Snowden – Another MS Warrior

114 Feeling positive

Well, after my slightly miserable New Year post, I am pleased to report I’m over that little hurdle now and feeling much more positive. I went back to work on Monday and had a good week. I was tired by the end of it, but not as overwhelmed with fatigue as I was back in November and December. It actually felt good to be back with my fabulous work mates and to get back into a routine. Thank you everyone who helped to make it a good week.

I am booked to go to Russia on Monday 16th March, which is just 9 weeks away! I have completed my hospital registration forms and am awaiting my official invitation, which is needed in order to obtain a Russian visa. I also hope to book my flights in the next few days. At long last, it’s really happening!

There is a lot to do over the next 9 weeks …

We will be having a last push on the fundraising and have a few plans coming together (more info below).
I need a dental check up (it is best not to have dental work for 12 months after HSCT).
I need to plan on what to take with me and pack everything for a month into one suitcase.
I need to think about how to prepare the house for my return with a low immune system.
I need to mentally prepare myself for the treatment and for a month away from home, from family and friends and from my beloved cats!

I’m the kind of person who likes to make lists, so hopefully this will help me to get organised.

It’s the first Vintage Village fair of the decade tomorrow and Sheila has decided to give it a go! If you’re in the area, please pop in and say hello and grab yourself a vintage bargain.

We are in the beginning stages of organising an afternoon tea party shortly before I go (hopefully Sunday 8th March). This will be a fundraiser and also a chance for me to see everyone before I go. We will let you know more once our plans are finalised.

There is going to be a fundraising event at Swan Brewery in Herefordshire on Friday 3rd April. My brother and my sister in law are planning to shave their heads and beard (only one of them has a beard!) and to launch a new beer to mark the occasion! I am so grateful to them for doing this and since I’ll have lost my hair by then too, we can all be bald together!

The lovely ladies at Seed Beauty in Edgeley are doing a sponsored walk up Mount Snowden in North Wales. This will be happening towards the end of March and I look forward to following their story from Moscow.

As you can probably tell from the numerous requests for bottle gift bags, we also have a bottle lucky dip coming soon.

1 year ago we had just crossed the £10K line and here we are now a little over £20K. This is such an amazing achievement and just shows what people can do when they work together. It so good to see kindness and generosity shining through, even though we are living in such uncertain times. I am so grateful to every one of you who has donated, responded to requests for items, come along to an event, taken on a challenge, shared or liked one of our posts, read this blog or sent a message of support …thank you all ?

You can find out more about Stockport Vintage Village by clicking here

You can find out more about Swan brewery by clicking here

You can find out more about Seed Beauty by clicking here

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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 ?

GoFundMe

Sheffield here I come!

Last weekend, Matt Stevens took on the challenge of swimming a mile of Lake Windermere. Matt is a keen swimmer and a member of Droylesdon Sub Aqua Club.

Here is Matt’s account of his day …

“As you’re all aware, I was swimming the Great North Swim this year for a very very worthy cause … I was helping raise funds for Vicky Swan (Niamh and Connor’s mum) for her MS treatments.

We arrived at Windermere on Friday night, in the pouring rain. The wind was howling and quite honestly I didn’t want to do the swim, the organisers had talked about cancelling the event on Saturday due to the weather, so we all had a few drinks for a little courage.

On the Saturday morning we got to the swim site and were met with horrible weather. Cold water, strong winds and driving rain made the organisers cut the swim short this year … down from a mile to about a kilometre.

The below picture does not do the waves, caused by the wind, justice …

For the first half of the race, we were swimming directly into the wind and waves. I tried to swim crawl but ended up swallowing too much water (I thought that the ferries would be beached If I continued) so I was forced to swim breaststroke for the first half. Ducking through waves as they came at me. When we turned the corner after the second buoy the wind started assist, so I switched back to crawl … a bit easier and a bit less water was swallowed. I was able to make a bit of time.

I made it back!!!

I’d like to thank all of my sponsors, without you very kind and generous people, I probably would have bottled out this time. Talking of sponsors, I am now collecting money. So if you were kind enough to sponsor me for this … I’m coming to get ya J LOL

See you soon and thanks again xxxx”

Well done Matt! Fantastic achievement and you have inspired Sophie and Niamh to think about doing it next year!

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A few weeks ago, I mentioned in a blog post that I was planning to make a determined plan to lose some weight. There are lots of reasons for this – I want to be healthier and fitter and I want to look better and feel more comfortable in my clothes. Perhaps the most important reason of all , is that when I receive the chemotherapy element of my HSCT treatment, the dosage will be calculated on body weight. Chemotherapy can be very challenging on the body, particularly on the liver and kidneys, so getting the dose to as low as it can be, is definitely a good idea.

Anyway, I am pleased to report that in 6 weeks I have lost 21lbs and 5 inches from my waist!

The internet is full of useless information!

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I also have another exciting piece of news to share with you …

A while ago, I mentioned that I had discovered that there is soon to be a UK trial, comparing HSCT and Lemtrada (a high efficacy DMT). See blog post “Decisions, decisions” dated 4th May, for more.

To cut a long story short, I have an appointment this week with Professor Sharrack (Neurologist) and Professor Snowden (Haematologist) at the Sheffield Hallamshire Hospital. Most exciting of all, the appointment letter says this is an “HSCT Clinic”!

I have known about this for a few weeks now and although it’s a huge step towards accessing treatment here in the UK, I am trying very hard not to get too carried away just yet. Hopefully there will be more to report soon.

In the meantime, I have been busy gathering all my medical letters, obtaining scan reports and producing a timeline of my disease history so I can arrive looking as if I know what I’m talking about!

So, please cross your fingers and toes and wish me luck. If you’re the praying kind, please do that too. I don’t think I’ve ever been so anxious for a medical appointment as I am for this one.

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You can find out more about Droylesdon Sub Aqua Club by visiting their website here

If you would like to sponsor Matt, please click on the link below and mention him in your comment…

GoFundMe