MS Awareness Week - Living with MS

 MS Awareness Week – Days #3 and #4

*Potential trigger warning – this blog deals with serious illness, talking about my symptoms, etc, BUT I will be ending on a high note :-)

For my next post for MS Awareness Week I’m merging days 3 and 4, as I was too brain fogged yesterday. I thought I’d write about what it’s like living with MS, more specifically symptoms, and treatments.

I first knew that something was wrong when I was nineteen, although once I was diagnosed I realised that my symptoms went back as far as at least age fifteen.

I had regular pins and needles, and often woke up with a numb arm or leg – despite not sleeping on either of them. I brushed these symptoms aside thinking: “Well everyone gets pins and needles every now and then.” My every now and then was at least once a week - this isn’t normal. I had regular excruciating headaches, think if you had an ice pick going diagonally through your head, then that.

Pins and needles, numbness, and the extreme headaches. The latter was originally diagnosed as Migraines, my GP changed my birth control pill, and prescribed me with Migraine medication, but this didn’t work. 

When I was nineteen I had a virus which had me signed off work for over a month. I was used to my immune system fighting things off pretty quickly, so this wasn’t normal for me. My GP suspected Glandular Fever, but despite testing for this a couple of times, it didn’t show up. I was told this could be a false negative, but that I would get better.

It’s hard for me to pin point when my MS actually started, but the symptoms that pre-dated the virus might have been the start of it, and maybe it was exacerbated by the virus. Who knows for certain. I’ve always been clumsy, and falling over nothing (this is without alcohol folks ;-) ) As well as always knocking over my drinks without fail since I was a kid. I know that some of my fellow MS’er friends have had problems being clumsy since they were kids, so maybe there’s something in it.

The episode of bad health when I was nineteen was pretty scary at times. Once I had a crushing pain in my chest, so bad that my Mum was ready to call 999. Typical me wanting to avoid seeing a doctor stalled her, then out of nowhere I felt perfectly fine. My Mum still wanted me to get checked out in case I’d had a heart attack, I scoffed at this idea due to my age, but agreed to go to see my GP in the morning (please don’t be stupid like I was if you find yourself in this situation in case it is anything serious!)

My GP booked me in for an ECG the same day, and everything was fine, then sent me to hospital for chest X-Rays, which were also fine. I had really sore ribs afterwards, like I’d had a fall or been in a fight, I now recognise that this may have been the MS Hug. The MS Hug is honestly the worst name for it, a hug should be something nice, not something painful (who came up with that name?!)

After that, I would go through a month or two at a time of extreme fatigue (not tiredness, more like flu fatigue), cognitive issues (brain fog/cog fog), and pins and needles. I would then suddenly get better, and then worse again. I was initially diagnosed with Post Viral Fatigue Syndrome, then Fibromyalgia and Chronic Fatigue. I knew that something wasn’t right and I really had to press for a diagnosis. One GP told me that it was all in my head, and I walked out of their office. It was when I asked to see a different doctor that I was taken seriously. 

It was something seemingly unconnected to MS which led to me being diagnosed, which was tinnitus. It wasn’t the ringing kind like you’d expect, especially with me being a musician, and going to many incredibly loud gigs, but a whooshing sound in my left ear. After a hearing test showed that my hearing was fine, the new doctor referred me for an MRI scan. I was called in and that was the first time MS was mentioned as they saw lesions on my brain. I was twenty three and had no idea what MS was, although I knew it wasn’t good. A burning feeling on my left-hand side, extreme headaches, accompanied by more extreme fatigue appeared about six months later.

I’d forgotten to mention to the neurologist that I’d been having pins and needles so frequently and for so long that maybe it delayed my diagnosis, but I guess because it had become so normal it didn’t seem pertinent – if that makes sense? I was put on a drug called Rebif, which meant me injecting myself three times per week – this had flu like side effects that sometimes made me feel worse than the MS. Then I was on Gilenya, a pill I took once per day – this was highly effective, but my liver didn’t like it.

I’ve had my ups and downs, one morning waking up being totally numb on my left hand side but being able to move, then two years later waking up totally numb on my right hand side, but I couldn’t move that side for about half an hour. This was probably the most scared I have been in my life. I remember calling my Mum, and then I called 111 for advice in case I might have had a stroke. I didn’t have other stroke symptoms, so this was an awful relapse. It was a result on being on no medication, as I had to have a wash out period before I started the new meds. I dread to think what would have happened if I hadn’t had any medication at all. 

Thankfully this passed, but I couldn’t get out of my flat for six weeks, and I couldn’t do a lot for myself at that time. I am so thankful that I had a new treatment called Lemtrada which essentially reset my immune system. I noticed improvements fairly quickly, although that could be due to being pumped with steroids as well.

I had my first round of treatment in 2016, and then the second round in 2017 which completed the treatment. 2017 was the first year in I don’t know how long where I felt well, physically and mentally. I’d been dealing with depression since I was a teenager, but this was made worse with the MS, and to feel happy was a strange feeling, but strange in a good way.

I would still experience some fatigue, plus fiery pins and needles for about 30 seconds in a day, that was it. I was well aware that I hadn’t been cured, and went about trying to have as much fun as possible. I ended up living for a year in Perth, Australia, and came back in September 2019. My health remained good until early 2020 when I had a mystery virus (which I’m convinced was Covid). That, with having to shield in the Covid lockdowns has left me deconditioned, and I’m now going through being diagnosed with another mystery illness (maybe Lupus, maybe Rheumatoid Arthritis, maybe something else – that’s another blog for another time!)

Nowadays, I mainly have fatigue, drop foot, fiery pins and needles, but some of this could be explained by the mystery illness, or the fatigue could be due to my Thyroid issues. I’m experiencing depression again, as well as anxiety, although I am receiving therapy, and I am on medication for this. Despite this, I am somehow able to work and I can function, so I’m thankful for that, but I am especially thankful for my latest MRI scan showing no new lesions – which is no new lesions in five years! Definitely something to celebrate and to be thankful for :-) 

My symptoms won’t match exactly with another MS’er, and there is no typical MS patient, which brings me on to how does MS look? Well, spoiler alert, you can’t always tell!

With that, I’ll leave appearances for my next post, and anything else I fancy writing about to wrap up MS Awareness Week. Apologies for any typos, I’ve only done a quick edit rather than my usual over scrutinising of my own work.

It's my birthday tomorrow, so I’ll be enjoying a lie in, and a small celebration with my family.

Thank you for reading, and until next time…

Ciao xx

MS Hug

MS Symptoms

MS Awareness Week - My Diagnosis Day

 

I've been wanting to write a blog for the past couple of months now, but my motivation has seriously been lacking. My mental health hasn't been great this year so far, but I feel I'm in a better place than I was a couple of weeks ago for instance - so I count that as a win.

This week is MS Awareness Week, so I thought I'd contribute by writing a few blogs about my experiences with the disease.

This is an edited excerpt from my final degree project, which was a life writing piece spanning ten years of my life. The piece covered pre diagnosis, diagnosis, and the years that followed. I somehow managed to squeeze in ten years into 4,500 words. I missed a lot out (think about 4,000 words), but I'm proud of it, although there is a lot I would tweak.

So, here's my diagnosis day. Not the beginning of my MS journey, but the part of my story that made sense for me to start at. 

Thank you for reading :-)

Jo xx

If someone had said to me six years ago that I would have started working full time again, and that I had decided to go travelling in Australia for a year, I would not have thought it possible. My life had been turned upside down in an instant after my diagnosis, which was the crescendo after four years of various medical tests.

I’d questioned my sanity on many occasions in the lead up to this day, especially when a lazy GP had told me that my weird symptoms were all in my head. It turned out that he was strangely correct, however not in the sense he had intended.

Staring at the grimy window behind Dr Rashid, and tapping my hand on my right knee, I took a deep breath. I looked to my left at my parents holding each other’s hands. In front of me sat three medical professionals, a consultant neurologist, a nurse, and a physiologist, which to me meant that I was about to be delivered some bad news.

‘Miss Hayes,’ said Dr Rashid with trepidation. ‘Given your most recent symptoms, I can say with some certainty that you have Multiple Sclerosis.’

I could hear sobbing coming from somewhere to the left of me, although I couldn’t even muster the energy to move my head to look due to the shock.

I glanced in the direction of the nurse, who awkwardly slid a box of Kleenex in the direction of my Dad. My Mum squeezed his hand in a comforting gesture, while I dealt with the shock by myself, feeling as though the air had been sucked out from my lungs.

‘How long does she have?’ Asked my Dad tentatively.

Silence.

‘Um…I think there must be a misunderstanding,’ said Dr Rashid.

I sighed and turned to face my Dad.

‘It’s not fatal,’ I said, sounding like someone had said something to insult me.

Feeling somewhat irritated, I dealt with my diagnosis like you might deal with an embarrassing faux par at a dinner party, and brushed it aside.

‘So, what do we do next?’ I asked.

I have always been good at putting on a mask (figuratively and literally is apt these days), and I received a few surprised stares from the medical professionals in the room when I declared that I was going to head straight to work after the appointment. The news hadn’t quite sunk in at this point.

As I sat there while Dr Rashid rattled off different therapies, and their varying side effects, I couldn’t help but think that this was like a twisted sweet shop. On the one hand, the therapies may help me control my condition, which was the sweet part, and on the other hand, I could get flu like symptoms, heart palpitations or liver failure, which was the twisted part. There were a few options, and they all involved me injecting myself a few times per week. Feeling numb like someone had used local anaesthetic on my mind and emotions, I asked if I could have a think about my options and to let them know.

Feeling like a spectral being floating out of the room and down the hallway, I went to hug my parents, and it didn’t register that they were speaking to me. I attempted a weak smile, and I somehow drove to work.