Category Archives for "Spoonie Life"

posts about life with a chronic illness

Are You an Unchargeable or a Spoonie?

Are you a chargie or a spoonie BLOG

People often wonder what we mean when they hear us talking about spoons or that we are unchargeable. These are words I never used before joining the world of the chronically ill and disabled. In this post I will try to explain the meaning behind these terms and which one I identify with most.Continue reading

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Don’t Do Your Best, Do Less

Avoid the boom and bust cycle BLOG

This might seem like a strange motto for the new year, but before you decide I’ve lost the plot, let me explain: I have Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis or ME/CFS. It’s main characteristic is Post Exertional Malaise (PEM). Feeling really ill, weak and exhausted after any physical, emotional or mental exertion.

This means brushing my teeth, getting excited about a visitor coming or writing this post is exhausting and will have consequences in the form of a variety of symptoms.Continue reading

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Christmas 2016

Had a lovely quiet holiday weekend, but did enjoy my first outing in a couple of months on Christmas day. Was super blessed to have such understanding and considerate friends and that the Lord gave me just enough strength and relief to be able to really enjoy the day! Praise God!

Our friends came to pick us up and brought us back later in the evening. We got to spend a quiet and fun evening with the 2 of them in their new flat. There was a wonderful roast dinner of a Cornish Game Hen each, stuffed with an incredibly good wild rice stuffing. Green bean casserole and freshly baked bread were also on the menu, as was homemade mulled wine.

Although I’ve been in bed for the last couple of days since, today I felt quite good generally. Just my hips and coccyx tried to kill me each time I stood up. So much pain! I washed a few dishes this evening and tried to make a rice salad for dinner, had to stop and get back to bed in the middle as I got so weak and dizzy and felt I would collapse… Of course my sister finished off the dinner for us. So glad to have her here!

Then by 9-ish pm I was utterly exhausted again and had to lie down. I think I managed to fall asleep by around ten and slept for only an hour. Woke with the left side of my body numb and tingling… Like Pins and needles on steroids. Left arm and leg. Dead. So my sis suggested I sit up in bed to help the blood flow back to my limbs, it did help, and here I am at 2 am still awake…

Last night I also lost feeling in my left leg. I also had to sleep by ten and slept until ten this morning! Struggling to wake up in the mornings, not like me to sleep so late in the day. My mind has been all over the place too. Hard to form sentences at times, I’m forgetting words, or what I’m saying mid-sentence, it’s frustrating. Safe to say I’m in some sort of flare within a flare.

Spending my time in bed colouring, surfing Internet, Netflix and daydreaming… Also known as recovery mode or what I like to call vegging. Minimum exertion activities. And by minimum exertion I mean activities that require little to no brain or body exertion! Typing is exhausting. And I’m getting sleepy again too… By the way, I haven’t showered in days, so I haven’t taken any new photos in a while.  I’m hoping tomorrow can be a shower day!
Sweet dreams all. xx

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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.

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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!

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Reflections on Faith through Chronic Fatigue Syndrome

Reflections on faith BLOG

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…

He carries our burdens

He carries our burdens

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.Continue reading

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When unforseen problems force me to go out despite severe ME/CFS

autumn leaves

Had to go out today, needed to send off some paperwork, but my printer ran out of ink again – just changed it about two weeks ago! I needed to print off a load of sheets, so I had to take a bus to get that done at one place, then off on another bus to find a post office to send it.

By the time I got to post office my legs were not working properly anymore, it was like I was wading through lead or mercury, let’s just say Nutella (have to keep things positive!). I had shooting pains all over the place, so was reduced to waddling at snails pace (seriously) at one point I thought I wouldn’t make it across the road, but the bus driver was patient and waited for me to get safely out of his/her way.

Been lying in bed for hours now, but my body is done. I feel like I’ve done an hour of intense cardio. You know how you feel when the pain from your first workout in months sets in the day after and then you have to work out again on that very stiff and sore second day? That’s how I feel. Nothing like aching jelly legs to remind you why you never leave the house alone anymore! I did buy some chocolate en route, so it wasn’t all bad.Continue reading

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