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).

❤️

132 Acknowledge, accept, release and let go

Yesterday on Facebook memories, this picture popped up and gave me a huge emotional jolt.  It was taken in August 2016 on holiday on the Greek island of Santorini.  It was a wonderful holiday … such a beautiful place, lovely fellow travellers and it was also the last time I felt truly “well”. 


I’d had two MS relapses by this point and had fully recovered each time.  At this time I was diagnosed as having had two episodes of Clinically Isolated Syndrome (CIS) and advised that a further episode was very unlikely.  I’m not sure how two episodes can be defined as “isolated” and it doesn’t seem to fit with the information available online. 

MS Trust: Clinically Isolated Syndrome (CIS)

At this time I was also at a point in my life when I finally felt things were going well in terms of my career and income.  Back in 2002, I had become a single parent, following an unhappy marriage and very messy divorce.  A few years later, I stepped back from teaching for less well paid jobs in order to have more time for my children (at this time I felt I had to be mother, father and grandparents to my kids, which didn’t fit well with working up to 60-70 hours each week as a teacher). This was the right decision for us and I have no regrets about doing it, but it left us rather short of money for quite some time.  

By 2015, my children were both adults and well on their way to independence, so I’d gone back into teaching, working in a local authority team supporting the education of children in care.  It was my dream job!  My experience in the classroom and in child protection was put to good use, I was with a wonderful team of colleagues and I was back on a progressive career path.

My holiday in Santorini in August 2016 was one of the first proper holidays I had been on in years.  I was feeling good, loving life and feeling confident about the future.  

At the top of Nea Kameni, Santorini Caldera


A few weeks after my holiday, I had my third major relapse and have never fully recovered.  This led to further investigations, MRI scans, lumbar puncture and eventually a diagnosis of Multiple Sclerosis.  I’ve had a continual increase in symptoms ever since, with new brain lesions identified at each MRI scan.  My next scan is in September of this year … please send positive vibes, in the hope that there is nothing new found.  I need this disease to stop and to leave me alone to live the best I can, where things are now.  

In 2017, I was doing reasonably ok in terms of mobility and moved to my current home, which I expected to be my forever home, in the Summer of that year.  At last my life was settled … perfect job, happy home, kids doing great and I was earning enough to afford the odd holiday. 

Then it all came crashing down.  Three years on, I now find work an increasing struggle and have had to reduce my hours and miss out on promotion.  I live in constant fear of falling down my stairs and no longer even try to get things from the cellar.  My house is going up for sale again soon and I’m heartbroken.  But I need to live safely and try to find a way to manage, if I need to cut my hours further.  

I’ve had counselling recently, which has helped me to see that I need to allow time for myself to grieve and mourn for all that I’ve lost, as I’ve mostly not allowed myself to do this.  Then I need to accept things and move on.  I’m a naturally positive and cheerful person, but in some situations this doesn’t help … I think my positive, ”just keep swimming” approach has got in the way of me being able to mentally process everything. 


I’m still doing daily yoga (except on those exceptionally hot and humid days we’ve had recently) and finding this a huge help mentally and physically.  My current mantra is …


I’ve managed to see a few friends recently, which has really lifted my spirits, but as the threat of a second wave of COVID 19 increases, I am starting to be more careful again and I don’t think it’ll be long before I’m back in lockdown, even if the government isn’t saying we should.

I hope you are all staying as safe and positive as you can, while all this is going on around us ❤️

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

69 Friends

I just wanted to send a message to friends everywhere, to apologise for being such  a rubbish friend these days!  

Although I am working slightly fewer hours these days, I still find that work takes up a lot of my time and energy (spoons!).  Whatever I have left is spent stressing over fundraising!  If the truth be known, I really don’t like the situation I find myself in and hate having to ask people for money.  It’s all so time consuming, stressful and a little humiliating.  I tend to be quite open with friends and family, but don’t share my whole life with everyone.  Yet here I am sharing my thoughts and information on my life and my health with anyone who wants to read it!  

With all my physical and emotional energy going in to fundraising, worrying about fundraising and trying to win the lottery, I know I am neglecting the people around me.  I’m sorry for that.

If I owe you a text or phone call or an email, or a coffee or a night out, I hope you can bear with me while I’m so distracted with everything else.  Please keep in touch xx

All of this has made me realise that life is going to be very different for me for the next 6 months or so.  I’m planning to work hard at the fundraising until our evening do on 23rd February.  At that point, I’ll try to borrow whatever is outstanding and get my treatment paid for.  Then I’ll have 2 months to plan and prepare! 

My trip to Russia will take a month and I’ll need to take things very slowly when I get back.  I’m hoping normal service will resume by Autumn …that really does sound a long way away.  I know I will have some wobbles on this journey and there’s a lot I can’t even think about yet, but at the moment, I’m feeling positive and determined, which will do for now! 

——————————————-––————-

Event tickets £10 each

Saturday 23rd February  … Bonis Hall, Prestbury

Raffle tickets 50p each 

GoFundMe

65 Let people in; they can handle it

I read this interesting personal account today and realised I have the same issue as Trish – I am so determined to remain independent and self sufficient that I tend to hide my MS struggles and don’t often ask for help.  

MS Lesson Learned: ‘Let People In; They Can Handle It’

Yesterday I met up with three dear friends who I’ve known for years and would trust with my life – we can (and do) talk about anything and everything, we’ve supported each other through all sorts of ups and downs, over many years, yet still I minimise my struggles.

Thinking about this, I realise it’s because I don’t want the people in my life to see me differently …even though I am different now.  Maybe I am struggling to accept that myself? 

—————————————————

I am very happy to tell you that we finally have a plan in place for our evening fundraising event on Saturday 23rd February.  Tickets are being designed and printed as we speak and will be available to buy very soon.  Tickets are £10 and will be available soon. 

Bonis Hall

As mentioned before, the venue is Bonis Hall, the home of McCann Manchester, who have kindly agreed to let us use their Bistro area for our event.  Special thanks to Joe for setting this up for us.  

The event will start at 6.30pm and we have an evening of music, food, drink and fun planned.  Children are welcome too (please let us know if you are bringing children).  

We are hoping this will be a successful fundraiser for us and a fun night for all.

We will be selling raffle tickets before and on the night and already have a fantastic array of prizes.  If you have anything you could donate as a prize, please do get in touch.  Unwanted Christmas presents, vouchers for services or anything else you can think of! 

We still have some other fundraising events coming up …Callum’s head and chin shave, Team Stephenson’s are taking part in the Gung Ho Infaltable 5K, Glenda will be taking part in a Nordic walking event and the lads will be completing their Mountain Bike Challenge

GoFundMe


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