Ankylosing Spondylitis & me: living with a chronic illness

This post has been a long time coming – I was diagnosed with non radiographic axial spondyloarthritis, or Ankylosing Spondylitis a year ago next month and it’s been a tough year coming to terms with it.

I’ve waited so long for a diagnosis that once I had one I didn’t know what to think or how to feel – and I’ve struggled to wrote about it.

But what is it?  Well, in simple terms Ankylosing Spondylitis(or AS as it it’ll be know for the rest of this post) is a long-term (chronic) condition in which the spine and other areas of the body become inflamed.

Symptoms can include back pain and stiffness, pain and swelling in other parts of the body, excess inflammation and extreme tiredness, plus lots more.

AS & me

My symptoms started when I was 12 – I started getting very painful restless legs and stiffness and it was put down to growing pains and I figured it was normal.  A bout of glandular fever aged 22 again accelerated my symptoms and I started getting regular periods of time when I’d be so exhausted I struggled to walk.  Age 27 I was diagnosed with an underactive thyroid and it was thought the extreme fatigue was due to this.  In 2014 age 29 pregnancy was a bumpy ride that resulted in excessive amniotic fluid, which for some reason my body was over-making and I now know to be an autoimmune response due to AS.  Since the boy was born in late 2014 my back pain, fatigue, stiffness and problems have got steadily worse.

On a good day I’ll happily walk miles

Diagnosis

It took a long time to get diagnosed – I’m overweight and for years my problems were blamed purely on my weight; until December 2017 when an MRI and blood test confirmed AS.

It’s thought AS is linked to a certain gene, HLA-B27 and a blood test showed I have this gene – so it was decided AS was the issue and I’d be under the long term care of the Rheumatology department at my local hospital.

A kind of mourning

I sloped off from hospital that day desperately sad – I’d known for a long time that something wasn’t right but it almost hurt to find out that there was actually something making me feel so poorly.  I did lots of research over the coming weeks and tried to accept and understand what was going on.

I just want to be a normal mum – I don’t want pain to hold me back

Pain

The pain is always there – in the bottom of my back and my hips, sometimes my neck.  Every time I sit, stand, move – there is always a little niggle of pain.

Flare-ups are the worst thing for me.  Because AS causes me to have higher than normal levels of inflammation I find I’m stupidly sensitive to strange things.  Medication is so hit and miss – it either causes me no problems or causes some kind of autoimmune response that increases my pain and symptoms and wipes me out for days or weeks.  I can tell when I feel really poorly, because my legs become so painful I can’t touch them.  It’s an excruciating pain that goes through every part of my legs, making every movement just awful.

Dragging the troops out on a bad pain day

A strange sort of shock, maybe?

The weirdest thing for me is a strange sensitivity that occurs after any surgery, shock or stress – I become allergic to just about everything, such as surgical stockings after a c-section, steri-strips and dressings after hand surgery, and things like onions, tomatoes, and certain foods and drinks.

Only recently has it been explained to me that the AS causes my body to work too hard repairing itself – causing these strange reactions.

Daily life

My day starts at 1am, when I wake up in pain.  Sleeping is a nightmare because there is no sleeping position that causes me no pain.  I wake every hour or so through the night until I have to get up at 5am because the pain in my lower back is unbearable.  I’m usually very stiff – as the day goes on the stiffness eases – it usually goes away by 1pm, but on bad days can last all day.

Energy is a huge issue for me, because I’ve still got no idea how to use it carefully.  I came across the spoon theory many years ago, which talks about chronic illness sufferers starting the day with a certain amount of spoons and having to choose how to use the spoons(you can read it here) and it’s very true.

Saving enough spoons for a walk can wipe me out all day

No two days are the same – some days I can start my day with 20 spoons, and I have a relatively normal day.  Some days, like today, I only have 10 spoons and I know the day will be difficult.

By the time I’ve used 5 spoons sorting the little man out and the other 5 doing the preschool run and a little bit of housework I’m wiped out for the day.  I’m not the sort of person who sits down all the time – yet 5 days out of 7 I’m unable to do much.

Treatment

Initially I was treated with painkillers in the form of Celecoxib, a non-steroidal anti-inflammatory drug(NSAID) but after a return visit at the start of the Summer it became apparent that my AS was getting worse and it was decided I’d start Benepali(Etanercept), weekly injections to fight the inflammation and slow the progression.

Benepali pen

They are classed as an immuno-suppressant and unfortunately I had to stop several times due to infections, resulting in me stopping them awaiting an appointment with the consultant which is in about 6 weeks.

Plodding on

AS is going to be something that affects me for the rest of my life – it will never go away but I have to try and stop it progressing and learn to manage my pain and energy better.  I still hate it – and I still struggle admitting to myself that I have a chronic condition, especially when it stops me going out and doing things.  I don’t know if I’ll ever accept it – the frustrating part of having AS along with any other chronic illness is how invisible it is, it can be really hard to get people to understand how you can feel so bad yet physically look fine.

The big issue

Of course I know my weight isn’t helping – I’ve never been comfortable with being on the larger side and I know every pound I lose will cause a little extra strain on my body, but it is incredible difficult to lose weight.

I want to be a normal person who can go to the gym most days and stick to a healthy diet – I have to be so careful not to overdo things and when I’m having a terrible day it’s so hard to not reach for the sugar and carbs when my body craves them for energy.  I can have a fridge full of healthy food but be unable to stand up long enough to cook a dinner – and of course it makes me really cross with myself, and very frustrated.

My plan is to be as healthy as I can be, and to get my weight down – and hopefully one day I can find a way to comfortably live with AS.

You can find more information on AS on the NHS website here and lots of help and information on the NASS website here.

 

2 thoughts on “Ankylosing Spondylitis & me: living with a chronic illness

  1. That is almost my life too! I am a Kent mummy to two beautiful girls x I was diagnosed aged 25 and now 42. It’s hard going x it’s learning to accept that you have this disease and living with it not against it x

  2. Hello Lisa,

    another AS sufferer here, (and also on Benipali) and although my diagnosis initially made be depressed and mourn for the life I thought I’d lost, eventually it taught me to try and do as much as I can while I still can and to appreciate every day and every little happy thing that happens. Try to do more than you think you can on a bad day, but less than you think you can on a good day. There is a wonderful support network of other Spoonies out there, no one should ever have to suffer alone. And knowing this thing wasn’t in my head and that I really wasn’t suffering alone was what finally made it possible for me to get on with my life and enjoy it. I hope this helps you even a little bit. Thanks for the post, I really enjoyed it.

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