As Brits, a national pastime seems to be complaining about the weather; it rarely seems to please us! One minute it’s too hot, the next it’s too cold and gloomy. When it comes to Lyme disease and some other chronic illnesses as well, the weather seems to play a significant part in how sufferers feel.
We wanted to get a sense of how the weather affects those in our Online Community.
Some of us (myself included) jet off to grab some extra sun during the summer months in the hope that dry heat will help to prevent flare ups in symptoms. Some people have even bought, or considered buying, a property abroad to escape the cold and damp British winters.
Others prefer cooler days and go in search of shade during the summer. This can be hard for those who love the sun but whose bodies have become heat intolerant since contracting Lyme disease.
Some Lyme disease therapies actually involve heat, the theory being that the bacteria cannot survive high temperatures – and killing the bacteria can cause die-off symptoms. I get far more head pressure and gastrointestinal symptoms when I am in intense heat whereas before becoming unwell, I was able to sit out for a solid 8 hours in 40°C heat during my family holidays to Turkey. Now, I can hack about an hour before I find myself retreating to the shade as I tend to feel dizzy, weak, nauseous and achy.
Temperature dysregulation makes packing for trips extremely challenging and even deciding what to wear on a daily basis is hard…
Especially as my clothes always need to be loose because of skin rashes, itchiness, muscle and joint pain. Even if I am heading to the airport to catch a flight to a warm country, I have to prepare myself for the powerful air-conditioning at the airport and being blasted by cold air on the plane. I have to ensure that I have something warm covering my legs and a thick jumper on too. Once on the plane, I find myself asking for blankets and borrowing my family’s clothing to keep me warm! Whilst everyone around me remains in their shorts and t-shirts, I am the girl doing a quick change in the airport toilets upon arrival because I have gone from shivering uncontrollably to sweating buckets as soon as I step outside the airport terminal.
Here are a few experiences from the Online Community:
‘The sun sets my symptoms off. Also if there is a draft or windy sets them off.’
‘Damp rainy days are definitely worse. Personally, I love the sun and the hotter the better.’
‘I feel like I’ve turned into Goldilocks! I don’t like extreme changes. Too hot and I feel lethargic and dizzy. Too cold and the bone pain becomes unbearable, it has to be just in the middle.’
‘Heat totally drains me and leaves me barely able to function.’
‘I feel very drained and almost drunk with the sun in this country, but my muscles and joints feel better. When I went to Greece all my symptoms improved…rainy damp days here make my pain worse and my chest becomes painful and I feel wheezy! It’s like I’m struggling to get air.’
‘Most of the time I am very cold. I take a hot water bottle to bed all year round. I have high levels of pain all the time. Pain wakes me at night. But in Mallorca in June, I slept soundly and my pain levels were lower.’
‘I am a lot better in a warm, dry climate. I am in pain all the time with small fibre neuropathy- it’s like having electric needles digging into my bones, all the time. But the damp weather and any kind of ‘heavy’ weather makes it much, much worse. I am always better somewhere hotter with clean air or sea air.’
‘Winters are HELL. I’m seriously photophobic, perhaps worse than many, and the low sun is just hell. My eyes are deteriorating rapidly. I always wonder how the hell I will get through winter, and I’m far worse this year.’
‘My daughter wears thermal socks and gloves much of the time except when it’s over 22 degrees. LIGHT is particularly troublesome for her eyes and headache. As she’s primarily ‘confined’ to the bed, we have blackout curtains and as little light as possible in the room or coming in through the door. When going out in the wheelchair, she needs the biggest/darkest sunglasses possible, a hat/cap and probably a hand covering her face for good measure (if the sun’s out).’
We can’t control the weather but there are various coping strategies we can try to help deal with weather-related symptoms. What works for you?
Sophie Ward.