Pumpkins and Invisible Illness
I have an invisible illness called Adrenal Insufficiency. I was first diagnosed in 2013, a few weeks after I married my husband. I had felt unwell for many years and repeatedly visited the doctors only to be told I was being over anxious, I must have Fibromyalgia or Chronic Fatigue, however in 2013 I collapsed and was taken to hospital and my illness was finally diagnosed.
Living with Adrenal Insufficiency is not easy. I have to admit the first three years after diagnosis were horrendous.
I was in and out of hospital a lot. I was continuously sick, bed bound and had to use a wheelchair most of the time. In fact I was so ill the only place I would go on most occasions would be medical appointments.
Learning to live with my Chronic Illness has not been easy. Unlike some medical conditions, my illness is effected by stress on the body. This can be any kind of stress from the physical stress of standing and walking to a happy moment.
My adrenal glands do not make the essential hormone Cortisol which is made according to the stress levels of the body. For me it is a constant and daily battle not only to manage my symptoms but to even know if my body requires more medication than the base dose.
When one becomes too low in Cortisol, they will suffer serious effects from low blood pressure and pain, to more severe stabbing pains, dizziness and confusion. Those are just some of the symptoms.
If left untreated or if I do not know I need more Cortisol I will end up going into an Adrenal Crisis which can lead to death.
It is a scary thing and I have to monitor my health continuously. I have to take medication everywhere I go and if I start to feel dizzy and unwell I will require urgent treatment.
My Adrenal Insufficiency has become easier to manage over the past four years. It is however still incredibly difficult.
There is no monitor like a diabetes test to know what level my Cortisol is and unlike some health conditions Cortisol levels change during the day and so making sure I do not have too little or too much medication is always a difficulty.
Since my health became better managed about a year ago, I have been able to do more. Instead of 7 days in bed, I may spend only 3 days in bed. I can travel somewhere and rest for a few days and go out with my family for a few hours before needing a rest.
If I need to go somewhere for a whole day, I can do it but I will be incredibly unwell by the end of the day and it will take several days to recover. I have learnt to pace myself and I can go maybe one or two places in a week without making myself more unwell.
The thing is, despite going out more, I am still very unwell. I still have chronic illness. If I do choose to go somewhere it is at the expense of something else. For example going to take photos with my daughter.
We wanted to go to a pumpkin patch but I really was not well enough to travel. Instead we drove to the field around the corner from our home and had 5 minutes of photos. I did not have the energy to brush or style my hair.
I did not have energy to put on makeup or get changed into a nice outfit. I had a choice and it was get ready and be too tired to go or just go as I was.
So whilst it may look like we went out for the day to have a photo shoot, the reality is we went out for five minutes and then returned home. That's all I could manage. That is how it is for me with this condition.
Ironically I recently went to an event where I managed to stay the whole day. I looked okay but I was struggling. I was on a double dose of medication and had traveled two days in advance to give me time to rest and again I had two days to rest before returning home.
People told me I look so well, It's amazing what makeup can do. Sadly makeup does not take away a chronic illness.
In fact when I attended church recently someone told me I looked great and said, if I wore makeup more often my health may improve. Oh how I wish it was that simple. I do get lot's of comments and many people assume because I go somewhere or because I dress nice I must be well.
Sadly I am not. I will never be well. My health condition Adrenal Insufficiency is for life. It is not going to go away and no matter how much preparation I do to be able to go somewhere I will be unwell to some extent.
This is who I am and I guess "everyday" healthy people who catch a cold or bug and then get better, well they just don't understand what it is like to be sick forever.
So I will continue to manage my health. I will continue to live with this invisible illness and I will pace and do all I can to take part in every day moments with my child. However the reality is, if I go out with my daughter to a field, I will not have the energy to cook dinner and if I cook dinner I will not have energy to wear makeup. When you have an invisible illness all may appear normal but it is far from that. The illness is still there, it just cannot be seen by the public eye.
Angela x
To learn more about ADRENAL INSUFFICIENCY please visit my Health Category here on The Inspiration Edit.
Wow, I can't imagine how tough that must be for you to go through Angela. Good on you for fighting against it and still making the effort to do things whenever you can, it must be so difficult. I absolutely love the photo shoot - you both look so happy - and don't worry about the lack of make-up, a smile does far more than make-up ever can and I think you look fabulous 🙂
Very true. I can count the number of times I have worn makeup in the past year on my hand lol! 🙂
That must be so hard, but it sounds like you have a good handle on it. You know how much you can take before you need a rest.
You r illness is incredibly debilitating and must keep you from many things that you want to do with your daughter. Are scientists working on any kind of testing for cortisol levels or is that not something that can be done?
As far as I know no one is working on a cortisol measuring method ... I wish they were.
I'm so sorry to hear that you are dealing with this. But your daughter is lucky to have such a strong women in her life <3
She is blessed and so am I that we have each other.
I have learned so much about Adrenal Insufficiency following your blog. At least you were able to get outside for the photos even if it was for only a few minutes.
That is great news. I do want to educate and help people to understand the condition better.
Thank you for sharing your story. I had never heard of this before today. I just love these photos, especially the laughing one with your daughter.
Thanks Amber, it is a tough illness to live with.
I suffered from adrenal fatigue, was diagnosed when I was 15 with PCOS and I have to admit that the way I eat and live my life really does affect my illness.
Adrenal Fatigue is NOT ADRENAL INSUFFICIENCY. Just saying. Adrenal Insufficiency is a life threatening illness. Food does not affect AI but cortisol levels and stress on the body.
I love your pictures. I pray that you get better from your illness and that the Lord can continue to heal you. Thanks for sharing.
thanks
Having an illness for life can be really difficult and alter your lifestyle in many ways. You're so brave that you're managing it so beautifully and amazingly well. Thank you for opening up about it to us. ?
Thanks. I am doing my best to try and live my new normal!
I'm really inspired by your story. Keep on going! I love the pumpkins on the background. It's really autumn now!
thanks. The pumpkins do make great props.
I don't think there is enough information out there about invisible illnesses. My cousin has chronic fatigue as well as multiple other health issues and everyday life is a struggle. I have endometriosis and pcos which make my periods unbearably painful and I often get cysts that grow and twist or burst - was once told by an ex manager to man up and take some paracetamol like every other woman does!
Yes some people do not understand whereas some are very kind and have empathy.
It must be so tough for you at times. I know all too well about invisible illnesses as I suffer from Pulmonary Sarcoidosis. People assume you look fine on the outside, but how you feel on the inside is a different ball game! Hope you are feeling a little better now x (Lovely pics too)
sorry to hear you have that. It is tough when I look perfectly fine.
I wasn't aware such kind of illness exists. This is why blogging is great, people get educated. I hope your health will continue to improve.
This is my first time hearing about Adrenal Insufficiency. Invisible illnesses is especially hard, because on the outside you wouldn't necessarily know one is suffering. I admire you for speaking out!
Yes you would have no idea. Thanks for reading Natalie.
It is difficult and scary to have that illness. I admire you for being strong, your story inspires me.
thankyou.
What an amazing woman you are! I couldn't imagine having to go through what you do on a daily basis. I'm happy that you got to spend even that 5 minutes. You look like you still had fun no matter and it will be a great memory to remember for a long time. As for the hair and makeup....you look beautiful without doing any of it!
Thanks. It is hard but we pace and I am learning to adapt. I sometimes feel sad when i think of how things used to be ... as a normal healthy person.... but we still have a happy life despite the tough moments.
Oh no, but I'm glad you are better! It's great to see you and your daughter having a great time around this Halloween time with the pumpkins. Thank you for sharing your story.
thanks Claire.
5 minutes or not, that was a great photo shoot!! love the pictures of you guys laughing and how did you get the pumpkin to float? LOL Sorry you have to deal w/this, I know it must be a continuous challenge.
We are learning to do things really fast and it was still fun!
Oh hon, it's all about the balance. I know what it's like to live with a chronic illness, I do myself and grew up with my mum and now my husband having ME. Unless you have a cast on your leg or something people can see, they don't understand you are still ill and still suffering even though you are trying to live a normal life. You are doing great hon and what a lovely photo shoot. Do what you can and take the highs with the lows. Just take each day as it comes. You are doing fab and here if you ever want to talk xx
Thanks Susan. It is so tricky at times.
You are doing amazing things by sharing your illness. Your daughter is lucky to have such a strong mum. It must be incredibly hard to plan your life so much.
thanks so much. I just want to do my part to raise awareness , help myself and others and be the best mum I can be.
Good you are speaking about this. Many people struggle to understand any type of illness they can't see. Good to know it is getting easier to manage.
thanks Stella.
I know what you mean by being fatigue and with chronic illness. I agree that it's tough but keep on going because you're strong.
I had never heard of this illness before. Thanks for raising awareness.
Although it was only 5 minutes, those 5 minutes looked like so much fun!
It must be so difficult, especially because people who don't know can't see it. I think you are doing a fantastic job creating awareness and these pictures are adorable