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
Living-with-autoimmune 