Scared😷

[Dion3844o1]

Well as usual I'm worried IV had mctd and pf for about 4 yr now only diagnosed last march though but they weren't sure anyway my immune system is a no go I catch everything ,can't even fight a big off with antibiotics because I'm used to them even IV.i did say to the specialist I know and you know I'm gonna die and soon and his answer was well I don't want you to die so let's see what we.can do and yet I was given more IVs , apparently I'm a rare case because multi things wrong with me ,I can't have immune suppressant until I'm free of infections but it's not happening ,am I supposed to live in a bubble? and now Wednesday I have my breathing tests then seeing consultant really not looking forward to this I hate.ro say it.but I'm fed up living like this now😭

[Corin1950]

I don’t know much about your condition but here’s a few suggestions of the top of my head to improve your immune system which I have used throughout the years to help my husband and myself stay healthy.

Wash your hands regularly.

Try using a few drops of tea tree oil and/or lavender essential oil in your bath ( if you can tolerate the smell) or you can use it neat on a hanky.

Improve your gut health by eating a wide variety of foods including lots of coloured fruit and veg. This will also increase your intake of vitamin C. Take a good multivitamin mineral tablet each day with an extra vitamin D. Garlic Tablets are also good too as are Omega 3 fish oils.

Take a teaspoon of Manuka or local honey first thing in the morning or last thing at night. Don’t have a hot drink after it as this kills the antibacterial action.

Use Vicks First Defence if you’re going out or at the first sign of a cold., also extra Vitamin C. I take a Berocca .

My Grandma used to make beef stock and chicken stock when anyone was feeling ill and I still make both of these regularly by cooking a chicken or a piece of beef in a slow cooker.

Just a few suggestions to try.

Good luck

Corin

[Caspiana]

Hello Dion3844o1 .

Goodness it all seems very overwhelming doesn't it? I think Corin1950 has given you some good tips. I wish I could say something profound that will make a difference, but I really can't. You must live the best life you can under the circumstances. Please know you are not alone. We know what the struggles are and how we always seem to hit a brick wall. At times, it doesn't seem worth it. We live with so many restrictions, we constantly worry about how much time we have left , rather than the fact that we still have time, long or short. And yet, although not easily, we are able to enjoy small graces.

Please if you can go see something beautiful, a garden, a field, or the face of someone you love. There is still reason to live and live well. Don't jump to any conclusions about how long you have left to live. Statistics are already against us. And doctors will never be too optimistic for fear of giving false hope. So who will advocate for us? The best answer is ourselves. We MUST. Don't jump to any conclusions about your life span because the simple truth is we simply don't know.

Sending hugs and love,

Cas xx 🙋🐕💕

[Ergendl]

Some great suggestions here, Dion. I also use a sterile saline nasal wash to clean my nostrils and sinuses at the end of the day and if I've been in contact with other snuffly people, and I gargle with Corsodyl daily antiseptic mouthwash whenever I feel there's a hit of an infections trying to catch hold in my throat.

All the best.

[RoadRunner44]

I wish I could give you words of comfort as you are feeling so low at the moment. I hope you have a good strong family and friends to help you over what must feel like a mountain to climb. I send my warm wishes to you and hope this dark period of your life will end soon.

Chrys

[Dion3844o1]

Thankyou all feel much better for reading your comments and I will definitely be taking your tips in board ,and my family are going through it also seeing me like this I definitely need to give them happy memories of us all now thankyou again x

[Maureenpearl]

Hi Dion,

I too have Mixed Connective Tissue Disease (lupus) with lung damage (Pulmonary Fibrosis). I was diagnosed in 2006 and 2013 started using oxygen.

Try not to panic, you can live a long and fruitful life. I still go on holidays abroad and recently went on a cruise to the Canaries. We sailed from Southampton so I didn't have to travel by aircraft first.

I have had lots of treatment and was hoping I could have a lung transplant but because I have awful gastric reflux I was told I wouldn't be a good candidate for this transplant.

Yes I do have and catch lots of infections but I don't let this stop me from having a good life. I still do all the things I did before I was diagnosed. I go out with my husband and friends for meals and I sometimes even do voluntary work. Helping those in need, such as those on the streets and young people out at night clubs.

Eating healthy is good and putting Tea Tree and Eucalyptus oil in your bath water is good and healing and open up your nasal passage. You could ask your consultant to check your blood to see what vitamins you are lacking and especially vitamin D. It is best to ask your consultant for medical advice. He or she won't mind and should able to direct you to the right person for the correct advice.

Please remember you're just going through a different phase of your life and any chronic condition is very easy to manage once the right medication is prescribed.

You could also join the lupus group on HealthUnlocked. for more advise from others with auto immune disease. We have to be careful about boosting our immune system, as this is not good.

Just remember I am praying for you and I pray also for wisdom for your consultant as to the best treatment for you. Praying for peace in the midst of this storm you're going through.

God bless

Lots of love and cyber hugs.

Maureen 🙏🏽