Mental help needed

[Gilea]

I have a floppy trachea(Dynamic collapse of the airway on breathing out, Tracheomalacia) plus COPD an old TB and COVID scars. I also have Long Covid and 3 months ago broke my femur. I keep getting depressed about the future. I know there are people with worse situations but the pain just goes on and on.

[sassy59]

Hi Gilea, pain can be very debilitating and depressing. I feel for you as I’m carer for hubby Pete who has tracheamalachia as well as COPD and severe chronic back problems. Doctors just say nothing can be done but the pain can be intolerable. Can you speak to a doctor about any of your problems? Not easy l know.

You do have a future but hopefully one without so much pain. Xxx❤️

[Gilea in reply to sassy59]

I have to ask does he have sleep Apnoea as they say the machines opens out the trachea. I was the first one they fully diagnosed fully at the Royal Brompton Hospital London.Where was your husband diagnosed and are there more people like us out there. The pain as you said is so depressing.

[sassy59 in reply to Gilea]

No sleep apnoea thank goodness and Pete was diagnosed at the RBH too. He’s not as bad as some though thank goodness but I’m sure there are others out there. Pete made his back worse by falling backwards downstairs last October. He was manouvering the carpet cleaner down and lost his balance. X

[Gilea in reply to sassy59]

Thank you for your reply. Did they do the lavage test and when did they diagnose the condition. They did a lavage (washed my right lung) 100ml in 30ml out plus they found live Covid at the bottom of my lung i.e. in the wash. They diagnosed me in November 2022.

My walking due to the fracture of my femur where they put a metal rod the whole length, that makes the pain worse as I can feel it.

Sorry about his fall, how long did they keep him in hospital.

Bye the way I live in South Somerset. I get to London by train and bus using my wonderful mobility scooter.

[sassy59 in reply to Gilea]

I honestly can’t remember how or when Pete was diagnosed as it was such a long time ago. I do know he can’t have anything put down his throat as when that was last tried his lung partially collapsed.

Sorry to hear about your leg. That sounds awful.

Pete was kept in hospital for four days but hadn’t received much help since.

Somerset is lovely and I’m pleased you can get to London. Pete finds his mobility scooter invaluable.

[Oshgosh in reply to sassy59]

We were struggling to get our vacuum up and down stairs.

So,after my husband nearly fell with it,we bought another one,so no more struggle .it has made life a lot easier.x

[sassy59 in reply to Oshgosh]

We have a lighter weight vacuum upstairs and downstairs now and it’s much better Oshgosh. Thank you for replying. Xxx

[Oshgosh in reply to sassy59]

I can’t believe what a difference such a small change has made.life is a lot safer now

[Patk1]

Try to get in mindset of taking 1 day at a time.sounds like Yr being v hard on yrself.if u need help with pain relief for recent fracture,do ring Yr dr.have u been seen by respiratory physio for breathing technique for tbm? If not,read up on aluk website at controlled pursed lips breathing.it does work

[Gilea in reply to Patk1]

What respiratory physio, all I have been told is to is my CPAP machine by RBH. Yes I taught myself to do the breathing technique, plus I have ambulatory oxygen machine.

COVID damaged my heart but since then more damage has been done due to having a right hip operation in January was in hospital for 5 days. Then in May - July smashed femur.

[Izb1]

Hi Gilea, give the helpline a call, I am sure they will be able to point you in the right direction, it can't be easy coping with your problems x Helpline. 0300 222 5800

[Gilea in reply to Izb1]

Thank you for the tel no, any help is better than none.

[AsthmaandLung Administrator in reply to Gilea]

Hi Gilea, I am so sorry to read about everything you are going through.

We have a Specialist Respiratory Physio in our Clinical Team at ALUK, If you give us a call on the number Izb1 has provided we can see where she is with her diary with a view to booking you in for a chat over the telephone. We are here 9.15-5pm Mon- Frid

asthmaandlung.org.uk/about-...

Take care

Helpline Team

[Alberta56]

I'm sorry you're in this bad place. I hope the advice you are getting will bring some relief. Sending you very best wishes and hopes for a less painful future. xxx

[Patk1]

Take a look online at Every Mind Matters - they offer lots of help with mental health

[risabel59]

I have EDAC and complex asthma. I had chronic lower back pain from an accident, I tried everything, nothing worked. I managed eventually to resolve it through a different physio approach. I got very lucky with a recommendation from one physio to another a specialist physio who uses the approach talked about in the podcast and was trained by Prof. O'Sullivan.

I would recommend having a listen to this podcast, It is Dr Rangan Chattergee's podcast "Feel Better, Live more" #472 "how to break free from chronic pain and reclaim your life with professor Peter O'Sullivan"

It took 18 months to get rid of the pain, but now have been virtually pain free (and pain drug free) for 3 years, and have a tool box of things to do if the pain starts coming back.

Cheers

R

[Karenanne61]

I too have chronic pain. (Severe copd and bronchiectasis too) I was referred, by a physio, to a pain management course. It was twice a week for 4 weeks at my local hospital. It was facilitated by a physio and psychologist. We had gentle excercises, talks and workshops and learnt many coping strategies. I also found the talks about the mechanics of pain very interesting. Perhaps speak to your gp surgery? I've also had talking therapy for anxiety and depression and that worked well too. Good luck.