Category Archives for "My ME/CFS Journey"

One of those days, again

Today is one of those days… 
I’ve overdone things this week. Went out to GP on Monday and although I was in wheelchair, it knocked me hard and I then also went into Sainsbury’s afterwards to get my meds, should have stayed in the hot car rather than going with into the busy supermarket, but the pharmacy had a delay in preparing my medication, so we thought the cooler shop would be better. 

Then the next day I somehow almost doubled my step count! Not sure how that happened, I was in the house all day. I really felt it in the evening though, so much pain… Not good. 

Last night my knees were on fire again and today I’m just drained. I didn’t even wake up until 10am! That is unusual. Silly me! I’m always too enthusiastic when I’m feeling good and then I overdo it. I’m sure a full day of complete rest will be good for my body though.

Be kind to yourself, your body works hard, listen to it, nurture and nourish it and don’t forget that rest is a vital part of life! 

No step goals today, just rest goals! 

Regardless of how weak I’m feeling, it’s a gorgeous day again, one can’t be anything but happy on a day like today! 

Hugs, Char

The randomness of ME/CFS symptoms

The following post was originally written in 2015, just a month after diagnosis, but I thought I’d share it for some insight into what day to day life is like with ME/CFS. I was still getting new symptoms constantly and they were all so new and bizarre to me.

Throwback to June 2015

This week I’d say my main issue has been pain. I’d wake up in pain, in the night, in the morning, I’ll have aches all day, toothache, headaches, migraines, stabbing pain, hip pains, light sensitivity pain… All sorts.

I’d still have a bunch of other symptoms, but I’d say it’s been a relatively good week.

I can function in the house with pain. I read, draw, cook, eat, maybe wash some dishes after, and I can rest whenever I need to. I sit down most of the time anyway, praise God my whole studio flat is probably the size of your average bedroom so there’s not much walking to be done!

My left arm is bleh most of the time, feels numb or dead and painful all at the same time, so sometimes I can’t even draw without the shakes coming on. The pain is mostly bearable, but sometimes it gets to the point where I need to drop everything and lie down. And admittedly sometimes I cry… Especially if it’s the stabbing pains in my hips, they’re just horrible! Continue reading

How the ketogenic diet reduced my ME/CFS symptoms

Ketogenic Diet for MECFS

I often get asked what this ketogenic diet has done for me. What benefits have I had? Why should somebody give up those delicious carbs and starchy foods? Are the benefits really worth the sacrifice?

In this post I’ll explain my journey so far. In short, in my opinion, the answer is yes – it’s definitely worth it! Let me tell you why…

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Reflections After Two Years in Bed

As the new month starts, I am filled with joy and anticipation. I love new beginnings, and for me, every new month is a new beginning. So is each new week, really. I enjoy celebrating the ordinary! In this post I want to share some very personal reflections as I look back at the road I’ve travelled and celebrate this new beginning.

Yesterday marked 2 years since I have been able to do any form of exercise that wasn’t just a short walk. My last workout was actually a bike ride. It was Easter break and I was visiting my family in Italy.Continue reading

My First 40 Days of Paleo-Ketogenic Food

I’m happy to report that there have been some welcome improvements after a month on this LCHF (Low Carb, High Fat) diet! As discussed in a previous post, I started this journey into a Paleo-ketogenic lifestyle in February 2017 in an attempt to help improve my current condition. I have quite severe ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) which has left me bedridden about 98% of the time.

Things were looking quite bleak a few weeks ago, I was getting progressively worse, and then out of the blue on day 33, I felt like somebody had flipped a switch and I suddenly could participate in life again!Continue reading

Transitioning to a Paleo-ketogenic Diet

As some of you might know, I have recently started reading Dr. Sarah Myhill’s book, Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis. It’s a huge book, with over 400 pages, and includes so much detail about how the body works and what she believes is happening to sufferers of ME/CFS. I’m so excited about this!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.

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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!

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

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