Category Archives for "My ME/CFS Journey"

Reassessing My Condition, Setting Realistic Goals

Time to reassess my condition ME cfs, ChronicallyHopeful

It's time for another personal update. Time to reassess and set realistic goals. This month has been so much harder than I anticipated. Somehow I imagined that summer would bring better health and more energy along with sunnier days and warmer temperatures, but it hasn't really. I have spent so much time in bed!

Despite this, there have been some exciting things happening here. Exciting for me anyway, not sure anybody else would define it as such! Haha... 

  • I got new glasses and prescription sunglasses (or was that in May?)
  • I got back into painting after a month off (slowly but surely...)
  • I made a few crafty things while in bed, to brighten my room (will show off soon!)
  • My parents bought us a bunch more mini cacti which I love! (see photos below)

There are many little things that have brought a smile to my heart even though I have been quite weak and flaring lately. It's important to focus on and cherish those little blessings that we so often overlook in the chaos of everyday life. Cultivating an attitude of gratitude. It really makes things easier to handle even if it will never cure our ills or heal our pain, it can certainly make life more pleasant!

Continue reading
Share this post:

A Day in The Life of ME

A day in the life of ME BLOG

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.

Continue reading
Share this post:

Thoughts On Needing A Wheelchair At Age 35

Needing a wheelchair at 35, ChronicallyHopeful

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.

Continue reading
Share this post:

My First Outing in 5 Months

First outing in 5 months BLOG

I am so happy to have visited the beautiful Lake District this holiday! 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.

Continue reading

Share this post:

Coping with Christmas 2017

Christmas 2017 BLOG

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 us, 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

Share this post:
1 2 3 6
>