Living with IPF has affected Sylvia’s mental wellbeing, particularly during lockdown. In her own words, she discusses how the support of her family, getting outside and pulmonary rehab has been a turning point for her and how she makes every day count.
" I had my first scan in December 2016 and was referred to Glenfield by Northampton in February. My husband Pete and daughter Sarah came with me; we were left numb. It was very difficult to talk about how we all felt.
The consultant I saw was really positive, but it was a lot to take in. I was a bit panicked and hardly slept for weeks, I could only focus on what I couldn’t do and what I wouldn’t achieve. I am sure that was difficult for others to live with.
A turning point was being told I needed to lose weight to help keep well (which I have) and to get on a pulmonary rehabilitation course, which although not designed for IPF would benefit me. The RESTART team in Northampton were brilliant got me getting outdoors walking again and focusing more on what I could do and it was ok to be out of breath. They helped me to completely lift my mood and gave me a huge amount of support.
I was coping well, until the first lockdown set in. Not seeing my daughter, son, and especially my grandchildren has been painful. FaceTime has been such a bonus. Not being able to go out at all was awful but necessary, although I have been going out for a walk with Pete and the dog for about a month now as I was feeling very down. That has made a big difference to my mental health.
My daughter Sarah has been a rock during lockdown for us. She did a shop for us every week and delivered it to us even though she has a husband and three children herself. Any bits and pieces were supplied by our local corner shop when we needed them but I really wanted to do my own shopping and not rely on other people. I got really cross and very down when I (and many other people) had fallen through the system, by not being recognised as vulnerable at the start of lockdown. It took seven weeks to get my letter.
We get a huge amount of support and ever available information on Idiopathic Pulmonary Fibrosis from the Northamptonshire IPF Support Group which was set up and organised by Penny Tremayne who is always available if you need to talk or advice. We get great speakers and we now have a Facebook page and a WhatsApp group so can communicate with one another and get tips and advice on people who are going through the same as yourself.
Fatigue and coughing are my main problem and I really get worn out some days. Talking with friends and family during lockdown have been a blessing but talking for too long is difficult as it makes me cough so much. Simple tasks are more difficult now as it takes forever to do anything without resting in between and I get very frustrated. Pete is great but he can’t do everything so I have to leave things that I could do in a flash and be a lot more tolerant of myself.
Currently I am waiting to have a CT scan, and I am desperate to find out if my lungs have changed much from my original scan. I feel that everything is significantly worse but that could be in my head - I just don’t know but if it hasn’t then I need to get on with it and make every day count. If it has gone down then maybe I might be able to go on a trial or anti fibrotic drugs which might help.
I do know that I am so lucky to have such a supportive family. Pete is a tower of strength all day every day and my daughter Sarah has been amazing. Videoing every day with her family and getting us treats and giving us laughs through this madness. My son has FaceTime almost every day without fail but I am looking forward to seeing him and his family and giving everyone a hug.
This time in lockdown I am treating myself as shielding. I will be able to go out with Pete and our dog Gus when I am able to. I have more bad days but will continue to make every day count and that way there will be no regrets. I have much to be thankful for."
You can listen to Sylvia discussing her PF Journey with Psychologist Honey, where she talks about more about exercise, making preparations and staying mindful: