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Lockdown

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Stuck at home for weeks on end and not sure when you’ll be able to go out again? Reliant on delivery services and other people for your shopping? Not able to access places and events you would normally enjoy? Welcome to my world! Nice of you all to join me. Frustrating isn’t it?!

Due to the Covid-19 pandemic most people have been plunged into an unfamiliar situation of being at home all day, unable to access previously favourite places, not knowing when you’ll be able to go out again and concerned about getting enough food and supplies for your household. It’s been a bit of a joke with friends and family over the past couple of weeks that I have an advantage over most people as this is how I live my life most of the time anyway.

Not because Boris told me to, but because living with a chronic illness like MS can mean it feels like living in lockdown all the time. You don’t know when your body will allow you to go outside, you don’t always have the physical energy or capability to go to the shops or out to do something fun, so it takes a bit of planning and there’s always the caveat that I might have to cancel last minute.

I have been living with MS for a long time and I’m now used to planning my life around it. So here are a few things I’ve learnt that might help you adapt to your current way of life.

Find pleasure in the simple things

A beautiful sunny day. A lie in. Reading a new book. Rediscovering your music collection or exploring Spotify creating playlists of long since forgotten favourites from the past. Catching up on films you missed at the cinema or box sets you’ve been meaning to watch.

Think ahead

Not stockpiling, but always trying to make sure you have a spare of the basics (washing up liquid, a bag of pasta, shampoo, tin of beans, toilet rolls!) As I’m reliant on my groceries being delivered there’s sometimes things out of stock and then it’s a week until the next delivery. It’s also worth keeping a stash of stamps, cards (birthday and blank) and a couple of spare boxes of chocolates or bottles of wine as emergency gifts or emergency supplies if things get tough!

It’s ok to ask for help

This is still a difficult one for me, but sometimes I have no choice. If I need something from the shop or a letter posting and I’m not up to going myself I have to ask a friend. (And we know if someone asked us, we would be more than happy to oblige.) So if you’re stuck, swallow your pride and ask for help.

Find ways to connect with people

In these days of technology and social media it has never been easier to stay in touch with people. Drop someone a text. Arrange a video call with a group of friends and have a coffee or a glass of wine while you chat. Pick up the phone and call a friend for a catch up. The possibilities are endless.

Give yourself a break

This is a huge change of circumstance that happened very quickly for everyone and it will take time to adjust. I might be used to spending a lot of time at home, but I’m not used to having a teenage boy here all the time too. Neither am I a teacher, so to be attempting to facilitate his schooling whilst trying to adapt the work of a charity that is based entirely on face to face contact into a version that works virtually is a whole new level of challenge!

So be kind to yourself. You can’t do it all. Especially for those who are juggling working from home with getting kids to do school work, or for those facing financial uncertainty and trying to navigate the benefits system. It’s a huge amount of pressure combined with concerns about our health and that of our friends and family. Give yourself space and if you’re feeling overwhelmed, talk to someone. Don’t suffer in silence.

Positives?

On the positive side, so many places and organisations have very quickly become inclusive for those of us with physical limitations. The support group I run for parents of bereaved children has become a virtual coffee over video chat and for the first time in years I have been able to be ‘attend’ a service at my church 2 weeks in a row.

When this awful situation has passed, and it will pass, let’s hope that some of the inclusivity that we have discovered will stay. That the sense of community and looking out for each other will remain, because we are all equal when we’re sitting down in a video call or watching a livestream event and that is to be embraced.

Stuck down a hole

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I’ve recently been watching re-runs of US political drama The West Wing where Martin Sheen is president and he is surrounded by a team of staff who advise him on all his major decisions and speeches (imagine!)

One of the main characters, Leo (who himself had overcome some personal difficulties), tells this story to one of his colleagues who was experiencing PTSD.

A man falls into a hole and the walls are so steep he can’t get out.

A doctor walks past and the man shouts up ” Please can you help me get out?” The doctor writes a prescription, throws it down the hole and walks on.

Then a priest walks past and the man shouts up ” Father, please can you help me get out?” The priest writes out a prayer, throws it down the hole and walks on.

Then a friend walks past and the man shouts up “Hey, I’m stuck down this hole, can you help me out?” The friend immediately jumps down into the hole and the man says “What are you doing?! Now we’re both down here!” But the friend says “Yeah, but I’ve been down here before and I know the way out.”

When I heard this it brought a tear to my eye and a lump to my throat, because it beautifully illustrates the power of helping others through situations that we have experienced ourselves.

When I started Bereaved Children Support York it was with the aim of giving children who had experienced the loss of someone significant to them the opportunity to meet others in a similar situation to help relieve feelings of isolation. This has been the case, but another benefit that has become apparent is the value of this shared experience for the parents and carers too. Both speaking to those who are at a similar stage of the grief journey to them and also, like the story highlights, speaking to those further down the road to hopefully reassure them that there is hope and that it does get better.

Our lives will forever be changed by the loss of those we love, but hopefully we can find a way to move forward and look to the future. It feels impossible at the beginning in the early throes of grief, but it can be reassuring to meet, speak to and read about those who have come through the other side.

Not that it’s that straightforward of course! There is no straight path of grief with a neat beginning, middle and end and as I approach the 6 year anniversary of the death of my husband all those feelings begin to resurface. It is not a surprise and as the sunlight takes on a mellowness and the start of the new school year approaches the feelings of melancholy return, like an uninvited visitor who turns up on the doorstep and moves into the spare room.

However, it does help to be part of a community of people who support each other both through the good times and the challenging times when you feel like you’re at the bottom of that hole, because most importantly….there’s usually someone who knows the way out!

Social media…a force for good?

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Social media is an integral part of life for many of us these days and despite recent revelations about how our data may have been used (and the fact it can be incredibly addictive) it can be a really positive thing too. It can bring like-minded people together for a cause, interest or hobby, offer support for people experiencing the same condition or situation as well as enable friends and family separated by distance to keep up with each other’s lives. It can also be a fantastic platform for advertising small businesses, social or fundraising events and it can help people who are isolated to feel like they belong to something, but on the flip side, the temptation to compare our lives to other people’s posts online can leave us feeling decidedly inadequate!

This is because we only generally share the best version of ourselves online. The flattering photo of us looking as close to fabulous as possible or the picture of our child with the award they’ve won, smiling sweetly at the camera. However, we are less quick to share a photo of us looking decidedly rough or of our child slamming doors and throwing a tantrum, because we don’t want people to see that side of our lives. We want the airbrushed version. Filter well and truly in place.

And what about when people we consider friends share pictures of a night out we weren’t invited too!? Or when someone posts photos of their exotic holiday when we are struggling just to pay the bills? Or when it seems everyone is sharing news of their pregnancy and what we want more than anything is to have a child, or people announcing news of their engagement when we long to be married? It’s in your face, it’s in your hand, it’s on your phone and yet it can be strangely compelling to view these selected snapshots of other people’s lives. Constantly!

For the bereaved or the separated it can be particularly painful. On the one hand there is great potential support available online via groups on social media, but to access this you will no doubt have to negotiate the updates from other people’s lives. Other people’s lives that carry on regardless, unaffected by the loss you feel so deeply and that hurts so much. As time passes it may becomes less painful and less all consuming, but sometimes to see a picture of a smiling happy family with a mum, dad and children doing something fun together is too much to bear. It’s not jealousy, it’s just capturing something that you don’t have any more.

So how can we make the social media experience a more positive one? Well, we can change the settings on our phone so it isn’t pinging every time someone shares a tweet, uploads a photo or posts an update. That way you’re not tempted to check what it is (that funny meme or cute cat video can wait to be viewed later!) There is also the ‘unfollow’ option. So if a certain person’s posts upset you or wind you up…stop following them! (The option on Facebook also means you don’t have to ‘unfriend’ them, but it will stop the person whose posts irritate you clogging up your newsfeed!)

Maybe consider finding an online group for an interest you have, or a cause you’re interested in. Use social media to connect with other like minded people in a positive way. Or maybe consider starting something yourself! Is there a need for a support group for something? (Beautiful Stationery Addiction?!) or do you want to find people who share your love of something? (Beautiful Stationery?! Do you see a theme emerging?) Social media can be a fantastic way of reaching a huge number of people who have similar interests or experiences to you.

The charity I started for bereaved children certainly wouldn’t have reached as many people, as quickly as it has, without the use of social media. When I first had the idea I was able to raise the money I needed to get started in just over 24 hours, by sharing a crowdfunding page on Facebook. I also set up a page for the group and could share it, reaching far more people than I would’ve done by putting up posters and sending out letters. It has also been a great way of finding other organisations doing similar things in different parts of the country as well as linking up with other local groups and charities.

So, for all of the bad press and negativity, why not decide to take control of social media and choose to use it for good? You might be surprised what you find.

The beautiful game

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I have a confession. I love football. I love watching it on the telly and I don’t mind who’s playing (a perfect Sunday afternoon for me is watching back to back football matches on TV), I love watching my son’s team play (even though their first win of the season is still elusive), but most of all I love going to watch a match in person.

I must have been about 12 or 13 when my dad took me and my younger brother to our first football match at Spurs and from then on my love of football grew. We became members and went to most home games. I loved the ritual of getting dressed in the colours of my team and the excitement of walking down Tottenham High Road with all the other fans who had the same hopes for the match ahead. We would buy a programme and maybe a copy of the fanzine, then take up our position on the terraces. Dad would bring a bright orange plastic milk crate for my brother to stand on so he could see the action over the heads of those in front of him (different times…you can’t even take a bottle of water with the lid on into a match now!) We would stand in the same spot every match. There may not have been seats, but we all knew where to stand and we would get to know those around us and see the same characters every time. The 2 older ladies who would come together and be as vocal as any of their younger, male counterparts (one in particular would shout loudly to encourage Gary Linekar whenever he had the ball!! “Come on Gareeeeee!”) and the man who would walk around the terraces selling small, white paper bags of roasted peanuts. “Peanuts, get your roasted peanuts!” he would shout (Not sure that would get past health and safety these days.) And the singing. I love the singing. There is nothing better than thousands of people singing the same song to encourage their team (or put off their opponents!)

I may enjoy the matches at the time, but I can rarely remember the scores and goals like my brother and dad can. They can remember a match from 20 years ago, what the score was, who scored and sometimes describe the goal in detail too! However, one match I do remember well is the 1991 FA Cup semi final against Arsenal which was the first to be played at Wembley (we won 3-1 and Gazza scored a now infamous free kick!!)

My love of going to see live football could sometimes be a little controversial as for a time in my teens I only seemed to pick boyfriends who were Arsenal fans! So I would get the chance to go and watch Arsenal home games sometimes too and because I loved the football I didn’t actually care who I was watching (unless of course it was the North London derby when my loyalties were firmly in the Spurs camp.)

I moved away from London in the early 90’s so don’t get to many Tottenham games these days and more recently I get my live football fix from watching York City as me and my son have become season ticket holders this year. Now that is a very different experience to watching a premiership match. It is a crowd of around 2000 and there is a 50/50 prize draw at half time! And as they are currently playing in the National League North against teams like Blythe Spartans and Curzon Ashton, many of the teams are part-timers who earn their main wage as plumbers, postmen and teachers. This version of the beautiful game is often not pretty and can be frustrating to watch, but I still get the same feeling of anticipation on match day.

As I put on my 17 layers of clothing to keep warm and wrap the red and blue scarf around my neck I am filled with the eternal optimism that we will be victorious even if the opposition, form and league position suggest otherwise. At the beginning of the 90 minutes the slate is wiped clean and anything is possible.

I enjoy the camaraderie too. The discussions about the team selection, new signings and where on earth this particular team come from? (Where actually is Curzon?!) The faces around me are different from my days on the Tottenham terraces, but the characters are still there. The lovely chap who always has a bag of mints to share, the voice of the man who sits a few rows back shouting loudly…generally at the referee pointing out where he’s going wrong and the steward with the fabulous purple hair! The bags of peanuts being sold on the terraces of my youth have been replaced by shared bags of sweets passed up and down between those we sit with.

So as another match day looms and the fight to remain in the play-off places continues, I have the familiar sense of anticipation for the match this afternoon (home to Chorley if you’re interested). I will put the layers on, find the season tickets and pack the sweets in my bag, filled with the optimism of a win…that will last at least until kick off.

Feeling the cold

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Sometimes I feel a bit like Goldilocks when it comes to finding the right temperature. I easily get too hot and I easily get too cold, in fact it can be rather tricky getting it just right!

It is well documented that heat can make MS symptoms worse. Usually only temporarily, but worse all the same. In fact in times gone by, before MRI scans and the like, the test for MS was to put the patient in a hot bath and see if the symptoms got worse. If they did you had MS and if not you’d didn’t. A bit like how they ‘identified’ witches! Except without the risk of drowning as hopefully they pulled people out if it made their symptoms too bad!

But a lesser known fact is the effect of the cold on MS symptoms. For some MSers that can be a real problem too. As the autumn starts to change into full on winter this is becoming rather difficult. I live in fear of snow and ice. It’s hard enough to walk with MS and a stick on level, dry ground, but to negotiate icy pavements or walk in the snow is a whole new level of challenge! And just generally trying to keep warm in winter is tricky. It’s ok if I’m at home with access to jumpers, thick socks and the central heating thermostat, but dressing to keep warm outside…especially watching football (either my son’s team or the mighty York City) is something I haven’t quite mastered yet. I’ve experimented with different types of thermals, socks, layers, gloves and hats, but to no avail. I’m seriously contemplating some heated gloves and I’ve seen a fabulous jacket with a rechargeable battery pack that powers heat in different sections…it’s a bit pricey though!

When I get cold it’s not just the usual unpleasant feeling of being cold, it actually makes my symptoms worse. My legs stiffen up, the tremors start, the pain gets worse and the fatigue hits me and because my internal thermostat is faulty due to the MS it takes a long time to get warm again. I usually dive under the duvet, fully clothed with a hot water bottle and wait for the thaw to set in…

I have recently found some hand and feet warmers (called Hothands) that are activated by the air once opened and last up to 10 hours. I tried them last weekend at a very cold football match and they helped a lot. I’ve just found that M&S do two different thicknesses of thermals too so I’ve ordered a thicker top to try. I’ve also bought some new thermal socks that have a Tog rating! Like duvets! Now surely they will do the trick!

So, I will continue to hunt for things to keep me warm, pray for another mild winter and look forward to warmer, but not too warm, summer days.

Surprising reminders

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When you have lost someone significant in your life it is only natural that there are things that remind you of them. In the early days it feels like everything reminds you of them. Every song that comes on the radio seems to hold a memory or significance, every TV show or sporting event a reminder of the person who is missing it. Another series of Strictly. Another Olympics. Another cup final. As time goes on these instances become less frequent as new memories are formed. Not that they are forgotten but it is not so all consuming.

So, I have been somewhat taken by surprise with recent reminders of my late husband 4 years on.

A frequent one is seeing offers on multipacks cans of Diet Coke! My hubby loved Diet Coke. He drank buckets of the stuff and would always be excited when he found a good offer. So when leaflets drop through the door with offers from local supermarkets, my eye is still drawn to the Diet Coke ones!

The next is smell. My son has taken to using the same deodorant as his dad, so in the morning the landing smells of my hubby. I’ve got used to this now, but I was taken aback a while back when I was scanning my shopping at the self checkout in Sainsbury’s and the man next to me was wearing the same aftershave that my husband used to wear. For a split second I thought he was there. It’s the strangest feeling. And then a couple of months ago I was sat at a Neil Diamond concert and the man who sat down next to me was also wearing my husband’s aftershave. Smells are so evocative. You can’t rationalise them or filter them. If a smell reminds you of a person or place you are transported there immediately and without warning. No time to say ‘no not at the moment thanks I’ll think about that later…at a more appropriate time’. Nope you’re whisked off there even if you are sitting in an arena or standing in the middle of a shop!

Which brings me to the most recent incident. Walking through M&S and seeing a mannequin wearing a dressing gown. Nothing unusual in that you might think, but there was something about the style of the dressing gown and the pose of the mannequin that reminded me of him. I automatically thought ‘Oh he’d like that. I could get him that for Christmas’. This will be the 5th Christmas I haven’t bought my husband presents, yet the thought is still automatic if I see something he would’ve liked.

As the years pass and the feelings aren’t so raw it surprises me even more that these emotions still hit hard at times. That gut wrenching feeling in the pit of your stomach that the person you loved isn’t there anymore. You get caught up in the routines of daily life, but just occasionally these moments come out of left field and floor you! However, you pick yourself up, dust yourself down and get on with things again. Acknowledging the feelings, the grief, the sadness, the loss, but remembering with affection the happiness in those memories.