I'm not drunk...wait

How MS stopped this wino in her tracks!

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The Big Gloom

So when I said I would write next week I really meant I would write nearly next year. Sorry about that.  I have had a hell of a year, when I say hell I really mean it.  My physical health has been ok, a few ups and downs, but what has really killed me is my mental health – there you go, I said it, I have mental health issues.  I don’t know if the two are related, mental health and MS, but my neurologist said that 75% of people with MS suffer from some kind of depression or anxiety.  I guess a bunch of lesions on your brain can do that. 

To be honest though, I think I have suffered from anxiety from a very early age, I used to be terrified of anyone close to me dying and refused to sleep on my own because I thought I would stop breathing – I would stay up for hours listening to my heart beat, convinced it was going to stop.  Sorry mum!

However, I had never really experienced the depth of depression I have been experiencing in the last 12 months.   I would like to be able to attribute it to MS but I think I would only be lying to myself.  I guess I have come to a point in my life where I can’t be who I was in my 20’s and I am definitely not who I thought I would be in my 30’s. I am stuck somewhere in between, hating both realities.

I want so many things, love, laughter, joy, health, the list is endless but I can’t seem to find any way of getting there.  I am pretty sure that lying in bed with my cat, dominos pizza and wine is not the answer – but I gave that a really good shot. So, 2014, I need you to be different, and I know I need to be different. If you promise to give me opportunities, I promise to take them with both hands cause these eyes aint got any more tears to cry. 

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Just wanted to let you  know I am still alive and kicking but life has been frantic to say the least. I have had - weddings, a messy break-up, a new job, a new apartment, international guests and unfortunately a relapse.

It’s late now but I promise to write next week.

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Oh the shame

Last week was kind of a mess, I was kind of a mess.  After a great Christmas and New Year I was feeling pretty good, my body was surprisingly symptom free and for the first time in a while I had bounds of energy. 

But then Thursday happened.

At lunch I managed to choke on my water - you know those really good ones where you spit out the water in your mouth, can’t breath for a bit, cough for ages and it isn’t until you sneeze that you can finally get enough oxygen? - yeah, one of those. Well while I writhed around, much to the amusement of Liz, attempting to save my own life I managed to pinch my sciatic nerve. For those of you that have experienced this, you will know how much it sucks. For those of you that haven’t, imagine, if you will, being stabbed in the lower back and then that pain running all the way down the back of your leg and into your foot with every movement. It’s not good.

But unfortunately that is not the bad bit - my actions after this were. I was pissed off, really pissed off, and there were a lot of ‘i don’t deserve this’ and ‘why me?”s running through my head.

So I decided I didn’t want to grin and bear the pain and asked my local GP to prescribe proper pain killers, something that would knock this pain on the head so I wouldn’t have to deal with it - he did. I quickly took the prescribed two pills and called a cab. After about 20 minutes I felt a bit lighter but the pain was still there. I proceeded to get home and drink a wine or two three four, the pain was still there and I was still angry, so I took another pill; this was possibly the dumbest thing I have ever done and scared the shit out of me. 

I started to feel a bit woozy and wanted to go to the toilet, I got up from the couch and all of a sudden everything started to spin; the floor was obviously made of foam. I made it about three paces before I passed out, but fortunately for me I had just enough time to sit down before my head hit the floor boards.

Lucky for me Man Friend was not far away and came swiftly to my rescue, admittedly, not for the first time this year, but it made me fear that this situation could have been a lot worse. No, I didn’t drink a bottle of Vodka, have a few Oxycontin, smoke crack and take some sleeping pills, but I did push my limits, which are already sub standard, way beyond safe levels.

I realised MS is not my get out of jail free card, life is still going to throw some nasty obstacles  and I need to learn to navigate them without sabotaging my health or putting those close to me through unnecessary worry – drowning my sorrows will no longer be my go to solution.  So 2013 will be the year of 'dealing with things' both emotionally (totally not my cup of tea) and physically, so be warned - shit could get hectic.

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It was a Christmas miracle

No, no, not that kind of miracle, I still have MS but it's amazing how a triple bypass and a pesky auto-immune disease can bring a family together - it was 25 years in the making.  And despite being one of only two people under the age of 65 and the only one to retire for an afternoon nap, it was a truly fantastic Christmas - maybe the best ever.

Hope Santa was good to you all and that you have a safe and happy New Year - I feel like 2013 is going to be a good one.

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Hey face, welcome back!

I got my jawline back, it took its time, but it is definitely back in the mix. Steroids do funny things to your body, the first time I had them I was euphoric, euphoric and hungry - I also felt like hunting down a glow stick and a pair of fluffy pants.

The second time I was mostly just feisty, I got into an argument with an angry little man from downstairs who is also on the roids for non-medical reasons, who treats his two dogs like crap and also happened to call me a C bomb - you picked the wrong girl little man, the wrong girl.  

By the third course, although my skin was fantastic, my facial structure was gone. I know it's superficial, but looking like Mrs Potato Head when you feel like shit is really not ideal.

Anyway, five months after my last dose of the steroids I have finally started to feel like me again, on the outside at least. I tried a dress on for my brother's upcoming wedding and for the first time I recognised the person wearing it - it was a great feeling. 

My insides are still a little lagging behind - I am off work today as while attempting to exit my bedroom my body decided it would behave like I have had 11 tequila shots in quick succession - perhaps I will have 5 wines, If I already look drunk why not be drunk? But I am very grateful for small miracles - welcome back cheekbones and hello jawline, please settle in and stay awhile.

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I AM that girl

Last week I had my little cotton socks knocked off by just 7 words, they were powerful and had more of an effect on me than they are really worth.

I walked out of the kitchen at work to realise that I had forgotten my H20, upon returning I was slapped around the ear holes when hearing ‘yeah, she’s that girl with multiple sclerosis’.  Wow, ouch, you got me good.

There was absolutely no malice intent in these words and I think the girl who spoke them may have even been more mortified than I was. However, It made me feel the same way as overhearing ‘she’s that girl that had too much to drink at the Christmas party’*, it made me feel guilty and a bit ashamed, as well as wanting to immediately implode. It also felt like hearing ‘she’s that girl who didn’t realise her skirt was tucked into her undies for hours yesterday’** you know when you think you have totally gotten away with something and then WHACK – reality hits and everybody knows.

Obviously I am writing this all down and sharing it on a public forum so I can’t expect to keep it a secret, and that’s not what I want, but what I do want is for this disease not to be my defining characteristic.  I have tried really hard to make MS my bitch and not the other way round but when I heard those words I really did think – holy shit I am that girl.

So, for the record, yes, I might be that girl, but hopefully I’m much more - see how I am kind of a dart shark?

* Just so we are clear, that was most definitely not me

** Or that – I swear

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Remember that sometimes not getting what you want is a wonderful stroke of luck – Dalai Lama

Just when I was talking Tysabri up she decided it was time to teach me a thing or two about limitations. I have been consumed the last two days by an unheralded level of tiredness, Tysabri made a 300 pound jacket of fatigue and matched it with a lovely pair of grumpy pants and insisted I could not go anywhere without them...anyway, I digress..

This disease has taken a lot away from me, my drivers licence (thank you seizures), any potential career as a po-fessional tightrope walker, but strangely it is has given me more that I could ever have imagined. 

It has enable me to connect with amazing strangers who are sharing their stories with me and finding some solace and a little humour in the words I write.  The response has been overwhelming, my target audience when I started this blog was, mum, manfriend and bestfriend, for it to have resonated with so many MS sufferers winners and a bunch of you ‘regular’ folk has blown my teeny tiny mind.

I still have days, like yesterday, when I am a perfect combination of Eeyore and Sleepy Dwarf , but mostly I have an extra bounce (and sometimes a wobble) in my step and a big giggle in my guts.

As corny as it sounds, it really has made me appreciate every single day I feel great, be way less bitchy when I don’t feel so great and push through the days I feel just ho-hum.

Now, if you’ll excuse me while I find a quiet, dark place that will accommodate my jacket and pants to write deep, dark, poetry.

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Every 28 days

Relax, this post is not going to have anything to do with my lady bits – that one’s to follow.  Every 28 days I receive an infusion of the life giving nectar called Tysabri:

It takes about three hours and apart from the nasty prick of the needle it is pretty much pain free. Honestly, I might be a giant weirdo, but I prefer my monthly infusion to waxing my legs, going to the hairdresser or getting my nails did, mostly because my MS nurse does not find it necessary to talk about his boyfriend endlessly for three hours.

I have been asked why Tysabri is my drug of choice, well the day I was diagnosed went something like this:

Doc: You have Multiple Sclerosis

Me: Oh, ok, I figured. Does that mean I can go home now?

Doc: No, you need to start treatment right away, you'll need to begin Tysabri, this drug is long words... long words... long words... every 28 days

Me: Ok

There have been times in my life when I have not been very good at doing what I was told, pretty much every day from the age of about 3 to 18, but when the guy in the white coat tells me that this business is going to halt the progression of my disease, I do exactly as instructed.

What is this goodness juice I hear you ask? Tysabri is an antibody that is thought to keep my over zealous white blood cells from attacking the healthy coating that surrounds my nerves. Basically, being on this medication should prevent any new damage to my nerves, it can't correct the damage done but can reduce future flare ups.

The side effects are minimal, I had it done this morning and other than feeling a little bit sick in the guts and pretty tired, I should be fighting fit for tomorrow. So, here's cheers to Tysabri, please keep my eyeball seeing, my balance stable and my legs a walkin'.

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I cheated

I cheated real good. I had been so very disciplined leaving fries, burger buns and deep fried delicacies in my wake - and then this happened:

Holy Mother of Cheese Sticks. Forces stronger than any I had known before lead me to demolish far more than my fair share of those deliciously deep fried artichokes, the delightfully crumbed fish and the freshest of white bread I have ever experienced. 

Back to being a caveman, but if a plate such as this ever presents itself again I can safely say it won't stand a chance.

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Oooops

Sometimes I fall over. Sometimes I plow headfirst into the TV cabinet of the rental property we hired in New Zealand. Have I mentioned how much of a catch I am?

Mum would like me to stress that this may have had nothing to do with my MS and everything to do with my innate ability to trip over nothing, personally I am going with MS.

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I wake up in the morning feeling like P Diddy

Well, that’s not entirely true but, I do generally wake up feeling pretty bloody good, I have my breakfast of pills and coffee and I feel a million 842 dollars. It’s not until about 2pm rears its ugly and relentless head that I get tired, and I mean really tired, like two tiny bodybuilders have each latched on to my eyelids and will stop at nothing to see them close.  You know when you see a baby trying so very hard to fight the sleep – well that’s me, I’m just a bit cuter.

I had always assumed the word fatigue was just a fancy way of saying sleepy, hungover or up all night making the sweet, sweet love, because you see I was a ‘regular’ person too once – dying for a coffee at 2pm because that excel spreadsheet ain’t getting any more interesting.  In fact, I do sometimes forget about this MS business and wonder whether it is a lie I told to get out of work that has just gone WAY too far – you know how sometimes you concoct an elaborate tale about the strep throat you got over the weekend just to get out of work on Monday and by Tuesday after telling 18 people about it you almost believe it – just me?

Unfortunately, (like today) things like my hand feeling like it doesn’t fit into my skin or when I have walked more than a mile and I hobble like I am 212 I am quickly brought back to the present.

So please, don’t be surprised (or judgy) if by 2.15pm you have to wipe the dribble off my chin.

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Life is good @ Waiheke Island, New Zealand - "ladies" weekend with Mum.

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Lost in the crowd

I am no longer any good with crowded places, goodbye music festivals, see you later dance floors and 'adios' to running with the bulls. See the thing is, I am quite shit at seeing things, most especially anything located to my right - small children, poles, that wheelie case you're dragging behind you.

As it turns out, peripheral vision is crucial - walking, running and crossing the road all require it. For reasons only a qualified neurologist can explain, my brain has lost the ability to compute more than about 3 moving images at any one time - drop me in the middle of Times Square and I'm done for, I WILL sit on the ground until a handsome NYPD officer provides assistance.

A solution I have considered for my fear of multiple movements is to invest in one of those childrens 'backpacks' that we all know is actually a leash. This will provide me with adequate security, but sorry, you will be wearing it, not me, I have enough to deal with right now.

My brain Doc assures me that my spatial awareness will improve over time, but for right now can we agree that in my company, no balls will be thrown, break-dancing will be kept to a minimum, and if you notice me standing alone in a crowd, you'll come get me?

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Coming out.

Up until last weekend only my family, closest friends and a few colleagues were aware of my diagnosis (apart from those observant folks on Facebook who noticed that I had ‘liked’ every MS page known to man).  I must say I am not really good at telling people about my MS, I usually say something inappropriate like ‘Oh, yeah, I've been ok, I got the Multiple Sclerosis, but hey, at least I qualify for the Paralympics now, right?’ followed by an uncomfortable chuckle and a very concerned look. 

It turns out that I have a phobia, a phobia of sad eyes, I am not sure if there is an official word for it but if Zemmiphobia is real then I think there should be, so instead I attempt to inject some humour to help people realise I am still the same, sarcastic, do anything for a giggle, me. 

So, why now, have I decided to come out of the chronic illness closet?  Hopefully, to avoid some ‘sad eyes’, but mostly to show the lighter side of something that can be uncomfortable and unpleasant. It is also an illness that unfortunately not a lot of people know about (including me 6 months, three days and two hours ago – not that I’m counting) – I have, on more than one occasion been asked if it’s  contagious…it’s not, we can totally spoon.   So with any luck I can remove some of the mystery (I make it sound sexy I know) and help anyone newly, old-ly, maybe-ly diagnosed.

Also, a lot of my friends were worried that they had not seen any tears, any anger or fear and were concerned that at any moment I was surely going to lose my shit. So here it is, there will be shit lost, there will be tears and fears, but mostly I hope there will be laughs.

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All Haleo the Paleo

  As part of operation ‘getting better not worse’ I have been inspired by my wonderful work wife Liz (she is even more amazing, hilarious and gorgeous in the flesh) to embark on a Paleo diet.  When I heard that I could eat all the bacon my heart desired I was sold – ‘would you like bacon on your broccoli?’ ‘why yes I would’. 

I have never really been on a diet before, sure I have set myself challenges, but I am ashamed to say that they are more like – can I eat this entire McDonalds family meal in one sitting? FYI I can. However after the events of this year and a few steroid pounds later I decided it was time to pull out the proverbial finger and get serious.    

I am extremely lucky that I do not have even the slightest sweet tooth, however, this tooth has been replaced by an ever ravenous carbohydrate/cheese/potato tooth .   I am happiest eating bread with a side of bread with a liberal helping of bread.  So to say eliminating all the carby, cheesy, chippy wonderfulness from my life has been hard, is a massive understatement.  I see someone with a sandwich and want to take them down like a women possessed, I want to roll around in the sandwich and then make a suit out of it.

What appealed to me most about this diet (god I hate that word but I can’t claim this to be a lifestyle change as cheese and I need to be together again sometime) is that there is no portion control. Portion control is not how I roll, if there is a plate it must be filled and cleaned, no potato left standing. 

I am not exactly an A+ caveman. There are a few things I can’t live without, wine obviously (which is full of sugar – who knew?) and a teeny tiny bit of milk in my morning coffee…and afternoon coffee, ok all my coffees, but despite that I think I am doing pretty well.

Have I seen any results? Difficult to say as I don’t own scales and most of my pants are stretchy (refer previous post). However I do feel like I have more energy and am damn pleased with myself that I have not accosted the nearest person with a double pepperoni pizza.

Lastly, I know what you're thinking, I should totally photograph food for a living right?

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When you don't look disabled.

I know I said that this blog would not be exclusively about MS, but then I realised that I have quite a lot to say on the subject so please stay with me.

This morning on the tram to work I was berated by a women who I had not realised was pregnant. She demanded my seat while making sure that everyone on the tram knew how much of an ass I was.

Of course I stood up, apologised and said nothing more, only fumed internally after her 7am public humiliation.  Part of me wanted to say -

"Firstly, I didn't want to assume you were pregnant and insult you by offering you my seat as sweetheart I have had way bigger burger babies than that"

"And secondly, I have multiple sclerosis, that shit's for life, excuse me if I need to sit down, and if I ever did ask for a seat I would not be a complete dick about it"

This led me to think, how do you, when you don't look like you have a disability, convey that you do in fact have a disability and that you need that seat.  I never like to be the center of attention and would not raise my voice (on public transport) or for that matter ask anyone, young, old, male or female to give up their seat for me. But there have been times when I have had to get off halfway to sit at the tram stop as my legs hurt too much.

My sister in law suggested a stowaway cane, which I admit is a great idea, but the people at my stop might be on to me when I suddenly rock up with a bedazzled walking aid.

Another suggestion was some kind of snap on high visibility vest that clearly states to others that I am the disabled and require a seat - not my style, but equally brilliant.

So short of throwing a hissy fit, carrying a concealed cane or purchasing the below tee-shirt, I have settled with grabbing a seat when I can and grinning and bearing it when I can't.

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What is Multiple Sclerosis you ask?

  I would like to begin by stressing that by no means am I a qualified physician, in fact I had to look up the spelling of the word physician, however I will give you my understanding of this mostly (for me anyway) invisible disease.

Multiple Sclerosis - meaning multiple scars, is a chronic disease, primarily affecting the nervous system. For reasons unknown (other than they hate my guts) white blood cells attack the covering (myelin sheath) which surrounds the nerve, the damage this causes is called demyelination. Healthy nerves become exposed when demyelination occurs, causing abnormal or mixed messages to be sent to various parts of the body.

The best explanation I received when I gave the doctor confused face was 'your white blood cells are a mouse, the myelin sheath is like the protective coating on your telephone cable, mouse eats coating, telephone calls are intermittently interrupted’, right, right, I see now.   

The type of MS I have is remitting relapsing, meaning that symptoms appear then lesson somewhat with treatment (steroids) or naturally over time. Unfortunately, each time you have a relapse in the same area, scar tissue develops around the nerve and permanently interrupts the transference of messages from the spinal cord and optic nerves to the brain.

So, what does this mean for me? Excellent question. My symptoms vary from day to day, but the biggest thing is my loss of vision. As someone who has always had 20/20 vision, it’s very strange to not really be able to see anything out of one eyeball. Glasses won’t fix the problem as the nerve behind the eye is too damaged to transmit the message to my brain.

I also have numbness in my hands and left foot, random tingles (not the good ones) in my left leg and face when I exert myself too much and pain that I can only compare to tres bad growing pains in my legs from time to time. Combine this with loss of balance and special awareness you can triple my natural uncoordinatedness (not a word, I know, what are you going to do about it?).

Maybe I was naïve, but 7 months ago my image of Multiple Sclerosis was of someone in a wheelchair, that was about it. Today, I know that sometimes it sucks a lot and that sometimes I can manage it reasonably well.  I know I am extremely grateful that I live in a country where I have not had to pay a cent for any of the care or ongoing potentially lifelong treatment I will require.

Ok, I think I just got a little bit inspirational poster, so I will leave it there.  Feel free to ask me any probing questions.