Tag Archives for " Road to Recovery "

Update on my itching and ME/CFS flare

Low spoon warning

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

How I’m tackling this ME/CFS flare

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.

The heavy ME/CFS passenger

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

My wheelchair and I: shopping with the family

wheelchair in nursery

I actually left the house this week! Leaving the house is not something that happens very often when you have a chronic illness as debilitating as ME/CFS. Months can go by without seeing the other side of my front door. I have reached a point where I’m able to walk around the house daily without causing too much payback, but going out is still so utterly draining that it usually takes me days to recover.

This week I was able to leave the house for the first time in months. It’s my mum’s birthday today, but we celebrated a little early as our parents were here for their weekend. We went shopping together for the first time in ages!

It was a gorgeously sunny day, so I got dressed in a pretty floral dress and hopped on my wheelchair where I stayed all day. Knowing how taxing an outing is and how much sensory stimulation affects me, I tried to prepare as best I could:Continue reading

Too much of a good thing

If you’ve been following my journey, you will know that I’m currently experiencing an improvement in my condition thanks to the ketogenic diet I started earlier this year.

I thought it would be a great opportunity, having just passed international ME Awareness Month, to continue raising awareness and funds for ME research by setting myself a challenge.

Considering that I was almost completely bedridden for quite some time until last month, this is quite a huge deal.

I decided 1000 steps was a good place to start as that was what my fitbit was indicating. I have recently moved to a new home and through the packing and unpacking, I was reunited with my fitbit.

I wore it for a few days and noticed I was nearing 1000 steps a day, somewhere between 700 and 1000. I was so surprised and super pleased with the progress I was clearly making.

I started my challenge on 1 June 2017 and have managed to hit my target almost every day!

The idea is to aim for 1000 steps a day to raise £1000 for ME Research.

By keeping track of my progress with the fitbit and its app on my phone, I have noticed some behaviour patterns are emerging.

This past week I have managed to stay above 1000 steps daily, until yesterday. The problem was, as you can see from the image above, I overdid it on a few occasions and the flare day, yesterday, was inevitable. Continue reading