This is a short one today and it is definitely not one that I thought I would write. I had it all planned out, writing my story. I definitely didn’t factor today’s part of the story into it.
I thought about hiding how I feel today, because people reading this are all giving me such amazing comments. Like telling me what an inspiration I am, how strong I’m being and how positive I am. People are approaching me at work and telling me how much they are enjoying the read. How could I let people down by putting this out there?
But if I didn’t write this particular part of the story, I wouldn’t really be speaking my truth would I? I wouldn’t be telling you my story as it is.
Today I am not OK. Physically I’m OK, albeit a little tired. However, today I’m having my first real “why me?” day. I’m furious, I’m resentful and I’m scared. I don’t really know what’s brought it on. Possibly the fact that Dave and I were talking about my first appointment with an MS Specialist next Friday, and I’m terrified. I’m not entirely sure why. They can’t tell me anything worse than what I already know (I don’t think), except that maybe they need to give me a lumbar puncture so that they can work out what medication I need.
It just feels that today, all them questions and statements are coming out. You know the ones:
“It’s not fair”
“I don’t deserve this. Nobody deserves this.”
“Why me anyway?”
“How did this happen?”
“Did I do something wrong?”
Today, I can’t believe that I have MS. Perhaps I’ve been living in a place of denial for a while and today I’m finally seeing it. Or maybe I have been seeing it all along, but today I’m just having one of those days. It’s all part of the journey though I guess.
I asked Louise earlier “why me?” Do you know what she said? “Because it will change you and make you an amazing person.”
How awesome is she?
Anyway, after an epic cry, a big cuddle with Dave, my favourite for tea (pasticcio if you’re interested) and a few more wise words from Louise, I feel a LOT better.
Sometimes all you need is a cry to put everything in perspective (and to put it in a blog post).
N.B: I feel better having written this. To the point that I almost didn’t publish it. But I really did feel like this just half an hour ago, so it’s going out there, warts and all!
All I could do was wait for an appointment, and in early August I got the letter that I’d been waiting for. Not a Hogwarts Letter (because we all spend August hoping it’s our year, right?) but a follow-up appointment for the 11th September, back at St Paul’s Eye Unit.
As the date rolled around, two days before Dave and I were due to fly out to Athens for two weeks, I almost considered not going, as my eye was more or less (I’d say about 95% ish) back to normal by then. It didn’t cross my mind that there would be anything underlying.
In terms of the progression of it, it had probably only continued to get worse over a two to three week period, remained as it was for a week or so, then got better within another two. I don’t think things were “wrong” for more than six weeks.
My Mum spotted the connection. Six weeks was the same duration as my “dizzy periods” four years earlier. She suggested that they might be linked, but I told her I couldn’t see (I know – I’m so funny!) how they could be.
Mum’s are always right though aren’t they?
Out of morbid curiosity about what on earth had happened, I decided to go to my appointment.
It was for 1.45 in the afternoon and I was called in for a couple of initial tests really quickly. I passed the ones I had failed so miserable just two and a half months earlier, with flying colours. My vision was back!
My high spirits didn’t last too long as I waited for an hour to be taken back in for a field vision test. I had to stick my head in this white box thing and click this device that they put in my hand everytime I saw a little light flicker – it could pop up anywhere. Then I was sent back into the waiting room.
After a lot of sitting around, I was finally called in to see the opthamologist at 4.15 pm. My high spirits at passing all the tests had long gone – I was really mad that I had an appointment time but still had to wait 2.5 hours to see someone.
He was very apologetic for the long wait that I’d had and started off by asking how my sight was now. I told him that I felt that was about 95% there.
He then told me that they’d diagnosed what had happened as Optic Neuritis. He explained that it was nerve damage to my eye. The myelin sheath was damaged which in simple terms meant that if you liken your nerve to an electric cable, the insulation had worn away. My eye was short circuiting!
The good news was that my body, being the amazing thing that it is, had repaired it, but I was told that 95% is probably the best that I’d ever get. Sounded good to me! I could live with that.
The thing is, he wasn’t done. Finding what it was, wasn’t enough.
They wanted to know “why?”
He asked me if I suffered from mood swings. I said, no more than the average person (all the while thinking it was a stupid question after he’d made me wait 2.5 hours), and that leg tingling question came up again.
And then he changed my world.
“We need to send you for more tests. We think there is an underlying condition and that condition that we’re looking for is MS.”
I must have gone into shock. I was still so happy that my sight was back, I may as well have just asked if I could have fries with that!
He asked me what I knew about the condition, which was probably about the same as anyone that has had little to no contact with it.
I knew of two people with the condition. Both in a wheelchair. Both people suffering badly. The kind of people where a hint of sympathy, or perhaps pity, enters people’s voices when they’re mentioned.
Surely that wasn’t going to be me?
I told the doctor the extent of my knowledge and he told me not to compare myself to people I knew. The prognosis for me was probably quite good as I’m young and active. Plus, medicine is advancing all the time.
I said thanks to him and left. The second I walked out of his office, everything that had just happened hit me. It was so hard to hold it together until I could make it out of the hospital.
Then the floodgates opened. Despite how incoherent I was through the tears, I immediately called my Mum, followed by Dave and then Steph, my manager. Distraught does not even begin to cover how I felt and I don’t think I’ve ever cried like that in all of my life.
Somehow, in spite of all my tears, I made it to the train station and back home. When I got there, Dave had already done loads of research, and his words were “don’t worry. We’ll get through this together.”
It’s difficult to describe, but the use of the word “we” suddenly made everything easier. He was in it it with me and I wasn’t alone.
He has been the difference in all of this. He’s my strength. He’s the one who catches me when I fall (literally). He’s the one that comes to my appointments, and he’s the one who listens to, and comforts the tears.
I could have done it without him. I’d be selling myself short to say I couldn’t. But without him by my side, I don’t know if I could remain as strong as I do. It would have been far more of an uphill battle.
I promise I’ll get on to telling you what MS actually is at some point soon – but for now I want to tell you the story as it has unfolded for me.
In June 2017 I was at Poppy’s play date. As is typical in the UK, the fact that it was June, didn’t stop it from raining. I was stood on a hill watching Poppy play with her buddies, Dexter and Til when I got (what I thought was) some rain in my contact lens. I wiggled it around a bit, sometimes that fixes it, but no luck. I’d slapped my make up on in a hurry as well that morning so perhaps I’d managed to get some foundation or mascara on my lens. That certainly wouldn’t be a first.
Once I got home, I gave the lenses and my eyes a good clean with saline solution, and popped it back in. No change. Enter the excuses. “Well it could just be the new prescription. It always takes a while for my eye to adjust.”
I carried on with this irritating, slight lack of focus into the next week. Making excuses such as “oh, I’ve just put them in back to front”. It wouldn’t be the first time I’d put the left lens in the right eye and vice versa. I have different prescriptions for each eye so this obviously causes me problems.
On the Thursday, I was trying to read the serial numbers off some computers and was really struggling. I REALLY knew there was a problem when in our team meeting on Friday I found myself having to walk right up to the projector screen on the wall to see what was on it.
Saturday, we were back at Poppy’s play date and I could tell that whatever was up with my vision had got worse. Those of you that are contact lens wearers will appreciate it feeling like I’d not bothered to put my contact lens in the left eye. If I covered my right eye up, everything went grey in my left. I had limited peripheral vision still but I couldn’t see straight ahead. If I looked directly at you, I could see you from about chest downwards.
The gravity of what I was losing hit me like a ton of bricks and I broke down in tears once we got home from Poppy’s play date. I was really lucky and managed to get an appointment to see my Optician within a couple of hours.
When trying to read the letters off the wall out of my left eye, I couldn’t see a thing. My optician said based on all the photos he took of my eye, he couldn’t see anything wrong with it, but also said there was clearly something very wrong because I couldn’t see. I felt so relieved at this – at least I wasn’t dealing with a detached retina.
He referred me to Boston House, a branch of the hospital and the eye specialist in Wigan, for further tests. He also suggested, if it got any worse in the meantime to self refer to St Paul’s eye unit, at Liverpool Hospital.
By Tuesday evening, I’d still not heard anything from Boston House about an appointment, and I was pretty hysterical. Following a conversation with mine and Dave’s line managers, it was agreed we could take the day off from our respective jobs to go to St Paul’s in Liverpool.
That first day in outpatients, went on and on. After going through Triage, I was eventually seen after almost 1.5 hours. They prodded my eye about, putting every drop in my eye you could imagine, and making me (attempt to) read coloured blobs with numbers hidden in them, and the letters off the wall. Where my left eye was concerned, I failed every single test miserably. My least favourite experience is where they dilate your pupil. They put a drop in which opens your pupils right up, so that they can get a good look at your eye. Kind of like this guy, except waaaay less cute!
Your pupil being dilated, means that there is a hell of a lot more light going in than usual, and you’re in a brightly lit hospital waiting room. It REALLY hurts!
Anyway, I digress. After all that prodding I was informed I needed to come back the next day as the department that could take a photo of the back of my eye wouldn’t be in until then. But not before I’d been asked if I had any tingling in my legs.
Now, if you’ve been following my blogs so far, you’ll know that yes, I did have tingling in my legs. So obviously I lied and said no. To ask such a seemingly unrelated question frightened me. One, why are you asking me that and two, how do you know that?!
I duly arrived at the hospital the following day for an appointment to have photos of the back of my eye taken. I was then introduced to an opthamologist. She informed me that I actually had lovely looking eyes that were pleasant to look at, whilst asking me if I’d been Googling my symptoms. I told her that I’d stopped as Google may as well have just told me that my eye was going to fall out, and I didn’t have any interest in that rubbish. She laughed and asked me if I was experiencing tingling in my legs. There it was again.
It didn’t really enter my head that this might be a really important question to answer and it definitely didn’t enter comprehension that lying about it wouldn’t change it.
She told me she couldn’t see my optic nerve, the bit behind my eye, and she wanted to send me for more tests to uncover any problems there. She assured me that just because she suspected my problems were nerve related, it didn’t mean anything sinister.
Just a day later, on Thursday, I got a call from the hospital asking me if I could go in for an evoked potential test the following Monday. I couldn’t do Monday. I needed to be in Nottingham for a really important meeting, so I asked for the next available appointment, which was in two weeks time.
I got off the phone and Deb, who I work with, told me I was an idiot for not putting myself first and to get back on the phone and see if I could take the Monday appointment. As it turned out I could, so on Monday I found myself back on my way to Liverpool to have a bunch of electrodes put on my head, around my eyes and in my eyes.
The electrode, it just felt like an eyelash stuck in my eye. But honestly, if you stick something resembling a stray eyelash in someone’s eye and then tell them not to blink, you’re asking for trouble! I couldn’t stop blinking, and I’m pretty sure I made the nice Irish doctors job very difficult. He stuck electrodes anywhere he could on my head, and then made me watch these really weird moving images. They looked a bit like those magic eye things we all used to do as a kid. You know, with the hidden 3D drawing? The idea is that the images put your eye under intense stress, and the doctor gets to see how it responds. I was pretty sure that the images would hypnotise me or something!
Maybe he did hypnotise me or something, because when I was asked (yet again) if I had tingling in my legs, I answered truthfully.
Apart from an invite to an MRI scan on my head, this was the last I heard for a little while. Whilst I understood that the MRI was on my head, I just thought of my eyes. I never actually made the connection that it was on my brain. Perhaps if I had, I would have realised what I was dealing with, but I simply didn’t.
I’m always cold. For as long as I can remember, I’ve always felt cold. Except for when I’ve been boiling hot of course. I’ve struggled to regulate my body temperature for most of my life.
Sometimes when I’m exercising, I completely overheat, particularly on a hot day. My personal training sessions with Sam are only 30 minutes. In my four years training with her, on two occasions I’ve had to stop at 20 minutes because I’m seeing stars and want to throw up. Not like I’ve over-exerted myself. No. This is different.
Now, in the last 18 months or so, the night sweats have started. The worst thing about these is that I feel freezing, and all the while, I’m sweating buckets. I’ve always struggled with regulating my body temperature though. It’s just one of those things. Nothing to read too much in to.
The day I got told that I might have MS (I’ll tell this story properly in another blog), I was asked whether I suffer from mood swings. Well, at the time I answered with a definite “No!” What woman wants to be accused of mood swings?
Upon reflection however, this is definitely something that is a bit of a theme with me. I’m a ranter. I’m also a crier. I cry in both sadness, and with laughter. Sometimes when I cry with laughter I get really confused and start sobbing with sadness. It’s a strange experience for both me, and anyone that witnesses it. I’m pretty sure Dave thought I was a complete fruit loop the first time I did it in front of him.
The trouble is, it’s unlikely we’ll ever define that that is a result of MS. It could just be “Jo”. I’ve accepted that as “Jo” for the first 31 years of my life, so it doesn’t matter what the answer is, but needless to say, I’ll probably always wonder.
The “window-shelfy thing” is another example that sticks in my mind of things that weren’t quite “right” with me. I have always been academic. I was a straight A student, I have an upper second class honour law degree, and I passed my Bar exams with a Very Competent. I’m good with words. I have a great memory. I have awesome recall. Or do I?
I had to send an email to some work colleagues recently which involved talking about the “window sill”. Thanks to Kat I will never forget that word again! Much to their amusement, I called it the “window-shelfy thing” because for love nor money could I recall the word. I know what you’re thinking, because I thought it too:
“I’m 31, there’s no more room left to keep words you don’t use often”
“It’s not that common a word!”
“Other people forget words all the time!”
But I don’t forget words. It’s not something that I do. It’s funny, because of all the random symptoms (not relapses) I explained away pre-diagnosis, this is perhaps the one that distressed me the most. I’m still trying to work out why. Maybe it’s because I’ve always prided myself on being “academic”, and this kind of thing coming so easily.
Like with my emotions, there’s a very real possibility that all of my excuses for this particular “brain block” are absolutely correct. Equally, I can’t ignore the fact that MS can affect cognitive abilities, like recall of words.
The more I write these blogs, the more I see how many things with my body haven’t been right for a very long time. These symptoms haven’t just appeared as a result of my diagnosis. I didn’t not feel them before. I just excused them away, without any medical or scientific justification for years. My excuses and explanations have been taken away from me though.
I’m sure as you have read this, and Part 4 of my story, you’ve wondered what the big fuss is. None of these things are huge (apart from maybe the MS hug and the fatigue is tough) but they’re there. Hanging over me, everyday. You’d be right to wonder what the big deal is. But the big deal is, that all these little symptoms mean that every so often a relapse will happen, and I really will find life tough when that happens.
Equally, all these little symptoms are nothing more than a mild irritant at the moment but they might get worse. They might become more than just irritating. But they might not. I don’t know. The nature of MS is that it’s that unpredictable. I see little point in worrying about that though – it’s out of my control.
If there’s one thing I would love people to take away from my blogs, it’s to not ignore your body when things don’t seem right. There is absolutely no harm in getting it checked out. I don’t want you all to turn into hypochondriacs, but if things don’t seem right, don’t ignore it!
The trouble is, all these little symptoms didn’t seem serious. They all came along over such a long period of time, that I was used to them and just accepted them.
Ever since my “dizzy” episodes, my balance has completely died a death.
I’m a girl that could stand in the tree position in yoga for at least 10 minutes. I remember being in a ballet class at around 14 and being challenged to how long I could stay stood on tip toe (I won that contest!)
But now, I am a girl who goes out for a walk and might fall over 5 times. I am a girl that goes to a Zumba class and falls over her own feet. I go to step aerobics and trip over the step and fall spectacularly on my arse. And I’m a girl who can’t walk 10 feet over “there” without clinging onto Dave for dear life because I’ll probably have some kind of misplacement of my feet that will probably end in a face plant! In fact, my balance is so bad, I can be stood and almost go flying for no apparent reason at all. I literally struggle to stay stood on my own two feet.
I have this noise that I make when I have a wobble that I can’t really explain. But Dave probably hears it more times than you can count on one hand over a weekend. It’s just a kind of “uuuhhhhh” sound and it’s not very flattering!
Along with a distinct lack of balance these days, and occasional lapses in coordination, somewhere along the line I started having phases where I slur my words. This is mostly noticeable at work when I’m training. I have days where the words just don’t come out in the right order or without all joining up.
Probably about 18 months ago, I mentioned to Sam that I was struggling to really take a deep breath. I was yawning but struggling to hit that sweet spot. I felt like someone had a grip of me around my breast bone, and was squeezing. I just couldn’t quite catch my breath properly.
She’d heard of this being a problem in people who had a sensitivity to caffeine, so she suggested that as an avid coffee drinker, I should switch to decaf. I did this immediately – I don’t drink coffee for the effects, it doesn’t stop me being knackered so it wasn’t an issue for me.
Within a day or two, the squeezing sensation was gone. Result! Problem solved! I trickled back into the habit of caffeine though within a couple of months. And guess what? Sensation re-appeared. So what did I do? Obviously I knocked the caffeine on the head again.
And it went again.
But I didn’t go back to caffeine this time and it still happened. Of course I did nothing with it though. It was just something that happened sometimes, and maybe I was just THAT knackered that I struggled to get a proper satisfying yawn. No amount of yawning was going to satisfy me. Yes. That was it.
And then I got told that I might have MS.
As any normal human being, I did the thing where you go and look up all the symptoms, particularly as I didn’t really have a clue what it was.
The list is endless.
I was glancing down the list and so many of the weird “glitches” with my body that I’d put down to getting older, putting on weight and working too hard in the gym were being given a “proper” answer. As I read down the list, I saw it. The MS hug.
“The MS hug is a symptom of multiple sclerosis where you feel as if you have a tight band around your chest or ribs, or it can be pressure on just one side of your torso. Some people find that it is painful to breathe. The feeling can range from annoying to very painful.”
So that’s my so-called caffeine problem explained – BRING ON THE EXTRA SHOTS IN MY LATTE!
On the subject of caffeine, I mentioned before that it does nothing for me and perhaps that’s another link in to MS. The fatigue can be like you’ve never imagined or experienced. When I am really fatigued, I suffer from real lapses in concentration too. I’ll forget what I’m talking about mid-sentence. I don’t mean just losing my thread. I mean I literally forget what I just said, who I am and where I am. I struggle to hold focus in conversations with people. I zone out. I know I’m doing it, but I struggle to find my way back.
The explanation for this come as somewhat a relief. I felt so ignorant for how I behaved sometimes. I still do, but it comforts me that there is at least a reason for it. I don’t see it as an excuse though. For me, it’s something in my behaviour that I need to learn to be conscious of, and to manage it. The “how I do that” is still unanswered and something I’m exploring with myself.
I could go on and on about all my possible symptoms of MS, and how I excused them until I was diagnosed. I’m sure you’re noticing that I had all the excuses. Now the thing is, those so-called excuses still might ACTUALLY be the reality.
The trouble with MS, and the thing that I’m most struggling to come to terms with, is that a lot of things that are symptoms, might just be how I am anyway. Some things might just be who Jo is. Some might be Jo with MS.
What a minefield eh?!
The thing is, it doesn’t really matter. I know that. It’s just actually accepting that that’s challenging. There are some symptoms that are unmistakably MS though, and it’s important to note that these things aren’t a permanent fixture. They go through waves of severity. I might just wake up with it one morning and by midday they’re not even there anymore. Other days, they might be there, but so insignificant, I’m not even aware of it’s presence.
The next time I got a taste of a relapse, though I didn’t know it at the time, was around about July 2016.
I was in the midst of my Body Coach phase. I was in Cycle 2, which involved GVT, or German Volume Training. On this particular day, I was squatting. 10 sets of 10 at 20kg was what was ordered by Mr Wicks, and that I was going to do.
I was hitting it pretty comfortably until my 8th set. My legs just went to jelly. I managed to complete my 10 sets but there wasn’t a hope in hell that I’d be following up with 10 sets of 10 walking lunges. Nu-uh. Not a chance.
As I walked out of the gym, I was acutely aware that my legs felt like they were going to give way underneath me, and I seemed to have lost all control over my left leg. It was flapping all over the place like a flag in the wind.
“It’s ok,” I told myself. “10 for 10 is a pretty tough target and your range was probably about 80% there so you’ve probably just over exerted yourself.”
In an effort to right my problems with my leg, I booked into some sports physio sessions. After two he seemed pretty happy he’d done all he can and sent me on my way with a list of exercises to carry out which would aid my recovery.
In my next personal training session, I told Sam what had happened. I was forever telling her about all the weird things that my body did so she probably thought “here we go again!” I never told her these things for her to go easy on me, or to get an easier ride. I just felt she should know if she was training me.
It was on this day that she noticed a weird unexplained spasm in my left leg. As soon as I put any weight into it, it was shaking like there was hundreds of kilos of pressure. Around the same time I was doing a lot of skipping and boxing training in my sessions with her, and I was struggling to hold in my need to go to the toilet which was a completely new thing to me (I’ve not had kids. That’s not a problem for me yet!)
In addition, my whole groin area had that same tingling sensation that I’d experienced in my leg for the previous four years or so.
But there’s an explanation for that isn’t there?
Obviously what I’d done that day I was squatting, was I’d trapped a nerve in my lower back and all sense of anything had been lost. Hadn’t I?
And that’s when I had my first “accident”.
I honestly cannot believe I’m about to share this next bit, but in the spirit of really telling my story and also telling you what MS has been like, and will continue to be like for me, it’s only right I tell you the full story.
If you don’t like toilet talk, look away now!
I cannot explain to you what it’s like to lose control of your bowels at 29 years old. It is terrifying. It is embarassing. It is confusing. 29! This shouldn’t be happening until I’m at least 79 surely?!
I couldn’t stop shaking and it really did upset me. I was hysterical, because to make matters worse it happened in public. Me and Dave were out shopping in Sainsbury’s. I managed to run off to the toilet and I text him asking him to get wipes and a change of clothes and to ask a female shop assistant to chuck it into the toilets for me.
Admitting that this happened (and this didn’t end up being an isolated incident) is not something that’s easy, even now, even with an explanation for it.
Of course, I made all the excuses at the time, even when Dave told me that it’s not normal and I should go to the doctor I brushed it off.
“I’m doing Joe Wicks. I’m on a high fibre diet”
“Ahh I had last night’s cottage pie warmed up in the microwave, maybe I didn’t do it properly”
“It’s where I’ve trapped a nerve. I can’t work out when I need to go because I can’t feel it”
I was full of excuses.
I quickly got very attuned to myself though and managed to avoid too many more incidents. It put a spanner in the works of our social life for a while though because I was so scared of getting caught short again. I didn’t want to stray too far from home and never within a certain window of eating. The fear was very real.
This phase probably lasted for a good couple of months. My left leg continued with the mind of it’s own. Not painful, but certainly irritating.
And I looked bloody ridiculous much to the amusement of EVERYONE. My word how we laughed at me. Two of the people who laughed most have said they feel awful, now we know why, but that doesn’t bother me. I’ve got to find the funny side in all of this. It’s what keeps me going.
Just three months after I was sick and dizzy with double vision and constant vertigo, it happened again.
It came on this time much more aggressive than the first time. However, having made so much progress when I went back to work last time, I took a week off work again, but didn’t bother going to the doctor or getting a sick note.
Despite feeling dreadful, I dragged myself back into work. As far as I was concerned, I’d had a viral infection a few months earlier, and perhaps I hadn’t shaken it off properly so it reared it’s head again.
Once again, I was back wearing my glasses, and fortunately I hadn’t thrown out the prism that had corrected my vision the first time around.
This time, my “episode” lasted around 5 weeks – so a touch shorter than the first time.
The rugby league season started again during this episode – and I wasn’t to be put off going to see my boys in Cherry and White.
I should have stayed at home. It was horrendous. Getting into the stand was particularly bad as there was no hand rail. Along with everything else that had gone wrong with me, my balance was pretty questionable. I spent the whole match feeling sick, and struggled to even see what was happening really.
Like last time once I’d recovered, I didn’t think of it any more and that was the end of it.
That was the last of any serious relapses that I remember for a couple of years at that point. I was still experiencing the tingling in my legs that had started a few years earlier. I’d grown so used to it though, that I didn’t even notice it anymore. It would come in waves of severity. Even to this day, I still experience it, but it’s never pain. It’s not even discomfort. I can’t even say it’s annoying. I described it to my Neurologist as like someone had put a Berocca in my leg (pretty sure it’s the first time she’s heard that) and I made a friend laugh the other day when I said it just feels effervescent. He’s confident that no-one has ever described a symptom of MS in such a positive way, and if I’m honest, I’m inclined to believe him!