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!

World MS Day

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It dawned on me as I began writing this blog for World MS Day that I have had MS for most of my adult life. I know that might sound strange as I obviously knew I was diagnosed at the age of 22, soon after I left university, but it was the realisation that actually I haven’t experienced much adulting without managing a chronic condition too. You’d think I would’ve got the hang of it by now, wouldn’t you?!

For anyone unfamiliar with multiple sclerosis (MS) it is a neurological condition where the body’s immune system starts attacking the outer covering of the nerves (myelin) which causes the messages from the brain to different parts of the body to be disrupted (picture a phone charging cable with damaged casing so the wires are exposed in places.) This can affect pretty much any part of the body. It can cause things like numbness and pins and needles, muscle stiffness and pain, tremors and visual disturbance and overwhelming jet-lag like fatigue. MS can also affect memory and cognition as well as bladder and bowel function, balance and mobility. It can impact every part of how you think, feel and move. Also everyone is different and no two people with MS are the same. Their combination of symptoms and MS journey are unique to them.

There are different types of MS too. The most common type is relapsing-remitting (RRMS) with periods of new symptoms or previous ones flaring up followed by times of remission with less disease activity.

I have the secondary progressive type. This is often what RRMS becomes after 10-15 years. The flare-ups reduce, but the level of disability increases. Oh but you can still get relapses with secondary progressive, so my consultant informed me, which seems decidedly unfair!

It was during one of the flare ups recently that I experienced something affectionately known as the ‘MS Hug’ for the first time. Don’t let the name fool you, it is not nearly as soft and comforting as it sounds. Instead it is when the muscles in between the ribs go into spasm so that it feels like a tight band is around your chest. Like a too tight girdle or corset. It usually lasts for a few seconds or minutes at a time, but in my case it went on for days! Weeks in fact. It would slacken off for a time and then come in waves that would nearly take my breath away. That combined with the chest high numbness, pain and decreased sensation and strength in my hands it was not a fun time. For only the second time since I was diagnosed over 20 years ago, I couldn’t hold a pen properly to write. That is a very strange and frustrating situation. You take it for granted to be able to jot down a note, write a shopping list or sign your name and I was struggling to do any of that. I would put the pen in my hand, but I couldn’t make it move in the right way to form words on the page. It also made holding cutlery tricky and peeling vegetables nearly impossible! Thankfully all of these symptoms have now mostly improved, although not disappeared completely. You see that’s the other thing with MS, following a flare up or relapse you often don’t completely get back to how you were before. There is new normal to adjust to.

The theme for this years World MS Day is invisible symptoms. Most of the symptoms I’ve described you can’t see. You can see the stick I use to help me walk or the scooter I’m whizzing round the shops on, but you can’t see the rest which can be equally, if not more debilitating than what makes me need the mobility aids.

So if you see someone get out of a car parked in a disabled bay who ‘looks fine’ please don’t assume they are, if the person in front of you at the supermarket checkout is taking forever to get the money out to pay for their shopping please be patient and if someone doesn’t smile or wave back in the street please don’t assume they’re being rude. They maybe concentrating as hard as they can to function in a body that is not cooperating. Just because something isn’t visible to others, doesn’t mean it’s not there.

You can’t see the invisible…

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There can be many ‘invisible’ symptoms of Multiple Sclerosis (MS) and one that has plagued me since the beginning of my MS journey has been problems with vision. Optic neuritis can be a common early symptom of MS and is caused by inflammation of the optic nerve. It usually starts with pain in the eye (it can feel like there’s grit in it), then the vision decreases over several days, colours can appear altered and then you wait…

You hope that after a few weeks the vision will gradually return until you can see clearly again. However, like many MS relapse symptoms the function doesn’t always come back completely, but that’s ok because you can function with reduced vision in one eye…and it usually only affects one eye…except for when it doesn’t! I had repeated episodes of optic neuritis in the early years after my MS diagnosis. Back in those days it was treated with a 3 day course of IV steroids, but this only helped to resolve the bout more quickly and did not change the outcome, so I only had them on two occasions before deciding it wasn’t worth the side effects and the upheaval of daily visits to the hospital.

It is hard to describe the vision loss after optic nerve damage. I can see everything, but the finer detail won’t come into focus. I can see the person walking towards me, but I might struggle to see their face clearly, I can see the specials board in the café, but might have difficulty reading what soup of the day is, I can see the car, but can struggle to read the number plate and here lies the problem. For many years at my annual eye test the distance I could read down the chart has reduced. My glasses prescription would be increased and I would carry on, but optic nerve damage is often not correctable by stronger glasses. In fact what I’ve found recently is they appear to magnify the deficit as well as what I can see.

So the day I had been dreading arrived. I’ll be honest and confess that I had been putting it off, but I knew I needed an eye test and when I finally had one it confirmed my fears. Even with a significantly stronger prescription in my glasses I was struggling to read the line on the chart that I needed to be allowed to continue to drive. I could do it…just, but was advised to stop driving whilst I was referred to the ophthalmology department at the hospital to check there was nothing else going on. However, after a morning of in depth testing a few weeks later they confirmed it was optic nerve atrophy caused by the MS. So although I’m not aware of having any specific bouts of optic neuritis in the past 10+ years, the disease activity seems to have continued to damage those particular nerves.

I was advised to notify the DVLA and await further instruction. Eventually I was invited to make an appointment for an eye test at one of their assessment centres (Specsavers as it turns out!) A very nice lady explained what would happen and asked me to read as far down the chart as I could…but it was not enough. In fact it was significantly below what I could see 3 months before. She was very sympathetic and asked me to complete the visual field assessment too. (For those who haven’t had this test, you focus on a central spot and then press a button when you see the lights that flash in a random pattern around it.) She was somewhat bemused when I passed that with flying colours. In fact “perfect” she said. But my visual acuity (how clearly I could see) was letting me down. They suggested another eye test, just to check they couldn’t improve my vision by further change in prescription. Again I saw another lovely lady, but it became apparent that I just couldn’t read the line required (well I got 2 of the letters right, but that isn’t enough apparently!) Tears pricked my eyes as she carried out the rest of the checks as the enormity of what this meant started to sink in. I had been clinging onto my driving licence for as long as possible, but it was finally gone. It felt like the last bit of my independence was being taken away.

But that isn’t the reality. It’s just different. I have my mobility scooter, taxis and some very kind friends and family who give me lifts to help me get to where I need to be. I’m also having to learn to be a whole new level of organised, because I can’t just jump in the car and pop to the shop when I’ve forgotten something for tea or need to post a parcel or buy a birthday present. I’ve also realised that I need to make sure I don’t become isolated, because sometimes, especially when the weather has been bad, I haven’t left the house for days!

What has surprised me is that I’ve also felt an element of relief. I put immense pressure on myself to keep driving, because as a single mum I perceived it was necessary to continue doing the things I do, but actually now I’m not, nothing bad has happened! Life still goes on, albeit somewhat differently. My teenage son is enjoying discovering the freedom of the bus network and loving getting out and about on his new bike (that I helped him to buy as a guilt present to compensate for me not being able to drive him to places anymore!) Although I still find it difficult to ask for help I have some lovely friends who I’m actually getting to see more often as they are kindly offering to taking me to places.

Although the biggest impact of my vision problems is obviously the loss of my driving licence, it does affect everything. However, thanks to technology, fonts can be made bigger, I can ask Alexa and Siri for help and watching York City FC in soft focus is not always a bad thing! I’m still adjusting to not being able to drive, but there is much I can still do with a bit of careful planning and the help of others.

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.