Updated: Jun 19
Warm weather can be a delight for many, but for many people with chronic illnesses, the heat can be an unwelcome summer visitor. For people with Multiple Sclerosis #MS, Long Covid #LongCovid, Postural Orthostatic Tachycardia Syndrome #POTS or Myalgic Encephalomyelitis #ME / #MECFS, warm weather can sometimes cause a flare up of a range of symptoms such as reduced sleep, debilitating fatigue, increased pain and sensitivities and problems with concentration and memory.
Ciara Breen, Occupational Therapist at The Bri Clinic explains that for some people, the temperature regulation system within the body can be affected by the disease, meaning that seasonal temperature changes can mean a drop in function and increased symptoms. "With a disease like POTS, when warm weather comes along, blood vessels widen, often causing the heart to try to beat even faster to keep up. This disease can also affect the temperature regulation centre of the brain, so the body doesn't get the "cool down" message, or fails to act upon it effectively when it does. Thirst, sweating and blood flow regulation can all go awry, causing a chain reaction of even more symptoms, and the person can feel completely wiped and miserable". In Multiple Sclerosis, a change of as little as a half a degree in body temperature can affect the transmission of messages along the nerves and lead to blurry vision or reduced balance for example.
Some medications that people take to manage their illness or symptoms can also mean that the body is less able to regulate its' own temperature in warm weather. Anti-histamines for example can reduce the ability to sweat. Sweating, and the evaporation that comes from it, is one of the ways the body cools itself down naturally, so a reduction in sweat production might need to be compensated for using one of the techniques below. Diuretics, which some people use to manage their blood pressure are another group of medications that can cause challenges. While this medication helps people get rid of excess fluid, sometimes in hot weather the combination of sweating and increased urination can mean that you can become dehydrated or lacking in certain electrolytes such as potassium. Always link with your medication prescriber for individual advice and never cease a medication without discussion with your healthcare provider. Once you and they know how medications affect you, there may be a simple workaround that can be found for your individual problem.
Ciara’s top ten tips for coping with the heat are:
The classics are classics for a reason! Wear loose, breathable clothing, cover up with a wide brimmed hat and seek the shade when you are out and about.
Dehydration can be a factor in making symptoms feel worse and contributing to exhaustion, so drink plenty of fluids. An iced coffee or cold beer may feel cooling in the moment, but caffeine and alcohol can both dehydrate the body further. If you feel dehydrated, or if you have been sweating excessively, a drink designed especially for the job of hydration such as an isotonic or electrolyte drink may help, but simple fluids like water or juice will also do the trick adequately in most cases. Sometimes people drink less if the drink is icy cold so don’t feel the need to chill it excessively if this rings true for you.
To cool our body naturally, we sweat. As the sweat evaporates it cools our body down by drawing heat away from the body. We can “life-hack” this evaporation process by using a misting spray to moisten our skin, such as our face and arms. These can be bought commercially but a spray bottle can easily be bought in most chemists in the travel section, or even a plant mister will work!
4. Staying Fresh:
While a cool shower or bath can also be helpful, for some the exertion involved in taking a shower can be self-defeating. This may be particularly so for people who experience post-exertional malaise (PEM) as part of their illness. PEM is a key feature of Myalgic Encephalomyelitis, and is also common in Long Covid with around half of those with Long Covid experiencing PEM. Cooling key parts of the body such as taking a cold foot bath or applying a cold cloth to the forehead or wrists can give quick relief without draining your energy further. Managing your energy by sitting down in the shower either using a commercially available shower seat, or just sitting in the bottom of the bath if your shower is a shower over tub option and your mobility is good enough.
We need food for energy, but our metabolism may slow in the heat and our appetite may diminish. Preparing food can also take energy which may be in short supply, and some methods of food preparation may cause us to further overheat, even “summery” methods like barbecues. Microwaving or air frying are some of the least heat generating cooking methods. It may also be worth switching things up in your food routine, so for example switching porridge for overnight oats, or swapping soup for a healthy smoothie.
Do you have a hot water bottle? Fill it with cold water or ice chips and use it as a “cold water bottle” instead! You can lay it in your bed to cool it before you get in, or it can also be a nice cooling option for watching TV or even when working (see below). There are “cool touch sheets and pillow cases that may help and even gel inserts for pillows that you can chill and then place inside your pillow for a more refreshing feeling at bedtime. Cold facecloths or wipes beside the bed can also help. Even if they warm to room temperature overnight, they will still cool you down using the principle of evaporation. Might it be an idea to sleep in another room? If not, then remember it is often easier to keep a room cool than to cool it artificially, so you may find it best to keep curtains drawn or to use a room fan.
Give yourself permission to rest. This is important to remember every day of course, but particularly on hot days. While preparing a healthy meal or going for a walk may be something you usually do to support your illness, it is OK to make a decision not to do this on days where getting overheated will cancel out any benefits. As sleep can also be disrupted, a siesta might be a good idea, or doing a breath-based relaxation can be really helpful on hot days where we can often “pant” in the heat.
8. Work and Activity:
Plan your day and don’t be afraid to switch things up. Move highest activity levels to earlier or later in the day when the temperature naturally dips. We are creatures of habit, but changing up a routine and showering for example in the evening or night time, or chopping the veggies in the morning while it is cooler might be a good choice. If you are working and have a flexible work schedule, you may find a longer lunch break (perhaps with that siesta!) may mean you feel fresher, and more alert, and have a more productive evening. If you need to do something that can’t be deferred or moved to a cooler part of the day, there is some evidence that pre-cooling before exertion can be useful.
9. Cool Kit:
If over-heating is a perennial problem, get to know some products that can help. You can purchase special gel-lined clothing such as bandanas or cooling vests, which can be pre-chilled. Cold wraps can serve similar purposes as compression garments and may be easier to don and doff in the heat. At the desk, if working a wet towel under your feet or a “cool mat” which are readily available from pet shops or online, can help if they are placed under your feet or on your seat.
Be aware of warning signs of heat stroke or exhaustion. Without the usual visible signs of sweating, earlier stages of heat exhaustion may not be noted. See further advice about signs and symptoms at Heatwave Health Advice - HSE.ie
Do you have any other tips to beat the heat? Tell me in the comments below!