Category Archives: my experience

When I was in the first stages of my PVF/ME/CFS I can remember having an internet discussion with another sufferer about recovery.  Neither of us knew how far we would recover or how long it would take, but we both desperately wanted to believe it was possible.  I remember thinking that any improvement in my health would improve my quality of life, and I have experienced that all the way through my recovery.

When I was reliably able to pick my kids up from school on my electric bike it was great.  When I was able to shower regularly it was fantastic.  When I could cook meals for my family it was marvellous.  When I started this blog it was wonderful,  when I was able to walk to the end of my road it was amazing. When I was able to go to go on a cycle ride with my family it was fabulous.

Last summer I made some huge improvements, and anyone looking at me would not have known I had ME/CFS.  However, I still felt it was there, lurking.  I still had to be careful about my activity levels, plan activities, say no to a few things and disappear for rests.   This was still the case at Christmas, when I wrote that I was prioritising activities and had declined some invitations.

However, since early in the new year I feel something has shifted.  Now I feel fully recovered.  I don’t feel I have to work around my illness.  I don’t think about it.  I just get on with doing what I want to do, when I want to do it.

I do still take care of myself.  The last 3 years have taught me that’s important.  I’m still doing my Miracle Morning, and I still sometimes rest during the day if I have a busy evening ahead, but that’s because it’s sensible, not because I can’t cope with the evening without resting in the day.

This week is half term and I’ve been having fun with my family.  First was a busy weekend with my siblings and their families, then a day at the Tower of London (lots of standing and walking).  In the lovely February sunshine I’ve done some gardening and played basketball with my son.  Two friends saw me on the basketball court in our village and they looked surprised, but I knew I could run around with my son, come home and carry on with the rest of my day.  No PEM, just a few aches from playing basketball for the first time in years!

So for me that’s what recovery looks like.  It’s feeling healthy again, and just getting on with life.  It didn’t happen overnight, in fact it snuck up me so gradually that I can’t tell you exactly when it happened, but I can recognise the difference.  I’m recovered.  I believe it’s permanent, but only time will tell if I’m right about that.

If you’re in the early stages of the illness, focus on resting and pacing and when you reduce your activity enough you will stabilise, and from there you can improve.  If you’re in the later stages of recovery then keep doing what you’re doing, and tweak when necessary until you reach 100% recovered.

Recovery is possible.

When I was at a really low point with my ME I can remember lying in bed, crying, and saying to my husband “I don’t feel like me any more”.

I have a really clear recollection of my husband’s response to this. He leant over me, looked right into my eyes, as if he was looking deep inside me, and said “I see you”. He said other things after that along the lines of “You are still here, you are in there, you are still you” – I can’t remember the rest of it exactly, but even after 2 years I can still clearly remember how it felt when he looked into me and said “I see you”.  This simple but powerful gesture helped me get through that low point, and also helped me at subsequent points in my illness/recovery.

At the time I felt like the very essence of me was lost. I didn’t have the energy to carry out the simplest of daily tasks, couldn’t spend much time with my family and hadn’t been well enough to see any friends for weeks, and worst of all was the brain fog and dizziness that meant I couldn’t even think properly or hold a decent conversation. It reassured me that somehow (and I still don’t know how) my husband could still see the woman he married. His belief that I was still in there gave me hope and made me realise that even though I didn’t feel very loveable at the time, I was still loved.

Today I’m back to being me. I have my energy back, I can think clearly and I’m doing things I love. So when you’re feeling low, remember you are still you, you are in there and

I SEE YOU

The photo accompanying this post was taken on a lovely walk I took along the river this morning, whilst the ideas for this blog post were settling in my mind.  The weather may be grey, but I am thankful to be well enough to walk in nature again.

This week I’ve been dealing with a cold/cough – a lovely gift from my husband.  Last week he had a cold and came home from work early, went to bed early and generally didn’t want to do much.

This week it’s my turn.  It’s easy to catastrophise about set backs like this.  It’s harder to sit back and see the big picture. I want to focus on the negatives:

• I have less energy,
• my nose and eyes are streaming,
• I’ve got a hacking cough and can’t breathe properly,
• I’ve had to go to bed at 7.30pm more than once this week,
• My body aches,

However, the truth of the matter is these are all totally natural things to feel when you’ve got a cold virus.  Actually I’ve been doing really well.  I’ve been listening to my body and (children permitting) resting when I need to.  Despite my cold I’ve still managed to:

• keep the family fed (and that includes lunches because it’s half term),
• Keep on top of the washing,
• Sort out a load of old toys to give away,
• Digitise some recipes which have been hanging around for months,
• Write this blog post,
• Ride my bike around the village,
• Take kids to activities, or friends houses and have their friends here.

Although I feel worse than usual, I think I’m still able to do more than I could on a good day 6 months ago.  This is not a relapse, it’s a normal reaction to a cold and that’s fantastic.

Since it was a cold virus that sparked my ME I’m not sure I will ever feel relaxed about “just” having a cold.  However, I’m in a different place now, and I seem to be reacting like a healthy person to a virus, which is a reason to celebrate.

I haven’t written much about what ME/CFS has been like for me.  I meant to write it as one of my first posts.  I described My crash and what life was like before the crash, but I  then got straight into writing about food and haven’t written about what life was like after the crash.

I’ve thought about writing this post for a long time, but I know I’ve been avoiding it. Hopefully it is a sign of my confidence in my recovery that I am writing this now.  I am sharing this information because I know there are people who will say that because I’ve recovered I didn’t really have ME/CFS.  Let me tell you – I did.  Not only do I have an official diagnosis.; meeting the CDC criteria (scoring on 7 of the 8 symptoms), but also meeting the more stringent Canada Working Case Definition, but my life was turned upside down and it has taken a lot of effort and time to recover.

Here’s a snapshot of what daily life was like for months and months and months:

• brushing my hair made my arm ache and fatigued me.  On bad days I had to get someone else to do it for me.
• Washing my hair, even lying down in the bath would leave me drained for the rest of the day
• I have done the school run in my PJs on numerous occasions (I bought black PJs so they would look like trousers) because I did not have the energy to get dressed and get my kids to school.  My husband used to get them ready for school, get my electric bike out of the garage and near the front door and I would ride (under electric power) to school, home again and then rest.
• There were also plenty of days when I couldn’t manage the school run at all and had to rely on my husband or friends to take/fetch the kids.
• I couldn’t dress myself all in one go.  I had to put on a garment then lie down and recover before I put the next one on.
• I needed at least 4 rests of 30-60 minutes each day just to have energy to be in the same room and speak to my family.
• I couldn’t stand up long enough to have a shower for 18 months.
• I used a wheelchair, mobility scooter or electric bike to get around outside the house.
• I couldn’t follow a recipe due to my brain fog.
• I found socialising exhausting, even with close friends and family.
• I would often lie on my sofa feeling hungry or thirsty, but not have the energy to get up and get myself food or drink.
• I couldn’t read a book for over 9 months, and then gradually I started to be able to read for short periods.
• I couldn’t watch a film in one sitting, I would need a rest (or sometimes 2) in the middle.
• I couldn’t take in information – e.g. trying to read the instructions and apply for a school bus pass for my son was impossible.
• Sitting or standing made me feel dizzy and lightheaded.  I had to spend most of my time lying down.
• Hours would pass in my cloud of brain fog.  I can remember someone telling me they would be bored sitting at home all day.  My response: “I’m too ill to be bored.”
• My sleep was disrupted.  Sometimes I would get to sleep OK, but wake up really early, sometimes I wouldn’t get to sleep until the early hours, and sometimes I would wake up in the middle of the night.

Hopefully these bullet points give you a snap shot of how I was affected.  It’s so hard to describe this illness, because it affects all your bodily systems and the symptoms are so varied.  But if you’re going through it yourself at the moment then you will probably see some similarities.

Today my life is very different to this.  If you are reading this and identifying with it, then please know that it doesn’t have to be like this forever.  Things can improve, and every small improvement in your physical and mental stamina brings about massive improvements in the quality of your life, as you are able to spend more time with the people you care about and get out and about doing what you love.

Remember: “Things Get Better” Katie Piper