My First Magazine Appearance and the fight to Kick Adrenal Insufficiency in the Butt!
Recently I was awarded a Mumpreneur Bronze Website Award for my blog dasyinbed.com. I really wasn’t expecting it and was quite surprised and really excited. In fact I am still very excited about the award and plan to use the recognition I have been given to spread the word about my health condition Adrenal Insufficiency. I hope to raise interest and support for my fight to get well which will help me to become a healthy mother.
At the time I received the award, I was given the opportunity to feature in the August Edition of the MumpreneurUK Magazine! The Magazine came out last week and there on page 19 was an article all about my blog Daysinbed.com. I was really pleased and what was even cooler was that a picture of me and my daughter Sylvia was displayed on the contents page.
I am really grateful to receive my first Award for Daysinbed. It is really difficult to write a blog especially on the days when I am really sick. I often find myself cramming in a few posts in one day just incase I cannot function the next. I have times when I’m simply too unwell to think or do anything.
The one thing I can do when really sick is tweet, I guess it doesn’t stress me out or use my brain power as much. I don’t have to move and it helps me to feel like I’m not stuck in bed. Tweeting even distracts me from the pain i’m in which is great at times.
However when writing blog posts, that has to fit in around my feelings of exhaustion, nausea and headaches. Sometimes I simply go to sleep and cant do any work. I then come back and catch up on social media when i’m feeling somewhat improved but it’s never better! I don’t get well. I am always unwell and this is why from this day onwards I have made a plan, a new plan to campaign for my health.
I am going to campaign to get well and I am going to continue writing about it here on daysinbed.com. I was worried a few months ago, I tried to separate my fight to get well and my blog, however I came to realise that the blog is about me and my life and being sick and spending most of my days in bed is my life story- it’s who I am for now.
I was a little worried. Would I still get the blogging opportunities others get if I write a lot about my health. I also worried, would people get sick of hearing about my fight to become well. I now know that the people who follow me and interact with me as a blogger actually care. They are rooting for me to get well and supporting me.
I have made a 5 step plan to get well. It may take many many months and I’ll be writing about this over the coming weeks.
The first step is to share my story. I plan to share my health condition and the effects it has on my life with local press and the media. I’m not doing this for attention. I’d rather not! I’m doing it because it’s the only way I’m going to get the support I need to get the right medical treatment to allow me to improve my quality of life.
I’m sick of using a wheelchair and only being able to walk a few meters at a time. It really does suck! I’m tired of going somewhere and suffering for a few weeks as my body recovers from feeling burnt out. Going to a shop or visiting an event should not burn me out for weeks but it does and it’s not great for my family.
I want to feel normal again. This is possible for me if I were given the right treatment but the NHS is slow. I’ve been unwell since my child was born but I’ve been stuck “in bed” and unable to be like an everyday person for 25 months now and I’m over it! I can’t live like this continuously.
I’m sick of collapsing and going into hospital. I’m sick of going hypoglycaemic most days which is putting my life at risk.
I do feel frustrated that It’s taken all these months and that I have to wait month after month for appointments due to waiting lists. In fact I recently found out over the phone that I have a second hormone deficiency which is affecting my Cortisol levels.
According to my test results I have Human growth hormone deficiency. As serious as this second hormone deficiency is and the effects this can have on my body and Cortisol levels, I’m again waiting to be seen by a consultant at the hospital to discuss treatment options.
If I had the money and went private, I would have been treated many months ago but I am reliant upon the NHS to help me and that takes a long time. So far over 2 years. My child is 7 and I want to play with her at the park. She is missing out on an active mother, something I could be with the right treatment.
I need treatment for human growth hormone deficiency and will be writing a post on this shortly. I’m also working hard to lose weight to help reduce the amount of steroids (cortisol) I need daily to keep me alive. Steroids are not good for the body and by halving my weight I could then halve my steroid intake. This would reduce the chance of gaining diabetes and heart disease. Also the steroids I take can affect my stomach and liver as well as my immune system, bones, weight and skin. It is a simple fact, the less I weigh the less unwell I will become.
I will continue to fight to get the hydrocortisone adrenal pump, a medical treatment which I know will change my life. No matter how long it takes, I’ll keep on fighting for this medication and it begins with step one, contacting the local papers to announce my award, an award won my me, a mother who is severely unwell and often stuck in bed. I hope this will get the ball rolling and help me to start my campaign to be treated and improve my quality of life.
I don’t want to wait another 5 or 10 years to get well. I’ve lost time and opportunities that cannot be given back. If anything good comes from the effort I’ve been making to write this blog and share my story and my life, then surely it is the MumpreneurUK Website Award.
If you would like to support my fight to get well, please do share my post and spread the word about my fight for flight. I’m doing all I can and need support to change my life.
You are also welcome to contribute to my Go Fund Me saver to help me save for private appointments, the Subcutaneous Hydrocortisone Adrenal Pump and treatment monitoring.
Angela Milnes xx
Linking up to