Philippa 44 (Diagnosed at 39)
Please finish the following sentence: "Sjögren's has taught me...":
To learn to listen to my body and accept that to be a functioning Mum, wife, Logistics Manager, friend, colleague etc! I must find the time everyday to practice my little routines which are only for me and they keep me going. Before Sjögren's I didn't have a glass ceiling above my head, now I do, I can't fight it, Sjögren's has taught me to accept it, to find other ways, to think differently and to have compassion for myself.
What are your most difficult symptoms?:
Dry eyes, poor stamina, crushing fatigue, difficulty switching between english and french (I live in France) when I'm tired, exagerated stress response, ,digestive problems, joint and muscle pain, tired brain fog, an inability to retain information I write everything down, poor proprioception, 3pm sore throat, fragile sleep.
How has Sjögren's impacted your life (either physically, emotionally, financially)?:
I used to be this whole other person, I was a very competitive show-jumper and rower and now I have lost that high level of fitness I had, that has been difficult to take on board, I'm this whole other person that I didn't know was there. Sjögren's made me face a much needed emotional clear out, I'm grateful for that but the journey was very painful. I had to quit a career in real estate that I adored mostly due to fatigue and not being able to manage the financial stress of being self employed and now I work as a Logistic Manager for a French toothpaste company, talking in french all day can be a challenge when I'm tired but I changed careers and now the decrease in financial/time management stress has had a positive effect on me and my family.
How do you effectively cope with the complexity of symptoms?:
I didn't understand or want to understand before that I can't burn the candle at both ends, I didn't want to recognise the glass ceiling above my head, I wanted to shatter it and be my old self. Now I know that if I push too hard or do one thing too much I will start to have symptoms. So I try to eek out the little battery I wake up with, out all day. For my dry eyes I have punctual plugs which have been a revelation and I use drops every 15 or 30 minutes depending on the level of irritation, for the other symptoms I try to eat well and not let myself get to the stage where I need to cope with symptoms, but that is a fine job of self discipline and sometimes life just gets in the way!
What do you wish people knew about your Sjögren’s?:
Every morning I wake up with my internal battery charged to 1/4 of its charge, I have to eke that through a whole working day which means I now have to make careful choices of how I use this energy. I'm a yes person but Sjögren's has taught me sometimes I have to say No, I have to respect the limits I have on my energy reserves, if not I can topple into a flare-up which will put me out of action for months.
How do you incorporate self-care with managing Sjögren's?:
When I wake up I do a quick yoga routine and the Wim Hof breathing routine. This helps me loosen up for the day and be centered and in my body and not be stressed. I take turmeric to help lower inflammation as well as avoiding gluten and lactose which give me digestive problems. Eating correctly is really crucial self care, as too is good sleep hygiene. I try to walk in nature as much as possible and I love walking through the woods with the children and the dog, it's excellent at destressing. I incorporate cold showers into the end of my day to help lower inflammation and stress and increase sleep quality. I find that if I don't have a self-care programme in place, like before I accepted Sjögren's, I can not function and can get stuck in flare ups for long period of time. Self care is a crucial part, and trying different things and being curious about trying new methods is an important part of self care.
What is your go-to Sjögren's product?:
Eye drops! Optive and Vismed Gel are my go tos, for my mobility Curcuma powder, ginger and physillium husk and melatonin for my sleep!
What’s your best Sjögren’s tip?:
Don't be afraid to try new approaches and to read lots of information, being well informed is key. Put aside time to take care of yourself, if you can't do that you can't be there for those around you.
Philippa 44 (Diagnosed at 39)
Please finish the following sentence: "Sjögren's has taught me...":
To learn to listen to my body and accept that to be a functioning Mum, wife, Logistics Manager, friend, colleague etc! I must find the time everyday to practice my little routines which are only for me and they keep me going. Before Sjögren's I didn't have a glass ceiling above my head, now I do, I can't fight it, Sjögren's has taught me to accept it, to find other ways, to think differently and to have compassion for myself.
What are your most difficult symptoms?:
Dry eyes, poor stamina, crushing fatigue, difficulty switching between english and french (I live in France) when I'm tired, exagerated stress response, ,digestive problems, joint and muscle pain, tired brain fog, an inability to retain information I write everything down, poor proprioception, 3pm sore throat, fragile sleep.
How has Sjögren's impacted your life (either physically, emotionally, financially)?:
I used to be this whole other person, I was a very competitive show-jumper and rower and now I have lost that high level of fitness I had, that has been difficult to take on board, I'm this whole other person that I didn't know was there. Sjögren's made me face a much needed emotional clear out, I'm grateful for that but the journey was very painful. I had to quit a career in real estate that I adored mostly due to fatigue and not being able to manage the financial stress of being self employed and now I work as a Logistic Manager for a French toothpaste company, talking in french all day can be a challenge when I'm tired but I changed careers and now the decrease in financial/time management stress has had a positive effect on me and my family.
How do you effectively cope with the complexity of symptoms?:
I didn't understand or want to understand before that I can't burn the candle at both ends, I didn't want to recognise the glass ceiling above my head, I wanted to shatter it and be my old self. Now I know that if I push too hard or do one thing too much I will start to have symptoms. So I try to eek out the little battery I wake up with, out all day. For my dry eyes I have punctual plugs which have been a revelation and I use drops every 15 or 30 minutes depending on the level of irritation, for the other symptoms I try to eat well and not let myself get to the stage where I need to cope with symptoms, but that is a fine job of self discipline and sometimes life just gets in the way!
What do you wish people knew about your Sjögren’s?:
Every morning I wake up with my internal battery charged to 1/4 of its charge, I have to eke that through a whole working day which means I now have to make careful choices of how I use this energy. I'm a yes person but Sjögren's has taught me sometimes I have to say No, I have to respect the limits I have on my energy reserves, if not I can topple into a flare-up which will put me out of action for months.
How do you incorporate self-care with managing Sjögren's?:
When I wake up I do a quick yoga routine and the Wim Hof breathing routine. This helps me loosen up for the day and be centered and in my body and not be stressed. I take turmeric to help lower inflammation as well as avoiding gluten and lactose which give me digestive problems. Eating correctly is really crucial self care, as too is good sleep hygiene. I try to walk in nature as much as possible and I love walking through the woods with the children and the dog, it's excellent at destressing. I incorporate cold showers into the end of my day to help lower inflammation and stress and increase sleep quality. I find that if I don't have a self-care programme in place, like before I accepted Sjögren's, I can not function and can get stuck in flare ups for long period of time. Self care is a crucial part, and trying different things and being curious about trying new methods is an important part of self care.
What is your go-to Sjögren's product?:
Eye drops! Optive and Vismed Gel are my go tos, for my mobility Curcuma powder, ginger and physillium husk and melatonin for my sleep!
What’s your best Sjögren’s tip?:
Don't be afraid to try new approaches and to read lots of information, being well informed is key. Put aside time to take care of yourself, if you can't do that you can't be there for those around you.