evening event – Another MS Warrior

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

75 Oh what a night …

We had such a wonderful night on Saturday and managed to exceed our fundraising target! I thought I’d post an update on the whole weekend …

A few of us arrived at Bonis Hall at around 9am on Saturday morning. We came in assorted cars and vans, loaded with equipment and drink and took on the task of converting a staff canteen into a stylish party venue. Furniture was rearranged, decorations, technical equipment and fairy lights put in place and within a couple of hours the room was really starting to take shape. Sharon (Spoilt for Choice, Cheshire) lent us her expertise and resources and we were delighted with the end result.

Thank you Sharon, Sophie, Connor, Niamh, Callum, Joe, Glenda, Jimmy, Gill, Anna, Zeb, Heather and Charlie ?

There was a huge display screen on the wall and our favourite graphic designer had put together a slide show to tell our guests a little about MS, HSCT and all our fundraising efforts …many thanks Dave ?

We whizzed home in the afternoon, showered, changed and glammed up, returning to Bonis Hall by about 5.30pm. It was lovely to walk back in again with fresh eyes and see how wonderful it all looked.

We finished a few last minute jobs and by 6.30pm our first guests began to arrive. I was a bit of a nervous wreck by this time …like everyone else I’d been on my feet all day and also hadn’t eaten much, so was feeling decidedly wobbly! I was also a little worried about having anything to drink in case I just keeled over!

An hour later I was feeling much better. Lots of people had arrived and there was a lovely happy atmosphere in the room. People seemed genuinely pleased to be there and I began to relax a little.

Our fantastic compère, Chris, opened the evening and welcomed our first performer, Ashleigh. I hadn’t heard Ashleigh sing before, other than on a video on someone’s phone, but I had heard several people say how good she was. This turned out to be quite an understatement! What an amazing voice! Thank you Ashleigh, for your wonderful singing – I’ve had so many people ask me about you and tell me how amazing you are! ?

Next up was food time! We had lots of discussions about food on the run up to the event and a number of small hurdles to overcome. We wanted to keep the cost low and the quality high and we also had no access to the kitchen facilities. Thankfully our wonderful friends, Heather and Nick saved the day with their expert catering knowledge and culinary expertise and the decision was made to provide a choice of curries, with naan bread and popadoms. The food was delicious and everyone seemed to enjoy it. Thank you Heather and Nick xx

After the food, I managed to shuffle up to the microphone to say a few rambled words of thanks (my thanks is heartfelt, even if I didn’t manage to articulate it very well!).

The mammoth task of drawing the raffle was next. We had received so many donated prizes and it took quite a while to work out. I still have some prizes in my living room, so will be contacting more winners later in the week. We had sold a few tickets ahead of the event but most were sold by my wonderful niece, Anna, on the night. Thank you Anna ❤️

My slightly tipsy friend, Karen, then decided to embarrass me with a few words of support (thank you lovely xx). Karen is a wonderful supportive friend and will be coming to Russia towards the end of my treatment, in order to help me on the journey home.

Then it was time for more live music from Dan and Chris, who were fabulous! Thank you both ?

(By this time my camera skills had completely gone out of the window, so I sadly have no photos of Dan and Chris! Please send me one if you have any ?)

Edit: photo added 27.02.19 …thanks Glenda

Chris was fantastic as our compère and managed to keep everything running smoothly, despite us going off plan more or less from the start of the evening …thank you Chris ?

Whilst all this was going on, there was also a bit of face painting (thank you Tiah x), a kids activity corner, selfie props and a football table.

We decided to stock and run the bar ourselves, offering drinks at a great prices but still managed to make quite a bit of money. Thank you to Jimmy and Gill from Swan Brewery who provided the beer and wine and did a lot of the leg work on the bar ?. Connor, Niamh and Sophie also spent a lot of time running the bar too …thanks all of you ?

We managed a token tidy up at the end of the night then all left for a few hours sleep.

By 9am a group of us were back at Bonis Hall for the big clean up! It was important that we got the room back to exactly as it had been, before the site cleaners arrived (otherwise we could have incurred charges). After much hoovering, scrubbing, mopping and car loading, it was as if we had never been there at all!

My sister, Glenda, was with me for the weekend and was a wonderful support, both practically and in helping to keep me calm! It was lovely to have that bit of time together – Glenda lives in Germany and although we are in touch a lot, we don’t get together as often as we would like. After taking Glenda to the airport, I went home and had a 3 hour nap!

The busy weekend and the hectic build up have rather taken their toll on me and 3 days later, I am still exhausted, my legs are very sore and my right hand is having episodes of numbness and tingling.

It was all worth it though …through everyone’s hard work and generosity we managed to raise …

Perhaps more importantly, it was so uplifting and heartwarming to see what can be achieved when a group of people work together with a common aim. Despite our exhaustion, we all really enjoyed the evening and it gave us all a positive optimistic boost. I really hope all our guests felt that too. There really is an awful lot of good in the world ❤️

Thank you to everyone who helped to make it such a great night ❤️

GoFundMe

74 A few thank yous

With just one day to go until our fundraising evening, it’s time for me to thank a few people. It’s been really hard work to put this event together and in particular, to do so with minimal expenditure. We have had so much amazing support and I am truly blessed to have so many kind people in my life.

I’d like to thank the following for their amazing generosity…

McCann Manchester for letting us use their fabulous venue. A special thank you to Joe for arranging this for us.

Sharon from Spoilt for Choice, Cheshire for decorating the room.

Dave Gilmore from David Gilmore Design for all his hard work with the tickets, slide show and various other graphics.

Stephenson’s Catering Equipment, who have been supportive in so many ways, including providing supplies for the evening.

Swan Brewery for providing all the beer and lots of other help and ideas.

Heather and Nick Chick, chefs extraordinaire, for preparing the food.

Our wonderful musicians …

Ashleigh

Dan and Chris

Everyone who has donated raffle prizes. We have received so many lovely items and we are touched by your kindness. The following businesses have also kindly donated …

Essence Hair Studio, Heaton Chapel (find them on Facebook and Instagram)

Seed Beauty, Edgeley (find them on Facebook and Instagram)

Droylsden Subaqua Club

The Vintage Village, Stockport

Inspire Travel

The Bun & Bones Club, Hazel Grove (find them on Facebook).

Many friends and family have pulled together to help get things in place, but I’d like to give special thanks to Connor, Niamh and Sophie who have given up a lot of their time to take the pressure off me and make sure everything is in place for tomorrow. They really have been amazing! Also, thank you to Glenda who has travelled over from Germany and to Jimmy, Gill, Anna and Zeb who have come up from Herefordshire for the weekend …your help and support is very much appreciated.

Lastly, thank you to everyone who has bought a ticket and also to the people who are unable to come but have made a donation.

See you there! ????

GoFundMe

73 Three days to go!

The last couple of days have seen much activity as we prepare for our evening fundraising event this Saturday. I thought I was quite an organised person, but even with multiple lists coming out of my ears, it all feels a bit manic!

Niamh has spent this evening sorting out the raffle prizes, while I made lists for a seating plan, further stuff to buy, timings for the night, jobs still to be done and people still to contact.

We have money in envelopes and scribbled notes on bits of paper all over the place.

My friends and family have been an amazing support in getting the event organised and it finally feels that everything is coming together at last. I’m so pleased that my brother and his family will be coming up to support the event and my sister is flying in from Germany …can’t wait to see them all.

Our ticket sales have exceeded expectations, which is a huge relief. We still have a few left, so do let us know if you’d like some. We also aim to have some on the door for any last minute guests.

Some useful information …M

? The address for the event is Bonis Hall, Bonis Hall Lane, Prestbury, Macclesfield SK10 4EF.

? Start time is 6.30 …we went for an early start as we thought it would suit those bringing children (please let us know if you are, so we have a rough idea of numbers).

? There is plenty of parking and we have been given permission for cars to remain there overnight, if you wish to get a taxi home and come back for your car the next day. (Cars left at owners’ risk).

? As a rough guide, the cost of an Uber from Bonis Hall to Hazel Grove is £10.

? There will be a well stocked bar selling Swan beer, lager, cider, wine, Prosecco, gin, vodka, Pimms and a range of soft drinks.

? Payment for drinks can be made by cash or card (there will be a 20p charge for each card transaction).

? We will be serving a curry supper (vegetarian / gluten free option available too).

? Raffle tickets will be available to buy on the night.

? We have a couple of live performers who are kindly giving their time for free (thank you so much Ashleigh, Dan and Chris).

???? I hope everyone has a great night and look forward to seeing you all there xx

71 I can see!

This week I collected my new glasses from the opticians …they are amazing …I can see!

I first wore glasses as a small child until the age of around 12. This was for a squint and a tendency to being long sighted. I spent quite a lot of time having tests, wearing patches and visiting the eye hospital. After that, I think I last had my eyes tested when I was about 20!

Over the last few years I’ve been buying off the peg reading glasses and have reached the point where I can’t manage without them! Primark and Aldi have provided my optical services and I haven’t spent more that four quid for a pair!

A couple of months ago, I was advised by an occupational therapist to get my eyes properly tested. Apparently this is very important at my advanced years and even more so as I have MS!

Optic neuritis (inflammation of the optic nerve) is a very common MS symptom, in fact it can often be the first symptom MSers experience. It made sense to get my eyes checked.

I decided to go to a qualified medical optometrist, rather than a high street optician and was glad I did. I am now the proud owner of not one, but two, new pairs of glasses!

It turns out I need one pair for distance and one for reading (I can’t have varifocals because of my balance issues) so I’m now nearly £400 worse off. But things are now much clearer …I can see to read and can see the computer screen at work and (as the optometrist pointed out) with my distance glasses on for driving I “can see the whites of their eyes when I hit ‘em!”.

The optometrist was also able to check the health of my eyes and could see that my optic nerve is in good shape and free from neuritis.

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Life feels very hectic at the moment. There’s so much to do to be ready for our evening fundraising event and I’m also starting to plan for my trip to Russia. The clinic is working on my contract and other paperwork and I’m in touch with a visa agency and starting to look at flights.

The other big development is that I have made some decisions about my travel to and from Moscow. I’m going to make the outward journey on my own. I’m not worried about this and the hospital will arrange to meet me at the other end. I’m expecting the return journey to be a little more tricky as I could be feeling quite weak and tired and I need to do all I can to avoid infections. My lovely friend, Karen, has offered to travel over so that she can make the return journey with me. I’m so grateful for this and now feel the journey home is something I don’t need to worry about. Thank you Karen xx

There are still tickets left for our evening event …get them while you can!

GoFundMe

68 Tickets, ticket, tickets!

The tickets for our fundraising event are finally ready!

I’d like to thank Dave Gilmore for designing and printing them and Niamh for cutting and perforating them.

Tickets are £10 each, children under 10 are free (please let us know if you are planning to bring children so we have an idea of numbers).

The evening will start at 6.30pm and will go on until midnight. We have a few live music acts lined up – dancing and singing along most welcome! There will be a bar, selling Swan Brewery beer and various other refreshments.

We have a few items that we plan to auction – this will begin online in a couple of weeks and end during the evening (more info to follow).

Raffle tickets are also now for sale.

We have had lots of amazing raffle prizes donated, with new items coming in all the time. Raffle tickets are 50p each.

If you have anything you could donate or know of any shops or services who may be willing to provide a voucher, we’d love to receive them …the more prizes we have, the more raffle tickets we’ll sell and the closer we’ll get to our fundraising target.

All business donors will be mentioned in this blog, on our social media pages and on the night.

If you would like to see more of Dave’s fabulous work (including the Manchester bee paper straw design) please see his website …

davegilmoredesign.com

You can find out more about Swan Brewery here …

swanbrewery.co.uk

If you would like to make a donation to our fundraising account, please do so here …

GoFundMe

Please spread the word!

Thank you again for all your support ?

65 Let people in; they can handle it

I read this interesting personal account today and realised I have the same issue as Trish – I am so determined to remain independent and self sufficient that I tend to hide my MS struggles and don’t often ask for help.

MS Lesson Learned: ‘Let People In; They Can Handle It’

Yesterday I met up with three dear friends who I’ve known for years and would trust with my life – we can (and do) talk about anything and everything, we’ve supported each other through all sorts of ups and downs, over many years, yet still I minimise my struggles.

Thinking about this, I realise it’s because I don’t want the people in my life to see me differently …even though I am different now. Maybe I am struggling to accept that myself?

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I am very happy to tell you that we finally have a plan in place for our evening fundraising event on Saturday 23rd February. Tickets are being designed and printed as we speak and will be available to buy very soon. Tickets are £10 and will be available soon.

As mentioned before, the venue is Bonis Hall, the home of McCann Manchester, who have kindly agreed to let us use their Bistro area for our event. Special thanks to Joe for setting this up for us.

The event will start at 6.30pm and we have an evening of music, food, drink and fun planned. Children are welcome too (please let us know if you are bringing children).

We are hoping this will be a successful fundraiser for us and a fun night for all.

We will be selling raffle tickets before and on the night and already have a fantastic array of prizes. If you have anything you could donate as a prize, please do get in touch. Unwanted Christmas presents, vouchers for services or anything else you can think of!

We still have some other fundraising events coming up …Callum’s head and chin shave, Team Stephenson’s are taking part in the Gung Ho Infaltable 5K, Glenda will be taking part in a Nordic walking event and the lads will be completing their Mountain Bike Challenge

GoFundMe

63 Work life balance

Today has been a very strange sort of day for me. I work in education so have school holidays (I know I am very lucky). During term time, I work hard and over recent months have started to struggle. I found my MS fatigue and other symptoms impacted on my daily life and it was getting to the point where I was cancelling social events and spending all my non-working time trying to recover from the working day.

Towards the end of last term, my life consisted of work/eat/sleep and not much else and it started to get me down. In December, I made the decision to reduce my working hours to 4 days per week, instead of 5. The reduction in income is a bit of a worry, but I am hoping to achieve a better work/life balance and to have time and energy to see friends and to manage everything else.

So today was my first non-working term time day! I didn’t do anything exciting – a bit of resting, a bit of cleaning and sorted some paperwork – but it feels good to be entering the weekend with a little more energy and with a few jobs out of the way.

Tomorrow, George will be bravely taking on the challenge of the Runthrough Victoria Park Half Marathon, despite suffering a chest infection, which has impacted on his training. Good luck George! Please take it easy and just get yourself over the finish line in one piece!

JWe are not quite ready to give full information just yet, but I hope lots of you will come along to our evening fundraising event on Saturday 23rd February. The venue is the beautiful Bonis Hall in Prestbury.

We are in the process of organising music, food and drink and hope it will be a fun night for everyone. If you can help in any way, please do get in touch.

We are also planning on holding a raffle and are now in the process of collecting prizes. Do you have anything you could donate? Unwanted Christmas gifts? Access to services? Do you know anyone associated with sport or TV who might donate signed items or event tickets?

Many thanks to everyone who has already offered items – I will be in touch soon.

Thank you again for all your help.

GoFundMe

59 Christmas recovery

I hope you all had a wonderful Christmas and are recovering from the festivities. I know I have a few readers with MS, so I’d like to give you a special mention – I hope you had a restful, stress free Christmas.

I spent Christmas at my brother’s house, where we managed a bit of a family get together …14 of us all together on Christmas Day was just lovely ❤️

It was my birthday on Christmas Eve and I started the day with my niece and nephew, Anna and Zeb for company.

Later, we all met at the brewery, where we had picnic lunch and a good chat about beer!

After a couple of mulled wines in the village social club, we made our way to the annual Christingle service in the village church, before going home and welcoming late arrivals, Connor, Niamh, Sophie, Callum and Odin.

Christmas Day was full of joy, presents, noise, laughter, food and drink. The weather was mild and we managed a muddy walk, with Zeb as our guide. Sophie has been learning the proper way to use trecking poles, so after a quick lesson, I was off! I even had to remove the ferrule protectors and use full “spike mode”!

After this much exertion, a visit to the village pub was needed, then home for more food, more drink and a few rounds of our new favourite game “Werewolf”.

Thank you Jimmy, Gill, Anna and Zeb for looking after us so well and an extra thank you to Zeb for giving up his bed for me! Thank you also to Glenda, Axel, Fiona, Kyra and Max (honorary family member!) for helping to make this such a lovely Christmas.

My family are all wonderfully supportive of my fundraising efforts and I received various donations from them …they really are an ingenious bunch! (See latest donations and update on my Go Fund Me page for details).

My amazing children have both cut back on Christmas purchases this year and instead made generous donations to the fund …thank you both for your kindness and for everything you are doing to support me ?

The next fundraiser is the Run Through Victoria Park half marathon on 5th January …Go George Go!

A date for your diaries …

Our evening event will take place on Saturday 23rd February. We are planning to make this an evening of music, food, drink and fun! A silent auction and raffle are planned and we will also raise funds by making a small ticket charge for entry.

More info will follow nearer the time, but in the meantime, if you are able to help in any way, please get in touch. We would also welcome anything you can donate to raffle or auction …unwanted Christmas gifts, bottles, services, vouchers etc.

Fundraising page … GoFundMe

You can find out more about my brother’s brewery here … Swan Brewery

Werewolf … PlayWerewolf

Details of the half marathon can be found here … Run Through UK

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 ?

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