Tag: Seed

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


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 

GoFundMe