76 Slow recovery

Apologies for the radio silence …it’s been a tough old week for me!  I really did overdo it last weekend …on my feet for far too long, too much lifting and carrying and staying up late (for me anyway!).  I have felt overwhelmed with fatigue and ataxia** ever since and have been concentrating on work and resting. 

** Ataxia is the medical term for lack of voluntary coordination of muscle movements. In MS this can be seen as clumsiness, unsteady gait, impaired eye and limb movements, and speech problems.  In some cases, the lack of coordination is seen as tremor. 

Read more about Ataxia here …MS Trust – Ataxia

Other than that, it has been a really good week.  I’m still feeling thrilled at the amount of money raised at our evening event and still receiving donations from people who couldn’t make it …thank you again everyone. 

I was planning on taking a step back from fundraising over the next few weeks as I have a lot to do to get ready for my trip to Russia, but I’ve been contacted by a few people with amazing offers of help …

🧝🏽‍♀️ My fabulous friend, Beth, has recently learnt the art of Tarot reading, so we are planning a small evening of readings, drinks and nibbles sometime soon.  Thank you Beth xx

☕️ A local coffee shop / bar has offered to host an event …more info to follow once we have it.

🍲 A Chinese restaurant has been in touch to offer a fundraising evening.  We are at the very beginning of planning this one, but hopefully another fun evening coming soon! 

In addition, we have a few fundraisers already in the pipeline …

Glenda is taking part in a sponsored 10K Nordic Walk in April.

Niamh and a team of workmates from Stephenson’s are taking part in the Manchester Gung Ho inflatable 5K at Heaton Park on 6th April.

Alex, Connor, Gleaves and Carl are still working on their mammoth 100K (58 miles) Peak District Mountain Bike challenge. 

 Cal’s head and chin shave is coming soon!

I am planning to pay for my treatment before we fall off the Brexit cliff on 29th March, so will be borrowing the outstanding amount (and will continue to fundraisers when I’m well enough).

In other news, I have started the process of arranging Visas for myself and Karen this week …it’s really happening folks!  🇷🇺

I didn’t want to finish this post without acknowledging a big event in the MS world that took place this week.  As you maybe aware, Hollywood star, Selma Blair was diagnosed with Multiple Sclerosis last Summer.  This week, she rocked on the red carpet for the Vanity Fair Oscars afterparty, with a custom made cane, looking beautiful, fierce, vulnerable and so much more. 

She has also given a TV interview, despite being in the middle of an MS relapse affecting her speech.

Selma speaks openly and honestly about her MS on her Instagram page and has also had an interview published in Vanity Fair.

Thank you Selma for not hiding away and for your honesty in sharing the ups and downs of living with MS.  There is much happiness to share too and I’m glad that people are getting to see that. 

GoFundMe

42 Fundraising events

Well our fundraising page has been up and running for 6 weeks now and this is the grand total you have all helped to raise …

Never in my wildest dreams did I think we would be this successful and it has warmed this old heart so much to see such kindness.  I am grateful for every penny donated and am particularly touched by donations from people who don’t even know me and from friends who I know don’t have a lot.  I am aware that many of us  are living in financially challenging times, so fully understand that not everyone can (or wants) to contribute 😘

From the start, we wanted to make sure that we were doing things to earn your contributions, rather than simply crowdfunding.  All of these events need a lot of thought and organisation  – not easy when you have a full time job, a busy life and wobbly legs as well as brain fog and fatigue!  I really appreciate all offers of practical help and couldn’t have got this far without family and friends sacrificing their time ..thank you all 😘

Here is an update on events still to come …

Christmas Second Hand Toy Sale

My nieces, Kyra and Fiona, have gathered up everything they can find in their bedrooms and hidden away in the cellar and are preparing to sell it at an organised event this Saturday.  They live near Cologne in Germany, so if you’re near there and want to know where the sale is, get in touch!

Dry November 

My fabulous friend, has volunteered to have an alcohol free November.  As you can see, Julie is the cocktail queen of Stockport, so this is a big sacrifice for her! 

Although it’s not yet November, Julie has already started her ‘go dry’ challenge and has managed a fun night out on soda water alone! 

If you know Julie and would like to sponsor her, please see her in person.  

If anyone else would like to encourage Julie with a small donation, you can do so via our GoFundMe page (link below). 

Disclaimer: Julie is actually very sensible and does not have a drink problem 🥂

Wilmslow Festive 10K

Niamh, Callum, Jess and Jake will be taking part in this event on Sunday 25th November. Training has begun and thankfully, Niamh’s hip seems to be holding up! 

Head and Chin shave 

Callum will be succumbing to the scissors in early December.

Evening Event

We are still in the planning stages for this but are hoping as many people as possible will come along a support us and have a fun evening of music, food and drink.  We already have visitors travelling from the Isle of Man and from Germany to attend!  Date to follow …

Peak District Mountain Bike Challenge

The five cycling lads have had a couple of set backs and are now running out of daylight!  They have decided to follow advice and delay their cycling challenge until March of next year.  This is because they have worked out that the ride will take 12-14 hours and for safety reasons (and to preserve my nerves) it would be better to not be doing some of it in the dark! 

They plan to spend the next few months getting in as many training miles as possible. 

As you can see in the photo above, they were out on the Peaks on Sunday, with Connor filming part of their route using a helmet camera …I’ll upload some footage from this when I’ve worked out how to! 

Tandem Sky Dive

More information to follow when we have it.

we are still open to ideas and offers of help, so please get in touch if you have any 😘

GoFundMe

40 Cakes, cakes cakes! 😋

Yesterday, the Herefordshire arm of the family held a coffee morning, cake sale and raffle to raise funds for our campaign.  

Jimmy and Gill have a brewery business and have been selling raffle tickets to brewery visitors for a few weeks now.  They managed to gather some super prizes from the local community, as well as donating some of their own produce.  

 

Gill is renowned in our family, for her amazing culinary skills, which she seems to have passed on to Anna and Zeb!

 

The event took place in their lovely home and it looks as if it was lots of fun.  Anyone who follows Swan Brewery on Facebook will know that Gill never misses an opportunity to dress up and this was no exception.

And just look at those amazing cakes! 

There were a few cakes left at the end of the morning so Anna and Zeb packed them up and sold them to some of the spectators at the village football game in the afternoon. 

Today, they have managed to count all their takings (including a jar of pennies donated by their neighbour!)

The grand total of all their hard work is …

This brings our grand total past the £6,000 mark ..I am so grateful to everyone who has helped us to get this far 😘

Thank you for all your efforts Anna, Zeb, Gill and Jimmy and also the people of Wellington and customers of Swan Brewery 😘

You can find out more about how Swan Brewery was born, their environmentally friendly ethos and their amazing selection of beers here …

www.swanbrewery.co.uk

They are also on Facebook and Twitter. 

In other news…

The cycling lads are out in the freezing Peak District as I am writing this …I’m just hoping they manage to avoid the snow that has fallen there over the last 48 hours! 

We now have so many local musicians volunteering for our evening event in the new year, that we may need to have two events! 

We are planning to contact local media at some point but things are already starting to happen without us doing anything!  I have been contacted by a company who are making a documentary for Channel 4 about people funding their own medical treatment and Niamh has established a contact at Smooth Radio.

In the meantime, please follow us on Instagram and Twitter and share with your contacts.  Thanks again for your continuing support 😘

gofundme

 

38 Half Marathon sponsorship update

On Sunday 14th October, 5 amazing people took part in the Manchester Half Marathon.  For everyone except Nick, this as the first time they had run this distance, so it was a huge challenge.  They all worked so hard to prepare and achieved amazing times when they crossed the line. 

I have finally counted up all the promised sponsorship money for the event and we are delighted to let you know the total raised is …

Thank you so much Heather, Nick, Gleaves, Connor and Niamh …you are amazing! 

Thank you to everyone who sponsored them …every penny is very much appreciated.  I want to give an extra mention to everyone at Stephenson’s Catering Equipment for their kindness and generosity.  

We have a couple of sponsored events coming up in the next few weeks …

Peak District 58 mile mountain bike challenge 

Adam, Connor, Gleaves, Carl and Johnny are in training for this gruelling challenge and we have started to receive sponsorship funds already!  They have had to postpone their original plan to do this on Saturday and we will have a new date very soon.

🚴🏼‍♂️ 🚴🏼‍♂️ 🚴🏼‍♂️ 🚴🏼‍♂️ 🚴🏼‍♂️

Wilmslow Festive 10K

Jess, Jake, Callum and Niamh will be taking part in this event on Sunday 25th November.  Training has begun and I hope to be there to cheer them on, on the day.

🏃🏼‍♀️ 🏃🏻‍♂️ 🏃🏼‍♀️ 🏃🏼‍♂️

Dry November

My wonderful work friend Julie is planning a dry November and will be collecting sponsorship money for doing so.  Julie’s preparation involves spending the half term holidays drinking a month’s worth of Prosecco! 

🥂 🥂 🥂

If you would like to sponsor any of the superstars mentioned above, you can do so at the Go Fund Me page linked below or by speaking to them in person.  

Thank you to everyone for your continued support, whether by taking part, by donating or by sharing my story 😘

GoFundMe

36 Mountain bike challenge postponed

The cycling boys have made a decision today, that they are going to postpone  the sponsored bike ride due to take place this weekend.  A few factors have contributed to this …

🚴🏼‍♂️  🚴🏼‍♂️ 🚴🏼‍♂️ 🚴🏼‍♂️ 🚴🏼‍♂️

  • A fifth team member has put himself forward today and as the others have been training for a while now, he needs time to catch up …welcome to the team Jonny!
  • One of the team picks up a new bike this Thursday and it would be madness to take it on a 100km ride on its first outing.
  • The weather forecast for this weekend is for freezing temperatures and snow on high ground.  Since the challenge includes several steep climbs in the Peak District, we are concerned about safety of the team in these conditions (well, the boys weren’t concerned about this, but I was!).

So, the team of five will be out on a low level training ride at the weekend and putting plans together for a new date.  We’ll share this with you very soon and hope you understand the reasons for this change of plan. 

🚴🏼‍♂️ 🚴🏼‍♂️ 🚴🏼‍♂️ 🚴🏼‍♂️ 🚴🏼‍♂️

Here are some photos from their most recent training ride and spectacular views of the beautiful Peak District.

23 Fundraising update

Two weeks ago, we launched our fund raising page with the aim of raising £40,000 to fund HSCT treatment abroad.  

www.gofundme.com/another-ms-warrior 

Please could I ask you to think about whether you might know anyone who might be willing to help?  Please share our fundraising page far and wide.  I know of someone in my position who had their treatment paid for in full by a wealthy friend of a friend of a friend who saw the link on social media! 

I am finding fundraising hard going – it really isn’t easy to ask people for money and at times, I have wanted to scrap the idea all together.  I feel incredibly vulnerable and exposed having to be so public about my life.  My children, close family and friends are being wonderfully supportive and are encouraging me to keep going.  To put it bluntly, my only other option is to keep quiet and slowly decline into disability. 

To boost our fundraising efforts, we have a number of events coming up:

1. Manchester Half Marathon, Sunday 14th October 2018

Connor, Niamh, Gleaves, Nick and Heather are training hard for this event and the blisters on Niamh’s feet are almost healed!

2. 58 Mile Peak District Mountain Bike Challenge, Saturday 27th October 2018

Alex, Connor and Gleaves are taking on this gruelling challenge

3. Tandem Sky Dive, date to follow

Callum is organising the opportunity for volunteers to take part in a tandem sky dive and hopefully raise some sponsorship money. We have a growing list of people 

Who would like to do this (possibly including me!) …if you would like to be added to the list, please let me know.  Cost will be around £200.

4. Evening Event, January 2019

This will be an evening of music food, games, raffle, auction and anything else we can think of!  We have a fantastic venue in Prestbury and some great entertainment lined up, including The Red Shells and Beth and the Beats.

If you have anything that you could donate as a raffle prize or auction item, we would be very grateful.

There are further events and sponsored challenges in the pipeline, so watch out for those.  We are also open to further ideas and suggestions. 

If you’d like to sponsor any of the participants taking part in sponsored events, please donate to our GoFundMe page and mention them in your comment.  You can also sponsor individuals by contacting them in person.

If you know of any businesses that may be willing to offer items or services as raffle prizes or auction items, please get in touch with one of us. 

Thank you for all the amazing support …I really do appreciate it xx

21 Fundraising update

Today my nephew, Zeb, niece Anna and his friend Skye set up a stall in their village to raise funds for our campaign.  They baked a cake and sold a few other bits and pieces too.  Thank you Zeb, Anna and Skye xx

Unfortunately they live in a very small village and didn’t have quite as many customers as they hoped.  If you have a couple of spare quid you could dontate, giving Zeb, Anna and Skye a mention, this would make them very happy! (Sorry, I won’t be able to send you one of their yummy cakes!)

In other news, a friend of Connor has decided to take on an amazing mountain bike challenge.  Here is Alex’s plan …

“October 27th 2018 I will be completing this ride with Connor.  Almost 100km (around 58 miles) distance and with around 2.8km of ascent over gravel, loose shale, rocks, mud, through streams and maybe a little bit of tarmac, this will not be an easy task for a relative amateur like myself.”

To see Alex’s route, click here

To support Alex in this massive challenge, you can sponsor him at my GoFundMe page (and wish him good luck in your comment).

Plans are coming together for an evening event in November and we are hoping to get bank and PayPal accounts arranged in the next few days.

Thank you to everyone who has been in touch by email, phone and text and to family and friends for all the hours of planning and discussion.  We’ve come a long way in a little over a week!