136 New year, new blog post


Happy New Year everyone. Thank goodness 2020 is over – it has been a dreadful year all across the world and I don’t feel I can begin a new year blog post without first acknowledging the huge loss and suffering the COVID-19 pandemic has caused to so many. Over 1.8 million lives have been lost to the virus worldwide (over 73 thousand in the UK), with many more left with debilitating health problems and organ damage following recovery from the virus itself. 

Another consequence of the pandemic has been the numerous lockdowns and other restrictions we have all had to cope with for many months. The practical impact and mental health consequences of this have been enormous and it’s going to take us all a long time to recover.

But 2021 is here at last! The start of a new year always brings new hope and perhaps resolve to work towards a better future. This is how I’m choosing to view today.


I have discovered a lot about myself this year.  Perhaps enduring long periods of solitude forces us to look inward and to question things more.  I have found that I am more self sufficient than I thought and despite having many down days, I have managed to pick myself up and do something about it.  Perhaps the greatest thing I have learnt is that it is no use hanging on to things/situations that no longer serve you, even if you believe everyone expects that you should. My two big decisions (taking ill health retirement and moving house) have come from this.  I realised I was putting all my energies and focus on to hanging on to my work and my home, but that both of these were causing me harm and leaving nothing for any other aspects of my life. I’m still very sad about both, but glad to have made these decisions and confident that I am doing what is right for me. 

It’ll be while until both of these come to fruition, so I’m planning to spend the next few months doing all I can to get myself ready.  Despite living alone, I have eaten and drank for too much over the last few weeks (stressful times often lead to comfort eating for me) … now need to get a grip! When your body doesn’t quite function as it should, carrying extra weight adds further stress to a messed up system. 


I’m not one for new year resolutions but by the end of January, I plan to be eating healthily, back in a proper sleep routine and moving a bit more.  And I still have a lot of sorting and packing to do too! Plenty to keep me busy. 

The other thing I have realised during this year of lockdowns, is how important people are to me, well, actually I already knew this, but this time of reflection has doubled me belief. We don’t need lots of “things” in our lives, we need authentic connection with people who mean something to us.  So, when life returns to “normal”, I’m going to focus on time with good people to help recover from this last year and invest in a better future. At this point, I’d like to say a massive thank you to friends and family who been such a great source of support. I’m not always good at staying in touch, but I do appreciate hearing from you and think of you all often.

Recent news of vaccine rollout has given us all a boost … light at the end of the tunnel at last! I think I am in group 6 on this priority list, so may still have some time to wait (but that’s fine).  


So I am starting the new year on my own, in England Tier 4 (lockdown by another name) with some feelings of trepidation, but mostly optimism for the year ahead, at least once these first few months are over. 

HSCT is still forever in my mind, although it’s obviously on the back burner for now.  The hospital in Sheffield has not resumed treatment for MSers since it was suspended in the summer; I am uncertain of the situation in London.  I know a few have braved the journey to Mexico over the last few months and others are going soon.  The hospital in Russia is continuing to treat a few patients, however, travel restrictions mean it is impossible to get there at the moment (if I understand correctly, the Russian authorities are not currently issuing visas to UK passport holders). 

I’d like to end by sharing a picture of a Facebook conversation with my friend Beth, who has recently learnt the art of Tarot reading.  This was the outcome of a little online card picker she set up.  Fingers crossed 🤞🏻🤞🏻🤞🏻

Take good care of yourselves and try to stay positive if you can.  If that doesn’t work for you at the moment, accept where you are and know that you don’t have to be strong all the time, just do your best to keep going (an achievement in itself when life is a challenge).

❤️

126 Isolation day 18

I’ve been a bit unsure on whether to keep updating this blog at the moment. My treatment is on hold, life is on hold, in fact all our lives are on hold, the whole world is on hold.  What strange times for us all.

I’m going to keep writing, because it really helps me to do so.  I don’t mind at all if no one reads! 

Well I’m now on day 18 of isolation and this time has been strange, interesting, unsettling, boring, frightening, calming and a million other things.  The first few days were really tough. It really felt that I would never see my friends and family again, I was scared I wouldn’t cope being entirely in my own and I was worried about what will happen with my MS while waiting for the world to go back to normal.

Since then, I have managed to get myself into a new routine, to get on with work, to do a few jobs in the house and to mostly stay positive.  There are times when it’s really hard.  My little house can feel huge and empty and at other times, small and oppressive. Sometimes I feel desperately lost and alone, but powerless to do anything about it.  I have lovely friends and family in my life and appreciate every single one of them.  I have numerous people I could call or text or message but somehow I don’t – this is something I am working on. Most of the time I feel fairly upbeat, positive and optimistic.  I feel grateful for what I have … my lovely home, my crazy cats, a job I love, my fantastic workmates and most of all, my friends and family.  But sometimes the misery grabs me.  I’ve always been like this but have always had options to go out do something, make plans, distract myself …it’s not easy to do that when you’re stuck inside your own four walls with only cats for company!

This is so true.  Right now I am safe and I feel luck to be safe.  I am able to carry on working from home and I have daily remote contact with lots of people.  I know I am in a much better position than many are at the moment.  I am only leaving the house for a daily walk in the local area and Niamh is doing my food shopping for me.  I can manage like this for as long as I need to.

I am trying to push myself to walk every day, even when I don’t really feel like it and I’m finding that it really does lift my spirits. I have enjoyed spotting children’s pictures in windows and noticing all the good things about where I live. 

I am lucky to live close to a beautiful park and am visiting when I can manage it. 

I realise that we are all going through a period of adjustment at the moment and we are all still processing everything we are dealing with and the rapidly changing world in which we live.  This will be taking a toll on us, even on a subconscious level.  When we are unsettled by change, it’s the stability of relationships that gets us through.  But relationships don’t quite feel right from a distance and that’s why I miss people so much and feel a bit out of kilter. 

Apologies to anyone I have accidentally left out!

So, how am I managing my time? 

Well I have discovered I feel much better when I stick to some sort of routine, so I continue to get up at my usual time and go to bed at my usual time.  I am working from home 4 days a week, which is helping to keep me grounded and gives a sense of purpose.  On the other days, I’m doing the usual housework, talking to friends and family, talking to my cats, trying a bit of yoga and meditation and making lists on all sorts of topics.  There are a few jobs at home, like putting pictures up, that I haven’t got round to doing and I’m telling myself how lucky I am to have all this spare time To get these things done …I just need to muster up the motivation to actually do it!  

If anyone has any top tips for coping with isolation, suggestions for new hobbies or activities I could try or ideas on how I can use this time to better myself, please send them my way. 

Apologies to anyone offended by swearing 😊

I also have an important decision to make …do I cut my fringe or let it grow?!

Sia

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

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 

49 She’s a waterfall …

I’ve been feeling a bit sorry for myself over the last few days.  Lots of reasons – worrying about the future, wondering how long I can manage working full time, resenting how much time I spend planning how to preserve spoons (see previous post on “spoon theory”), noticing worsening symptoms and also dealing with feeling cold most of the time.

According to the MS Trust, between 60 and 80% of those with MS struggle with heat sensitivity …I don’t think I fall into this group.  This is what they say about cold sensitivity…

“Cold sensitivity is less common with MS than heat sensitivity, and it tends to affect different symptoms. The symptoms most likely to be affected are nerve pain, mobility and spasms. Depression and fatigue may also be triggered by the cold, particularly if it coincides with poor weather and less sunlight.” 

I think that sums it up nicely!  I always struggle mentally with winter and this year is no exception.  In addition to this, my thyroid levels are all wrong at the moment, so feeling cold is something I’m stuck with for now.   As well as MS, I have Hashimoto’s Disease (autoimmune thyroid disease) and am currently working with my GP to get my meds at the right level – unfortunately we’re not there yet! 

Yesterday, whilst scrolling through Facebook, this photo of me from exactly a year ago popped up …

A year ago I could go to a gig and dance all night, I didn’t need a walking stick or a Blue Badge and although I was experiencing episodes of fatigue, I didn’t have to give too much thought to how many spoons I had left to get through the day.   I am haunted by the feeling that I’m slowly fading away. 

Today I met with my lovely friend, Beth for a coffee and a chinwag (therapy really!) and when I got in the car to travel there, one of my favourite songs came on the radio …

This song has a lot of meaning for me – it tells me I can get through things if I just keep going.   So, I can get through this bit of a blip too.   Thank you Stone Roses and XS Manchester. 

Later, I had a visit from my son and his dog and we went for a walk in my local park …lovely. 

So, today has reminded me that the best things in life are all around us …we just need to make sure we value and appreciate them.  Here’s my list from today:

  • Music 🎼
  • Friends 👭
  • Coffee ☕️
  • Cake 🍰
  • Family 👩‍👧‍👦
  • Pets 🐶😺
  • Fresh air 🥾
  • Sunshine ☀️
  • Trees 🌳
  • Water 💦

❤️

GoFundMe