If you’re not living with multiple sclerosis, you may not know the unpredictability it brings. With an illness like MS, people often see you either ”feeling so-so” or ”looking great,” and wonder how you could have a degenerative illness like MS at all.
If you’re living with MS, you know all too well that uncertainty can be a part of daily life. Perhaps you have a “just in case” overnight bag ready for urgent hospital stays. Or maybe your browser is filled with links to check when you need answers fast. You build up, what I like to call, a “security-blanket scenario” for those moments when unpredictability is king.
A few years ago I went through a period of great physical uncertainty, in what later turned out to be a hospital acquired superbug. Because it required immediate hospitalisation, a surgical procedure and a three-week period of recovery, I had to acquire multiple sets of pyjamas, bath towels and enough food in the pantry to feed an army.
There are more mundane surprises to prepare for as well. The noisy neighbour, new neurologist, social services administrator or new beau who just wants to know a little bit more about that illness of yours. So how can you ensure you’re ready?
Information is power
When you’re newly diagnosed, it’s important to learn about yourself – learn what sets off your symptoms, what helps them stay away, and when they start. In short, get to know your body well. Read credible medical information only , as comparing yourself to someone else with MS will not always give you an accurate view into what is happening with you.
Furthermore, create an “in case of medical emergency” list. Add your personal info, emergency contact details, list of medicines, and names and numbers of your medical professionals. Also list any allergies and possible side effects of other medication you might have. Think about keeping the document in your handbag or rucksack, or even stored on your smartphone. Don’t forget to update it every so often! As someone who keeps theirs in their handbag, I can say that it’s proven its worth on many occasions. It’s as valuable as a medical bracelet!
Share, share, share
After being diagnosed with MS, consider sitting down with your closest friend and/or family member and explain to them what they can do in case something goes wrong. Give them a copy of your emergency list, and if you feel comfortable, a key to your house. Disclosing your illness to your employer might not be on your wish list, but there are advantages in doing so, as expanding your network of people in the know can mean a better support system.
Be an “out-of-the-box” thinker
Because MS isn’t a 9 to 5 job, it’s a good idea to find creative solutions to challenges it may bring.
For example, if warm temperatures are affecting my weekly shopping trip, I hang around the fridges and freezers in my supermarket just to cool down. Funny, yes, but also ultra-effective!
Although going to the cinema is one of my favourite diversions, loud and sudden noise and fast-moving, bright images often sets off my sensory pain. One way to make it to the end of the film is to wear sunglasses and put in half-cut ear plugs; they help just enough to keep out bright lights and loud noises while still allowing me to see and hear what is happening on the big screen.
If your balance is not the best, or you want to have some extra energy while exercising, consider doing upper and lower body workouts while sitting on a comfortable chair. You can even do Zumba exercises this way!
Think of it this way: the more surprises life throws our way, the better prepared we’ll be to handle them the next time around.