame to miss out on something you would enjoy, in case you got ill, only to get ill anyway.

Your family have been doing the best they can for you and I'm sure they will carry on doing so.

However, perhaps it's time to consult an expert or three. Can you get some advice, about the best activities for you, from any of the following :- your GP, respiratory nurse, your consultant? Or is there a Breathe Easy support group you can join?

To allow you to mix a little more with other people ask about the creams and sprays available to help block bugs, dust etc getting into your sinuses. I know you can buy them but you need to ask a doctor if they are suitable for you.

A good starting place for help would be to ring the BLF helpline.

Wishing you as well as you can be xx

[Shancock]

I'm so sorry it must be very hard for you I do sympathise. I've had times myself for months at a time when it's been a struggle.

I agree with the other post. Do you see a specialist? Think you need to see someone regularly a respiratory specilast and a physio for breathing exercises. I've heard it helps to use something called an Acapella to breath in daily to help clear your lungs. So I would ask about one of those.

A breathing support group or asthma group would be good. They generally run them in clinics so ask at your doctor surgery.

To help clear and clean your sinuses try using a sinus rinse daily. It's called Neilmed sinus rinse, you will need the starter kit it comes with the rinse bottle and sachets and then you can just buy the sachets alone. You don't even need to go to the chemist they sell it on Amazon. It's really good at keeping the sinus area clean and helps with allergies and colds etc. Also daily use of Sterimar alongside it can be beneficial.

A physio will be able to help with gentle exercises too which should help strengthen your lungs and improve your overall health.

Do you take supplements? A multivitamin with 14mg of iron is a good start and extra vitamin D3 and C. Manuka honey is good for immunity too.

I would get a full blood test done to check all your levels and see if there's something you need really topping up.

I do hope you can start to feel better for the spring I know winter is a horrible time. But I would start with asking about these support groups and getting expert help. GPs will often throw meds at people but really it's only going to help in the short term, sounds like you need a long term plan and support.

Good luck and keep us informed.

[Hidden in reply to Shancock]

Really good and helpful post Shancock.

[Hidden]

Hi Bri, so sorry to hear about what you're going through and how you're feeling. It must be getting you down a lot. I agree with the previous post about talking to your doctor/nurse about what you can do to enable you to enjoy some activities and see your friends. You're young and obviously want to have a social life and things to look forward to. You've got a lot going on with your different diagnoses so you do need someone to help you work things out. Good idea too about ringing the helpline. I hope you can get some help, and that you will feel better soon. Let us know how you're doing x

[Helennn]

Hi Bri, exactly the reason I and a lot of people come here also. My friends are brilliant but at 22 and 26 for me I feel like no one understands why I’m ill constantly and not going out with them having a good time. I don’t know about you but I would definitely rather be outside having a good time than be cooped up unwell!

I’m not sure where in the country you live but did you have minus temperatures and snow last week also? I know it’s not done anyone any good being out in that! Are you better in the summer?

I would also talk to your doctor about having an emergency pack of antibiotics and or steroids to keep at home so when you feel like your getting sick you can nip it in the bud on that day!

Take care x

[cofdrop-UK]

Hi Bri and a very warm welcome to you, althoug I am sorry to hear of your health issues.

Great advice from your new friends who have posted.. You may find it hepful to chat with the nurses at BLF.

Please know Bri we do empathise and certainly do understand what you are going through.

Personally I was diagnosed with bronchiectasis at the age of 5 months old following double pneumonia and whooping cough in 1948, and so have never known life with good lungs. More recently I have asthma, IBS and arthritis, but I have never lived in a bubble. People with bronchiectasis often carry bacteria which can come out to play and make us poorly, whether we are in a bubble or not. That is not to sa that I don’t take sensible precautions i.e. keeping away from folks with coughs and colds (not easy at this time of year), frequent hand washing etc.

I assume you have had a ct scan to be diagnosed with bronchiectasis but I am concerned that you sound as though your conditions are not being managed as well as they should be.

You really need a respiratory consultant with a special interest in cf/bronchiectasis. They can usually be found in large cities. If you need help in finding one, then let us know of a large city you have access to and we might be able to help, although names of docs are not allowed on site but can be forwarded by PM. If you alreaady have a specialist in bronchiectasis then you should have spirometry, sample of sputum, referra to a respirattry physiotherapist to teach you a technique and PEP gadgets to suit you. Normally they would also arrange for you to have a sweat test to illiminate ct.

You don;t mention any medication, or what bacteria you usually grow. There is much that can be done to manage bronch. Dependidng on what your consultant considers beneficial there is prophylactic antibiotics, the most usual of which is Azithromycin which is normally taken 1 Mon, Wed and Fri. Many people with brnchiectasis nebulise bronchodilators, saline 0.9% (which is the same strength as all bodily fluids) but more frequently hypertonic saline either 3%, 6% or 7%. This works by osmosis and draws in fluid into your lungs which helps to loosen sticky mucus which makes it easier to get rid of when you do your physiotherapy. It all depends on the test results and what you grow and the frequency and a very proactive consultant would know the best things to try.

One thing we learn very early is that we have to be our own advocates with brnchiectasis, especially with GPs.

Enough for now sweetheart but if you have any specific questions or need to chat, there will always be someone here happy to help.

I think your aim must now be to get better treatment, enough to help you have a better quality of life and I hope you get over your pneumonia soon (although that does take time) and become more condident in your own ability to enjoy more things and give the bronchiectasis and other health issues less control.

Love cx

[mrsmummy in reply to cofdrop-UK]

Great advice and understanding.