Today I have a thought provoking guest post from the very lovely Angela from Daysinbed.com. Angela blogs – as the name suggests – often from her bed, while she lives with a chronic illness. I highly recommend you stop by her blog, she has also amazingly this week won the Award for best Voice in the Mumpreneur UK 2015 awards.
Watching the Seasons Go By
In 2013 I was diagnosed with an illness called adrenal insufficiency. Being chronically unwell is no easy task. Your whole world as you know it is gone. What was once normal, is now a memory of an old life and I’m left to pick up the shattered pieces of my broken world and build something new and different, to find a way to live and make the most of life with chronic illness.
It’s been 28 months now and I’m still struggling to get used to being a chronically unwell mother. We’ve found ways to adapt. I’ve got a schedule which allows me to rest enough, so that when my daughter is home from school we can spend quality time together.
I’m fighting to get the best treatment I can so that my condition can be better managed. The reality is this could take years, and whilst I wait for the best treatment options I need to find a way to live each day with my life threatening condition.
One of the things that has changed since becoming ill is the amount of time I spend outside. I hardly leave the home. Doctors appointments and small excursions make my health worse. Sometimes they are a necessity, other times I force myself out to experience a school play or attend events like parent’s evening. I simply can’t stay indoors all the time. I’d rather go out when I can and suffer the consequences, than not go out at all.
The one thing however which has changed is my experience of the seasons. Before illness I had a normal experience of weather. I’d walk into town in the bustling wind, see the fallen autumn leaves and take my child to the park.
My daughter and I would go on walks. We might get caught in the rain and run from the store to our car to try and stay dry. Those are the moments I miss, the everyday things which I no longer experience.
I used to kick leaves with my daughter. We’d jump in puddles in the winter and take a summer stroll when the sun was in full force.
Now I lay in bed exhausted or sit and type. I feel too tired to go outside. I see the view from the window, it’s the same old view everyday. Mundane houses all in a row.
It’s only when we are driving to hospital that I see the countryside – the sheep and cows in the fields.
On the way home from hospital this week we drove through town. My husband stopped at the bank. I watched people walking through town. Workers with briefcases, students with backpacks. people standing at the bus stop. I’ve not used public transport in 2 and a half years. I miss riding on a bus.
But the most heartbreaking of all is seeing mothers walking through town, pushing a pushchair and shopping. Holding hands with toddlers and going about their day to day life.
I feel a huge pain inside. I want to be the one walking through town with kids. I don’t want to rely upon my husband to push me because I’m too weak to walk.
I want to be the mother of young child. I have one daughter for which I’m truly grateful, but I’ve always dreamed of more.
It was my dream to have a large family. I wanted at least four children. This dream was dashed when I was diagnosed. I was told not to try to get pregnant until my health was stable. Yet my health has never been stable and I’m not well enough to care for a baby at this point in my life. It breaks my heart.
There is still a chance that I could have another child one day. I haven’t given up hope. It all depends on if I can get the correct medication. I want an adrenal pump. It’s a medical treatment that changes the lives of people with adrenal insufficiency, yet my specialist will not consider this.
I’m trying to find a doctor who will work with me. I’m blogging whilst sick and writing freelance. I’m doing what I can to make money so we can eventually save the £9000 we would need to pay for the treatment.
I want to get well so I can have a semi normal life. I want to do more with my daughter and yes I want to have another child.
Some may say – you’re sick you can’t have any more kids. Or, it’s not right to bring a child into this world when you can’t care for them in the same way a healthy parent could. Who has the right to decide whether my husband and I should have a second child?
My husband is a wonderful step father to our 7 year old but has dreamed of having a biological child for many years. Does my illness have to destroy my husband’s dream as well as my own? I hope not.
I know it would not be wise to have a baby at the moment as I currently am. Everything needs to be done in wisdom and in order, at the moment my priority is getting the best medical treatment available.
But, I will not give up hope. I’ll not give up dreaming of having a larger family- just because I have chronic illness. I’ll not give up hope that one day my health will be more stable and I’ll be back out on that street, walking my child to school and feeing the cold autumn air blowing on my face.
I look forward to this so much and will keep up my fight to get the treatment I deserve. I’ll never give up because I have dreams and a life to live and I really don’t want to spend the rest of my life or days in bed.
Angela Milnes x
You can find Angela online:
Thank you for your post Angela. I have no idea how you manage to raise a young daughter and manage with a chronic illness, I hope that you get the treatment you need and the family you dream of.