children with M.E.

By Georgina & Phoebe

Even a live Second World War grenade couldn’t stop us!

On Sunday the 28th of July we began our quest to conquer a 25 mile kayak to raise money for Invest In ME Research. This journey consisted of a very early start, a late end to our tiring day and a shed load of rain in between. We started at Little Haywood, near Rugeley with our team of many supportive helpers including one in a kayak too, who without them it wouldn’t have been possible. Our planned route was to follow the Trent & Mersey canal from here through 14 locks and all the way to Willington in Derbyshire 25 miles by canal.

After an hour and a half of non-stop rain Georgina began to feel the cold and we decided it would be the right decision to stop at the next lock to collect a vital and necessary dry jumper. Another hour or so passed and we were nearing Fradley where we knew we would be provided with hot food and supportive friends and family.

After lunch we knew there was a long way to go but our friend’s banner gave us a helping boost of perseverance. The next 10 miles were rather tough, as we knew we still had a long way to go. As we neared Shobnall Marina we were instructed by police to leave the water as a live grenade had been discovered in the canal by a magnet fisherman. The canal was full of boats as it had been shut for sometime and soon the bomb disposal team were also in attendance! We decided the only option was to walk with the 3 kayaks along the main road to get back to the canal. But thankfully before we reached the road a kind family let us through their garden to get to the canal quicker.

When we approached the last 4 miles of our trek it was encouraging to see many family members reminding us we could do it. However as time passed it became gradually harder as it was getting later and we were getting more tired.

We finally reached our destination where we were greeted by familiar faces and lots of support. We both were exhausted, proud and ready for a hot drink. We had completed 26.3 miles in total with an average speed of 2.7 mph. Everyone there was very supportive and donated generously. We would like to thank everyone who helped, donated and supported us as this is such an important yet small charity. https://www.wonderful.org/fundraiser/endurancekayaking-49b77049

A huge well done and thank you to Phoebe and Georgina and everyone supporting and cheering on these two stars, undaunted by an unexploded grenade! The girls did a lot of training to lead up to this grueling challenge. They wrote on their fundraising page,

“We are two total novice 13 year olds taking on a huge challenge to kayak 25 miles in order to raise vital funds for biomedical research into ME. We are doing this after Georgina’s sister was hit with this horrid illness age just 14 and became very poorly. ME is a multi- system disease affecting not only the neurological system but also the immune , muscularskeletal, endocrine and cardio vascular. Its life changing in short with a quality of life generally worse than a person with end stage cancer.”

The girls have raised over £2,200 including Gift Aid thanks to their Wonderful sponsors! Wonderful is a fee-free fundraising platform so every penny donated will be spent on vitally-needed biomedical ME research: https://www.wonderful.org/fundraiser/endurancekayaking-49b77049

Thank you Phoebe and Georgina for doing a Kayak for ME!

Thank you for supporting Invest in ME Research!

P.S. To our blog subscribers, apologies that you did not receive our last blog by email, marking 8 Years Doing It for ME!

“I helped my 10 year old son to the bathroom as the crippling pain rippled through his leaded body. His lips were dry and cracked even though he had drank an ocean of water that day. His complexion had that grey alabaster look, with those deep panda markings that have become my nemesis.

As I helped him back to his room, he explains how embarrassed he feels about it all and I gently chastise him that things could be a lot worse. I quickly think of some comic element to lighten the load, and tell him of anecdotes of times I have helped his big brother and sister out. We have to take every movement real slow as he is dizzy and feeling sick. He sits at the end of the bed while I arrange the special pillow so that his head is elevated, and his sore neck is supported. I put eardrops in, to sooth his sore ears and Olbas Oil to clear his congested sinuses. There is nothing I have found that will help with his sore throat.

He would normally ask me to leave, but he is too weak and in too much pain to do so. I lay next to my son until the temperature in his legs has warmed. His body rigid with pain, I try not to think of the future because no one can say what will happen to my 10 year old son. There has been very little research done on the pathway of this disease, even though 25,000 children suffer in this way every day in England.

He has not been to school for months and he is desperately missing every aspect of life. He is jailed in our home by a dysfunctional body, crippled by M.E. Disbelieved by most medical staff not taught how to treat this long standing illness and portrayed as malingerer by politicians, with the threat of the Education Services and Social Services never very far away from my thoughts. This worry stagnates my concerns into despair. As a mother you are blamed from every angle, even by your own self. I haven’t slept properly for a couple of years now, and everyone keeps telling me to look after myself, but how do you do that, when you don’t feel safe and uncertain about the future? Which part of my life is on solid ground?

I try not to think back to the life we had, the fun of movement the joy of being a family so rudely taken from us. Just to jump in the car and go visit, have friends and family around, have a life. I have to pull from the here and now to gain the strength to make a buoyant life. There are many people out there with all sorts of illnesses and disabilities. I turn on the shower and cry it out.

I dress before he wakes and organise a day where he does not have to think. I worry about which foods his tummy will accept. I don’t put on the perfume I love to wear or deodorant because this will set off the migraine like headache, which will add to his already painful head. I cut out the Christmas decorations in the hope he will feel well enough to help. If not, I will quietly get on with it while we watch a film. I will pick a film we have seen a thousand times before, because this is all he will be able to do today. Watching a well viewed film is classed as an activity, unbelievable isn’t it?

He wants to go shopping and we have a month before Christmas. He wants to buy me two presents at the shops. Apparently I’m worth two! We have looked on line but he is determined to go out and he has even relented to using a wheelchair. We don’t have a blue badge to make our lives easier which is a shame, but we will manage. In my mind I think of taking him to eat somewhere special, of the music they put on for Christmas, the decorations, the lights, and life. For just a little while we could live. The payback of Post Exertional Malaise will be worth it? Wish us luck x”

To donate to our Movember Awareness please text MFME77 £1-£5 or £10 to 70070 or via www.justgiving.com/movember4me/

Thank you for your support.

There is a section on paediatric myalgic encephalomyelitis in the International Consensus Primer for Medical Practitioners. Hard copies are available from Invest in ME charity as official UK distributors and it may be read online here – http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf

Hard Copies available from Invest in ME Charity

About Let’s Do It for ME Movember Awareness of men’s health – https://ldifme.org/nomenbar-for-m-e/

Phoebe & Georgina’s Sponsored Kayak!

By Georgina & Phoebe

A Day with a Son with M.E.

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