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).

❤️

76 Slow recovery

Apologies for the radio silence …it’s been a tough old week for me!  I really did overdo it last weekend …on my feet for far too long, too much lifting and carrying and staying up late (for me anyway!).  I have felt overwhelmed with fatigue and ataxia** ever since and have been concentrating on work and resting. 

** Ataxia is the medical term for lack of voluntary coordination of muscle movements. In MS this can be seen as clumsiness, unsteady gait, impaired eye and limb movements, and speech problems.  In some cases, the lack of coordination is seen as tremor. 

Read more about Ataxia here …MS Trust – Ataxia

Other than that, it has been a really good week.  I’m still feeling thrilled at the amount of money raised at our evening event and still receiving donations from people who couldn’t make it …thank you again everyone. 

I was planning on taking a step back from fundraising over the next few weeks as I have a lot to do to get ready for my trip to Russia, but I’ve been contacted by a few people with amazing offers of help …

🧝🏽‍♀️ My fabulous friend, Beth, has recently learnt the art of Tarot reading, so we are planning a small evening of readings, drinks and nibbles sometime soon.  Thank you Beth xx

☕️ A local coffee shop / bar has offered to host an event …more info to follow once we have it.

🍲 A Chinese restaurant has been in touch to offer a fundraising evening.  We are at the very beginning of planning this one, but hopefully another fun evening coming soon! 

In addition, we have a few fundraisers already in the pipeline …

Glenda is taking part in a sponsored 10K Nordic Walk in April.

Niamh and a team of workmates from Stephenson’s are taking part in the Manchester Gung Ho inflatable 5K at Heaton Park on 6th April.

Alex, Connor, Gleaves and Carl are still working on their mammoth 100K (58 miles) Peak District Mountain Bike challenge. 

 Cal’s head and chin shave is coming soon!

I am planning to pay for my treatment before we fall off the Brexit cliff on 29th March, so will be borrowing the outstanding amount (and will continue to fundraisers when I’m well enough).

In other news, I have started the process of arranging Visas for myself and Karen this week …it’s really happening folks!  🇷🇺

I didn’t want to finish this post without acknowledging a big event in the MS world that took place this week.  As you maybe aware, Hollywood star, Selma Blair was diagnosed with Multiple Sclerosis last Summer.  This week, she rocked on the red carpet for the Vanity Fair Oscars afterparty, with a custom made cane, looking beautiful, fierce, vulnerable and so much more. 

She has also given a TV interview, despite being in the middle of an MS relapse affecting her speech.

Selma speaks openly and honestly about her MS on her Instagram page and has also had an interview published in Vanity Fair.

Thank you Selma for not hiding away and for your honesty in sharing the ups and downs of living with MS.  There is much happiness to share too and I’m glad that people are getting to see that. 

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