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.
To learn more about ADRENAL INSUFFICIENCY please visit my Health Category here on The Inspiration Edit.