Living-with-autoimmune

Life is 10% what happens to you and 90% how you react to it; I saw this phrase years ago and try to live by it. With this in mind my ankylosing spondylitis journey started to take a more positive path.

The diagnosis in January 2015 and subsequent Dr Google investigations had raised a number of questions so I organised a second rheumatology consultation to seek answers. Carefully chosen, this Consultant was heavily involved in the Faculty of Sport and Exercise Medicine which plays a critical role in improving health through physical activity. I was optimistic about this meeting and I wanted to understand the implications of my diagnosis, the liklihood the disease would progress and how quickly.

The first sign of Ankylosing Spondylitis is found in the sacroiliac joints, the two joints that connect the spine with the pelvis. During my initial diagnosis, I found out that mine were already fused. While a normal sacroiliac joint has a minimal range of motion, sacroiliac joint fusion causes pain as well as difficulty with bending forward, backward, and side-to-side, all of which I experience.

The inflammation then moves to the spine and can eventually lead to a total fusion culminating in severe disability. During my Consultation it was agreed that I still had good flexibility, and, as only a small number of people with AS suffer from a total fusion of the spine, my Consultant thought it was unlikely I would be severely disabled.

That said, more recent MRI scans, show evidence of the disease spreading in my spine. Ankylosing spondylitis affects mainly the fibrous tissue junctions where ligaments and tendons attach to bone, called entheses and these are currently showing signs of inflammation, hopefully at tortoise pace.

As well as the reassurance regarding my flexibility, we discussed the advances in medication. I hated taking the tablets, I often forgot or just didn’t take them, so this was good news. There are so many side-affects when you take steroids and anti-inflammatory drugs, so I was very interested to hear of alternative solutions.

My Rheumatologist explained that new injectable Biologic medications appear to slow the progression of the disease which the anti-inflammatories don’t do. They are expensive, available on the NHS but require an assessment period. This was good news and I left the consultation with a goal to explore these biological drugs further. Little did I know that this was going to be a major setback which I will talk about in future blogs.

I also came out of that consultation convinced that self-help was going to play a huge part in managing this disease. As well as researching biological drugs, the 3 areas I was going to focus on were:-

No 1 – Exercise

I wanted to do everything I could to maintain flexibility. I was fortunate that I have always enjoyed exercise. I was a half decent 800m runner and enjoyed the gym. Whilst exercise is crucial for all of us, my consultant explained that gym exercise is an important way of maintaining strength and flexibility. It improves joint movement, posture control, muscle length and strength, lung capacity, balance, and cardiovascular fitness so it was a “no brainer” for me.

In addition to the gym, Rheumatologists agree that walking can be one of the best ways to ease pain and stiffness. I have noticed over the years that when I walk, the pain is significantly reduced. If Jamie and I are on a walking week, my pain levels decrease on average by about 50% which is a huge amount when you live with pain every day.

No 2 – Weight

Keeping weight off was also part of my self-help. I’ve always been relatively careful about my weight but it’s even more important now. Carrying excess weight puts added stress on joints, which can aggravate ankylosing spondylitis, another good reason to maintain my 56 kilos 😊.

I don’t believe in fad diets, in fact, I think some are dangerous. I don’t cut out any food groups either. I’ve reduced my intake of red meat and I apply the 80/20, eat well 80% of time but I don’t deny myself a burger, pizza or chips! My friends know how much I love the blueberry muffins in Costa coffee (and the coffee!!). In fact, I often wonder whether coffee or wine would be the most difficult to give up!

There is so much info on-line about weight maintenance, but the things that work for me are:-

Eat out less. … I only need to have one takeaway and a meal out in a week to put on weight
Prepare all meals from scratch and use whole foods, protein, fibre, and “good” fat 🍔
Strength train, as part of a regular exercise routine. I use weights 4 x per week for 40 minutes each session
Never skip meals and always eat breakfast 🍓
Get enough sleep. My Fitbit tells me I sleep, on average, for 7 hours 29 minutes per night. If I don’t get sufficient sleep, I’m hungry and eat more
Include cardio every day. My average steps for the last 12 months were 14,764 per day. 😮

No 3 – Diet

According to the Arthritis Foundation, a diet rich in fruits, vegetables, whole grains, and omega-3 foods like fatty fish can help reduce inflammation. If you work full time as I do, you need to be very organised to cook food from scratch and not rely on “ready meals”. As “Count Dracula” reminded me in a recent televised adaptation, “you are what you eat” and I believe this to be true. Your food choices affect everything, your overall health, the condition of your hair, your skin, the way you feel, the list is endless…

I also drink at least 2.5 litres of water a day and try to cut out alcohol during the week (“try being the operative word!”). Some weeks are more successful than others. 🍷🍷.

I’ll cover more about my lifestyle in later blogs as I believe my strict regime is helping me live a better life. Everyone has a choice and I can choose to wallow in self-pity or try to make things better through exercise, diet and weight management. It’s sometimes difficult to motivate myself to exercise, especially on high pain days or during flare-ups. BUT, and here’s the thing, it really does help, even on days when the side effects of AS kick in such as chronic fatigue, a topic that’s so big, it needs its own blog.

With my journey to self-help underway, my fight against Ankylosing Spondylitis had started. I have since acquired 3 more autoimmune visitors, just for good measure – Purpura, Raynaud’s and Ulcerative Colitis and, as I eluded to earlier, there were some major hurdles along the way, one of which I will discuss in my next blog.

My body may be experiencing technical difficulties, but I live my life in constant re-boot mode.

Thank you for reading my story, until next time xx

Following my diagnosis and follow-up consultation, Dr Google became my focal point.

“Don’t confuse a Google search with your Consultant’s medical degree” a great sentiment and one I should have abided by. However, I didn’t, and Dr. Google became my worst enemy!

Everything that was ever written about Ankylosing Spondylitis that had a negative connotation, I could recite. The first 3 months were quite tough, coming to terms with a diagnosis for a condition you had never heard of and can’t even spell was difficult. It doesn’t sound very trendy either, “Ankylosing Spondylitis”, it created a vision in my mind of twisted, knotted bones and made me think of a dead tree.

Dr Google convinced me I would suffer from every symptom associated with Ankylosing Spondylitis. The ones that worried me the most included:-

Iritis – I had already had Iritis 3 times so I was convinced I would end up blind and most certainly in my right eye
Damage and restricted movement of my muscles and bones as the disease progresses. With some people it can result in severe disability and very limited movement in the spine and “some people” was obviously me.
Chronic fatigue. Dr Google told me that this was caused by inflammatory markers called cytokines (whatever those are). Apparently, they are circulating in my body and fatigue is one of the more common symptoms of AS. Tiredness may get worse because the body is using a lot of its energy to keep this inflammation at bay. The effect can leave you feeling drained of energy. I was pretty drained already, so I envisaged this getting worse.
Heart problems – “some people” (definitely ME) are at an increased risk of developing heart related issues.
Osteoporosis is common in people with AS. As if my bones weren’t messed up already, Osteoporosis makes them less dense than normal. I guess my age was also a factor so I was bound to get that!
Intestinal tract diseases
Cauda Equina Syndrome (common in people who have AS) and can lead to paralysis and other severe issues. The condition usually requires emergency surgery; GREAT, look forward to that one!
Amyloidosis – caused by the build-up of a protein called amyloid in the organs, amyloidosis can cause symptoms such as weight loss, and tiredness. Well at least the weight loss will balance out the weight gain from the medication!
Nerve damage, such as tingling in the hands and feet
Raynaud’s phenonomen
Purpura (forget wearing sleeveless dresses) and more on Purpura in future blogs.
The list goes on………

Dr Google also turns up at night when you’re asleep to remind you about them just in case you’ve forgotten. I have since been diagnosed with some of the above, but not nearly as bad as my imagination had led me to believe.

In addition to Dr Google, I also had problems at work. At the time of diagnosis, my husband Jamie and I were 5 years into running our own business. One of the reasons I had been referred to rheumatology was a deep pain in my lower back. Sitting at my desk had become very painful but, as my job involved sitting for long periods of the day, it was becoming a challenge. I had to rethink my entire office time to stop me constantly whinging about the pain.

Taking the prescribed medication was also difficult to accept. I did learn quickly that the yellow tablets, Sulphasalazine, stained our light oak dining table when you spilled water over them. Dr Google was also very helpful highlighting their side effects too, particularly the weight gain and hair loss.

Those 3 months were not great. It was also winter; my least favourite season and I have since observed that my pain is worse during the colder months. Often in the summer I am pain free for 2-3 months and I don’t get Raynaud’s which is also a bonus.

Eventually I concluded that “Dr Google” wasn’t doing me any favours and I needed to speak to a professional to source answers to the questions my “extensive” research had uncovered. Before I move on, I want to point out that I am very proud of our NHS and I am extremely grateful for the care I receive today. My Consultant Rheumatologist at the Royal Surrey Hospital is superb; however, they are time constrained which I completely understand so I decided to go for a one-off private consultation. With a private appointment, I felt I could take my time and go through my questions slowly to make sure I understood the implications.

Jamie did all the research and found a superb match, a practising Consultant in Rheumatology who also worked at the Defence Medical Rehabilitation Centre, Headley Court, Epsom. Amongst other things, he helped our Army personnel who had serious rheumatology challenges cope with army life.

Exercise has always been a big deal to me as it helped with my pain. The Rheumatologist Jamie found was also heavily involved with the Faculty of Sport and Exercise Medicine UK which has a critical role to play in improving the health of the nation through physical activity. For me, the fact that The Faculty concentrated on setting the highest standards for Exercise Medicine, Musculoskeletal Medicine and all aspects of Sport Medicine was a big plus. I was convinced that exercise, a strong mental attitude and a good diet were going to help me more than Dr Google and tablets, but I needed confirmation.

My next blog will cover the consultation and the start of my journey to self-help….