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Entry 3) To tell or not to tell

“I felt like a fraudulent leper with anger management issues”

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..

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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:

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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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Entry 2) Decisions, decisions

“Can I still have a glass of wine while I’m on this treatment?”

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 27th 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!

Entry 1) I was on top of the world…

“Put the champagne on ice.”

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.”

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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…”

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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?!?

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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”

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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”

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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 6th 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