My first HuffPost blog

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Here’s a link to my first HuffPost blog!

https://www.huffingtonpost.co.uk/entry/unpredictable-me-life-with-multiple-sclerosis_uk_5ac7dbf6e4b01e0b61b762a6?utm_hp_ref=uk-lifestyle

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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.

First Dates

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I love the TV programme First Dates. For the uninitiated it is a Channel 4 show where singletons are matched up for a blind date at a restaurant in Covent Garden, looked after by the rather suave French Maître d’ Fred and his impossibility attractive waiting staff. We, the viewing public, then watch the date unfold, with all the awkward introductions and initial polite conversation that becomes more relaxed as the wine starts to flow. We cringe when it all goes wrong and we delight when it’s a perfect match. And this is not just for the young and beautiful. There are all ages, shapes and sizes from all sorts of backgrounds.
So as I watch these strangers embarking on their dating adventures it got me thinking…am I ready to start dating?

It’s a topic that comes up occasionally when I’m talking to my widow friends. I’ve been widowed for over 4 years and I’m really very used to being on my own now. There are things I miss about being part of a couple, like having someone to share things with, to go places with and to stop me feeling like the odd one out at social gatherings when it seems like everyone else is part of a pair. I do miss having someone to share the driving duties with and who will cut the lawn for free and I think the young man in my life would quite like a man around to do boy stuff with.

But would I feel like I was betraying my husband if I looked for love again? I’m not sure.  I don’t wear my rings often these days, but to actively seek someone new just feels a bit weird.

Not least because I haven’t dated for well over 20 years and without wishing to sound incredibly old, a lot has changed since then! We just about had brick-like mobile phones with pull up aerials and dial up internet on a big beige box of a computer kept in the corner of the room. There was no swiping left and right and ‘Plenty of Fish’ was where you found cod and chips wrapped in newspaper, not a potential partner. I met my late husband at Uni where there was a ready made social scene and I was young! And healthy and active. But I’m now a disabled single mum in my 40’s, with a little more glitter (ok, grey!) in my hair than I would like. I’m just not sure who would want to sign up for that? My son said ‘maybe there’s a nice man out there who would like your personality and not mind about the MS’ (but this is the same boy who thinks I would make a good teacher because I have a ‘good shouty voice’ so I’m not sure how reliable his opinions are!)

And you see, I’m a suspicious sort and I really don’t think I could ever do the internet dating thing as I would never believe what any potential date said! I’ve heard too many stories of men not being who they say they are, not actually being single, being downright creepy or thinking the best introduction is to send a photo of their boy bits! (Why?! Just why?!) I know it’s not all like that and I have heard of success stories too, but I’m not sure I can be bothered. It’s tricky enough balancing what I have to do now with the energy I have available, I’m not sure I have any spare for dating.

I don’t doubt there are some great single men out there…somewhere…and if I happen to stumble across one (possibly literally!) then maybe I’ll think about it, but if not, that’s fine too.

So am I ready to date? Probably not. I’m certainly not going to be actively searching anyway. Not unless they start holding singles nights in Paperchase…;)

#YoureNotAlone

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Today is the beginning of Children’s Grief Awareness Week UK (16th-22nd November 2017) with the focus on acknowledging the painful impact the death of a loved one has on a child and giving an opportunity to make sure the children receive the support they need. #YoureNotAlone.

Bereaved Children Support York was created nearly exactly 18 months ago, for that reason. So that bereaved children could come together and realise they are not alone and that other children have experienced a similar loss. Our aim is to support children and their families living in the York area, so they are better able to cope with the impact of bereavement on their lives. We do this in 3 ways.

1. Monthly Peer support Drop-in sessions

This is how it all started, with toys, crafts and resources and an opportunity for bereaved children and families to come together in a relaxed and friendly environment knowing that everyone there has experienced something similar, because losing a significant person in your life, especially as a child, can be incredibly isolating.

This year we have moved to a bigger venue, with better facilities and more space for the children to play. Oh and it has an Xbox! This has definitely meant that the children are interacting much more and have been able to be more creative in their play.

2. Therapeutic Support

We are delighted that we are now able to offer one to one therapeutic support provided by experienced Bereavement Practitioners for those children who need it. Not every child who has been bereaved needs additional help outside their existing support network, but some do and we want to be able to offer this service. This is running as a pilot project initially to gauge demand, but we anticipate this will be high and the service will expand according. Anyone can refer a child, but we do ask that parental consent be obtained. (Please contact us at info.bcsy@gmail.com for more information).

3. Training

We also wanted to be able to offer training for schools on how to best support the bereaved children in their care. We know from the families we have met that some schools do a fantastic job in supporting their bereaved children, but others not so much. We hosted our first training day in October led by a great facilitator from Child Bereavement UK. The feedback was overwhelmingly positive so we are putting the finishing touches to a second training day to be held early next year. Children spend so much time at school and the normality and routine can really help those who are grieving, especially in the early days, but it is so important that schools realise the impact of grief and that it is an ongoing process. Not time limited. In fact often as a child reaches a new level of maturity they will experience their grief in a new way. It’s not all done and dusted after the funeral or once the first anniversary has passed.

It is all made possible because of some wonderful people and fundraisers

We are now an officially registered charity (no: 1171422) with Lisa and Yvonne joining the team as trustees and we have received some fantastic grants and donations from various organisations and individuals. Our initial grant was from the Ed de Nunzio Trust, which enabled us to establish the Bereavement Practitioner pilot project and host the first training day. Since then we have received generous donations from Ambiente, The Phil Curtis Annual Fun Day, Bel’s 10K, Sally and Wayne’s wedding gift and Kathryn’s dad as well as other individuals and the ’round pound’ collection! We have been overwhelmed by the generosity of people and we are so very grateful. Thank you!

So what’s next?

We are planning to keep doing what we’re doing…but try and reach more bereaved children, young people and their families. We are starting to arrange get togethers for the adults and in the process of writing a new leaflet to distribute to schools, GP surgeries and other organisations outlining the support we offer. We will be running another training day for schools and also looking at ways to develop support more specifically aimed at teenagers and young people. We are also delighted to be the official charity partner for the mini and junior runs at the York 10K in August 2018.

These children and young people have all experienced the most devastating losses in their young lives. We can’t take the pain away, but if we can help them and their families find a way to feel better able to cope with their grief then we will have achieved our goal.