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 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.
Have you ever opened your journal to find you’ve skipped a whole week of your life? I did that today. I was expecting to open my journal to the next clean page, so I could set up this week’s spread and discovered that last week’s spread was still completely empty. Not only was is empty, but I hadn’t even finished setting it up!
If you have a chronic illness, you can probably relate. Flares can be so draining that you don’t even manage the simplistic of tasks like picking up your book to read, or opening your journal to see what’s on your to-do list. Partly because the book is just too heavy and partly because having things not ticked is hard to accept sometimes. We don’t like all those lists of undone tasks.Continue reading
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