Summer 2019 has generally been good to us but this winter is set to be another harsh one. With the rollercoaster of the seasons and a climate that is continuously changing, how is our health being affected? Many of us take holidays abroad in order to chase the sun and top up on vitamin D boost, whilst others seek out the shade. It can be hard to find a happy medium, especially during a warm British summer and I wanted to ask LDUK’s Online Community members to share their own experiences and see how weather affects people as Lyme can lead to both heat and cold intolerance. Here are some of the responses:
‘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.’
‘Always cold and need layers of clothing and fleeces and body warmers even in the summer. Worse in the winter. When it’s windy or raining, I can’t stand it. My head is continually buzzing. When I try to get out and it’s hot, it makes me worse I tend to feel more like I am on fire or burning on a bonfire and then I have to hold onto anything I can find as my breathing is affected. I also feel unsteady on my feet and my nerves are always on supercharge. I put up with these symptoms on a daily basis. Same happens when I go to bed. I’m burning up one minute and then freezing cold the next, with supercharged nerve pain and whenever I eat something hot or cold same things happen to me; body spasms in my torso legs and back and breathlessness every single day. I have to just lay in my bed and pray for it to stop.’
‘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. Oh, to have the dosh to buy a place in Mallorca. I was so comfortable there. I’ll just have to buy lottery tickets and hope for a win.’
‘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.’
‘The pain and pressure in my head and in my eyes is unbelievable. I can hardly keep my eyes open, they just want to close, won’t open fully, and the light hurts even with my eyes shut.’
‘I have a collection of about 10 visors (to coordinate with my outfits when out socialising or y’know, attending doctor’s appointments, supermarket visits – the highlife!’
‘It doesn’t matter if it’s the lights on the ceiling or from the window, it’s any light. And I can’t cope with contrasts at all. Like watching TV with the lights off would be torture.’
‘I’m so aware winter is closing in and I am dreading it. There is barely enough light in the day for me to function. The days are strained even before having to start using artificial light in the evening. Daytime can give me some relief in summer when the sun is behind me. In winter there is no relief day or night. It’s just pain and it’s hell. I have no choice but to spend a lot of time just sitting, with my eyes and head under pressure, and feeling unwell ….winters seem to go on forever. Everything is a strain, it’s like my eyes get overloaded within 10 minutes of getting up, and all I want to do is sleep and wish my life away.’
‘Annie 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). Maybe she’s seen as a fugitive, a celebrity…but I suspect some sort of ‘mental case’. This used to bother me but not anymore, apart from of course the fact that her appearance is due to this nightmarish illness.’
We all suffer symptoms year-round and often people don’t see a pattern or relate them to the various seasons until we really ‘check-in’ and take note of when we feel at our worst. We need to be more alert, more honest and begin tracking our symptoms so we become better equipped and can manage them more effectively. We must take control of our health and really invest the time and energy to take notice. Tracking is easy. It just involves a reminder and a daily note. Sometimes as our health changes, we will react differently to different climates but if we make a note we can begin to become more in tune with our bodies, resting when we need to, seeking medical advice when we need to and finding ways to manage our reactions to the seasons.
Personally, I do better in the sun. How do I know this? I track my bloods at the local doctors’ clinic, every two weeks religiously. I take supplements all year round, but my bloods don’t improve. As soon as I have some sun, they improve in many ways. I don’t actively sit in the sun as I tend to over-heat and I can’t cool my body down. I also get bad reactions as my body goes into fight mode. Sitting in the shade and taking little breaks here and there in the sun is best for me. I have only found this out through trial and error. My white blood cell count and platelets improve.
For me, the cold weather is when everything really begins to get out of control. My immune system begins to nosedive and everything seems to shut down. The colder temperatures really do make me buzz with pain. Symptoms take over as my body begins to go in freeze mode. Some days I can hardly move and I am frozen to the spot. I can’t warm up and all I seek is relief. Movement is beyond painful and I wonder how much more I can take as it also takes its toll on my mental health. Everything is dark, you feel like you are in a dark place mentally because you are not coping with the pain efficiently. During these freezing cold, dark months, I try to get away and find somewhere with a little sun and a little warmer climate. Not sizzling hot – nice and warm and somewhere with a constant and steady temperature, with blue skies to raise my mood.
It isn’t just the physical symptoms which are affected by the weather. Our mental health which plays a MAJOR role in our overall health and well-being is just as affected. Once we know what works and doesn’t work for us weather-wise, we can then assess how we can help ourselves. This may involve making sure we can get some winter sun, investing in a sun lamp, upping our winter saunas, changing our supplement protocols, finding shady spots, or taking detox baths. It is always helpful to hear from others what they are going through and how they cope with changes in the weather. However, our bodies are unique and each person’s battle with a chronic illness is unique. Listen to your body. Be savvy. Track your good times and your flares. Be kind to yourself. We learn on the job. Knowledge is power and we continue to learn more and more every day. Never feel guilty or ashamed of your symptoms. You are a warrior and doing an amazing job. Listen and engage with them. Use them as messages to help you and guide you through the seasons.
As we wave goodbye to summer and wave hello to autumn, we can look back on the past season and reflect. We are warriors. I hope this post helps to open your minds to more tools you can use to cope with changes in temperature. Understand that YOU NEVER FIGHT ALONE. Our symptoms can be weird and often too complex to explain but we are here for each other and YOU ARE NEVER ALONE. I can’t stress that enough and that is why your engagement and feedback on these blogs are so valuable to the Community. Your bravery brings inspiration and comfort to so many.