I HAVE MULTIPLE SCLEROSIS.……There I’ve said it. Not ME….MS. Believe me if I had a pound for every time one of my acquaintances or old pals asked me if I had ME or MS I could easily afford a crystal encrusted eye patch, but hopefully I wont ever need one again (chances are you have no idea why I would require one anyway, and its not because I love Madonna…. You just need to be educated a little on this weird disease, and hopefully that’s where my blog will come in handy)
I have been happy enough for the last 7 years since my diagnosis of this autoimmune disorder to just keep this bombshell (oh please) mainly to myself. Almost forgetting sometimes (whilst swimming underwater or on a fairground ride…..yep this too will all make sense later) that I have a chronic degenerative disease lurking dormant somewhere within my squidgy mum of three’s body. But as its world MS day and the theme is INVISIBILITY I thought I would add my story into the varied mix of personal accounts of what its like to live with an illness like MS.
I look healthy (I am) & happy (I am) and if you were to see me in the supermarket or walking my dogs you wouldn’t be able to see or sense the multiple array of sensory issues that are happening whilst I’m carrying out these day to day activities……Because they are invisible.
Lets go way back to as my kids would say the Victorian era…..Or 2007. I was 30 years old, pregnant with my third son and things just didn’t feel right. After his birth I really didn’t feel right which is normal you might say, but having two previous babies I just felt….WEIRD. This is where all the fun, games and bad times started.
My head felt fuzzy…..New baby, lack of sleep?
My vision was really weird all the time?……More lack of sleep?
My hearing was muggy……Extreme lack of sleep?
The funny thing was that it wasn’t my beautiful baby that was keeping me awake at night but purely my Anxiety. Anxiety about all these strange things that were happening to me that had sent me into total meltdown (That’s another blog entirely) Anxiety can cause all of the above symptoms too, so I was caught in an everlasting loop of hell (I will call it that because it simply is just that). …symptom – anxiety – symptom.
I could have reserved my own seat at the doctors surgery as I was there most weeks. Why do I feel so weird & dizzy? Why is my eyesight all disjointed????? PLEASE SOMEBODY TELL ME WHAT IS WRONG! I knew they were getting fed up with me as they didn’t have the answers and all they could do was to dish out nasal sprays, eye drops and anti depressants…yep that should cover it.
I was sent to ENT (Ear Nose & Throat) too many times to remember and had scans of my inner ears. Specsavers too were regular “friends” they must hold a full on photo album there of the back of my eyes! Nobody could give me any answers. I even had laser surgery on my eyes to correct my milk bottle top shitty eyesight and astigmatism. This was going to be the miracle cure…I was so excited! Unfortunately it did not get rid of my WEIRD vision (but it did rid me off my contact lenses and glasses). Cue lots more Anxiety…..I thought I was literally going mad.
I paid privately for a brain MRI (brain scan in a tunnel…….not for the claustrophobic)
RESULT = NORMAL + NO ANSWER = GUTTED
This limbo land carried on for another 5 years, I still felt odd but I actually just got used to it as I had no choice. My children needed a happy mother, and actually as life was so busy I didn’t get a great deal of time to wallow and check in on my symptoms all of the time. I functioned, and functioned well with fab friends and family there to support me.
That was until our holiday to Florida in April 2011. Two weeks of intense heat and enough walking to shag your hip joints up for life. Cue walking like a racewalker but in super slow motion (go on google that) was a very tiring affair…..Although a magical, fantastical affair. A few days after coming home my feet started to feel strange, most probably swollen from the flight right? A few more days later they were numb, a numbness that soon spread up to my mid calf. I couldn’t feel heat, if anything touched my skin I couldn’t feel that either and getting into a hot bath felt weirder than weird. I could have stuck enough pins into them to look like a human pin cushion and still not felt a thing.
The Doctor had no idea or so I thought and asked me how my bowels were (why?) and as they were fine sent me away telling me to come back if the numbness was still there after a fortnight. Google became my best friend or foe from that moment on. Leg numbness…..Could be MS, but could also be other things. In the short time I had nearly googled myself to death the numbness had disappeared. I was left with a buzzing/tingling feeling in my legs when I walked too far (this eventually disappeared altogether) I was so relieved, and forgot all about it.
Things went back to relative normality. I was in a good place, still weird but good, and in the following January my husband jetted off to the furthest place he possibly could to see his mate in Australia. I remember my right eye had started to water and feel like there was something in it for no reason. I just thought it was the windy weather at first, and as my vision in that eye started to mist up over the next few days I was convinced that I had dry eye syndrome and booked myself in to see my old pals at Specsavers.
By the time I got there I could not see out of that eye, and there was pain every time I moved it too. I could not see the car lights of oncoming traffic coming towards me out of that eye (I was not driving you will be happy to know) If you had shone a massive torch in my face I would not have been able to see the light out of that eye! Also by this point I had adopted an unhealthy and rather stupid looking obsession with covering the left eye to see just how much I couldn’t see, then covering the other eye, over and over again.
When I was asked whether I could see the letters on the board I could just about make out the massive A at the top line….Just. I was blind…..not like a blackness but a thick grey misty haze. Back of the eye….checked, nothing. Verdict…..”hmm, your eye does look a tiny bit dry, I will give you some drops……..Goodbye”…What!! How can a little dryness cause light blindness?……I did not step foot in Specsavers for a very long time after that.
Back to the Doctors I go, and straight up to Ophthalmology at the N & N I was sent.
“Rebecca can you see that red box over there”
“can you cover your bad eye and tell me what colour you see?”
“can you tell me what colour you see out of your right eye?”
“dull, washed out Red”
“Rebecca I think your optic nerve is playing up”
WTAF is an optic nerve? Why is mine misbehaving? Oh hello. My old friend Anxiety had come to pay me a visit.
This is by no means a pity party with me as the hostess (with the mostess – symptoms) Although I was shocked and confused, I felt like I was getting closer to an answer, which was a bonus of sorts. I had a few more visual field tests (that I hate) and was sent in to see the Neuro Eye guy. Mr Eke mentioned that my Optic Nerve was inflamed and that is why my vision was blurred. I had OPTIC NEURITIS. Was told that the swelling would go down over the next few weeks or even months or a year, (Eeeke indeed) and I would then get to know just how much vision I would get back….. Could be up to nearly all or I could be left with permanent damage….Only time would tell…..Shit.
I was referred to Neurology (The Brain People) as there was a possibility that I could be having an MS relapse.
My mum had to move in to help me out with the 3 kiddies. Hubby was in Australia and not only did I have Optic Neuritis my charming brain had decided to chuck in a decent helping of double vision too along with a banging headache, eye pain and an electric shock type feeling every time I bent my head forward, this is called Lhermitte’s sign ……….How delightful. This is where the eye patch comes in. If you have double vision in one eye then wearing an eye patch over that eye will resolve said problem and you will look like a bad ass pirate.
I remember laying on the sofa with my glasses on, eye patch on, my electric neck, dosed up on pain killers because the eye pain had got much worst. Probably a glass of something in hand to calm me down a bit, wide-eyed with a permanent blank stare looking like the shorter, uglier, more anxious version of Elle Driver from Kill Bill….Looking a sight for sore eyes (literally) and feeling really really scared.
Would I ever get my vision back? When would it come back? Why is this happening? I had googled that total bed rest if possible helped the optic nerve get back to normal quicker. So there I stayed for what seemed like an eternity but which was in fact just a little over a week, and my eyesight slowly started to return. After 3 weeks my vision was 90% back. That felt awesome.
I eventually saw the Neurologist who was really nice and kind, but who also told me its likely I had MS, but they couldn’t rule out a brain tumour until I had had a brain & spine MRI. This would take over an hour in one of those claustrophobic tunnels. The brain tumour blow wasn’t a shock as Ms Google here had already read all about this being a possibility. I was dealing with things ok, its almost like an acceptance. You cant change anything so you just have to go with it. Anyway with the MRI done it was another waiting game to see what my silly brain was playing at, what did I have.
When a week or so later I was eventually told that I had Multiple Sclerosis, with lesions in my brain and on my spinal cord I actually cried with refief, my mum & husband did too. My anxiety went for good on that day….It has never been back. Limbo land no more, I had an answer.
Many people react in the same way as this, as from first symptoms to diagnosis can usually take years and years. I could deal with this diagnosis and would do whatever it took to fight it head on. I was told that I qualified for injectable medication called DMT’s (Disease-modifying therapies) to suppress my crazy immune system. I declined. Many people do not like to research about the ailments or diseases they have, not knowing is a way of dealing with it for them and that’s cool, but not for me. I really have a NEED to know what is going on in my body, and if I know then I can research the best way to help myself. And hell yeah that is what I did.
Telling family and friends was a mixed bag. Some took cues from me, and as I wasn’t upset they weren’t either or didn’t show it…..Which worked well with me. Others were quite emotional and one family member was so upset that I had to console them! I definitely prefer people to not feel sorry for me…..I’m good.
So what is MS?
“Multiple sclerosis (MS) is a condition that affects your brain and spinal cord. In MS, the coating that protects your nerves (myelin) is damaged. This causes a range of symptoms like blurred vision and problems with how we move think and feel.”
Basically your crazy body attacks itself.
If you want to google MS I have saved you the bother, just click HERE If you haven’t already.
I saw some super scary videos of old people screaming in pain rolling on the floor, lots of old people in wheelchairs, lots of old people bed bound in hospital and as I’m only human this freaked the shit out of me! But I also came across videos full of positive young people documenting their relapses and one person in particular was a complete godsend to me at this fragile time AWKWARD BITCH by MARLO DONATO A young beautiful woman working in the fashion industry with MS who also wrote a book. This I devoured in a day. Not an old, bed bound person in pain. There was hope.
Today there are so many people blogging about their journey and lots are young and vibrant and hopeful like me (not young and vibrant just hopeful!). Most people with MS are diagnosed in their 20’s to 30’s, it is by no means an old persons illness or a death sentence like I thought…..Even if you end up in a wheelchair, who knows that may well be me one day.
I have Relapsing Remitting MS which means that I may have a relapse (like my legs or eye) that could last for days, weeks or even months and then get slowly better until the next one. I have been lucky that my last major relapse was my optic neuritis in 2012. I still have small niggly things happening from time to time, but nothing substantial. This I am sure has not been down to being lucky but that I really have taken this MS Bully Bull by the horns and changed my lifestyle since then in a few easy steps.
NO DAIRY – An old friend of mines mum was diagnosed with an aggressive form of breast cancer, was cured, came back, she then totally gave up dairy (an inflammatory food) Cancer disappeared….enough said……No dairy for me (although the odd malteser cant be bad?)
NO GLUTEN – Inflammatory food…..Simple.
VIT D3 – In large doses every day……Low levels of this important vitamin are a possible link in developing MS.
LDN – 3ml every day for the rest of my life…… I swear it keeps my relapses at bay.
LDN or Low Dose Naltrexone has been my liquid gold, my magical medicine, my hope. I found out about this fabulous stuff through LDN RESEARCH TRUST literally weeks after my diagnosis and was taking it a few weeks after that. For me it has no side effects, but tastes grim and comes in a pretty pink colour so we will take that.
What is LDN (Low Dose Naltrexone)?
“Naltrexone is in a class of drug known as an opiate antagonists. Its normal use is in treating addiction to opiate drugs such as heroin or morphine. The dose used for this purpose is usually between 50 and 300mg daily.”
I take 3ml so I’m not a druggie! If you want to find out a bit more about my pink potion then click on link above…….People take it for MS but also for Crohns, Rheumatoid Arthritis, many other autoimmune illnesses and even Cancer.
Today I feel really well, look really well and act like a well person, but I very much know I have MS. I can feel it bubbling away like some dormant volcano waiting to erupt.
My eyesight is wonky, gets a bit misty when I overheat (Uhthoff’s phenomenon) and generally pisses me off when I think about it too much.
My head feels like I have a big ball of cotton wool for a brain and my BRAIN FOG means my memory, name recall and spelling capabilities are shot to bits…..Sorry co-workers I have an excuse for being an incompetent dizzy Doris.
My head also feels like I’m wearing a fishbowl, deep sea diver style whilst ever so slightly being spun around.
My head is fried.
Fatigue……Much worst than being tired.
My ears feel weird……Cant explain it and nobody else can so must be the MS.
It feels like I have a hangover every morning when I wake up, when I haven’t….Unfair.
I get a tightness around my rib cage sometimes if I’m overly tired (MS-hug)
I get tingling in my legs which feels like a rushing sensation if I get too tired or hot…..Not as often now but this was an everyday thing.
I’m clumsy, loose my balance sometimes and bounce off walls……But I’m Ok at Yoga….Weird!
I used to be able to crack open a jar of gherkins easily with two fingers….Not anymore.
Oh and I have a weak bladder which is common in MS, but this could also be because I have given birth to three large babies…..and NO I do not wear TENA!
Yes all of the above get me down, but not that often. I sometimes forget I even have MS. I can go out dancing, walk my dogs, swim, do Yoga and I manage some HIIT classes each week, I really do push myself physically. I’m not physically disabled, just have a dodgy head.
My Neurologist said at my last appointment that if I can do 2 x HIIT classes a week then he doesn’t need to see me for now……I could have BENIGN MS and my volcanic body is just dormant for now. It could make an appearance and blow at some point….Who knows. I think about what could happen to me and the uncertainty and unpredictability of this neurological disorder and I owe it to myself to do whatever it takes to stay healthy for as long as I can…..Who knows what tomorrow will bring.
Hopefully a nice bottle of Sauvignon and a box of dairy free, gluten free chocolates would be nice X
*** Any grammatical or spelling errors within this blog are because of my MS and not because I’m stupid (my excuse anyway!)