Guide To Getting Through Lockdown With AS
If you've been online recently you may have noticed that there’s currently some kind of pandemic going on. As most of us with ankylosing spondylitis are taking immunosuppressant medication to get by, we are extremely vulnerable to the virus (isn't it just the gift that keeps giving?!) Like many people with chronic illnesses, the UK government have asked me to stay the hell away from society until further notice. Supposedly not in a rude way but in order to keep me alive, which I suppose is fairly considerate.
I have been shielding alone in my apartment for almost a year now and so far have managed to avoid any big AS flare ups or mental breakdowns. I consider this a massive success. So for anyone out there who may be struggling, I thought I’d share a few tips on how I've managed.
Keeping active plays a vital part in preventing pain and preventing our spines from fusing together. Being locked up in a room is not the ideal situation, so we must be inventive with how we keep active. I start my day with some physio stretches for my back and legs. Sometimes I will need a bath beforehand to loosen me up if I have woken up feeling stiff. If you do not have a stretch routine, the NASS Back to Action app has a load of great exercises you can look up and try out.
Achieving a healthy amount of steps each day is a challenge when living in a 12 step wide apartment. I sometimes do a few laps around it while watching something on my iPad (and taking the odd break for dizziness). I try to get extra steps any way I can. I sometimes walk on the spot while washing the dishes - this creates a fair amount of extra splashing but it’s worth it.
My best investment by far has been a set of resistance bands that I use to work out. I find them excellent for strengthening my muscles while not being hard on my joints. There are plenty of videos online that demonstrate the huge variety of exercises you can do with them; many can be done sitting down.
If you’re lucky enough to live somewhere with a safe outside space, do take advantage of that by all means. Unfortunately my part of London has about 12,135,473 people per square meter (not an accurate stat!), so I opt to stay inside.
Making sure you are eating well is more important than ever. Use this time to experiment with recipes that use natural inflammatory ingredients like turmeric or ginger. I know the world is going crazy right now for banana bread but there are a lot more nutritious things to try. I am currently trying a vegan diet to see if I feel any benefits, but I am only a week in so it is too early to tell (I'm missing cheese already).
Keeping your mind positive and occupied is the most important thing. It's so easy to feel lonely or that your time is wasting away. I try to make the most of every day by giving myself a checklist of five things to do when I wake up. I tick them off throughout the day so by the time I go to bed, I feel like I've achieved something. I decide on these things after I’ve woken up so I can take into account how I feel that particular day. AS is way too unpredictable to plan in advance. If I'm having a bad day then I will set myself some easier things such as watching a film on my watchlist or having a bath. Knowing that these are things that I’ve wanted to get done or benefit from in some way still make me feel I’ve been productive.
You're not alone
The current situation makes our battle with AS a whole lot harder but even if you are away from people you don’t need to feel alone. Look after yourself and reach out to loved ones to check in on how you're all doing. If you're worried about bothering them, there is a huge community of amazing AS warriors online that I have connected with during these times. Many of them have helped me greatly and I'm sure they would do the same for you. Plus my DMs are always open for a chat (I'm not that scary-promise).
Normal life will resume one day (hopefully soon), so stay positive and keep yourself healthy so you are ready for it when it comes.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?