Archive
Yearly Archives: 2016

International Day of People with Disabilities

December 3 is International Day of People with Disabilities. It’s a great opportunity to raise awareness and make some noise all over the internet (and in real life) if you can manage it.

The message I want to get across this year, is that not every disability is visible.

Since joining the world of the chronically ill, I have found that many spoonies (people with chronic illness) prefer to not share their condition with friends and family. They live a kind of double life. Putting on a show of normality, working hard to hide their disability or illness. Often becoming lonely, isolated and resentful toward those who have forced them to live that way.Continue reading

My First 6 Months of ME/CFS

It all started in 2014. I would occasionally get random, migrating pains in my hips, thighs and arms. It was quite painful and alarming. Because it never hung around long, but just came and vanished quickly, I didn’t do anything about it. It wasn’t very frequent initially.

By November 2014 I was in constant pain. At this point I went to see my doctors, but they couldn’t help me. They did loads of blood tests and couldn’t find anything wrong. They were frustrated and had no answers. So they just sent me home with painkillers. Months passed, but the pain didn’t.

Continue reading

Knitting: Bianca style scarf, autumn colours

Bianca style autumn scarf

My second knitting project completed. So pleased with this one! Was so much fun knitting it too. I completed it last night and this morning, once my headache subsided, I added the fringe. Between the dozing off, that is.

Terrible flare this past week, absolutely floored. Muscle pain all over, exhaustion, headaches, joint pains, and this overpowering sleepiness (different to the exhaustion) – all more than usual. But it’s done!Continue reading

I started knitting again!

Knitting, green neck warmer

Celebrating my first completed knitting project since I was about ten years old! I have been trying to knit a scarf with this one ball of wool for years and years, I’ve knitted and undone it so many times over and last night I finally completed it.

One ball obviously wasn’t enough for a full scarf, so it’s been turned into a twisted neck warmer. Not sure what the official name for such a thing would be, but it’s done. And it’s so warm and soft too!

My great gran taught me how to knit.Continue reading

ME/CFS Throwback: a sunny day in November

A couple of days ago we had some gorgeous sun after a few dark and dreary days… Here I’d just got up and was getting dressed when I realised how warm the sun was and decided to sit right there and collect some sunshine D! Only managed ten minutes in that chair, but it was lovely and warm. 

My flat is so tiny, here I’m sitting right in the middle, halfway to the bathroom (top right), kitchen (behind me) and my bed (on the left side where photo is being taken from)… You might be able to see my walking frame standing on the right side of me too… 

I love the sunshine so much, the warmth really brings a sense of wellbeing and eases the aches a bit. Not looking forward to a long winter, but it will make those sunny moment that much more amazing!! 

Hopefully you can’t tell how horribly hairy my legs are or how one has been partially epilated while the other remains fully furry! Just had to stop after three lines up my leg… Take it in shifts. Might do some more today actually. 

I know it’s not necessary, like painting ones nails, but it does make you feel better… Well, it makes me feel better anyway. Still hate seeing how my legs have deconditioned so much, no shape, no tone or muscle, just skin and bones which are now easily felt – it’s grosses me out that I can feel my own skeleton!! lol… But I know that one day I’ll be able to do a bit more activity and rebuild my muscles again. Till then it’s a matter of making sure I don’t lose them completely and then lose the ability to move myself.

So Maintaining movement, however little it might be now, to keep the joints and muscles as mobile and strong as I can now. Without overdoing things and making my general wellbeing worse. It’s a fine balancing act trying not to boom and bust… I tend to do too much and crash. 
So grateful for all the help I get at home (my sis) and through the NHS (my therapist). PraiseGod!

Reflections on Faith through Chronic Fatigue Syndrome

God lifts us up

Three years ago today I took this photo of the sunrise and added the devotional message for the day. Today I’m sharing it as I remember the beautiful image painted in the devotional of how God lifts us up by His strength. On wings like eagles…

Today marks 18 months of this CFS. At least 18 months in this severe housebound state, we imagine I had it milder for at least 6 months before this.

I never wonder why this has happened to me or what the cause is, I only know that God can take it away in an instant if it’s His will to do so (I’ve seen this done, so I know that I know that I know that He can), and I also know that not everybody is healed. And that’s OK too. My faith is completely in the will and timing of the Lord.Continue reading