Last week a post on the SarcoidosisUK Facebook Group received a lot of interest and attention:
“Thought it might be good if everyone suggests a positive tip or suggestion for others on their sarcoid journey: what has helped you, any advice or things to make our lives easier? Thanks for any ideas, hope you have a good day x”
There have been nearly 60 comments in reply to the post! As you can imagine there are some inspirational ideas and terrific tips…
A selection of the best comments are below, along with the initials of the group member. Sorry we couldn’t include them all – there just isn’t space!
WH: Take it steady and rest when you need to, pushing yourself just makes the fatigue worse and last longer.
JW: Be your own advocate. Research as much as you can and don’t be afraid to ask questions of your consultants and set expectations
EFL: Always reach out to someone who is expert by experience! Family, friends, professionals can never really walk in our shoes no matter how empathetic they are. Coming together under the SarcoidosisUK umbrella is our best possible way to empower ourselves.
NG: Do things that make you happy. Yoga , swimming , walking. If you can, when you can! Dump the people that don’t give you time, that goes for family as well.
LC: Do what you can when you can and don’t ever apologise for not being able to do what you can’t.
NHH: Call in as many favours from friends and family, never feel guilty for asking what you deserve. Remember you are still a productive person, even if under a different set of limitations. Don’t beat yourself up, the illness will do that for you so be kind to yourself and curb unrealistic expectations of what you can do. Breathe and be grateful for the little victories.
AW: Don’t be afraid to say “no I can’t do that”. It’s not you failing at something, it’s you listening to what your body needs and doing what is best for you. That’s pretty strong I’d say and means your spoons stay where they’re needed!
AW: I think the hardest part is acceptance. Accepting the new you and your new limitations. Once you accept that you can plan around it instead of keep trying to do too much and getting frustrated each time you can’t. I’m not sure newly diagnosed people are ready for this advice though. For me I had to wait until I was ready to accept it. People telling me to before I was ready just used to frustrate me more!!!
GS: SMILE. There is always something to smile about, even on the worst days. I keep a daily journal of ‘good things’.
AL: Learn! Do lots do and lots of research and have confidence when talking to healthcare professionals (you will most probably know more than them). On the flip side of that, have the confidence to ask questions, write them down and take them or a trusted friend to your appointments, as you may well miss an important piece of information.
JP: Make sure you have a supportive GP on your team to help you make sense of the disparate elements of your care and provide a sounding board if you ever feel unsure or overwhelmed.
GR: Nap whenever you can, even a few hours in the afternoon can help so much. I struggled sleeping at night for over a year. Through keeping a diary I picked up on flares coming when I’d had the least sleep. I had a lot less bad days after realising that sleep isn’t just a night time thing for us with Sarc.
MM: Appreciate every good day you have as a gift. There are so many down days with sarc that life is never again taken for granted.
HCB: On diagnosis accept and understand it. Learning to cope with and manage your condition in the best way possible. Important to pace yourself throughout the day, using any means possible to help you, I tend to listen to my music, singing and dancing as I do my chores to help me forget how tired I am. Never ever give up, never lose hope, life is so precious and we can create so many happy memories with our family and friends.
GM: Find people who you can laugh and cry with. People you can be honest with when you feel low or feel like you are having a good day. It’s OK not to be strong every day. You are loved.
MM: Outsource as much of the energy draining stuff as you can. Order your weekly shop online and have it delivered, get a cleaner if you can afford it. If you can’t then accept a little mess rather than run yourself ragged. Ask for help with putting washing on or hoovering. Save your energy for the really important stuff like work (if possible) and family and friends.
SM: The easiest way to deal with it from my own point of view is NOT to take on other peoples’ experiences of the disease. Everyone is different. Your problems will not be my problems, in the same way my way of dealing with issues will not be your way. Unless something is bothering you, DON’T look it up!!! That way lies madness. We can all help you if you have worries, honestly, but please don’t go frightening yourself unnecessarily.
HR: It’s ok to cry, it’s ok for family and friends too. It’s ok to be scared and worried. This disease is hard to accept so allow yourself a few days to get your head around it and then be more positive, plan things you enjoy doing, take up something new within your limitations. My best tip is for when you get hot and flustered with the sweats (and menopause to all those ladies my age group) make lots of ice cubes, put in a glass bowl. Place it directly in front of the blades of a fan and enjoy some well earned relief. Enjoy.
LH: Sort out what you need to do to manage your condition and then do it, wherever, whenever. Balance physical activity and mental challenge. Alternate them. Get plenty of rest. Practice problem solving approaches to difficulties and barriers.
LH: I always make a date in my daily day to have a lovely hot bubble bath for an hour at 7pm, this is my time with a good book, the steam is good for the lungs too x
RY: Take one day at a time. Be good to yourself (as you might be the only one that does). Try stay positive & look for something each day that makes you smile. Be thankful for small mercies, loved ones & people who care. X
You can join the SarcoidosisUK Facebook Group here for lots more information and support from our wonderful members.
Note: Some comments have been shortened and edited.