I've been diagnosed with Ankylosing Spondylitis

This blog post is disguised as a positive one I promise. It might not seem it initially. 


This week I was shocked to receive a letter from the hospital following an MRI I had a few weeks ago. 

Reluctant to lay in the machine, I felt so nervous. 
I’m not sure what I thought might happen but the heart was pounding anyway. 
Thankfully the amazing hospital workers had no hesitation in letting me use a machine which they told me was a bigger one. 
Still looked small to me. 
Yet I appreciated how sweet they were considering it was the end of the day. Without their kindness I expect they could have left earlier for home. 
Previously, an MRI (they were looking for spina bifida occulta) showed 3 degenerative discs. One facet joint had some osteoarthritis but let’s face it, I’m not 21 anymore. So part of me almost didn’t go for the test. 
The results informed me I have Ankylosing Spondylitis. 
There are square vertebral bodies with lesions, sacroilitis on both hips both sides of the joint and it generally sounds like a lot of inflammation is going on. 
Stunned. 
I’d read around AS before but was thankful I didn’t have it. Now I do. 
This is life changing. 
A chance of spinal fusion is frightening. This means the spine ends up one big long bone rather than lots of little bones. 
The treatment is naproxen which will flare up the crohns so we can’t go down that route. There is biological treatment available but I know nothing about that yet. 
Already, I’ve made positive steps in my research and hope things can continue to give me hope. 


I’m feeling like I really want to crack on with living life just now. 
Travel. 
See the world. 
Sort my house out. 
Get some building work done. 
Apparently, daily exercise is a must. Eating a low starch diet is also proven to help. If you want to read around the science bit, I’ll link it here. I am excited to read that one of the bacteria in the gut (which loves to feed on starch) is linked to CD and AS. So, this makes total sense as when I followed the specific carbohydrate diet my gut flora changed, as did the back pain. 
At the age of 13 the back pain started. No one seemed to think this was unusual and I’ve lived with a bad back ever since. Around the same time (tmi warning) I began I lose blood from my intestines and the GP decided this was likely heamorriods without an examination and for years I lived on medication for that until my crohns diagnosis 25 years later!
It’s bad. But. I can’t turn back time. So what can I do? I can exercise daily and eat right. 

I can live life. 


Since it’s sinking in that I’ve been diagnosed with #ankylosingspondylitis (another autoimmune disease) and researching diet. 
Apparently a low starch diet is heavily evidenced to help against the progression of AS. I clearly remember going keto to help with crohns. My back had never been so good. 
Then I felt better. 
Things slipped. 
🍫🍰🍦🍭🍬🎂🍩🍷
No option but to put the body first now. 
Stress be gone. 
Exercise and stretching each day. 
Low starch diet here we come. 
🌰🍤🍗🍖🍆🍅🍒🍑🍍🧀. 
Aiming to prevent spinal fusion. 

The next day diary entry:

Today sees my doctors visit from my painful knuckles. They sent me to hospital for an x-ray and blood to check for rheumatoid arthritis which is an autoimmune, inflammatory condition – sounds like all the other issues I have.
Still feeling pretty devastated but determined to get a grip of this through low starch diet and daily exercise.


I’m giving up the struggle of life now and I’ll make it let me know what it wants. 

Almost like using it as an excuse but rather it feels like living the life I'm meant to be living – putting health and happiness first – which is incredible. Let’s see what happens now moving forward. Have a big long list of things that I would really really like to do such as update my pod casts. I also quite keen to get things moving on you tube .
I’m going to have to call in the troops and get some people to help with my sales online. Really and truly I want to do some travelling and documenting all as I go. Hoping to show others that through the power of research and positivity you can live a good life despite all of the things that life throws at you. Having an ankylosing spondylitis is a big blow to me and I feel quite devastated. I feel like I need the energy to start to sort my house out and my life out. But I think I can do it. I do feel quite positive.

I’m not quite sure yet how I might make my routine work. But I will need to get to the gym today. And also do some work on my computer. How and why I’m not sure which way round it might work. Unless I combine the gym with going afterwards I’m working on my computer. Could be a possibility.

I'm aiming to keep calm and just go with the flow of life. But this one is tricky.

Exam time! Hooray!!!

Can I please bottle that feeling?

Not the feeling you have pre-exam but that feeling where you could happily punch the air with joy.
Knowing you've worked hard, put in the hours, remembered everything and generally been overly a cool geek in order to answer the questions.

Sitting at the desk, reading the paper in front of you.  Knowing you have seen these questions posted before.  Yes!  You know some answers.


This may just be enough to pass.

Year 1 and this is what I need to do.  To pass.   This is the advice I have had from those who know such things.  After a difficult year so far,  I am so proud of myself that I haven't given up and thrown in the proverbial towel.  Imagine.  Being so super disappointed with myself.

So what have I learnt by sticking with it this year?  I have learnt that university is not for the feint hearted.  There is plenty of study to be done outside of the lectures.  In fact I have learnt more by myself in the library than in those lectures.  Perhaps because my hearing has let me down after my previous surgery on it.  

Year 2 will see me working more efficiently in my paid work and spending longer hours in the library.  Hoping to get my twins through their driving tests and on the road as soon as I can so I can stop playing at taxi driver.  This is such a pleasure for me. I love being there for my children yet everything is too much.  I am the first to admit this as I type faster and faster across these keyboard letters in preparation for getting myself back behind the wheel and onto another school run.  

Still, I am left wondering what the future will hold. I am definitely sure I would love to work self employed and preferably online.  Although at times, people seem super keen on what I have to show in the way of photographs which is the strangest thing.  Perhaps as this is just something to look at without too much thought.  Should I do something with that?  I'm undecided.  Perhaps with this also in tow, it could be a paid hobby.

Food wise, my passion still lies with helping those with issues in the gut department.  Allergies are becoming huge.  What can I do with that?
My VLOGs in other countries are very popular.  Is there a way in which I can tap into UK holiday companies?  Go and review the facilities for gluten free and dairy free ranges?

The world is at my feet.  Meanwhile, I will continue to try and discover the central dogma of molecular biology while I write an essay and prepare for Biochemistry exam on Friday.  Already I have a 41.5% mark (a pass) but would like to aim higher than this.  Let's crack out a nice 60-70%.  Come on.  You can do this!

How far we have come

March already.  Where is this first year going at university? My good intentions were to add to this blog each week.  Recording my life lessons as well as my science lessons.  Likely the biggest lesson I learnt was that life gets in the way, even with the best intentions.

When you first begin to fill out that UCAS form,  the type of questions you ask as the applicant are likely to be, “Am I good enough?” “Can I pass?” and the like.  Now, however, it is more like, “Where do I find elastic time to magic some space to write that essay?”

Being a firm believer in testing yourself and taking life to the limits in order to learn, I have found a wonderful sense of accomplishment this year.  Simple things have shown me how I learn better as an auditory learner.  Which is a shock as a partially deaf student.  Also, being a lover of technology,  I thought I would fall in love with my new iPad we were supplied with.  However, it seems that this is only one way I find ease in which to record my notes. I still prefer note pads and pieces of paper.

Chemistry is now making sense!

After learning more and more about nutrition is showing me how thankful I can be for the extended year zero at London met last year.  I think without that insight into Chemistry I may have found things tricky this year.  As always with life, there are highs and lows and lots still to catch up on laying on my desk.  This first year at university I have found an affection for the beautiful buildings around campus, for the coffee in starbucks and the smiling faces who serve it.  I now know I want to do well,  have had to lessen the burden of this by lowering my work hours, and wish to continue my studies upon successful completion of this Honours degree.

Here’s to the exam period and the second year.