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..

 

#lambournRDA #ariateurope

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 😜)!

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!

 

 

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

 

 

 

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.

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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!

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!

The summer of 2014 came and went. Much fun was had catching up with friends and enjoying the sunshine. I don’t think I’ve spent a whole summer outside in the sun since I was a kid! I had a sun tan for the first time in years.

Now, I decided quite early on in my diagnosis that I would not keep it a secret. Throughout my life, I have watched people try and hide stuff or fail to communicate properly and I can safely say that no good ever came of it. A problem shared and all that.

So, throughout the summer, I made a conscious effort to let everyone know about my diagnosis. If, like me, this is the path you choose (and it’s not for everyone, I understand that), then expect the unexpected. It is impossible to prepare for the myriad reactions people will have – just go with the flow!

Some looked at me in disbelief, some burst into tears, others took it on board and then carried on a normal conversation. What I wasn’t expecting was how some of those reactions made me feel. I will explain and illustrate:

“MS? Oh, John up the road has got that – he’s fine, just carries on as normal, you’d never know to look at him!”

Those words felt like this..

It was a punch in the face and it made me really angry. How DARE you belittle my disease!! And how DARE you presume to know what John Up The Road is going through!! When you see John Up The Road out and about, it’s because he’s having a good day. NEWSFLASH! When he’s having a bad day, he probably can’t even leave the house. As a result, you conveniently don’t see that side of his life. Bet you didn’t think about that, did you?! Arghhhhh!!

Of course, I said all of this to myself while biting my tongue very hard. I hadn’t expected to have those feelings but it really hurt. It also made me feel like a fraud. At the same time, I felt sorry for the person who made that comment. There was no malice in it, in fact it was said with good heart and was an attempt to make me feel reassured somehow. Unfortunately, it had the opposite effect. I felt like I had to prove my MS, prove my pain. I didn’t want sympathy, I’ve never wanted that, just understanding. If this was the sort of attitude I was going to come up against, I wondered if it might be easier to just injure myself. At least my problem would be visible.

The next one was better:

“Gosh, how do you catch MS then? Is it viral?”

Those words made me want to do this:

I mean REALLY?! Maybe I should just tie a bell round my neck and walk the streets shouting “Unclean! Unclean!” I was speechless. I stepped out of their space in case they were worried I might sneeze on them. Again, there was no malice in the comment but it was becoming very clear to me that few people had any understanding of this disease. To be fair, I knew nothing about it before I had it. Education of others was going to be key to living with MS. It’s part of the reason for this blog.

Suffice to say, my decision to tell people about my MS wasn’t going to be an easy one to live with. Over that summer, I had been made to feel like a fraudulent leper with anger management issues. But, I also felt loved, supported and safe with those that knew me best. This would never have happened if I’d kept my mouth shut. I had a network of amazing friends, family and neighbours to help me out on the bad days, run me back and forth to hospital when I needed it and listen to me ramble on when I needed to vent. I discovered that there are, in fact, quite a lot of other young women nearby who are going through the exact same thing. I was not alone. And to me, that’s worth a hundred ill thought out comments. To feel alone would be so much worse.

At this point I’d like to say that I defaulted to my factory setting and went back to work but that wasn’t to be. My sabbatical came to an end and the only route back to work on offer was straight back into my full-time management role. Damn it. I couldn’t do it. My body would never allow it and I knew full well that if I went back to work at my ‘pre-MS’ pace, I’d be in hospital within a week. I chose to resign. I didn’t want to burden anyone with this. Besides, in my head I would be over this in a few months and then maybe I could try something different, start a new business perhaps, find another job? Oh my goodness, how naïve was I..!!

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It’s now June 2014 and I have some monumental decisions to make. I’m feeling much better and have successfully locked my little MS monster in the cupboard, for now. He bangs on the door every now and then, just to remind me he’s still there so I do my best to ignore him.

Anyway, now I have something else to worry about. My neurologist has recommended that I go on a drug therapy, the strongest one available, to slow down the relapse rate and help prevent any further nerve damage. They’ve just started giving this drug to the newly diagnosed that have rapidly evolving MS to slow it down, to try and halt it at an early stage. Sounds good!

He explains that the drug, Tysabri, is administered via an intravenous drip fed infusion in hospital every 4 weeks, for at least the next 2 years. Oh goodness, more needles. And the side effects? Well apart from all the usual side effects (or disclaimers) that you read on that annoying bit of paper inside most packets of pills, this drug comes with something I’ve never heard of: An increased risk of developing PML. Joy, another abbreviation. Progressive Multifocal Leukoencephalopathy. Don’t worry, I can’t pronounce it either! PML it is. Can you guess what I did next? Yup, asked the google machine:

Progressive multifocal leukoencephalopathy (PML) is a rare and usually fatal viral disease characterized by progressive damage (-pathy) or inflammation of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal).

I then did what most people would do at this stage – TOTAL PANIC!

Note to self; STOP GOOGLING!

I had a major dilemma on my hands here. This drug could potentially reduce my relapse rate by 80% and therefore vastly reduce the amount of damage that MS could do to me. On the other hand, it might kill me. Hmmm, more info required me thinks but from qualified professionals this time, not the internet.

This was one of the most monumental decisions I have ever had to make and it wasn’t going to be easy. I couldn’t concentrate on anything else and I was still suffering from chronic fatigue. For the first time in my life, work had taken second place and apparently, it showed.

I explained to my employers the decision I was facing and it was suggested that I take a 6-month sabbatical to work this all out and get back on an even keel. Well, after the 6 months of hell I’d just been through I thought this was an excellent idea and grabbed the opportunity. It was unpaid but I didn’t care at that stage. A whole summer to rest, get some sunshine, get some sleep and get myself back on track. I’ll take that!

July 2014 and I am on sabbatical. I book more appointments with my neuro, MS nurses and an MS specialist doctor to get some more facts about this drug. They allay my fears, the risk of developing PML is low for me at the moment and I will be very regularly monitored. I join a couple of Facebook groups to talk to people who are actually on the drug and they all seem very happy with the results. I talk with my family, I do some more research on the MS Trust and MS Society websites.

I then ask one last very important question: “Can I still have a glass of wine while I’m on this treatment?” Yes, that’s fine. Decision made then – in for a penny, in for a pound as they say!

On the 27^th August 2014, I had my first drug infusion. It was fine. No high drama and all it did was make me feel very tired. Nothing new there then! This was going to be part of my normal routine for at least the next two years and I made a conscious decision at that point that Tysabri day could not and would not be “the dreaded needle and drug” day. It would instead be ‘treat day’. It would be ‘naughty hot chocolate and cake from Costa’ day. It would be ‘guilt free sleeping all afternoon’ day. It would also be ‘pizza and pinot’ night!

The 10th December 2013, about 6pm. Work was insane. I was running two farm shops, 15 staff and clocking up about 50 hours a week. My boss had decided that we were to open a third store from scratch and I would be heading that up too. It was a fair distance away but hey, if they thought I could do it, I was up for the challenge! I was invincible after all…

Anyway, my boss and I were in a marketing meeting one evening going through the branding for the new store. I sat there, taking it all in when WHACK! Jesus, it felt like someone had clubbed me round the head with a log. I flinched, hoped that no-one had noticed, smiled sweetly and carried on. 5 minutes later..WHACK! I flinched again. WTF?! I looked around, just to check there really wasn’t someone standing behind me with a mad grin and a log in their hand. There wasn’t, obviously. Keep smiling, stiff upper lip, carry on. WHACK! FFS!! I nearly said that out loud. This carried on for about an hour and then, thankfully the meeting ended.

My boss and I went out to the car park to have a quick catch up before we headed home. He wanted to have a chat to tell me I’d just been given a promotion and a pay rise in recognition of the excellent work I had done to date and for the pile of extra work I was about to take on. WOW. I hadn’t seen that coming! I was well and truly at the top of my game now, flying high. I rushed home to tell my husband – I was so excited! ‘Champagne then!’ he said. I would have loved to but my head hurt and I really needed some painkillers and a good nights sleep. Put the champagne on ice…

Champagne’s on ice then!

“It’s just work stress, take a week off.”

After being whacked round the head with a log for a couple of weeks, I decided I should really go to the doctor. Not something I’m prone to doing but this was getting beyond a joke. Diagnosis? Possible migraine, possibly cluster headaches. I left with a prescription for some migraine tablets and a burning desire to know what the hell a ‘cluster headache’ was. So, I did what all sensible, level headed intelligent humans do and asked Google.

Oh My God! Cluster headaches – even the google machine doesn’t know how they are caused, how to make them go away or how to remedy them. HELP! So, I decided that I must have a migraine after all and took the pills religiously over the next few days. And, over the next few days, the head pain got worse. Excruciating. But I carried on working – it was the run up to Christmas in the farm shops and I was responsible for Christmas dinner for thousands of people. Failure was not an option!

The man with the log had gone into overdrive however and this was starting to get ridiculous. I went back to the docs and saw another GP. I sat in front of her and cried in pain. “It’s just work stress” she said. “Stop taking the pills if they’re not working and take a week off”. You f@cking what?! Work stress?! This woman clearly had no idea the level of stress I normally cope with and this was nothing outside the norm for my line of work. I went home and cried. I knew my body and I knew damn well this wasn’t work stress, or a migraine.

A couple of days later and the pain was now utterly unbearable. The man with the log was whacking me every 30 seconds, he was out of control and I needed him out of my life, NOW! It was a Sunday, my husband’s birthday. I called the out of hours doctor who asked me to come in immediately. She was concerned (at last – someone was going to take me seriously!) and sent me off to A&E with a suspected aneurism. I didn’t know what that was and I didn’t much care at this point. I spent the day in a hospital bed high as a kite on co-codamol, gas and air, husband at my side, apologising for the shite birthday party I’d manage to ‘organise’. A CT scan showed there was no aneurism and the pain finally subsided. We went home wondering what to do next. Co-codamol was log man’s kryptonite however and that was good with me.

We got through Christmas somehow and I carried on working. But things still weren’t right. My muscles hurt, my joints hurt, my head was just a constant dull ache. I decided I had a trapped nerve, maybe in my neck or something and went to see my chiropractor. She prodded and poked and looked concerned. She told me to hold my hand over the top of the left side of my head and feel the heat rising out of it. It was tangible. She knew something was wrong but couldn’t quite put her finger on it. She referred me for a neck MRI so that she could see what she was dealing with.

I booked myself into Cheltenham MRI Unit for a private scan as soon as possible, thankful that I would soon have some answers and that my chiropractor would be able to put me back together again. That was the last time I saw my chiropractor.

And on that bombshell!

“Of course it won’t be that, will it. That would be ridiculous…”

Its January 2014. My neck scan results are in and I have an appointment with a consultant at a private hospital to get my results. He’s a specialist in necks and backs so he’ll know how to fix me. He’ll find out where this trapped nerve / slipped disc / muscle spasm is and make it go away.

I’ve never been to a private hospital before. Very nice! Lots of free tea and coffee, comfy seats and ‘nice’ people. A bit like Waitrose mid-week without the food. Anyway, I digress. The consultant goes through my scan results with me and examines my neck. “I can see you have had some trauma to the vertebrae in your neck. Is that an old injury?”. I explained that I had a nasty horse riding accident in my early 20s which had knocked a few vertebrae out of line in my neck but it had long since settled. He agreed there was no problem or pain there now and wasn’t worried about it. “What I am concerned about is this grey patch on your spinal cord which you can see here on the scan”. Well, I could hardly make it out but I nodded in agreement. “What’s that then?” I asked, not knowing what to expect. He explained that he wasn’t sure and that it was probably nothing to worry about but he would refer me to a neurologist to check it out. Cool, OK. I don’t know what a neurologist is but I’m sure he will be able to confirm its nothing and I go home thinking nothing of it. I’ve got so much work to do and 20 interviews to conduct over the next 3 days for the new farm shop and I really haven’t got time to think about it.

By now, my left leg has become painful, my left arm feels heavy with pins and needles and I have a nasty pain in my face. I also feel like I have ants crawling all over my head, I’m knackered and I can constantly hear blood rushing in my ears. So, I carry on working, driving 150 miles a day to oversee a team of shop fitters, interview staff and select suppliers for the new shop while simultaneously running my two other stores remotely. I am superwoman after all!

The neurology appointment comes through. Lovely chap but he wants me to have a brain scan before he can give me any answers. Clearly I am becoming a little concerned at this stage; you don’t get referred for a brain scan without good reason. Even I know that. “It’s just exploratory at this stage to rule a few things out. Its likely nothing but we need to rule out things like Multiple Sclerosis (amongst other things) before we can treat you”. OK, sounds sensible so I go back to work to tell the boss the news. “They just want to rule out things like MS but of course it won’t be that will it. That would be ridiculous”.

I have my brain scan and suffer all the usual ‘did they find it’ jokes. My appointment comes through to go back and see the neuro to discuss the results. It’s in the evening so I shoot down to the hospital after work, excited that I will finally get some treatment (pills!) for all my aches and pains.

My lovely neurologist sits me down and goes through the scan results. He informs me that the scan has shown several white dots on my brain, or lesions as they call them. I sit quietly. “Mrs Fielder, these lesions, along with the one on your spinal cord and all the outside symptoms that you are exhibiting lead me to a diagnosis of Multiple Sclerosis.” Come again? Surely there must be some mistake?! There wasn’t. He was quite certain. “I will refer you back into the NHS system as, without private medical insurance, this will get very expensive.” I thanked him, gathered up my coat and bag and left his room.

I felt myself stumble a bit as I walked back through reception and out into the car park. I got in the car, sat for a bit, and drove home in calm silence like a rabbit caught in the headlights. I walked back into my house straight into the arms of my husband and as I said the words out loud, we collapsed in a heap of tears. We knew that from this moment on, our lives would never be the same again.

And the rollercoaster ride begins

MS, RRMS, CIS?!?

Relapsing Remitting Multiple Sclerosis. RRMS. The words are on constant repeat in my head like one of those annoying songs on the radio that you can’t get out of your mind. In fact, I say it to myself so often over the following weeks and months that I actually start to get used to it. It’s my badge, my new label, my M&S.

Back to hospital, an NHS one this time, to meet another consultant and an MS nurse. This consultant is very different and she goes through my history, looks at my scans and decides she doesn’t have enough information to verify the MS diagnosis I’ve already been given. Whaaat?! Instead, I am ‘downgraded’ to a diagnosis of CIS (Clinically Isolated Syndrome) pending a lumbar puncture. Excuse me, WHAT?! I felt like a child that had just had their sticker book taken away and shut in a drawer for no reason.  Strange as it may sound, I had spent the last few months reading up on my condition, educating myself and getting used to my new badge. I was starting to get comfortable with it. Now this consultant, this neurologist, this CRAZY PERSON is going to whip it away? I felt instantly bereft, angry and was just about to spout a torrent of abuse when by brain caught up with my mouth and reminded me of the other 2 words she had just said:

L U M B A R  P U N C T U R E.

Now, I have never been a fan of needles, not many people are. I could make a Facebook Life Event over a blood test so a lumbar puncture?! I am, by now, properly panicking. My stomach churns, I feel sick, I want to leave, right now. I don’t even know what a lumbar puncture is but let’s face it, those two words together are pretty self-explanatory. My appointment for the lumbar puncture will be in two weeks’ time. So, again, we go back home and do what any sensible, intelligent human would do and consult the google machine. Oh dear lord, when will I ever learn…

The dreaded Lumbar Puncture!

“The things my husband will do for a chocolate digestive”

It was the 2nd April 2014 and I still had this infernal headache. Nearly 4 months now – it’s amazing what you get used you and learn to tolerate. On this particular day though, I had something to take my mind off it. It was Lumbar Puncture Day! I had been dreading this for weeks but what happened that day was wholly unexpected (bear with, this is highly amusing!).

I walked into the day surgery at my local hospital and was greeted by a team of 2 doctors and 2 nurses, sick with fear and trying to think of every possible means of escape. I checked all the exits but there were none within hobbling distance. Bugger. My husband was there to hold my hand and provide comforting words. The doctors started the procedure. There was no going back now! However, after the anaesthetic went in, I felt nothing and the doctors and nurses talked me through what was happening. I started to relax and my husband held my hand throughout. Well nearly…

About half way through the procedure (I’m lying on my side with very long needle and a tap in my spine at this point), my husband’s grip loosened, his hand fell from mine and all colour drained from his face as he slipped off the chair beside me and passed out. Brilliant. I was terrified! I thought he was having a seizure, but I couldn’t move on account of the large needle in my back. Suddenly, I am no longer the important patient in the room as one of the doctors and both nurses rushed to his aid. “Don’t worry Mrs Fielder, and DON’T MOVE, he’s just fainted, everything’s fine”. Yeah, bollocks it is! I’m lying up here with a massive needle in my spine and my husbands’ lying on the floor surrounded by medics. What part of this is fine! The nurses brought him back round and sat him back up in his chair. He had no idea what had just occurred and seemed to wonder what all the fuss was about. Good distraction technique Mr Fielder…

My procedure finished and I was fine, ready to go home – I just had to wait for my husband, who was now in the next bed, to be checked over and plied with tea and biscuits by several nurses before they would let him drive us home. The things that man will do for a chocolate digestive…

My first ever upgrade!

“an upgrade in medical terms is rarely a good thing”

It was now the middle of April 2014. My lumbar puncture results were back and showed that my spinal fluid patterns were consistent with Multiple Sclerosis. Even so, the consultant at the time refused to confirm a diagnosis of MS which limited my treatment options. I had to wait until a relapse occurred. Oh, goodie. I felt a bit lost to be fair.

Back to work then and carry on as normal. I had plenty to do and threw myself back into it. I had another store to open after all! My body was hurting all over. I was limping due to the pain in my left leg, everything was heavy and slow. The fatigue was overwhelming. I felt like I’d been put in a can of treacle with a couple of wet sheep and a few shovels of damp cement for good measure. On the rare days I had off, I slept.

Finally the shop was opened and I crawled back home, literally. I felt like Sandra Bullock at the end of that movie, Gravity (great film, give it a try!).

By now it’s the end of May 2014. I didn’t have to wait long for my second relapse. Do you remember getting a ‘Chinese burn’ at school? You know, when someone grabs your forearm with both hands and then twists it in opposite directions? OK, well imagine that but around your middle, continuously for days on end. That’s what is rather nicely referred to as MS hug. You can’t move, can’t breathe properly and it hurts, a lot.

Another brain scan and back to the neurologist I go! Only this time, it’s a new guy and he’s quite scary. He examines me and asks me to walk to the end of the room. I set off in slow motion. “Faster!” he says in a raised voice. Jeez, it’s not a race! The faster I go, the more pronounced my limp. Oh, OK, I get it. He’s not a sadistic nutcase, this is a neurological test of sorts. He goes through the results of my scan and it’s not good news. Another large scar on my spinal cord has appeared. My diagnosis is immediately ‘upgraded’ to rapidly evolving RRMS. I’ve never had an upgrade before, I felt a bit special! However, an ‘upgrade’ in medical terms is rarely a good thing.

So, I’ve gone from MS to CIS to rapidly evolving RRMS. I am learning to love abbreviations… I felt strangely relieved. Now I would have access to a treatment plan, a way forward. I had my badge back! Firstly though I had to be put on a course of steroids to get me out of this relapse and then we would talk about DMDs (Disease Modifying Drugs).

I took the steroids and went back to work – at about 100mph!! Woo Hoo! I hadn’t felt this good for months! I had 5 days of energy, motivation and a burning desire to build Rome in day. And on the 6^th day…. Boom! Ah, they didn’t tell me about the cold turkey. Good grief, I was a shivering wreck curled up on the sofa unable to talk properly. I was cold, weak, tired and I felt like crap. It passed after a few days and… I went back to work.

What a rollercoaster! But at this point, I still had a job and I was still blissfully ignorant of what my diagnosis really meant out there in the big wide world. The choices I made over the weeks and months to follow changed everything, some for better, some for worse.

I will write regularly in this blog, in bite sized pieces from here on in, to bring it up to the present day. I hope you enjoy it and find it helpful in equal measure. Back soon! xx