Horses – about as predictable as MS!

This years challenge is complete – just!

Last year, I travelled up to Hartpury in Gloucestershire with my local RDA group to watch disabled riders from all over the UK compete in the National Championships – the biggest show of its kind in the world. I was bowled over. Such talent, such an incredible atmospehere and such professionalism. Right there and then I decided that was my challenge for 2018 – to get to the National Champs and compete in dressage.

As a horseless rider (who hasn’t ridden much at all in the last 15 years), and now dealing with shonky legs and immense fatigue, this was always going to be tricky, but hey-ho…

Lambourn RDA were there to help as ever, contact with willing horse owners was made and training commenced. I was assessed by para sport physios so that I could compete and given a Grade V, profile 23 classification. Hartpury, here I come!

I trained fairly relentlessly for a year on 5 different horses – each one giving me something different to think about. MS gave me lots to think about too, sapping my energy and tightening muscles all over my body. My MonSter doesn’t like riding but I do – time to do one you little critter!

A very generous friend lent Arnie Bear to me so that I had a safe, calm, reliable school master to go to the regional qualifiers on. Brilliant! Arnie was largely angelic in training and I thoroughly enjoyed riding him. Off we went to the regional qualifiers, convinced we had this nailed.

In Arnie’s pic above (top right), you’ll see the little white boards that mark out the dressage arena. Well, that’s how humans see them. Through Arnie’s eyes – little white jumps! Arnie is beautifully schooled, but he’s not experienced with dressage arenas. He does like to jump though. Whenever we came down the long side of the arena, he locked on to the boards, getting himself ready to take off! Didn’t see that one coming…  I kept him in, and we qualified by the skin of our teeth.

I switched horses for the Nationals, another incredibly generous friend lending me her mare, Mabel. We had just 2 months of intense trianing to get to know each other before heading off to Hartpury. Test learned, horse bathed and plaited, tack gleaming, we enter the arena. I do my best to keep relaxed, remember the test and ride my line. Half way through, it was going really well then bang! Mabel slipped and fell right in front of the judges box and crushed three of the little white arena boards (I’m rapidly going off these boards..). I stayed on, she recovered and got back up on her feet. The judge came over:

Me: “Umm, well that doesn’t happen everyday – I guess that means I’m disqualified. Sorry about the boards by the way..”

Judge: “Are you OK? Your horse is OK. Well sat. Don’t worry, we’ll rebuild the arena. You can carry on if you like?”

So we did. A bit shaken up, slightly red-faced, we completed our test and left the arena to much applause. And we came 4th 🙂

“Dressage is the safest discipline” they said.

“You just need to stand out from the crowd” they said.

Safe, hmm, that’s yet to be proved. Standing out from the crowd? I think I’m going to be good at that part, albeit for all the wrong reasons!! Onward..

 

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Mabe the Babe

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Wet sheep and unicorns

Slaying my MS Monster with horse therapy

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See that pic in the title – anyone who has been involved with horses knows what that picture smells like and its intoxicating. You can keep your flowery perfume, your scented candles and your pot pourri. The smell of saddle soap, horse poo (yes, poo!) and the breath from those nostrils up there – heavenly.

Horses are my new weapon in a long fight with my MonSter. I’ve been dragging the little bugger around like a wet sheep over my shoulder for 4 and half years. So now I’m going to try and slay him with unicorns. To a degree, I think it might be working..

After 15 years out of the saddle, I started riding again with the Riding for the Disabled Association. Every week I drag myself and my little MonSter along to the stables for a lesson. I say drag.. in my head I’m skipping along but the reality is light years away from that!

Throughout my new life with MS, I’ve had this huge issue with having a largely invisible disability. There are benefits to that but it does make it very difficult for people to understand. That’s why I ride with the RDA, they ‘get it’. To the untrained eye, I’m perfectly able to get on a horse and ride. Getting on a horse and riding with an invisible MonSter however is a wholly different thing. I was a very experienced rider many years ago; I rode everyday, I rode for a living, it was a very natural, easy thing for me to do. Riding with a MonSter in the saddle is very different. Its painful, un-nerving and exhausting. So why the hell are you doing it, I hear you cry?!

Because on the flip side, its fun, exciting, exhilarating. You guys can’t see it but the pain, tremors and ‘wet sheep’ like fatigue are constants in my life. I can’t make them go away but I can dilute them with joy and horses provide me with that therapy. Its making me stronger and fitter. Physically, I pay for it heavily after every session but doesn’t everyone that pushes themselves through exercise? Mentally it makes me alive, it gives me the ability to set goals, to dream. It’s a classic case of pleasure vs pain and for now, pleasure is winning.

I’m taking a sensible approach and focussing on dressage (aka ‘horse dancing’ to the uneducated), rather than any of that dangerous jumping malarkey. After a year of lessons, I’ve qualified for the National Championships this year. More through luck than judgement on my part but who cares – it’ll be fun! Can’t wait to learn more, improve and do it all again next year if I’m lucky enough.

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Me and my friends unicorn, Arnie, riding our first test for over 20 years!

So, if you want my advice, get up and get on a unicorn. Fill your house with the smell of ‘horse’. Go to a tack shop and inhale. But don’t take your credit card – that heady mix will knock all the common sense out of you and drain your bank balance in an instant..

 

Ready, Steady, Ramble!

Well, that’s the last big training ramble done before we set off on Saturday. Thought I’d better test out the new camel pack (with a nice refreshing mix of tonic and gin 😜)!

Ramble

Thank you to everyone who has donated so far – with online donations and offline pledges we’re up to £4k so far which is epic! My aim is £10k though so please keep liking and sharing.

I’m feeling overwhelmed, apprehensive and under immense pressure right now. But mostly, I am astounded by the generosity of all those who are helping with lifts, horses (I’m riding one stretch with the Riding for the Disabled Association), water carriers, doggy day care, food and God knows what else. Its been like planning a military operation. I didn’t realise the scale of the task when I first dreamt this up so massive thanks 😊.

Biggest thumbs up to my husband, Jake. He has been there through the tears, the pain, the self doubt, cold and rain over the last 5 months and amazingly, hasn’t started divorce proceedings. I’m sure he’ll be cursing his stupid wife and her stupid ideas as we approach the finish line….

It’s been an interesting time with training advice from former Olympic Athlete David Hemery CBE and a Country Rambles Radio programme with Clare Balding on BBC Radio 4, due to air in September. Check us out mingling with the stars!

Country Ramble

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Most interesting of all is the positive effect all this exercise has had on my legs. At the start of this it was hell. It was hard work, it hurt and I cried. A lot. 5 months in and I feel the best I’ve ever felt since my diagnosis. My legs still get painful but nowhere near as often and my recovery time is way down. My legs are starting to feel like mine again and that is a feeling I haven’t had for 3 years!

What if the MonSter rears its ugly head on the walk? Well, my husband has a plan for that..

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Right, enough of this rambling on, see you guys on Facebook over the next week or so and if anyone wants to sponsor, please CLICK HERE.

Oh, and if you want to follow our progress on facebook, you can find us here JO FIELDER

See you on the other side – of the country!

#lambournrda #mssociety #thisgirlcan

Me and my MonSter

One crazy lady with Multiple Sclerosis. 87 miles. 7 consecutive days. This is not going to be easy!

BIG NEWS!: Me and my MS MonSter are going for a walk. A very, very long walk.

On June 10th 2017, I am going to embark on an epic hike along the The Ridgeway National Trail. That’s 87 miles in 7 consecutive days. Which is about 12 and a half miles a day. That’s almost a half marathon every day for a week. For some, this might sound like a walk in the park. But when you have an MS MonSter in tow, trust me, this is not going to be easy! I will also horse-ride a short section when I go past my local branch of the Riding for the Disabled Association. They are based on The Ridgeway so it would be rude not to!

My main symptoms manifest in my legs and are exacerbated by exercise, particularly walking long distances. That and chronic fatigue. Sometimes I can’t walk anywhere at all! However, I am lucky that when I am well, I can still walk some distance but I am also aware that this may not always be the case. I have always wanted to walk The Ridgeway so I’d better get on with it!

So far my plan has been greeted with much eye rolling, exclamations of ‘are you mad?’, ‘is that wise?’, ‘I’m not sure that’s a good idea’..

Well yes, I’m clearly mad. No, it is not wise. Yes, it’s a fabulous idea! You all know I have Multiple Sclerosis. Most of you know how that might look for me, and many others, in years to come. It is degenerative and incurable. But so much exciting research is going on at the moment and I am really positive that, with a bit more funding, they will find a cure. So I am going to walk my little legs off to raise funds for this research through the MS Society.

I am also raising funds for the Lambourn branch of Riding for the Disabled Association. They have completely changed my life, my outlook, my physical capability and welcomed me with open arms.

All I ask is that you like, share, tweet and donate if you can. I want this to be the biggest fundraiser I ever do while I still have the energy and capability to do it. I have been trying to train for this since January and I can safely say it will be challenging indeed!

Thankyou, you lovely lot. Love Jo xx

Please click here to visit the fundraising page

 

 

#lambournrda#rdanational#mssociety

Special thanks to my sponsors #ariateurope
Monster illustration by RDM Agency Ltd. www.rdmagency.co.uk
Photography by www.jeremyprout.co.uk

Night and Day

My parallel realties

Night.

Last night, as I lay in bed waiting for the pain killers to kick in, I felt an overwhelming need to write. Below are my pure, unadulterated ramblings after a nasty flare up yesterday (apologies to my nearest and dearest, it might be a tough read for you xx):

“It’s funny isn’t it, when things are going well, all the bad stuff fades into the background. Almost forgotten as I skip through the fields of joy in my rose-tinted spectacles, smelling the flowers and bouncing around the garden with my doggy. Ahhh,  wonderful life. Then BOOM! The music stops. Something happens and everything goes dark. A temporary blip? A sinister reality check? A really shit game of musical chairs where someone turns the lights off and removes all the chairs? Whatever it is, it has a very dark sense of humour and an uncanny ability to rub out all the positives very quickly.

I’ve had so many positive things going on recently that I’d started to forget about the fact I have MS. In fact, I’d almost forgotten the seriousness of my condition, treating it like a recurring cold rather than anything else. So today hit me a bit hard.  My leg went from near normal to feeling like a bag of wet steak hanging from my hip. Painful and heavy, I haven’t been able to walk properly all day. And I’m knacked.  All the positivity drained away in an instant and became a distant memory. I’m now dosed up on Gabapentin waiting for sleep to make it stop. If I make a few spelling mistakes this time, please forgive me!

I was watching TV earlier and a few phrases kept coming up regarding other illnesses: recovery, all clear, cured. Words that fill me with deep joy for other people after what they’ve been through but at the same time, deep sorrow. MS’ers may never hear these words. At the same time, I feel immense guilt and selfishness for thinking like that. Am I wrong to think and feel like that? I can’t control it, I don’t like it but it’s there. I will experience periods of remission, sometimes long periods, but it’s never going to go away. Today just reminded me of that. Don’t get me wrong, I’m extremely lucky. I’m alive, I have good use of my limbs most of the time,  I can do lots of things. But it’s not about what I can do all the time, it’s about what I can’t do after I’ve done the things I can do – you get me?! Rambling now, time for sleep..”

Writing that last night was incredibly cathartic and helped me to sleep but is that what I would have written with my blogging goggles on? No. Waking up this morning I thought I’d write about yesterday’s event with a clearer head. Not so raw and pure but this is how I wrap it up during daylight hours to ‘deal’ with it:

Day.

Oh hello MS MonSter! Long time no see! What a delight it is to see you again… Today, my MonSter has woken from his slumber and attached himself to my leg. He’s put on weight and tightened his grip preventing me from walking like a normal human being. Hilarious! I have spent all day trying to shake him off but he’s having none of it. Little bastard. Right then, I  still have a day to get through and a pile of chores to complete so I’m just going to have to drag you along. What was that? You don’t want to do the weekly food shop? Well tough, you’re coming with me. You can ride in the trolley if you like, in fact that would be really helpful but I bet you don’t!

He didn’t ride in the trolley. I tried to leave him in the fruit and veg aisle but he didn’t want to make friends with the sprouts either. Nope, he just wants to hang on my leg like an oversized toddler. Its going to be a long day.

Evening comes and he’s still there. Hmm, time to open the Pinot – he hates wine, it loosens his grip. It loosens my grip a bit too but I quite like that feeling! 8pm rolls around and I’m quite tired now. Come on MonSter, time for bed. But first, I’m just going to swallow some MonSter Kryptonite – that’s right, magic pills. He really hates those, they loosen his grip just enough that I can ease him off my leg and get some kip. Night night MonSter, hopefully NOT see you in the morning…

Night and Day, my parallel realities. Writing both has been interesting, I hope someone else out there relates. If not, I’ve clearly lost the plot! Have a good one xx

 

 

 

Entry 5) Apparantly I have been Dis-Abled. WTF?!

“Where’s my certificate?”

2015 came and went. On the whole, it was a good year. I was invited to a reception at The House of Lords to say thank you for my fundraising efforts which was cool. I bought my first ‘walking’ stick to get me thorough a couple of evenings out with my shonky legs (it was actually a ‘shooting’ stick from the local country store as I wasn’t quite ready for the real deal but I love it!). I picked up another retail consultancy job and life was pretty good! I had work, I had some fun and I was finding the more that people believed in me and my abilities, the more I could bury my MS monster and get on with my life. The people I was consulting for had no idea I had MS and for the first time in a long time, I was starting to feel like a ‘normal’ person. And then the now legendary 2016 arrived….

My consultancy job came to an end and work dried up. My little MS bast@rd was there, waiting in the wings, ready to take full advantage of the situation. The lead ankle weights and cloak of wet sheep returned. My mood was up and down like a yo-yo on a rollercoaster in a hurricane. My husband deserved a medal. Erratic self-employment was doing my head in, I needed a job. God, how I craved some routine! And I needed to feel… well, I just needed to feel needed.

I scoured the papers and local job sites for work. There wasn’t much about that was suitable but I found a couple of things and started filling in the forms. Within a few weeks, I got an interview! The role was perfect, it might as well have had my name as a job title. I was so excited! Full of confidence, I went to the interview. Lovely people, great prospects and a chance to finally get my life back on track. It was a full-time role (not ideal but what the hell) and they needed to know of any prior engagements that I had booked. I told them that I needed to take every fourth Wednesday off. ‘Why?’ they asked. Well I wasn’t going to lie so I explained that I needed a drug infusion every 4 weeks for a medical condition. Their perplexed expressions meant it was just going to be easier for me to tell them I had MS. They seemed cool with it and said they already employed people with disabilities, no biggie.

I went home, confident that the job was mine but hang on a minute, they said they employ people with ‘disabilities’. But I’m not disabled, am I? Back to the Google machine…. WTF?! Excerpt from the gov.uk website giving the definition of disability:

“..you automatically meet the disability definition under the Equality Act 2010 from the day you’re diagnosed with HIV infection, cancer or multiple sclerosis.”

Oh crap. That means I lied on the job application form when it asks if you are disabled. Never mind, I explained it at interview so they have the facts. All will be well. They called 3 weeks later to let me know I hadn’t got the job. “Would you be kind enough to tell me why” I enquired. “There was someone with more experience than you, that’s all”. I nearly yelled ‘Bollocks’ at that point but instead I asked “Will you let me know if anything else suitable comes up?”. The reply was clipped, short and to the point “No, there won’t be anything else”.

I was utterly devastated. Not only had I failed to get a job that, at any other point in my life, I could have won standing on my head dressed as a pirate but I had also found out I was now registered disabled. I had a nasty feeling that this was going to make getting a job very difficult. If I’m disabled, I should disclose it on an application form but when I rock up to an interview with no obvious outward signs of disability, it will always beg the question “so what is the nature of your disability?”. That and the fact I will always need every fourth Wednesday off means that I cannot get out of an interview without saying the words “I have Multiple Sclerosis”. And, understandably, most potential future employers will be scared by these words because they probably have no understanding of it.

Well that’s it then, I’m f***ed!! Jesus, if only I’d known all this before I resigned from my old job – I would have given that decision a lot more thought. Even though I could no longer do my old job in its entirety, I would have had my arse covered by the Disability Section of The Equality Act so that I could carry on in some capacity. But no, big head over here decides to resign because a) she doesn’t know at this point that she is now disabled and b) she believes she can take on the world, even with MS, and breeze into any job or business opportunity she wants to. Because that’s what she’s always done! This whole episode was a MASSIVE wake up call for me.

Finding out that you are now registered disabled makes your head explode. So many questions, not many answers:

  • If MS is listed next to Cancer and HIV as one of only 3 progressive illnesses that automatically register you disabled, that’s pretty serious! And a bit scary. MS was always going to be a bit scary but this just compounded it.
  • Where’s the certificate that says ‘Congratulations, you are now officially disabled!’ No, seriously, someone should be obliged to tell you that at the point of diagnosis and the implications it realistically has on your life, particularly your working life. You would then at least know what rights and responsibilities you and your employer have from that moment on.
  • The word ‘Disabled’. Literally translates to me, and countless other people, as ‘Not Able’. What a pile of poo. I don’t like it, it’s a rubbish word and a complete misnomer. The ‘disabled’ people I know have bags more ability, grit and determination than many ‘able bodied’ people I have met. They have capability not disability and they have it in spades.

Do I sound a bit angry? Well I was! And with good reason. I had been thrown into a world I knew nothing about, with no map, no sat nav, no practical face to face support. I was completely lost and every door I knocked on for work either dangled a carrot on a stick or shut the door in my face.

Understandably, I spent the next few months at a very low ebb. Every time someone came to the door and asked ‘how are you?”, I burst into tears. For the first time in my life I was unemployed. I felt like I had been thrown on the scrapheap and, as a result, the fatigue and leg pain were killing me. I also had no money coming in. My flare ups were getting worse and to be honest, I felt like I couldn’t hold a job down even if someone would be kind enough to give one to me. I couldn’t even apply for one in this state. My MS nurse suggested I go to my GP for depression. I didn’t. That would just mean more pills and another conversation with someone else who would make me cry.

Gosh, I sound like a right misery guts don’t I?! I’m not at all, 2016 was just a bit rubbish. But listen, I don’t want sympathy, pity or a sick note which effectively renders me medically retired. I don’t want to claim income support or whatever the hell it’s called now. All I want is meaningful employment. Working makes me happy, it gives me a purpose. It stops me thinking about MS all day long. It pays me money too and that would take the pressure off my incredible husband who now feels he has to work as many hours as humanly possible to make up the shortfall. But most of all, a happy busy mind is, for me, better than any drug for keeping my symptoms at bay. I can’t cure MS with work, that’s ridiculous, but the positivity of a sense of purpose goes a long way.

Image Copyright: <a href=’http://www.123rf.com/profile_vadymvdrobot’>vadymvdrobot / 123RF Stock Photo</a>

 

Entry 4) Climbing mountains and stumbling down stairs

“MS is like a box full of chocolate covered sprouts!”

2015 arrived and the realisation that my life had completely changed was beginning to dawn on me. MS had not only left my career in tatters but was playing havoc with my legs and energy levels. In short, I had a mountain to climb. Hold that thought a mo..

Meantime, I had to buck up and earn some sort of living for myself. I wasn’t ready to look at benefits and such things at this stage – that would be the ultimate indignity in my world. Besides, I CAN DO THIS! I hadn’t yet established what I could cope with either physically or mentally and I was in blissful denial that MS would have any sort of long term impact on my career. Rather than inflict myself and all the unknowns of my condition on someone else, I decided to set up on my own as a retail consultant. I had the skills and plenty of experience so it seemed like a logical step, for now anyway. Thankfully, my first client was someone I knew and I got my first six-month contract almost immediately. Excellent! I set about putting a new shop together for him and thoroughly enjoyed myself. This was going to be ace!

My body however just didn’t feel right. My legs felt really odd, like they were someone else’s, and the pain and spasms at night were disconcerting. I mentioned it to my nurse during my infusion one day. I asked her ‘Just tell me straight, are my legs ever going to feel normal again?’ She knew I wasn’t one for fluffy responses and simply replied ‘I’m sorry Jo but no, it’s extremely unlikely’. Fine, I’d asked for it straight. I thanked her for her honesty and I meant it. My MS nurses are angels and I wouldn’t doubt them for a minute.

After she left the ward, hot, fat tears rolled down my cheeks and I wept in silence while the drugs dripped into my veins. I had already second guessed the answer to my question but I wasn’t prepared, not in the slightest. I had been enjoying clinging to the warm, fuzzy feeling of hope. Goodbye old legs, and in the words of the late, great Sir Terry Wogan, thank you for being my friends. I actually grieved for the rest of the day.

I got back home, pulled on my big girl pants and drank a large glass of Pinot. Bollocks to this. I have literally no idea if or when my legs might pack up and leave me for a sunnier life so I’d better get on and get walking before it’s too late. It was at that moment I decided I was going climb Mount Snowdon. The next evening, I gathered together a group of mates and told them the good news. They would be my support team and we would do this in May 2015 to raise funds for the MS Trust. Game on!!

I trained (ie: went on lots of long walks with my husband) over the following months. Some walks went well, others were, frankly, bloody painful and extremely hard work. I began fundraising and the response really spurred me on. By the time ‘Ascension Day’ had arrived, we had raised just shy of £4000! Blimey, I’d better make it to the top or I’ll look like a right berk!

In case you were wondering, I did make it to the top. A full six hours of hiking followed by a massive dinner, lots of celebratory drinks and a handful of painkillers. I felt fabulous! First mountain conquered. JO: 1, MS: NIL. Take that!

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A side note on Shonky Leg Syndrome..

It’s ironic really. For the first 40 years of my life I hated my legs. They never looked right in my opinion – too white, fat knees, wrong shape. I was embarrassed by them for reasons only of pure vanity and consequently, rarely got them out in public. How shallow was I? But that’s the only reason I hated them. They worked great and felt fine as far as I can remember – I certainly had no problem walking for miles or standing on them hour after hour, day after day. The way my legs ‘felt’ never featured in my life. They were just there and they did what legs do.

When MS rather rudely barged its way into my life uninvited, the little bugger thought it would be hilarious to run off with my perfectly adequate pins. Now I wouldn’t have minded if they’d been replaced with the pair of perfectly tanned, shapely ones that I’d always wanted but oh no. MS doesn’t do nice things. Instead, I get a pair of someone else’s legs, every flipping day. Brilliant. What was it Forrest Gump said? “Life is like a box of chocolates, you never know what you’re gonna get”. Well if that’s the case, here’s what I say: ‘MS is like a box full of chocolate covered sprouts; you always know that whatever you get next is going to be horrid!’

This has been the case for nearly three years now and frankly, it’s getting a little tedious. Shonky Leg Syndrome, as I like to call it, is difficult to explain as it’s not always outwardly visible but I’ll give it my best shot.

Imagine waking up every morning with a dead, heavy, tingly sensation in your legs. You lie there and wonder if they will take your weight when you go to stand up. The sensation is slightly different every day so you’re never quite sure what might happen next. Eventually, you pluck up the courage to swing them onto the floor and stand. Yep, they take the weight. Good. That’s step one taken care of. You venture down the stairs, holding the bannister, just in case. It’ll be another hour or so before you trust them completely. You get in the shower, clinging to the grab rail, just in case. Warm water helps to bring some life to the dead feeling.

Different days bring different sensations. Sometimes they work almost normally, sometimes there are waves of pain traveling over them, sometimes you can hardly lift them at all because of the 20 ton weights your little MS monster has tied to them overnight. Sometimes the day goes without incident and sometimes a wave of pain so strong will shoot down one leg and completely take it out from under you. It’s nothing short of a lottery!

Come the evening, its nearly always an early night to rest my pins. No matter what I’ve done in the day they’re always tired and sore come the evening. Going to sleep is not a problem, staying asleep is a whole different ball game! Night time brings restless legs, pain and burning sensations in the feet and ankles – unless I take neuropathic pain killers, magic pills, they’re a real help.

To the spectator, most of all these goings on are completely invisible. Regardless of how my legs feel, largely I just get on with it. I can feel the pain, feel the sensations, feel the heavy weights attached to my ankles but it doesn’t always show. I have become a master of disguise! The flip side is that it can make you feel like a fraud. I might have climbed a mountain, walked my dog or been to the supermarket to do the weekly shop without anyone noticing my shonky legs. The difference is, while ‘normal’ people can carry on with their next task, I will need to have a sit down. Maybe even a lie down. Sometimes even a whole day on the sofa to get over such frivolous activities like housework or exercise!

A Christmas wish addressed to my legs: Come back my beautiful, white, reliable old friends – all is forgiven!