Today I’m writing a kind of confession and it’s something I need to get off my chest. I’ve decided to be a blogging rebel. I’m going to do things my way and stuff the “you should”, “you must”, “this is the way” mentality.
The thing is, I started a blog in 2015 which became quite popular. I shared my feelings, what I felt, what I dreamed of and how life was for me and my family and then I discovered “the blogging rules”. I learnt about making a blog into a business. I learnt how to create evergreen content for an audience and I followed what I was told. I followed suggestions and advice and whilst I do get a good following and great page views, I feel THINGS ARE NOT where I want them to be. Not at all. I want to be random..I WANT TO GO BACK TO THE WAY I WAS.
I love the direction my blog was heading back in the early days, sharing about my life and our adventures and family experiences however I got afraid. I did not want to overshare about my life and I didn’t exactly want all the world to know every detail and so I moved direction and began writing more about “how to” style posts. I began sharing things I loved in another way, fun ideas and fun activities. This was well received but different to how I originally blogged and over time I’ve become confused.
I think my direction changed a little as I listened more to the crowd. My blog posts were also influenced by my changing medical status and by courses and classes I took on “how to blog”. They say if it’s not broken don’t change it. I have tried to not change but improve however I’ve found myself making changes which simply don’t work for me and I am just starting to see what these are.
My talent is to write how I feel. That is what people like the best when they read my blog but I have been hiding in a shell for the past 8 months.
What happened and why did I change? Well I got the adrenal pump! It’s a long story but this is what happened. I blogged about life as a Mother with Adrenal Insufficiency and illness. I shared about my condition and was raising awareness and people were supporting me and cheering me on to get the treatment I needed.
I shared my experience and did have health improvements, however Adrenal Insufficiency is not my only chronic condition and therefore I am still unwell a lot of the time. However I got an adrenal pump and my adrenal health has become more stable. I no longer go into hospital all the time with Adrenal Crisis and can live happily as a chronically sick mother at home. This is where I am at.
So what is the problem?
As soon as I got the adrenal pump, I began getting emails and messages constantly from others in the UK and around the world wanting this treatment. The only things is I cannot give this to these people. I managed to find a doctor willing to work with me, however it took me 3 years to find someone and I was asked not to share his details with everyone. He is not able to work with lot’s of patients with the pump and this for me was a trial and part of a study.
Yet I was constantly asked about my treatment from others who like me are desperate to feel more well. So what did I do. I struggled to say sorry I can’t help you. People expect me to share all the details of my doctor, the treatment and so forth but the realty is I am back under the care of my own NHS team and whilst I saved for treatment and got a pump, I am managing the treatment on my own. I get a script from a doctor but I have to pay out for this and for my treatment on a monthly basis. It’s not a treatment the NHS is willing to fund and or take part in as they don’t have the experience. Whilst my NHS Endo does recognise the benefits and improvements in my health I cannot be funded for my treatment.
If a Doctor has asked me to keep my treatment details private then I should respect that. What happens if I go and tell everyone who treats me and he gets 100 phone calls and as he said, gets bombarded with patients he cannot help at this time? I will bear the brunt and risk losing the support I have and whilst I want others to feel more well, I have to think of my own health and my daughter. If I lost the pump she would suffer. I don’t want to lose out on the opportunity to have medication that works for me because I talk about it to everyone and make the Doctors uneasy.
I feel like I’m stuck between a stone and a rock.
So last year I stopped talking about my health on my blog, although it is still a huge part of my life and I changed my blog name and focussed on Inspirational ideas. My decision was heavily influenced by the fact I got the adrenal pump and the pressure I’ve been having from others to discuss my treatment in detail. I don’t want to DISCUSS THIS!
I want to continue my treatment without the risk of losing it. I want the research to go ahead and I want my experience to inform decision making in future so that It can help others in my situation but… at the end of the day I searched 3 years for a Doctor to help me. I paid over £6000 and got more stable and I’m not about to throw it all way when the risk is too great for me and my family.
I’m not being selfish but I am putting my health and family first and by allowing the Doctors to get on with helping me and study my case, it will eventually help others.
From now on if I get an email I will be referring people to this blog post. I’m sorry but I cannot discuss my treatment as it’s a condition of my treatment.
I suggest if you want to trial the adrenal pump for yourself speak to your Endo, visit and ring up private Endo’s until you find someone willing to help you. Money is and may seem impossible but we scrimped and saved for 3 years for my treatment and still do budget like crazy for the money fees. You may have to do the same no matter what your circumstances.
I won’t be sharing and discussing my adrenal pump with others. I am sorry. I will say that it did improve my quality of life because I struggled to take tablets and absorb my medication and now I am getting the cortisol replacement that I need. I still have other health conditions which affect my daily living but I’m not going to discuss it.
So please don’t take it personally but I wont be replying personally to the 10-20 emails I get each week. I can’t. I don’t have the time when I feel so unwell from other conditions too.
What I will be doing is rethinking how I blog. I want to go back to sharing more about me and my family but not WRITING ABOUT MY PUMP. I wan’t to go back to diary style posts a little more and balance that out with my how to ones. I want to be random like I used to be.
I don’t want a planned week. I don’t want a blog schedule and I don’t want to conform to what people think I should do. I want to be me. I am going to be me and write about me, share my thoughts once more and opinions but not about the pump and I guess you will either respect that or not.
The one thing I want more than anything is for others with my condition to become more well and to raise awareness but I can’t do this by sharing about my personal treatment. I’m going to look at my blogging and consider what I want to do in the coming days and weeks. I won’t change drastically but I think I will go back to some more personal style blog posts and in my own way.
Now I’ve said how I feel. I guess I feel a little like a blogging rebel. I’m taking charge. I will no longer hide myself because I’m afraid of people bombarding me. I will simply say ..visit this page and read my answer.
My answer is this. I’m sorry about your health situation but I cant help you with your request. Hopefully I can help in future. I sincerely would like to. I hope you understand.
I do feel a bit of a rebel for doing this but I have to do what is best for me and my family.
I am not going to let my fear of doing what “others think I should do” stop me anymore. I am going to write more in the style I want and I am going to talk about my health and life again but not share treatment details. I’m also going to start doing my weekly roundup post of the things I’ve done with my family as I really miss that style post.