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Even if there isn't a cure or an acessible effective treatment for people with Long Covid there are things that can make a difference to our quality of life. Here are my 5 things that make life a little easier. Please note there are many different presentations of Long Covid and what works for one might be a disaster for another. So discrimination & care is needed. All of these can make good gifts too.
Image credit: 'Hibernation' Bryony Bensly
1. Electric Blanket
Not only does an electric blanket bring comfort & ease it can help blood flow & muscle aches, cramps & pains. There is something quite old fashioned about an electric blanket. I remember running (yes i could run once) to bed between the fire & the electric blanket underneath about a hundred blankets through ice cold rooms. This was before the days of central heating & duvets! But for Long Covid I've found the heat a god send. Although it worth noting that especially for those with an MCAS presentation heat can be a trigger & not at all a pleasant experience. Yet although I do have do deal with rogue histamine exploding granules heat if monitored is brilliant. I suspect that a tendency for blood flow to disappear from my brain without warning (or Orthostatic Intolerace or just plain rude) means that heat helps. I've found this to be true for hot baths & a sauna gives me a few more hours upright in the day. Yet again the juggling of the heat line between help & hinder must be paid attention too and severity of symptoms.
2. Foam Mattress Topper
I seriously don't know what I would have done without a thick foam mattress topper. Like many people with PEM/PESE I have to be in bed for considerably more that most people think sane. Yet this leads to problems with sore joints & pressure, which can bring even more misery. A mattress topper has kept most of these issues at bay. It would even be a top tip for the GP or even a Long Covid Clinic? Do you have a mattress topper? Hell even - would you like a mattress topper? This points to a very relevant question. Why aren't we receiving occupational health? With even what has become rarer than a phoenix egg - home visits.
Many with energy limiting illnesses & PEM including ME need specialist care. It's just total crap that this aspect of our care is neglected.
3. Red Light on Door
If you have family or live with others keeping boundaries whilst in a crash zone or rest period can be tricky. Not knowing when or if you will be disturbed can destabilise any attempt to resurface. Placing a red light on the door that you can turn on when you don't want to be disturbed sends a clear signal that you are a no go zone. A Do Not Disturb sign can also be effective. I did try to find one that worked via remote control through a door but wasn't successful. Yet if one is severe this can be a lifesaver. The colour can also be adjusted to give you a non-verbal, concrete way of stating your interaction ability. Orange for short visits ok, green for Ok for chats or however one decides to catagorise.
It is important for those around us to realise how much we can handle without deteriorisation. This is all part of keeping our sensory stimulation low. Many don't understand that it isn't just physical exertion that is detrimental it can be just exisiting. The brain requires a huge amount of energy in its sensory perception & this can push us into PEM/PESE easily.
Other tips for keeping sensory stimulation low are sunglasses, zero light eye masks (I live the Manta ones) & ear plugs.
4. Audiobooks
I do actually feel that audiobooks have saved me through my long period of severely limited function with Long Covid. They are so easily available now. I remember having ME in the 00s & all that was easily accessible was Radio 4 - it was me & the Archers for quite some time. Getting audiobooks from the library was a no go & they were expensive to buy. Yet now there's a marvellous maelstrom of them. They aren't for everyone as some find the sound to stimulating. Each person with ME & LC sensory coping landscape is different, some find visual ok some not. Personally TV feels like I'm being sensorily assaulted & after over 2 years I'm just about able to watch some on my phone. (Hello The Crown at last!)
An audiobook subscription can make a wonderful gift. Yet there is also Calibre Audio which is a charity offering free audiobooks to those with disabilities & Long Covid & ME count. Local libraries often have a free service too. YouTube can also be a hidden gem to find audiobooks too. I'm not going to mention the A word as they kicked me off for listening too much even when I explained my disability - b*stards!
Finding somewhere to go or disappear to whilst mainly immobile can be difficult but audiobooks have kept me company through the worst of times & descents into the fog so thank you all those authors & narrators out there for widening our universe.
5. Hot Tea Flask
So, personally I'm not very good without hot tea. Yet with Long Covid, especially if one is in bed for significant periods of time a hot tea jug can be a life saver. It also helps one keep hydrated without having to negotiate stairs or drain energy output. If you have some caring for you it can be a good idea to make a list of your basic care needs that you need on a daily basis. We should not underestimate the many wonderful carers whose lives have also been impacted by loved ones developing Long Covid. What are some favourite tea flask recipies? Big fan of elderflower, ginger & honey. Marigold & lindon is another top tea. Caffeine for me doesn't work but having a favourite tea range can be supportive & nourishing. A caffeine alternative that works here is dandelion root coffe with lots of cashew milk. People with Long Covid often have new dietary intolerances & MCAS so do be careful with any new additions.
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