Josie’s ME/CFS Journey

Just to give you some background of how I was before I met him…

I was diagnosed with M.E. and was frequently bedbound. When I wasn’t bedbound I was house and wheelchair bound mostly. I could walk a little around the house though not far at all, but a year and half after being diagnosed I had a severe relapse and was fully bed bound.

I was very sensitive to light and sound. I had blackout blinds on the windows and sunglasses or eye mask throughout the day, and I could not stand the rustle of a paper bag or someone talking!

I had nurses come to home 3 times a day to turn me over when I was in paralyses (where I couldn’t move from the neck downwards, and at one point this continued for several days). I couldn’t walk during the 6 months that I was in bed because I was so ill and because most of the time I couldn’t move.

There were times when I couldn’t talk. I had to write on a piece of paper what I wanted to say or try to use expressions using my arms and face, although when I couldn’t move this proved impossible.

Later I was rushed into hospital as an emergency case. I had lost 2 stones in weight and wasn’t eating or drinking because I couldn’t open my mouth, chew or swallow. I was put on i.v fluids through my arm. I was advised many times by doctors that I could be put on an ng tube to feed me, but thankfully I wasn’t.

I was unconscious a lot of the time I was in bed and had seizures too. I was also very hard to wake up in the morning and it used to take me about 4 hours+ sometimes to get to sleep.

But thankfully that was my old life. After months and years of being so ill, I went to see Amir for help.

This is my journey…

Day 1

I arrived in Wales. I was paralysed from the waist downwards (had been for 19 days). I felt awful. I was carried in and put straight in to bed. I felt so sick, was violently tremouring, was going in and out of whole body paralysis, and had bad temperature control and headaches. This was all night, and I couldn’t sit, or even get in wheelchair to toilet. I couldn’t lift a cup or a lightweight magazine. I could hardly open my eyes, eat or drink.

Day 2

I awoke feeling the same. In the afternoon Amir came to see me. I worked with him for a total of 5 and a half hours with breaks in-between to rest.

“After the time with Amir that day my legs came out of paralysis (after 19 days), I sat up (without support) got wheel chaired to the bathroom. 5 minutes later I had dinner in the dining room. I ate my dinner with no help at all. I felt great!!”

That night I walked for the 1st time in 6 months on crutches to the bathroom, which was down a corridor from the room we were staying in.

Day 3

Woke up and within 10 minutes got up and walked with crutches to the other side of the room to the bay window overlooking the sea. Sat up and had breakfast there at 7.00 in the morning.

After I walked to the bathroom on crutches and had a shower, my 1st one in 6 months! And got myself dressed.

In the afternoon of the second session with Amir I went to the beach (my first trip outside in 6 months!!!) and walked on my own.

“I was walking up sand dunes, throwing pebbles in the water, laughing, joking, talking, just randomly walking around in the fresh air saying over and over again I’m well!! I’m well!!! (The most walking I’d done in 2 yrs!!!)”

That night I went into the village pub, sat in there for half an hour and had a drink with my mum and dad, then took a drive and sat eating chips in the car for tea! Back at the accommodation I went to bed, got to sleep within 4 minutes!

Day 4

I got up, had breakfast, made mum and dad a cup of tea, walked to the bathroom down the corridor without crutches, had a shower and got dressed, then packed all the suitcases to come home.

Mid morning travelled to Amir’s practice and had last session for nearly 2 hours.

In the car going home, I sat bolt upright for the whole of the 4 hour journey, and it didn’t bother me at all!!

Came back, saw my sisters for a while; I was being hyper bouncing around the kitchen! I had so much energy!!!!

Made myself something to eat and drink. Saw my boyfriend for 2 and a half hours, sat up and stood up. Had a late meal at the table. Went to bed and got to sleep within 4 minutes again!

“I hope that my story inspires those of you that can/want to learn to break the cycle of M.E. with Amir, especially those who are severely affected and didn’t think you could manage the journey! I managed 4 hours+ in the back of a car lying down on a mattress, paralysed from the waist downwards!!”

Three Year Update

So many people have been touched by my experience and I have inspired them to go and do the same as me and to then hear their accounts has been heart warming.

Knowing that sharing my own journey has helped other people feel less alone with theirs means more to me than I can really put into words.

I still actually have the picture you got me to illustrate ‘a life I love’ in my bedroom. Needless to say I have achieved every single one of the things I wanted to do and more besides.

I wanted to take the opportunity again to thank you for all you did for me, without your tuition I would still be… well… in the sh*t!