Tag: Christmas

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 ❤️💚❤️

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 😘

GoFundMe

60 Fatigue

After an amazing Christmas break, I returned home with a long list of jobs to do and people to see before I have to go back to work next week.  So far I’ve been able to tick very few items off my list, as a bout of energy-sapping fatigue has gradually crept up on me.  

Yesterday, I planned to go to the cinema in the afternoon with Niamh, then to a local pub with a friend, to see another friend, singing with her band.  When I woke up, I realised I didn’t have enough spoons to get through both, so I cancelled my evening out and had a lovely afternoon at the cinema followed by a quiet evening at home. 

This morning I awoke after 9 hours sleep, feeling exhausted and heavy.  My feet and lower legs feel cold and dead.  After struggling for a few hours, I cancelled my plans for the day and went back to bed.

I hate the way this disease is robbing me of being able to do what I want and of time with people I care about.  I am comfortable with my own company, I really don’t mind being on my own, but I’m also a sociable person and my friends and family are important to me.  

One of the things I have done to help me cope with bouts of fatigue is to reduce my hours at work, so when the new term starts I will be working 4 days a week instead of 5.  I’m a bit concerned about how this will work out financially, but I’m hopeful I’ll manage and it should give me more time to rest, to see friends and do all the other things I need to do.  

…

I wouldn’t usually wish to link to the Daily Mail, but they have written a piece on Caroline Wyatt and her experience with HSCT.  The piece also refers to the sad death of Nyta Mann, a BBC political editor who chose a different route when MS took over her life.

How two BBC stars took different paths dealing with MS

Spoon theory

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 

58 Fundraising update

Well, today has been a wonderful day in terms of fundraising for my treatment. 

Late last night, I spotted a post in one of the HSCT support groups from someone who had HSCT earlier this year, is making an excellent recovery, has some spare cash and wants to use it to help others.  As you can imagine, he had many replies (there are literally hundreds of people from all over the world, trying to raise funds for HSCT).  I added my fundraiser to the responses, thinking if I was lucky, I might receive a couple of quid from this unexpected source.  

I was very pleasantly surprised this morning when I found that this kind person and his wife have donated $225 (£179) into my account.  If he has paid this amount into the accounts of everyone who has responded, I reckon he will have paid out almost $10,000.   What a heart warming and generous thing to do ❤️

I logged in to my fundraising page to thank the kind stranger for his donation and found I had received a message from someone I haven’t seen for many years – a school friend of my brother!  He is running a half marathon in early January and is raising funds for my campaign! What an amazing thing to do! Thank you so much George. 

Later at work I discovered that my manager, rather than buy all the team a small gift for Christmas, has made a donation instead. My lovely work team were in full agreement and I must admit, I had a tear in my eye when I found out ❤️

And to complete this amazing day, I came home to a letter from the tax man informing me that they are giving me a rebate of £63 …not a huge amount I know, but I usually only hear from them when the error is in the other direction! 

I’ve been feeling a bit overwhelmed recently, at the enormity of the task ahead, but today has given me such a boost and I am feeling optimistic again! 

GoFundMe

We have plenty of other fundraising events coming up …

  • Our evening event is almost confirmed …date to follow.
  • Cal’s head (and chin) shave will take place soon.
  • My mum’s coin and stamp collection is going to the sale room in January.
  • Niamh and Sophie are working on an open water swimming challenge for early Summer.
  • Discussions are ongoing for a sponsored tandem skydive.
  • Glenda is taking part in a sponsored Nordic Walk.
  • Fiona and Kyra are taking part in sponsored running events. 
  • Anna and Zeb have a stall at their school Christmas fair.

52 Hospital blues

Today I had an appointment with my neurologist at Salford Royal Hospital.  All my previous appointments have been at Stepping Hill, but last time I saw him, he suggested I see him at SRH, where he and his team are based. 

So, last night I spent quite a bit of time preparing by making notes and gathering documents together, set my alarm for 6.30am and following a sleepless night, got up and ready and set off for the hospital. 

I was a little early so had time to grab a coffee and admire the hospital building, before checking in for my appointment.

It was at this point that I was informed that there was no appointment and my neurologist is on holiday!  I was told that I should have received a letter about this and it wasn’t possible to check if an alternative appointment has been allocated because her system couldn’t communicate with the neurology system!  

I was upset/angry/disappointed by this, perhaps more so than I should have been and basically sat in the waiting room for quite a while, feeling helpless!

As mentioned before, Salford Royal is quite an impressive hospital, with a cafe and shops, so I indulge in a little retail therapy and another coffee, then set off for home.  

I used to work in Salford and know of a sneaky back way on to the M60, missing out the M602 …what I didn’t know is that there are roadworks on my sneaky route, meaning my journey home took almost 2 hours!  I think the radio station I was listening to must have known …

I was relieved to get home, then flabbergasted to find this on my doormat …

No mention of my appointment being cancelled, but notification of another appointment (with a different neurologist) next Wednesday!  

I don’t know what to make of this?!  The new neurologist is one I’ve never met, but know from others that he is not pro HSCT.  I would really prefer not to see him.  I have put in calls to my neurologist’s secretary and my MS Nurse and am waiting to hear back from them. 

Why does all this matter? …Well, as you know, I am worried about the progression of my Multiple Sclerosis and would like to have HSCT as soon as possible to try and halt the disease and prevent further damage to my brain and spinal cord.  I have been in touch with a clinic in Russia and am frantically trying to raise the funds to pay for treatment.  

Fundraising is stressful and exhausting, at a time when my mental and emotional reserves are low and I also don’t relish the prospect of travelling for treatment, or more precisely, the journey home following such a gruelling procedure.  If I could have HSCT in the UK on the NHS, much of my stress would be removed and I could focus my energies on staying well and taking care of myself.  I’m find it really hard to keep going with all of this. 

I know the chances of me getting treatment in this country are slim, but I wanted the chance to talk to my neurologist about it to see if he would consider referring me.   I also hoped that, even if he felt unable to support my treatment in the UK, he might at least give me his blessing and be willing to monitor me when I get back from Russia.  Now, I don’t seem to even have the chance to speak to him! 

Anyway, I’m off out for my work Christmas do this evening, so will hopefully pull myself together, put my happy face on and have a good evening.  I consider myself very lucky to have fabulous workmates, so hope to be feeling a bit brighter by the end of the night 🥂

50 Wilmslow Festive 10K (and Blue Badge trial run!)

Today was the day of the Wilmslow Festive 10K.  Unfortunately I wasn’t well enough to go and cheer the team on and to be official photographer, but they managed to get one or two pictures of their own, after their run.  Other photos are from the Run North West official Instagram page. 

Run North West

There was the usual chaos and crowds before the start with Niamh and Cal unable to find Jake and Jess.  Jake’s brother and his fiend were also running today, but I don’t think they all managed to get together until after they had finished. 

It’s been very cold here recently and today was no exception but it was also bright and dry, so perhaps good conditions for running (says someone with no knowledge at all of what constitutes good conditions for running!).

Niamh continues to struggle with her hip injury, which has impacted on her training and flared up again this morning.  She is a little disappointed in her time of 1 hour and 5 seconds and I think she’ll be giving running a miss for a while now (she is however, talking about some sort of swimming challenge and a coast to coast walk, so there really is no stopping her!).  

I haven’t heard the times for the others yet but have heard that winner of the women’s race, Eilish McColgan achieved a new course record of 32:40 (perhaps I was right about the running conditions after all?!) .

The guys have collected their medals and headed home for a well earned rest, some warmth and a Sunday dinner! 

Well done all of you …absolute superstars ❤️❤️❤️❤️

In other news, my Blue Badge arrived in the post on Friday and I manage to give it a test run on Saturday. 

I met up with my lovely friends Brenda and Karen and we all squashed into my little car and headed off to the Christmas Makers Market at The Lowry.  It took a lot longer than planned to get there (the Mancunian Way is definitely to be avoided at this time of year!) and we were a little confused by the disabled parking arrangements, but managed to suss it out.  We received a top tip from the parking attendant – keep a photo on your phone of your Blue Badge – and may even look as if we know what we are doing next time! 

We had a lovely couple of hours looking round the market (although our total purchases for the day amounted to a loaf of artisan bread and a bobble hat – I don’t think we are quite committed to Christmas yet!).  I have been feeling a bit rubbish lately but found an afternoon with good friends really lifted my spirits …thank you, you two ❤️

Another thing I learnt was that if you try to eat a crepe with melted white chocolate, whilst standing up, holding a bag and a walking stick, when you’re feeling a bit wobbly, you will end up with melted white chocolate all over you! 

We returned to the car park and realised we had been so focussed on sorting out the parking ticket (which was lost for about 10 minutes) and the Blue Badge, that none of us remembered where we had parked the car!  So there we were, 3 supposedly intelligent women (all teachers!) with no sense of direction, spacial awareness or memory between us! 

Julie is still doing well on her alcohol free November challenge …not long to go now Julie! 🥂

I’ll update you on other plans soon xx

GoFundMe