As we head into a new month I am excited to show you my new bullet journal layout for June! I'll also share more detail about my symptom and mood tracker as well as a layout comparison with previous months.
I cannot believe we are already half-way through 2018, time is just racing by so fast. I only started this year's journal in March, so I don't have 6 months of journal updates to show you, but I will share the 4 months I have done so you can see how my journal has evolved over time.
One thing that can really cause a lot of stress for people with Chronic illness is coping with Christmas and all that it entails. For me personally, Christmas has changed so much over the years. It's changed from huge family get-togethers when I still lived with my parents, to multinational bring-and-share gatherings of friends once I moved to London, and then small meals with just my sister and I in my bedroom after I fell ill, and every combination in between! I think it's safe to say that I don't really have a typical Christmas tradition anymore.
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.
One of the most frustrating and debilitating symptoms of ME/CFS is the shaking and trembling after minimal exertion. Something that healthy people might get after a strenuous exercise. I was lying in the bath relaxing last night when I felt the shakes coming on. This is what I get for walking just a few steps to the bathroom and getting undressed. I started feeling a bit of the internal tremors at that 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