Vicky

112 Happy Twixmas!

Hello everyone and happy twixmas! What a strange time of year this is … it seems no one knows what date it is, what day it is or what time it is! What shall I eat and when? Shall I leave the house today or have another day snuggled up with the cat, watching rubbish on the telly?

The last few weeks have been filled with their usual ups and downs, so I’m really quite glad of this quiet time to think and reflect and to process everything that’s happened this year.

A couple of weeks ago, I received an unexpected phone call from Professor Sharrack’s secretary, asking me to come for an appointment just two days later. The original date for my follow up appointment was in early February, so I was really pleased that it had been brought forward. Niamh kindly arranged to take the morning off work so that she could come with me and also offered to drive me there, which was a big help. So off we went across a rather foggy Snake Pass, ready for my appointment.

I’m not going to go into great detail about the appointment here, but a summary would be to say that he didn’t say “no” but he also didn’t say “yes”!

Things are all a bit uncertain and he is unsure whether I meet his criteria for treatment. Amongst other things, he said I would likely meet the criteria for treatment by the London HSCT team and would therefore definitely meet the criteria for private treatment in London! Unfortunately, I don’t have time to explore the London NHS option or the funds to consider the private route (£80K+), so neither of those are an option for me.

Prof S also thinks I have Progressive MS with Superimposed Relapses, rather than Relapsing Remitting MS …I’m not sure that I understand the significance of this, so more reading and research ahead for me!

Anyway, I am to have a further MRI scan in Sheffield in January, which Prof S will then compare with the last one (June 2019), before he makes a final decision.

It was so good having Niamh with me to help with the practicalities of getting there, provide moral support and to discuss things with afterwards. I’ve had so many medical appointments over the last few years and it was good to get the views of someone who is new to it all.

We were rather deflated on our journey home. We had been sure we would have a final answer at last and be able to fully focus on either Sheffield or Moscow, rather than this weird limbo we have been in for too long. Having reflected on this further, I feel that treatment in Sheffield is now outside my reach and I need to spend the next few weeks focussing on getting to Moscow. I’m booked to go on 16th March, which is just 11 weeks away!!!

So, let’s get on with fundraising!

At the start of December, we appealed for people to donate to the fund instead of buying Christmas presents and/or cards. We were hoping to raise a few hundred pounds and to hit the £20K mark but your kindness and generosity has been astounding and this appeal has raised an amazing £1,430 …thank you so much to everyone who responded ???

Our grand total now stands at …

We are hoping to squeeze in a couple of fundraising events before March and to do this we will need your help. Do you have any used bottle gift bags you would like to donate? These can be Christmas or any theme. If so, please let one of us know.

If you have any unwanted Christmas gifts we could sell or use as a prize, please also get in touch …we would be very grateful for anything you can give.

Information on fundraisers to follow (and we are always open to new ideas and suggestions too!)

I hope you all had a wonderful happy Christmas and wish you all the best for 2020. Many thanks for all your ongoing support ?

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111 Mrs Bump

There has been a lot going on over the last couple of weeks so thought I’d come back with an update.

Sheila ran another stall at the Vintage Village on Sunday and raised a very respectable £116. Alan very kindly sold a few items of clothing through his vintage shop, 20th Century Stores and raised a further £90.

So the vintage sale fundraiser had brought in a grand total of …

Thanks again to Alan and the Vintage Village, but most of all, to my lovely friend Sheila for so much hard work and for all your support ?

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Thank you to family and friends who have decided not to send Christmas cards this year and to make donations to my fund instead. This has raised a total of £470 …absolutely amazing! Thank you everyone ?

We had hoped to hit £20,000 by Christmas, but with all these amazing efforts, our grand total now stands at …

I had an appointment with my neurologist on Monday …always a bizarre experience. Neurology services are obviously over stretched and trying to summarise a year’s worth of symptoms, concerns and questions into a rushed 10 minute appointment isn’t easy. By the end of the appointment, it was agreed that he will refer me to occupational therapy, write to Professor Sharrack and prescribe medication to address my fatigue and brain fog (assuming liver and kidney function tests are all good). He also suggested I stay off work until the end of term.

I have heard nothing further from Professor Sharrack and will find the energy to chase him again soon.

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Today I managed to fall down the stairs …I’m not quite sure how this happened, but I think my legs just gave way beneath me and before I knew it, I was on the floor at the bottom of the stairs!

Luckily I only have bruises, but I must admit I’m feeling a bit shaken by the experience. Steep Victorian staircases are not best ever for MSers it would seem!

I have only lived in this house for a little over 2 years and I was obviously aware of the unusually steep stairs, but had no idea how much of a challenge they would become for me. I mostly go up them on all fours, which seems to work well. Coming down stairs is a different matter and I really don’t feel safe a lot of the time.

I’ll add it to the list of things to worry about! ?

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You may remember a while ago I posted about Scott McCormick (From Gogglebox) undergoing HSCT at Hammersmith Hospital. Scott has been recovering well and has been keeping us all informed of his progress. He recently had an MRI scan – an insight into whether his MS has halted or not – today he got the results …

I am absolutely delighted for Scott. He has shared his journey on twitter and through videos he has made for MS-UK and the HSCT community has been following with interest. It has been wonderful to see him get better and better and to know that he is now looking forward to a happy healthy future with his family. I’m sure Scott will be a powerful voice for HSCT going forward and we are all very grateful to him for sharing his experience.

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110 Ups and downs

Well it’s been another week of ups and downs here at Warrior Towers. After a week off work, feeling physically and mentally low, I managed to pick myself up in time to get myself to work on Monday. It felt good to be there …I work with the most amazing team of kind and supportive people and I love the work we do (supporting children in care to achieve in education).

Unfortunately, by lunch time, I was struggling. The pain in my right hip, both thighs and left lower leg got worse and worse through the day and I found the noise and lights in our busy open plan office to be a challenge to my ears and eyes.

By the afternoon, I was struggling to follow conversations and to process information. “Brain fog” is a real and frightening symptom commonly experienced by those with MS. The brain is working so hard to deal with the attacks and damage to the central nervous system, that there is little left to deal with the extra challenges of life …or of work.

I went home on Monday and cried. Never have I felt such a failure …and a fraud. I care so much about the children I work with, but they are so important and deserve the very best support, not someone who isn’t functioning properly.

I decided not to go to work on Tuesday. My GP has provided a sick note, which has gone some way to alleviate my guilt for not being at work.

Like all of those working in the public sector, we are over stretched and under staffed. I know that me being off work will add additional strain on my colleagues, at a time that’s already challenging, but I don’t feel I can be at work when I’m not able to do my best, or at least do a good enough job. Thank you to my wonderful team for everything ?

I have spent the week mostly resting and not doing much at all. The trouble with being off work is that it gives you too much thinking time …not good for an over thinker like me! I have managed to relax a little and to live in the moment rather than worrying too much. I use a meditation app called Calm, which has really helped and I’m starting to feel a little more level.

On Wednesday I went to a lovely pre-Christmas event at Seed, my local ethical beauty salon and returned the next day to have my nails Christmasified! Small things, but both lifted my spirits immensely. Today I met my lovely friend, Anne for lunch and girl friend therapy, so tonight I’m ending the week feeling more positive than I did at the start.

A few other things have happened this week …I discovered I have a routine appointment with my usual neurologist on Monday …lucky timing for once. I’ve had telephone contact with Professor Sharrack’s secretary to try to get my appointment with him moved forward (from February) …no answer on that one yet. I also have an appointment with Occupational Health next week, to talk about work and the support I will need in the future. I really want to continue working …I love my job and my team, I believe in what we do and when I’m well, I believe I do a good job. With all these phone calls and appointments, being unwell is becoming a full time job!

Today, I received a letter from the DWP. I knew this was likely to be the outcome of my application for PIP (Personal Independence Payment. With sweaty, shaky hands, I opened the envelope, fully expecting my application to be rejected, only to find I am to be granted lower level PIP! I am delighted with this outcome. For those of us with additional difficulties, life becomes more and more challenging and it also becomes more and more expensive. I have had to reduce my working hours because of MS and this payment goes a (very) little way towards addressing the shortfall. So the week has ended on a positive note and I’m very grateful.

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Some of you may know that my brother, Jimmy and his wife, Gill, opened their own brewery a few years ago. Since then, Swan Brewery has gone from strength to strength and they already have a number of awards under their belt.

The brewery holds regular and popular open days and Jimmy and Gill have decided that the focus of one of these days will be for them both to have their heads shaved to raise money for my treatment fund! Jimmy is currently sporting a rather impressive beard and this too will be shaved off! To commemorate this occasion, they will also be launching an exclusive new beer …they have been running a customer vote on Facebook this week to choose the name of the beer …head over to their Facebook page to find out the winning name.

This Sunday we have our stall at the Merry Little Christmas Fair at Stockport Vintage Village. Thank you so much to Sheila and Alan for their support. I will be there for an hour or two, if I am up to it and would love to see you there if you can make it.

The lovely ladies at Seed Beauty are pulling a plan together to climb mount Snowden to raise money towards our treatment fund. They have been persuaded to delay this until spring, when the weather will hopefully be more favourable. More info on this at a later date.

Thank you to everyone who has responded to our Christmas card appeal – making a donation instead of buying Christmas cards …I am touched by your kindness.

We have a few other fundraising plans in the pipeline, but will let you know about these once we have more detail.

Read more about MS “Brain Fog” on the MS Trust website here … MS Trust

you can find out more about the Calm app on their website … Calm They are also on social media.

You can find out more about Seed Beauty on their Facebook page (Seed – Beauty Therapy) or Instagram (@seed_beauty_158).

Apply for PIP here … PIP (Please seek support with this. I plan to write a more detailed post on the whole process at a later date).

Find out more about Swan Brewery here … Swan Brewery (or on their Facebook page).

Full details of Stockport Vintage Village can be found here … Vintage Village (they are also on Facebook, Instagram and Twitter).

Thank you once again for your ongoing support. The last few years have been tough and fundraising is a daunting task, but one thing I have discovered is that people are mostly kind, supportive and generous and for that I am eternally grateful …thank you ?

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109 A quick update

This is just a quick post to touch base and to update you on a couple of things.

I was going to write a post entitled “A day in the life of an MSer” but as I started writing it, I began to realise it was too bloomin miserable for public consumption!

I’ve had a difficult couple of weeks, overwhelmed with MS symptoms and generally feeling rubbish. I didn’t manage to go to work at all last week but I’m hoping to get back to it on Monday. I think I’ll delay my “day in the life” post until I’m feeling more positive!

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I don’t live in the same place that I grew up and I have friends and family all over the place. I keep in touch with many by email, whatsapp, Facebook, Messenger etc and really love to hear from people. Over the last few weeks, I’ve had lots of lovely messages from friends and family, many of which I haven’t managed reply to. I’m sorry for being so rubbish at this. I really do appreciate hearing from you, I’m not ignoring you, I haven’t forgotten you …I’m just struggling to deal with everything at the moment.

Something else I’m in danger of falling behind on is this blog, so this post is an attempt to address that.

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In amongst the stressful last few weeks, I received some really good news …a letter from Professor Sharrack at Sheffield Hallamshire Hospital. I have an appointment with him in February and he is hoping to bring this forward. He has also asked me to bring a copy of my previous MRI scans (on a CD) so that he compare it with the scan I had in June. It’s hard to say whether this is a hopeful step or not (I’m trying not to get my hopes up), but at least I’ll have a final answer on HSCT in the UK a little sooner previously thought.

In the meantime, we are still fundraising and aiming for my date in Russia in March. Our fundraising total now lies at …

It would be amazing to get to £20K before Christmas ????

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We are asking people to think about the Christmas cards they send and consider whether there is a different way to approach this …

Are you about to hurry out to buy Christmas cards that will eventually end up in the bin? Why not help us instead…

This year, instead of buying Christmas cards or receiving a Secret Santa present, please consider donating the money you would usually spend to our fundraiser?

Not only would this help us to get a little bit closer to our target, but it would also help to save our planet and hopefully relieve some Christmas stress!

It is estimated that around 900 million Christmas cards are sent each year in the UK. When you factor in postage costs, that’s a lot of money on something that will be forgotten about in just a few weeks time. Why not send an e-card, text, WhatsApp or Facebook message to wish your loved ones a happy Christmas …real life hugs and good wishes are even better! ❤️

Thank you so much for anything you are able to donate. Please share this idea with your family and friends and anyone you know who would like to find a way to help others at Christmas time ??❤️

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Our next fundraising event is the Vintage Village Merry Little Christmas Fair on Sunday 8th December from 10am till 4pm. Thank you for all your kind donations of items to sell ?

Please come along and join us if you can …I’ve heard there will be mulled wine! ?

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108 Fundraising update

After a busy week I have finally found some time to update you on the total raised at last week’s Vintage fair …

We are absolutely delighted with this total and had a fun day at the fair as well ❤️
You may recall from my previous post that a very kind lady on a neighbouring stall gave us some advice on some of the jewellery items we were selling … this turned out to be excellent advice. These items are now being sold through a jeweller and have raised around £230. Thank you so much Ann, for your expert knowledge and kind advice ❤️

We will be back at the next Vintage Village fair, hoping to sell the rest of our items. Please come along if you can ❤️

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I had my PIP assessment on Monday. On the surface, it wasn’t a bad experience, but I don’t feel much happened during the assessment to truly assess my limitations or to support my claim.

For those that don’t know, “Personal Independence Payment (PIP) can help you with some of the extra costs if you have a long term ill-health or disability”.

Personal Independence Payment (PIP)

Numerous charities and organisations that support those with medical conditions and disability are critical of the government’s approach to the assessment process for PIP and other disability benefits. The MS Society is currently campaigning on behalf of those with MS who need this payment and is reporting on some of the difficulties MSers face with the process.

PIP doesn’t make sense

“The assessor rushed through the questions and didn’t give me a chance to explain anything properly” …this was entirely my experience too. She stopped me going into detail about my difficulties and there were several times when I mentioned a particular issue but she didn’t even write it down.

“It makes me really angry. You have a diagnosis of MS and there are clinical records that back that up. And then you get a report that completely contradicts it. It doesn’t make sense.

You don’t want to prove you have MS, but you have to prove how badly it affects you. To have someone judging you for a chronic illness is terrible.”

So, I’m not holding out a lot of hope that I will be successful. I’ve had to reduce my working hours because of my illness and struggling financially as a result. Life with a disability is expensive and stressful. I will definitely appeal if I am turned down and have some kind offers of support with this from friends with expert knowledge.

You can sign the MS Society open letter to the next UK government on this subject here … link

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Other than the vintage fair, we don’t have any further fundraising events until after Christmas.

I haven’t sent Christmas cards for several years now after I started to become concerned about the huge amount of waste they generate and amount of money they cost, which I’d rather spend elsewhere. Instead I donate the money I save to charity (Children in Need, the NSPCC, the RSPCA, Myeloma UK and the MS Trust have all been recipients in the past).

This year, I’ll be paying into my HSCT fund.

There is a growing trend to stop sending Christmas cards and it is thought that many more people will be choosing this option this year. An unbelievable 1.5 billion Christmas cards are thrown away by UK households each year, (according to researchers at Imperial College) and it would be amazing if we could reduce this figure.

If you do decide to stop sending a Christmas cards and donate to a worthy cause instead, I do hope you’ll think of us. Even small donations can make a big difference and I would be very grateful for whatever you can spare ❤️

GoFundMe

Thank you for your continued support ❤️?❤️

107 Vintage Village day

It’s been a long and tiring day so please forgive the shortness of this post.

Today was Stockport Vintage Village Fair and after all the hard work over the last few weeks (mostly by Sheila) we finally had our stall up and running.

We have received donated items from a host of sources over the last few weeks and are so grateful for the kindness and generosity of friends, family and strangers alike. Sheila had the tough job of sorting through and pricing everything, with Alan’s expert guidance. On arrival this morning, a more experienced stall holder also gave her expert opinion on a few items and as a result we kept some back and will be taking them to a jeweller later this week. There are also a few items that didn’t sell today but which may achieve a greater price at auction.

We had a steady stream of visitors throughout the day and the takings purse was looking rather full by the end of the afternoon. I have left the counting in Sheila’s capable hands and will update you on the total raised once I have it.

I’d like to say a special thank you to my lovely friend, Sheila, for all her hard work and to Alan for providing the stall space. Thank you also to family and friends who called by this afternoon and helped to keep our spirits up.

The next Vintage Village event is the Merry Little Christmas Fair on Sunday 8th December …we’ll be there with the rest of our items and anything else donated before then.

You can find out more about the Vintage Village on their website … Vintage Village

You can also find them on Facebook and Twitter @Vintage_Village and on Instagram @vintagevillageuk

You can find out more about Stockport’s beautiful historic market hall and the regular market here … Visit Manchester – Stockport Market Hall

For a huge array of vintage items available 3-4 days per week, 20th Century Stores on the market place is well worth a visit … 20th Century Stores

In other news, I have my dreaded PIP assessment tomorrow (2nd attempt) …wish me luck!

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107 Fundraising plans

Thank you to everyone who has got in touch since we relaunched our fundraising efforts – your offers of help and support and your good wishes mean a lot ?

Stockport Vintage Village

We will have a stall at the next Stockport Vintage Village, which takes place from 10am till 4pm on Sunday 10th November. If you have anything you could donate, please get in touch.

Please also pop along on the day. The Vintage Village is a great day out and there are some lovely shops, bars and restaurants nearby too.

I am looking at arranging some sort of ladies afternoon tea event towards the end of the year, maybe with music, games and a quiz thrown in! I’ll let you know more about this as my plan comes together.

Seed Beauty Team Walk Challenge

The lovely team at Seed Beauty have volunteered to take on a sponsored walk challenge. Katy, Kate, Yssy, Jules and Vicky are just at the beginning of putting together a plan for a sponsored walk. Watch this space for date, distance and location.

You can find out more about Seed via their Facebook page … Seed – Beauty Therapy.

My sister, Glenda, is planning to get her Nordic Poles out and complete a Nordic walking challenge.

Our cycling team have expanded and are exploring a route for their cycling challenge. This is likely to take place in March when the weather is a little brighter and the day slightly longer, but Alex, Connor, Carl, Sophie, Niamh and Callum will be in training throughout the winter.

We have a team in Leeds who are looking for a Tough Mudder event.

Lots of people have asked if we will be doing another evening fundraiser – I know everyone really enjoyed the last one and those who couldn’t make it would love to come to the next one I’ve even had a 5 year old ask when my birthday is, as he loved my last party so much! We are working on a plan for another one …no details yet, but watch this space!

We would like to get some t-shirts printed, for people to wear when completing challenges. Do you know anyone who may be able to do this for us at no or low cost?

If you have any fundraising ideas or anything else you could do to help, please get in touch with one of us

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106 Vintage items wanted!

I have some exciting news I want to share with you …

My lovely friend, Sheila, will be running a stall at the next Stockport Vintage Market to raise funds towards my treatment.

The Market takes place on Sunday 10th November from 10am till 4pm at Stockport’s beautiful historic market hall.

Do you have anything you could donate to our stall?

Vintage clothing
Collectibles

If you do, please pass them on to one of us, or let us know so we can arrange collection. If you’re not sure if something you have would be suitable, please get in touch and we’ll let you know.

You can find out more about the Vintage Village on their website here … Stockport Vintage Village

And on their Facebook page … Vintage Village at Stockport Market Hall

Both are well worth a visit for their fabulous photos alone!

Thank you so much to Sheila and also to Alan for making this happen.

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We are working on a few other fundraising ideas and will share those with you once our plans are a little clearer.

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My plans for treatment in Russia in March are coming along nicely. I have updated the hospital with my most recent medical information and the process for a travel visa has begun. I’m feeling very positive about my plans now and can’t wait to destroy the MS beast!

Thank you all for your ongoing support ?

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105 Christmas

This started off as Niamh’s idea and has spread to the rest of my immediate family. I was a bit hesitant at first, concerned that I would be spoiling everyone’s Christmas, but they were all so enthusiastic and supportive …thank you all …I really am grateful ?

Now that I have got used to the idea, I realise that I am really looking forward to a Christmas where the focus is on time spent together, rather than the rampant consumerism we are all compelled to partake in.

It will also make this my most environmentally friendly Christmas yet, which makes me happy ?

I haven’t sent Christmas cards for some time now, instead donating money to charity. This year I will give this to my HSCT fund as well.

xxx

Thank you to everyone who has responded to my last post, asking for fundraising ideas. I’ll share more news on this once we’ve formed up some plans. We are still open to ideas and suggestions, so please do get in touch if you have any.

I also want to thank a couple of people who have kindly made recent donations and helped to get things going again ?

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Fundraising Relaunch

I have news!!

This week I have been in touch with the clinic in Russia, updated them with my most recent MRI info and have been allocated a new admission date …

This gives me a few months to prepare, lose some more weight and of course, fundraise!

So, the day has come for us to restart our fundraising efforts. It’s not easy asking people for money, time, help, support … but here I am!

We are already working on some fundraising event ideas, including a bike ride, sky dive and various social events.

If you can help us in any way, please get in touch.

Is there a challenge you’d like to take on that you’d be willing to do as a sponsored activity? Even better if your could get a team together!
Do you have anything you could donate for us to auction or give as a raffle prize?
Do you have access to a venue we could use for an event (day or evening)?
Do you know someone who could print t-shirts for free (or cheap)?
Have you got any ideas for a fundraising event?
Do you have any links with local media?
Do you know any celebrities who may be willing to help?
Could you help us with a quiz night?
Is there anything else you could do to help?

You can speak to any of us in person, via this blog or through any of our social media pages …

Facebook – Another MS Warrior

Instagram – @anothermswarrior

Twitter – @AnotherMSWarrio

Thank you for reading and for any help you can offer xxx

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