What really goes on behind the camera.
Today I wanted to share an awareness post for chronic illness because life as it appears or seems on social media is not always the way life really is behind the camera.
I’ll begin by saying the sophia dress in the photos was gifted from Roco clothing and although this post is not about the dress, I do wish to be transparent about that!
So this week I was told I am a fabulous Mother. I was told that I give my daughter so many opportunities and whilst this is true, it’s also a difficult pill to swallow because I often feel the sting of “not being able to do more”. I usually feel frustrated on a daily basis due to the limitations my chronic illness puts on my body.
A Chronically Ill Mother
My life as a Mother is not at all what I had hoped for. Whilst I do love being a mum and spending time with my daughter the reality is our time is most often spent in a bedroom, sitting on a bed or sitting in the lounge. We do not go out together often. It is a rare thing, sometimes it may be only once or twice a month. That is the reality.
I spend most of my time at home, in bed resting, blogging from my computer and doing little things in the home as I am able. I usually leave the home once a week for an appointment. This may be to see a doctor or GP or one of my specialists at the hospital.
I do like to go shopping and I aim to visit the supermarket at least once a month. I enjoy supermarket shopping and choosing my own foods. However more often than not my husband does the groceries and I just write a list.
Sometimes I walk and get dizzy which is why I love to push the trolley and lean on it. Other times I will ride on a scooter to make sure I can get around the store without needing to go and sit down at the checkouts.
Bedbound – Following Every Outing
I was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia about a year after I collapsed with Adrenal Insufficiency. I had always struggled with tiredness and pain after physical exertion however I really am not sure whether this is an “escape goat” diagnosis.
I don’t know if I have all three conditions, ME, Fibromyalgia and Adrenal Insufficiency or if my AI causes symptoms similar to the others. What I do know is that when I leave the home to attend an event, to watch my daughter’s school play or go to her sports day, it will take a day or two to recover.
In fact, I missed Sylvia’s sports day 3 years in a row and only managed to attend this year after forcing myself. It was Sylvias last year of primary school and I did not want to miss it. The same goes for her year six play. I was so unwell. In fact, I went to the bathroom and threw up before the play, leaned on my husband during the show to hold my body up and then crashed out afterwards for two days.
That’s another thing that’s hidden behind the camera, the days it takes to recover from a photo!
The reality is I can leave the home and force myself to attend events and places but I will pay the price during and afterwards. The question I ask myself is “Is this worth the pain and suffering afterwards?”. When it comes to my daughter and not missing out on special moments it sometimes is worth it!
Quality Time With My Child
Although Sylvia and I do spend time together and these moments are shown on facebook or instagram, there are many more moments where I tell my daughter, “No, go and play, I’m too unwell”, or I say, “Mummy feels sick and you need to find something to do by yourself”.
I’ll say, “Im going to bed early tonight. Dad will sort tea and do bedtime, I’m just too unwell”. It’s the moments like these that I hate with a passion but they are what they are and it is what it is!
Sylvia is a strong child and has developed strategies to “spend time on her own” and go out to play or keep herself busy when I am too unwell. However this does not stop me feeling the mum guilt. That is always going to be there.
Going To The Sand Dunes
And so I get to the story of visiting the sand dunes. I left the home for the first time since Sylvia’s school play because we were visiting a restaurant for a blog collaboration. This was super important for our blog and an opportunity for Sylvia to earn some money so we really wanted to go.
However, we had to travel to Liverpool and so we decided to stop at Formby Point, a beautiful beach full of sand dunes. The weather was boiling and the day was beautiful. We arrived at the national trust entrance and paid the £7.50 fee to enter.
There were lots of people visiting the beach, walking down from the entrance to the entrance of the sand dunes. I would have loved to have made the walk with the family like everyone else but it was not possible. Instead we drove to the disability parking area right near the beach entrance.
Sylvia slipped on her new dress – so daddy could take some photos and we walked up the sand dunes. We walked 50 meters and I had to stop a number of times.
The Top Of The Sand Dunes
Once we reached the top of the dune, I was shattered. Only 5o meters but it was too much for me. I sat down and told my family, it was not possible to go any further. I could not walk down to the beach. It was not possible for me. Instead Sylvia sat on my knee and we had a lovely photo. I was actually wearing makeup for the first time this month and it made one nice picture.
I sat on the sand dune as I watched my daughter and husband walk down to the beach. I sat there for 40 minutes, watching my family from a long distance. I felt sad that I could not join in. I could not walk to the waterfront and step my toes into the water with Sylvia. I couldn’t sit down with the family for a picnic or run on the sand and play sports.
Being at the beach was tough because it showed me the things I could not do. At the same time I was happy my child was on the sand enjoying herself. It was quite bitter sweet. We got some lovely photos to share on social media and some fab pictures but what really happens behind the camera is often not what the audience sees.
After fourty minutes my husband and daughter returned. We made our way back to the car and went to the restaurant to complete our collaboration. We then returned home and I was so pleased to change back into my comfy pyjamas and hop back into bed. I was in a lot of pain and felt shattered. I fell asleep and woke up the next day.
My Reality With Chronic Illness
So when I share photos of myself and my daughter at the beach, it may appear we went to the beach for the day. The reality is we did not. I could not even make it to the beach and I sat in a pile of sand on a dune whilst my family went to take some photos.
It may appear that we had the best time and we actually did have a nice time but it was not a family trip to the beach as one might assume. My life is always going to be different.
It may appear that I was too unwell to go to church yesterday, yet I went to the beach and a restaurant the next day. Well that’s not the reality. I was incredibly sick on Sunday and as much as I wanted to go out for myself, I needed to stay home and rest.
We travelled to Liverpool on Monday to earn a living, to do a job that will help pay our bills and medication. We did not spend a day at the beach, I did not even make it to the beach, but no one will ever know that given the wonderful photos we took. And no one will see me in bed for the next three days recovering from the afternoon which we had.
The good thing is my daughter had a fantastic time and whilst a lot of the hopes and dreams I have for myself or had for myself have gone by the wayside, I can still have hopes and dreams for Sylvia.
I will continue to put my efforts into my daughter’s life and doing my best to give her the best childhood I can despite this chronic illness…we will work around it and and that is my reality.