It might surprise you how often people with chronic illness are asked what they do with all the free time they have at home. I think many healthy people have no idea how difficult it is to deal with unrelenting symptoms on a daily basis. I hope to shed some light on this by sharing with you what a day in the life of severe ME is like.
A year ago today I got my wheelchair! I was almost completely bedridden at the time. Walking just a few steps every hour or two just to keep circulation and muscles alive was a chore.
As a family we were house-sitting in the Lake District at the time. It was a long term arrangement, so was kind of our home away from home, but I had been confined to an upstairs bedroom and was unable to get out to see the countryside around me.
I would enjoy, for a few minutes, watching the birds at the feeders outside my window and the gorgeous orchids that adorned every windowsill. Although it was a freezing cold winter, I longed to go out and explore.
As anybody with a chronic illness can tell you, holidays are a stressful time that we often dread. With many more people around, an increase in noise, activity and an abundant selection of unhealthy food choices, it is inevitable that we will experience an increase in unpleasant symptoms and will at some point need to isolate ourselves in order to rest and recover.
I am fortunate to have a very considerate and understanding family who keep noise levels low, TV off most of the time and serve me like royalty so that I don’t have to exert the little energy I have. It is frustrating when you want to join in and help others, but are bound by your condition to sit still and rest for much of your day.
Since May last year, I have experienced some great improvements in my health and am no longer bedridden, but in August, after a day out with the family, I had a massive flare up which lasted months. I don’t think it was just the outing that caused the flare up though, I was also going through a horrible histamine reaction which was exhausting my body. I ended up staying indoors for 5 months before venturing out, just after Christmas.
Prioritising rest and sticking to my low histamine keto diet and supplements seems to be paying off, I had minimal payback from Christmas Eve and Christmas Day festivities, so a couple of days later was able to enjoy a whole afternoon out with my parents! Continue reading
Christmas has changed so much over the years. From huge family get-togethers, to multinational bring-and-share gatherings of friends, to small meals with just my sister and I in my bedroom, to every combination in between! I think it’s safe to say that we don’t really have a typical Christmas tradition in our family.
This year we had a lovely quiet day at home, just the 4 of us. I was doing okay despite having had a bath the night before, I actually managed to spend most of Christmas upright with my family in the living room!
This post will be a recount of our celebration, but will also include tips on how I coped with the holiday chaos.Continue reading
I love Facebook memories. Each day you wake up to find a lovely look back at how much things have changed over the past year. Some people find this depressing or sad, but I love looking back. I don’t find it sad, I find it interesting and I enjoy being reminded of all I’ve made it through and how far I’ve come.
Even if I am still very ill and inactive, much has changed through the years, but it’s only with these reminders that I remember what I’ve gone through, what I’ve tried, what has worked and what hasn’t. It’s a great way to re-evaluate and keep track of things.Continue reading
I was lying in the bath relaxing last night when I felt the shakes coming on… This is what I get for walking to the bathroom and getting undressed. I started feeling a bit of the internal tremors at this point, I imagined it might come to the shakes, and then as I lay in the tub to rest, before washing, they suddenly started up. (see the video clip below)
This is just the start, it then takes over my whole body and that’s when holding my phone, or anything else for that matter, becomes very hard.
It’s hard to deal with these unexpected flares or relapses that seem to come out of the blue.
You end up asking yourself a million questions. What did I do wrong? Did I eat the wrong thing? What did I do yesterday or the day before to cause this much pain? Why am I so weak today, did I overdo it this week? Was the TV too loud? Did I miss the signs and push too hard? Did I get over excited about something?
It can be a bit worrying when you are sure you’ve done everything right, but your body fails you anyway. The key is to not get distressed, because that just makes things worse. Stress absolutely is your enemy. Continue reading
I often see people with ME/CFS writing about how they have spent hours in the emergency room only to be completely disappointed, misunderstood or even disbelieved. They go to the emergency room because they are feeling so weak and exhausted that they don’t know where else to go or what to do, they’re scared because they feel so utterly ill. I understand the fear that leads you to that conclusion, it’s scary to lose control of your body, but it’s often an unnecessary risk to your own health. Let me explain why I think so…Continue reading
It’s been a while since I wrote a personal update. I have recently been extremely drained and weak, so haven’t been very social or active online. My primary focus this month was on my itching. I wanted to try to get it under control as it was really getting me down, much more than my ME/CFS does. I was in tears and so very frustrated. The scratching was utterly exhausting and to top it off, I caused myself a massive ME/CFS flare too!Continue reading
It’s almost noon and I’m still in bed. I just Sat up actually when my sis brought me a nice big mug of decaf with coconut oil and quercetin in. Part of my morning routine now, though I’m starting to wonder whether coffee is one of my histamine triggers, despite being decaf. I might stick to golden tumeric milk instead.
I had been doing so well for so long that I had almost forgotten how bad these flares can get. It can be discouraging when you are reminded so unexpectedly of the horrible passenger you carry with you always.
This ME/CFS might be managed or worked around for a time, but it does come back to show itself from time to time, makes sure you remember it’s still there and just how strong it is.Continue reading