Are you sure you want to remove from your connections?
Forum Replies Created
So many people are getting into virtual workouts which is great! So many apps and websites are offering free memberships as well so it’s a great time to try and increase your stamina.
Here in the UK we have a fabulous chap called Joe Wicks who does daily 30 minute ‘PE classes’ for the kids, but it’s taken the nation by storm and everyone is doing it. What’s even better is that it is completely free!
Check out his YouTube here > https://www.youtube.com/channel/UCAxW1XT0iEJo0TYlRfn6rYQ
Lovely to see so much knitting and sewing. I wish I had some more supplies on hand so I could do the same!
I spent the first week completing a big jigsaw we bought from Massachusetts on holiday a few years back and then made my first ever Simnel Cake for the Easter holiday. I’m just about to crack out another 1000 piece jigsaw sitting in the cupboard and I’ve also been making more of an effort to read all those books sitting patiently waiting on my shelf. Would love any more book recommendations though!
I also have to keep up with study though so now I’ve organised myself a bit better I’ve done loads on my anatomy revision. I’m currently obsessed with everything about the heart and cardiovascular system. Fascinating stuff!
Hello everybody! Long time no see. Apologies it’s been a while since I logged in. Life has been very busy balancing work/study. Due to the current situation my student life has changed dramatically as I can’t go on placement in Hospitals, however I am working shifts in the Radiology department as an Assistant to help where I can. Very surreal and scary really.
I’m so pleased you’ve taken the time to slow down and allow everyone to check in with their mental health. It’s really important and I hope you are all staying safe and well at home. I can’t even begin to imagine the anxiety that some of you must be facing right now.
I love your ideas of the hearts too! For me, I’m okay. Some days are harder than others, but I try to slow down and remember how lucky and grateful I should be. I’m safe at home with my loved ones and we’ve made the most of the garden and the lovely weather. I just try to focus on the fact that a lot of this is out of my hands and I have to take each day as it comes. It’s hard to be so out of control but at a certain point you have to realise your hands are tied and you just have to go with the flow. I do my best to keep distracted and to stay in a routine as this always helps reduce the risk of my anxiety increasing.
Sending my love to all of you right now ❤️
Hello everyone! Apologies for my absence over the last few months, I don’t know where the time goes!
Popping in on this thread to see if anyone has any new recommendations for reading. I recently finished The Snowman by Jo Nesbo, the same author I’ve pretty much committed to all year round.
I have however also loved Unnatural Causes by Dr Richard Shepherd and I thought I’d mention This is Going to Hurt by Adam Kay which has just celebrated a whole year at the top of the book charts in the UK, it’s a really funny but poignant read of life as a Junior Doctor in the UK. He’s soon releasing a new book for Christmas time and we’re seeing him live around the release which I’m really looking forward to. I’ll post the books below on Amazon if anyone is interested, and I’d love to hear about your holiday reading!
Hello everyone! Thank you for raising such an important topic Mark, and something which I think really pins down the need for emotional and psychological support to those diagnosed with PF – something which is severely lacking and that truly saddens me.
I feel I may have mentioned this in my past posts, but I feel it is something I adopted through my teens in learning how to cope with my own mental health illnesses, before it became a bit of a game changer in how I helped my Dad cope with his health deteriorating. Not every day is the same. He was always so terrified that if one day his breathlessness or energy felt worse, that it was permanent and it was something I had to make him recognise that each day is different from the next. Like a healthy person wakes up and is some days in a naturally energetic fit good mood, there is no rhyme or reason that some days they wake up in a funk feeling out of sorts and not motivated. We have to have the bad days in order to be balanced out with the good days. If it was turning out to be a bad day, just like I did with my episodes of depression, I’d hermit myself in, do the self care things I love like reading or watching films or baking and then promise to myself that the next day we’d try again and all that boils down to what I did for him. Nothing is permanent.
Of course the bad days can feel endless which is why you need to have baby steps, just go for a little walk or even a drive out for a coffee, even through a drive thru. It’s so easy to get cabin fever, and it’s amazing what a little change of scenery can do for you. Find a quiet spot to enjoy the silence and think of all the things you can be grateful for.
I find it interesting about your thoughts on the fact that it is a grieving process when living with this disease because you might feel entirely focussed on all the things you’re losing because it far outweighs the positives of whatever (or if anything) you could be gaining. But I think it’s important not just for people with PF, but everybody, to find the happiness in the little things that make us happy because the negativity and unhappiness can drive us all to a state of disrepair that feels too heavy to be dragged out of.
Take a couple of minutes and think of three things that make you happy, or at least comfortable and content. It doesn’t have to be much, and this is something can change with the seasons or your mood. For example, on these hot summer days where I feel super uncomfortable and am wishing away the time to return to cooler months, I’ve found things that give me solace.
Finding a shady spot to read or write in, or even watch videos on my laptop
Painting my nails and giving myself a bit of a manicure
Doing a bit of cooking in the kitchen, experimenting with new recipes
These things genuinely give me that little bit of relief and joy when my mind sometimes struggles with the memory of the grief and sadness I feel in the loss of my Dad. You should not feel guilty for being sad or for being unhappy, or feeling empty and alone. We all get that way. But you need to remember there is a community all around that is living it with you, and is here to listen. I work in a job where I’ve seen many tragic events unfold in the blink of an eye, and along with the loss of my Dad, it’s given me a wake up call that life is always fragile and it is always out of our hands, so get back the little control you can and seek your happiness. Because you all deserve it so so much.
Anyone who likes memoirs/biographies then I recommend Stephen Westaby’s second book called The Knife’s Edge, I binged it in a couple of days. Really heartbreaking true cases of his time as a cardiac surgeon. If I haven’t mentioned it, his first book Fragile Lives was also a really good read. I also saw a new release which is memoirs from a transplant surgeon which I might pick up for my holidays in a few weeks as well as the new Samuel Bjork Nordic Crime thriller.
Hello Mark, thanks for sharing your story and also the important awareness you’re doing and that those around you are also going above and beyond to share your story in the hope of making the disease more known within the community.
At present the status of Pulmonary Fibrosis is of similar status in the UK. The current statistics we have for those diagnosed or living with PF is known to be vastly under representative and general awareness at a medical level, let alone in the general public is also much lower than many other types of illnesses. Before Dad was diagnosed we too had never heard of the disease, and our Consultant had only treated few patients with this illness so was actively learning himself through our journey. Anyone from Palliative Care or if Dad was admitted to the hospital would ignore the PF diagnosis and automatically treat him for COPD, which as you can understand isn’t always the correct response regarding symptom management.
Thankfully the British Lung Foundation have fought quite hard with the government to increase the amount of funding they receive to sponsor more research and a relatively new charity called Action for Pulmonary Fibrosis has come on leaps and bounds since it was founded about six years ago. They already have support groups all over the UK, a telephone support service and have funded a couple of research projects for genetic innovation as well as raising awareness within the respiratory nursing community.
I personally have only participated in few fundraising activities, nothing whilst my Dad was alive. We raised money at his funeral and did a cake sale where my Mum used to work, but personally I find the financial fundraising quite stressful and put a lot of pressure on myself so tend to avoid it and instead give back directly to the PF community by becoming a research and communicating directly with those affected.
Sharing your stories with local media is important if you want to get word out, using social media and encouraging an open conversation with those who come across and are interested. Attending big charity drives like the sponsored walks or encouraging fundraising and awareness activities within the workplace. The possibilities are endless really.
Personally speaking I am more akin at devoting a large portion of my working life to research and hopefully by getting and staying involved with the community this way as a support since Dad is no longer here anymore. I do find it exhausting and sometimes quite disheartening so I am careful at how much responsibility I put on my shoulders, has anyone else felt this when it comes to dealing with the lack of awareness?
Definitely fatigue and general tiredness is a major symptom of living with lung disease due to the restriction of oxygenated blood around your system, plus I agree with your notion on the mental health impact as depression and anxiety will give the same fatigue and tiredness that the low saturation levels will. That’s why I believe it’s so vital a persons psychological health is assessed and treated just as equally as the physical impact of symptoms.
I think it’s important to rest, and to also take into account that the medications in themselves will have side effects to make you feel out of whack. Sometimes the sheer thought of doing something will be enough to make you feel fatigued and tired. That’s why it’s really important for anyone’s psychological health, it’s important to try and do a bit of gentle exercise each day as it helps encourage better moods. Of course the foods you’re eating will impact your energy levels, and ensuring you’re well hydrated as well. There are so many threads to dealing with fatigue that it can be exhausting in itself to figure it out.
At the end of the day I think it’s important to put yourself first, don’t put too much pressure on yourself and lower your expectations of what you can achieve. I know it’s difficult, and heart-breaking to face your mobility declining, but by accepting and giving yourself reasonable challenges, it will be far easier for you to bite off these little chunks and increase your stamina bit by bit and tackle the fatigue you face. Likewise, it’s vital to accept the days when you are facing spectacularly low energy levels and instead to find other ways to challenge yourself that requires less effort such as reading, puzzles, painting or crafting.
It’s nice to hear from you all though because obviously I only have the point of view as someone as a Carer. It will help greatly to understand the psychological toll it can have when facing fatigue and general tiredness.
It’s interesting to hear your thoughts on this as I never really assessed Dads heart. He did lose a rapid and significant amount of weight in a short period of time due to pneumonia, and though he did regain muscle strength back, he never really recovered any weight despite bumping his calorie intake up. They did assess his heart quite heavily during the transplant assessment and everything came back positive which was a shock as has been mentioned, a lack of oxygen can put quite a strain on the heart muscle and lead to complications outside of PF. Even in his final days his heart was beating strongly so despite having had a heart valve replacement about ten years prior, his heart managed to support him well despite his lungs. I would say that if you have any concerns then chat with your Doctor and perhaps assess your resting pulse rate regularly just to see if there are any changes over time. Thanks again to all for sharing your knowledge, this has been really interesting to view the overall perspective of how the damaged lungs can put strain on other areas of the body.
It would be hard for me to sum this up as I feel we could all write quite a list of the things that are the biggest struggles, and our opinions can probably change day by day. For me though, I think it sums up into the fact that there is such a lack of awareness which means the research and funding opportunities are far fewer, diagnoses takes a lot longer (which is vital time to slow the onset), the lack of knowledge around it being a terminal and progressive disease that should be accepted the same as other terminal diseases such as cancer, medications being unavailable to many due to funding or financial reasons, and a lack of drive for when people are diagnosed to get the correct support. Over in the UK we have the NICE clinical guidelines which advise what should happen to a patient or dealing with illness and disease. When diagnosed with an ILD the person is supposed to be offered pulmonary rehab, they should be assessed for transplant and continuously monitored, medications can be prescribed within certain parameters etc. Unfortunately, it is common knowledge that this happens to so few patients as the systems in place can’t support the masses of those being diagnosed, or Doctor’s are unaware of how to effectively treat and help someone. It’s saddening but also frightening that in all these years nothing much has changed and a lot of promises are falling through quite quickly. To me if there was more awareness in the UK of just how many people it directly affects, it would drive more people to back funding and research as well as to hold people accountable for providing the correct treatment. This isn’t just for PF but all lung diseases with the exception of lung cancer and COPD.
Wow Charlene, that is so lovely that someone came to the rescue to ease your anxieties. I agree wholeheartedly with you that as individuals it can be so easy to become self involved because of all the angst and hate around us, it’s so easy to get hurt in this cruel world that we forget to show simple acts of kindness, or people are judgemental when you do try to show kindness. I always as a rule ever since my Dads illness try to be patient with people, and try to put myself in their shoes. I work in Healthcare so I always come across complex issues with patients, and working in Radiology we don’t get a full picture of what’s going on or what has been happening as it’s not necessary to what we do. That being said, I do try to be considerate and think of others as sometimes people I work with can be unnecessarily cruel in their words instead of thinking of the bigger picture of what a patient is going through or other medical conditions they may have that affects their behaviour.
There is one thing I love that has been shared a lot, and that is people leaving positive messages in random places for people to pick up or books being left for others to take away and read. I always find myself reading articles about the kindness in people as it helps give a smile when you can easily become so cynical. If I had more spare time I would love to help older people combat loneliness as it always breaks my heart coming across people at work that are isolated in their community. My Grandparents died when I was fairly young so I feel I missed out in that vein, so it would be nice to give back. My brothers partner visits an elderly chap a couple of times a month as part of a charity outreach, they just sit and have a cup of tea and have a chat and it’s been lovely hearing about how that has positively affected them.
Oh wow thanks for letting me know that RJ ( @rjday ) I wasn’t aware that she had since remarried. Such a heartbreaking tale, I’m so glad she found new happiness. Her ending to the book was so moving and brought me to tears. I’ve recently started reading a book by Sue Black who works in forensic anthropology that’s a really interesting (and quite brutal) look at death. I’ve heard her be interviewed before and she’s fascinating. A book called Grief Works by Julia Samuel and A Manual for Heartache by Cathy Rentzenbrink are both good reads for anyone interested in dealing with the grief/bereavement types of subjects. The latter book in particular was of significant help to me in my early months of dealing with the death of my beloved Dad.
As for your second comment, have you seen if there are any support groups local to you? These were of extreme benefit to me to make you feel less lonely and also being able to talk about things associated with PF that not many people know about.
Oh my goodness I read When Breath Becomes Air a few years back and it broke my heart, Paul Kalanithi wrote so elegantly and eloquently. Such a sad loss.
I believe it was this one, How Death Becomes Life that I saw on the bookshelf at Waterstones. I resisted the urge but I might buy it from the airport on my travels in a couple of weeks. https://www.amazon.co.uk/How-Death-Becomes-Life-Transplant/dp/1786498863/ref=sr_1_1?keywords=transplant+surgeon&qid=1558413877&s=gateway&sr=8-1
I used to love reading books about self healing as a teenager, and especially now self care and mindfulness is popular in the mainstream it’s nice to learn more. If you like the Scientific/Psychology then I really recommend Ruby Wax and her books about mindfulness and mental health, they’re really insightful at understanding the scientific background of our mental health. I also loved a book all about the practice of Hygge which has enabled me to be more proactive in seeking mindfulness and happy moments.
Wow Peter, what a small world! Great news that you had these scans as part of your diagnosis. Have you had any follow up MRI or CT scans alongside the FVC breath tests or was that solely to enable a diagnosis in your early symptoms? How have you found the support at Sheffield? My Father was initially referred there but found some of the Consultants quite cold regarding the route of possible transplantation so stuck with the Chesterfield team who took care of him well considering their inexperience at dealing with PF patients.
Thank you for your response Mark, and your kind words. I nearly cheered thin air reading that there are alternatives to FVC tests as they were awful for my Dad, and I never truly trusted how accurate the results would be. I’ll keep you posted, I’m hoping to gain some work experience in this area whilst I’m studying.
As much as I want to think I’ll be someone who will adapt to e-reading, I just can’t but love the feel of advancing through a book! And I don’t really want to invest in something I might not use, but I’ll see if Amazon have any deals. It will always come in handy when I’m travelling.
How about audiobooks? A friend of mine swears by them when he’s driving but I don’t think I’d be able to concentrate enough, that being said though I do swear by podcasts which I guess is similar in the factual department.
Hello Chuck! Nice to hear of another avid reader. My Mum has an iPad actually so I might have a looksee at the Kindle app for now instead of investing in a proper e-reader. They turned the J.K. Rowling/Robert Galbraith series into a television show in the UK I believe, quite Sherlock style from what I remember and fairly interesting. Another one where I keep meaning to read the books.
I will check out the Louise Penny novels you suggested as I always need new recommendations for crime novels!
Thanks for sharing that news Lorraine, it’s encouraging to hear that governments and politicians are becoming more open minded to these important matters that play such a big role in so many peoples lives. Ultimately I hope it gives the people the right support should they have to face this kind of issue. And of course, hopefully open a conversation about encouraging a good death for people, especially those facing progressive illnesses.
The telephone helpline would be really useful. The British Lung Foundation and Action for Pulmonary Fibrosis in the UK both have active telephone services which have proved to be a great success in helping people find out more our their disease as well as to generally have someone to talk to. That’s why if it’s possible, attending support groups would be of great benefit to have that one to one talk with someone who might be dealing with a similar circumstance as you. Do the bigger charities such as American Lung Association have telephone services to call for advice or counselling?
Hello Wendy, sending my love and thoughts to you. Losing mobility and independent is such a heart breaking and frustrating symptom of dealing with lung disease. Like Mark said, are you using supplemental oxygen at all? That can help immensely at providing oxygen and support to remaining active. Have you also had the opportunity to attend Pulmonary Rehabilitation classes or meet with Physiotherapists? They can help with gentle exercises that will gradually improve your stamina and learn how to cope with the breathlessness whilst exercising. It was instrumental in helping my Dad get back on his feet after his first devastating blow of pneumonia. He too was active and enjoyed walking the dog with me, it was heart-breaking for him that it was such a struggle to do this so we adapted in finding new routes and walks that he would be able to manage so he could join. Truth be told, walking the dog can still fill me with tremendous grief as it was an important time for me and Dad to chat and spend time together.
oO if they have any sense then they wouldn’t hesitate at a trip to Hawaii! I have spoken to people in the past who managed Hawaii on quite a tight budget because they were doing extensive travelling at the time, but like you say, a little research will help you figure it out! I had no idea until my parents went how far away it was from the West Coast of the USA, it’s my small minded in travelling brain as everything in the UK is just a couple of hours away. They absolutely loved it though and found it a lovely relaxing break, I’m sure you’ll have a whale of a time and there is no feeling better than the sand in your toes and the sea salt in your hair!
I knew I had one by Jodi Picoult in my collection somewhere but I might have donated it into charity recently as I had a massive clear out in my bookshelves. I will definitely check at the library as I’ve seen her books in there many times, definitely need a new author to read as I always get myself into a rut obsessively reading the same one!