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.

5am thoughts about my university work in year 3

Today, I am having a struggle.

Today, I feel better physically than I did this past week.  Pain, kidney infections, lumber pain, hip pain, more pain, leukocytes in my urine, blood, protein, ketones, so the dr sent me for an X-ray thinking kidney stones.  Shock waved its way over me as I was informed there is an intestinal blockage.  For someone with crohns, this is terrible news.  I began to write a will.

Realising that life sometimes teters on the edge of scary and fragile, I wrote a blog post over on my main website.  How life has taken over from me and has a life of its own now.  For the past 3 years at university I have felt the face of adversity telling me to come away from it all.  Really strongly and oh my gosh even writing it here, knowing you won't read it for 3 years, is just a massive sigh coming out of my body and onto the digital paper.  Oh gosh, I sigh literally.  Journalling is more than a therapy.  But in words I cannot explain.

Calmly, I feel like quitting. Yet for the past ONE MONTH is the first time in university I haven't wanted to quit.  IT was more than a nice feeling.  I have loved the workload, the actual work, the understanding of what is going on in the classroom.  Answering all the questions when others seemed not to be able to.

Epiphany hit me as i realised i was finally doing what I had wanted to do all these years.  I was becoming a nutritionist.

Just as I was about to fist bump the air, is when the health issue struck.
Knocked me off my feet. In and out of hospital.
Couldn't even manage to text without messing it up so it wasn't  a chance to get caught up on uni work.

This morning I feel a little better.  Quite a lot better in fact.  So i get up early to start some work.  5AM early.

Flipping the screen up on my laptop as i sit here drinking my coffee, listening to the dog snore and sending occasional chats to a uni friend who is visiting India, I feel a need to write.  Not nutrition stuff.  Not uni stuff.  This stuff.  Stories.  I want to write stories.  I could do that all day, and would do that all day, and should do that all day. I know this in my bones.

Lack of exercise and eating right has not helped my health. I want it back. I want me back.
Uni has knocked the stuffing out of me and I really wanted to end my stories on here with a positive twist of knowing I had a Phd and how it was all worth it in the end.  A PHD in science.  Wow makes me sound uber smart.
Without meaning to sound judgemental, many of the academics might have a flash title and all but not enough time or money to really live life in a way i really want to live life.  I want to travel and see things.  I can't due to all of this uni work.  Nothing else is holding me back.  Truly it isn't.
Part of me really loves uni but i think if i strip it back, i could gladly take my laptop into the coffee shop at uni, park the car and sit with my coffee and write for some time.  It's what I love.  It feels easy.  And it's what I want.   Taking photos, creating videos.

Let's be honest here.

Before I started university I was in debt.  I also was nursing a broken heart and feeling as though I finally had to deal with the fact I wouldn't have any more children. So I wanted something massive to deal with to take the pain away. And to pay to keep me afloat.   So here we are.  University final year. plus with a massive unconditional offer for a masters degree.  All online.  Food safety and quality management.  Do I want it? I'm not sure yet.
So the debt is pretty much gone.  The idea was this would buy me writing time to get things off the ground and making more money but I hadn't factored in aging parents, taking care of all that comes along with that.  Lacking in time to write, that then puts out my fire for life.  Yet it doesn't really as its still there burning away in the embers.

I need to research Arginine now and upload it on some portal kind of website thing but to be honest,  I feel like I'm frustrated and can't be bothered with it. Oh, another hot flush.  Is this menopause?  Dr says no.

Year 3 summary.  I love it. And I don't.  I have clarity on my future. That's quite priceless.

My results are all in

So it seems somehow, I passed.

Amazing news isn't it?  There was just one disappointment which was Biochemistry in my exam.  22%

22%? Well I felt I had done so so so much better than that.  Yet, worry not, I do feel I understood the content and I also passed the module as the other elements were great marks.  Pleased for sure!

Overall a 50% pass for Biochem.  Not bad as I missed so much of that.

The other results were amazing.  My PDP (the thing I added blogs to) got a whopping 85% which I was really so super glad about. I was hoping for a great score there.

Nutrition exam came away with 67%.

All modules were at the very least a 2:2 and most a 2:1.

This first year doesn't count towards the final grade marks yet I have learnt so much about what I may need to do to get a first (I'd love one of those!) and to be honest, I know it's not going to be handed to me on a plate.  Yet it seems incredibly possible depending on what else you might have going on in life.  For me, I need to work a little less on people's hair styles and spend far more time reading and in the library.  This coming year should be far far more interesting. Much less about the core science and more in which I'm hoping to relate to.  Immunology, cancer, metabolism etc.  I am doubly sure I will be learning so much about myself too and how I can help myself with my own health and diet - she says as she takes a sip of her latte - which would be amazing.

Emailing my tutor who was going to show me some good examples of well written papers and essays got no reply.  Well, it is the summer holidays.  My brain is a little tuned out too!

Yesterday I took a call from my mental health advisor from uni who is quite on the ball in all departments.  She is keen for me to continue to take care of my mental health and feels my physical health is all part of the difficulties dealing with the mental.

To be totally open on this blog though, I have definitely realised that I need to be comfortable in the skin I'm in.  I'm a person who loves to be at home, sitting at my desk and not being overly social in public.  That's just me.  It's who I am.  Realising that has enabled me to create a much better inner peace.  Ok, so here's the hippy in me showing through now.

I have so many super ideas on how I can create my ideal life and living from the beauty of my laptop. I am super keen to make this happen.  It just may mean some more late nights, which I am not so great at.

Today, my son takes his last GCSE and in two days, my daughter finishes too (did I mention they are twins?)  I cannot help but feel like punching the air saying "I've done it!" as I realise I actually lived long enough to watch them grow up!  Sounds daft now but when they were tiny I was an anxiety filled mess who really wanted to live long enough.  I would lie awake counting my heartbeats as it pounded with palpitations (these are the days before I knew I was allergic to gluten!).
Next year (early) they will be able to drive which will give me so much more free time.  Although leaving school, they are going to be at college which is directly next to the university! Amazing.

Hoping this will all work out well, I am continuing with putting as much time as possible into my blog posts and youtube videos in the hope that it really doesn't matter how many slipped discs I'm dealing with or what level of arthritis.  I can still work and keep myself doing all the things I love.

I'm excited for the future.  Just wishing I wasn't filled with doubt about me actually being able to make it all happen.

What about you?  How is your future looking?  Are you confident?