The photo totally resembles my better days , bad days look 😂
If I said I’m tired of trying to find a balance that’s an understatement. Literally feel like I can’t do anything without a consequence.
It feels like torture. I don’t go out in the sun because it causes rashes, I stay in doors and my hands swell and start to feel like cardboard! Then my feet I get really deep pains that feel like burning!!!!
I don’t know how to manage this because everything feels like a trigger. I am Due on so I do get an increase in activity around this time anyhow . How am I meant to be a proper mum with all this 🤮
Does anyone else get these symptoms? I feel it’s maybe nerve related
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Lisalou19
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come visit me in Scotland, sun is not a problem here as it keeps raining and even when the rain stops it's cloudy. I will swap with you as I feel so much better in the sun.
Heat is tough for me too I am lucky though that most of the us does have Ac. I get migraines with humidity so air conditioners are a life saver. I have a terrible time when we visit family in the summer. Last year it was brutal and hard to sleep when we were visiting the uk. Would a portable dehumidifier work to keep the house less humid, which feels cooler.
Last summer in the uk was awful. Far too hot. I can tolerate heat if I’m in water . Thinking back on it for years I’ve always soaked my feet in cold water when it’s hot x
I find this interesting. I am 51 now but when I was about 25 I developed a real heat sensitivity. I spent my childhood and early adulthood with no issues. Sunbathing, swimming at the beach etc. Then I just got to a point that I couldn’t be hot. Not inside or outside. Terrible headaches, weakness, light headed. Looking back I think this may have been the beginning of all of this. I could only be in the heat or in a hot place if I was in water or dousing myself with cold water.
Just never heard anybody say this. Most of us discuss sun sensitivity which I have too now but not heat.
That’s interesting TwoH...I’ve always been prone to sun-stroke but over the last 2 years, if I’ve been in a hot building, I feel sick. I can’t have a hot bath anymore as it makes me dizzy and weak. I haven’t heard of other people struggling with indoor heat so it’s interesting to read your experiences
I get rashes when I have hot showers. I don’t feel it’s the sun that is my problem it’s heat!!! I start getting strange sensations mainly in hands and feet along with swelling.
For as long as I can remember I’ve alwsys had to soak my feet in cool water and usually will use a garden sprinkler to keep me cool x
Ditto. I haven’t been in the SUN for five years now since my diagnosis! In the beginning I was so keen to do everything I was advised I didn’t consider this would be long term. Taking all the new medications as prescribed, wearing factor 50 suncream, avoid direct sunlight, wear long sleeves and trousers when everyone else has shorts and swimsuits, wear a hat when you go out even on cloudy days. Plaster every visible skin patch in factor 100 suncream even on cloudy days! I even bought a factor 50 umbrella on Amazon.I used to sit at the back door on a stool observing my five year old daughter playing with family & friends feeling I was missing out on so much. I remember sitting in play park with umbrella getting curious looks.
I had to minimise the heat effects and sun rays at home as even if sun shines in my window my rash explodes. I needed a plan to make the most of it. When I medically retired, I bought a summerhouse with sliding doors. This allows me to enjoy my garden & be part of the family when they shoot hoops and play football and chase the dogs. I have heat resistant & UV protection blinds which slide up & down easily depending as the sun moves. Having the door open let’s in cooler air but on really hot days I have a fan and handheld fan with a water chamber. Got it on amazon only tenner. Also I put one litre plastic bottles of water in freezer. Very cooling to roll on soles of feet or place on face arms and legs to cool down. The opposite of a hot water bottle really. I know I was lucky to afford a summerhouse but I also got a colourful UV sail on Amazon which I placed in most shaded part of garden, less than £20 again on Amazon. It attaches to hook on wall or just tie with heavy duty rope. It actually really reduces direct sunlight and heat considerably and creates great shaded area. I also love to sit with my feet in cool water. Always helps heat attacks.
My daughter is now ten and doesn’t remember my bad days or me not being able to do outdoorsy activities. We love board games ,card games ,arty things and I love to watch her outrun my hubby in the park from a distance. They go biking three times a week and I drive to meet them with snacks and drinks so I still feel part of it. She just sees this as our normal.
My hands swell too. If you read my previous posts I have a great OT and all my tips are in that post. It really will help if you try. I miss my old life and haven’t yet embraced my Lupus life but am doing best I can to adapt.
By the way I look like your bad owl day most days! 😂 My daughter is my rock and makes me laugh every day. I have had to learn to appreciate the simple life like the days I can dress and shower myself, do school run. It takes time but you will get there slowly. Life activity balance is hard when you’re a mum. Pace and prioritise tasks. Even school run and homework exhausts me. Keep freezer well stocked with bulk meals. My family help cook big batches of dinners and I freeze. It’s so much easier to defrost a home cooked meal than shop and cook.
I hope this helps a bit. Good luck and sending cooling hugs your way.
Such an uplifting post to read how you have adapted to your illness. I know you must suffer, but your love of life and determination to be the best mother you can be is inspiring. Your daughter is the lucky one.
I guess acceptance is key so that you can make the relevant changes.
I just read your other post, thank you for directing me there.
My hands are so bad, and if I walk for say 5 minutes with my hands down they swell . I also get a lot of tremors in my left arm and hand. Does this sound familiar with you? Deep down I worry it’s ms! X
When my hands hang low they do swell and also when I first wake up each morning. I’ve found that since I began to wear the gloves the swelling seems to shift elsewhere. I wear the soft silk feel gloves indoors and thermoskin out doors. My hands feel as they have been superglued flat and stiff! They are very painful first thing in morning and cold weather but the gloves seem to reduce pain and swelling greatly. I don’t get tremors but twitches in muscles upper arms. Have you seen a doctor? Once you are cleared by a doctor a hand specialist OT can really help with improving function. My hand X-ray was typical of soft tissue swelling but doctor would be best to confirm your cause and refer you to OT if appropriate. I also have a small bean bag which is actually for my iPad but I rest my hands on it when I sit.
I really hope it settles down for you. I’ve had such a good response to the gloves and other aids as mentioned in my post.
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Nice to meet you, everyone. 
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