Leave a comment

Sky’s the limit: Skydiving from a MS perspective

7 December 2013

Skydive Cape Town

DCIM100GOPRO

Finally! After announcing over 2 months ago that I was going to skydive as part of recognising my 2 year anniversary of a MS diagnosis, it finally happened and we landed safely. With a loss of physical ability, there was no time like the present to take the plunge.

DCIM100GOPROWe had to postpone and wait out the long wet Cape Town winter before the weather was jumping ready. But it was totally worth the wait.

Situated on the idyllic west cost, we had a view of the land, the ocean, the mountains, The Mountain (Table Mountain) and the coastline. I can’t think of more beautiful place to make a dream come true.

DCIM100GOPROI have spent a lifetime talking of this experience. The diagnosis was a swift kick in the pants to get items checked off the list. I must say, even though I am feeling much stronger these days, it was an exhausting experience. A combination of the physicality of it, together with the adrenalin rush really took it out of me. But I really just had to be fitted, clipped in and hold on tight and the very patient and talented instructors did the rest.

To be honest, my biggest concern was the landing. You need to lift your legs up and some land upright and trot along with the instructor until they realise they are safe on solid ground. Luckily, we landed legs up and our bums in the soft sand… much easier.

The experience will stay with me a lifetime. I’m so glad I have the proof of photo’s to remind me of the absolute glee of plummeting to the earth from 9000 ft. Exhilarating!

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPROI wonder what is next? I have to take certain things into consideration… but a capable and trusting instructor can do the work for me. Not to mention a supportive, loving and patient partner… who’ is just as excited!

DCIM100GOPRO

Advertisements
3 Comments

The Game

Hockey+Champions+Trophy+Australia+v+Germany+_P5MA_x9JnTlI used to play a lot of sport. Some may say I was quite competitive. Having MS is similar to that feeling you get when you lose an important game. The loss is coupled with anger, criticism and sadness. I am currently reading a book “The Secret Olympian”, it’s small extracts on Olympians experiences at the Olympics without the media hype, strategic marketing and shining lights.

The biggest theme that stands out to me is the mentality and the dedication the athletes have to their sport. And it dawned on me… being diagnosed with MS feels just like losing a big match. I remember how it felt. You prepare physically and mentally you train for the moment and focus on the results you expect. When you lose, you feel drained, low self esteem, self critical, you analyse what you should or shouldn’t have done. With MS I feel the same. What did I do in the lead up to this event that put me in this position. Although there is no evidence that you can bring MS on yourself, I can’t help but wonder if I did something to cause this.

But the big difference between having big match temperament and MS is, if you lose a game; you can generally pinpoint the error and rectify it next time round. Acknowledge weaknesses and practice until they are fixed. With MS, I will probably never be able to know exactly what caused this and I must now deal the cards I have been dealt. I can accept I have MS but no amount of practice will undo this condition.

There is an argument on what makes a worldclass athlete. One of the recipes is a combination of genetics, training and luck. Is this the same recipe for MS?

There is no genetic link for MS. As in, it is not passed down through the bloodline. Genetic studies are forever trying to pinpoint the weak strand that causes the body to attack itself. Progress in the field of genetics has been outstanding in the last two decades with highly improved methods and cheaper tests. These advances have in turn led to a greater understanding of the genetic component of MS. This trend is expected to continue, raising the possibility of discovering key mechanisms implicated in the disease.

No amount to training can prepare you for a diagnosis of an incurable disease. Especially a potentially debilitating one. I attended a talk last week by Brett Archibald who fell overboard and was adrift at sea for 27 hours. There has also recently been an increased awareness on Motor Neuron Disease. Both subjects talk on the human will to survive, to keep fighting, to stay “afloat” against all odds. I find it interesting to hear these stories of challenge and hope… because I go through this everyday.

Some athletes believe their success is down to luck. When they are on the starting line, or in the middle of the field, everyone should be in their best physical condition. They have all trained as much as they can. They have all prepared mentally to win. But something on the day was on their side and they managed to pull through with a win. Is having MS just bad luck? Is there anything I could have done to avoid this diagnosis?

I find it interesting that research says many MS’ers were previously very active people. I myself used to be an athlete. I excelled at school, continued into my 20’s and spent many hours in the gym pushing myself. I played 1st team, provincial and premier league but in order to do this I was driven, ambitious, dedicated and a lot of blood sweat and tears was spilled to achieve my goals. That is why coping with MS is such a mystery. I can no longer compete, push myself, sweat it out or work hard. I have had to bring a balance into my life that I didn’t have before. Everything is done with a sense of mediocrity. Something that is taking me a while to accept. It is difficult to learn this behaviour after years (possibly a life time) of drive, ambition and hard work.

CHS-swimmer-wins-two-eventsThere is a chapter in this book about how athletes feel when the Olympics is finished. Many ask “what now?” “What am going to do with the rest of my life?” All the training they did before, every event they worked towards no longer applies in their everyday “normal” lives. It’s this feeling of being lost and directionless. The lack of purpose that these athletes feel is what I feel. MS has presented a whole new game for me. One I was not prepared for.

Thankfully, there are lifelines out there to support me in my fight. Knowledgeable doctors and nurses, MS societies and charities, endless resources on the internet, alternative therapies and diets.

Maybe I need to look at MS like an athlete. There are certain things I have to do. Sometimes it will be hard, boring, gruelling and maybe even fun. But I must be disciplined. This is a mentality I can relate to.

MS was a major set back. I am taken a long time to rehabilitate. Maybe I will never be competing on the level I used to, I may not even attempt a 100m dash but I need to find a new playing field. Somewhere I will excel, achieve and have fun again.

2 Comments

MS SUCKS!

Image

It’s World MS day 2013. The purpose of the day is to create awareness and spread the word of this disabling disease that affects millions worldwide. Forgive me but I don’t feel very celebratory.

I feel sad. I hate that I have MS. I remember when I started blogging and I said I was tired of the “poor me” style blogs and articles online that were just depressing. But fact of the matter, having MS is depressing.

Rationally and practically, I know what I should be thinking and how I should be acting. I will manage this, I have wonderful people around me to help me in every situation, I will be able to find work in some form… but right now the overwhelming feeling is hopelessness. What am I going to do now? What am I going to do in the future? What is my purpose? It’s just how I feel. I can’t seem to shake it.

I am not advocating financial reward to measure happiness but that is how I was before diagnosis. Now, that nice house, holidays and pretty things just seem out of reach. Together with money worries (which, despite my best efforts, are always there) my biggest bugbear is “purpose”. Most people are defined by their work. It’s what they do. In social situations, people always ask “what do you do”? My honest answer is “nothing”, then a lengthy explanation of having MS ensues. I really don’t mind explaining that I have MS. In fact, I enjoy explaining to people what it is. Honestly, it is their reaction to the “nothing” I find most amusing. I have come to resent that I feel like I don’t have a purpose. Frustrated, bored and embarrassed.

Image

Do I need a new skill set? Do I need to reassess how people make money? I can no longer get my hands dirty and bring home the pay cheque with pure blood, sweat and tears (and a smidgen of brains). But what skills do I need. I already have qualification and skills. But how do I transform them into a career? I have spent almost 2 years not pushing myself, minimising stress, eating well and refocusing, but these don’t seem to fit into the modern world. I feel like I have missed the boat. There are 1000 of minions out there willing to write, design, market, assist and advise and they already have a hefty head start in experience. I somehow need to change my mindset. It is holding me back. Fear is drowning me in possibilities that I am not seeing the opportunities.

The future looks like a big scary monster. It is trying its best to frighten me and it is succeeding. I still believe in the motto of “be brave” and I want to be. How am I going to take charge of this situation? MS has consumed me. I dreaded this happening, but when you have daily reminders, it’s hard to forget and ignore.

Sometimes, you just need to moan, be mad, frightened and sad. MS is a bugger. I know it will all be OK I the end.

Image

Leave a comment

Thank you for the music

Hell Yes MusicalsSome times (ok most of the time) I wish my life were a musical. What prompted this confession is that I was watching “Les Miserables” the other day (the new adaptation with Hugh Jackman and Anne Hathaway). It is clichéd but songs have a perfect way for expressing emotions. With a diagnosis of an incurable disease, there are so many emotions! Sometimes there is so much frustration and anger, I just want to belt out  “I dreamed a dream”.

I had a dream my life would be
So different from this hell I’m living
So different now from what it seemed
Now life has killed the dream I dreamed.

With the risk of sounding like Susan Boyle, this is not what I had planned. I didn’t picture my life to be like this.  I had plans, dreams and ambitions and now it seems these will be a lot harder to achieve

I love a flash mob. I often wish the world would just break out in song, and people around would take part in the choreographed routine. Don’t try denying that you haven’t sung at the top of your lungs whilst driving, feeling like this song was meant for you and no one else is listening (or seeing).

My favourite flash mob video: T mobile Welcome Back

I embrace my inner gay man and confess I love musicals! From the classics of Andrew Lloyd Weber to the adaptations and compilations of Hairspray, Chicago, Footloose, Little shop of horrors and Rock horror picture show. Even the made for teenager drama’s of Glee and High School Musical and the Disney films get my feet tapping. I can’t help it. I am a terrible singer. I can no longer rip up the dance floor or take those swing classes I always planned. I love the singing, the dancing and the raw emotions. There is no guessing; emotions come across thick and fast.

I recently stumbled upon a community website (Shift.ms) for MS sufferers and one of the posts was “what is you MS song”? Most of the threads were loaded with pumped up, get-up-and-go, motivating and high-energy songs. People don’t want to be held back by MS. I was listening to a radio show this morning with ambassadors and advocates for Multiple Sclerosis South Africa (MSSA) and amongst the very passionate and real explanations and advice, the running theme was “Don’t be defeated”. A bit like the  “It gets better “ campaign; don’t let MS bully you into submission.

Trying to stay positive, to not feel overwhelmed and not let the disease dominate you is exhausting. But the message was to keep fighting. Chumbawamba said it:

“I get knocked down
But I get up again
You’re never gonna keep me down”

I constantly find music a very powerful medium. When you are in love, suddenly Bruno Mars makes sense. When you are a teenager full of angst, Skunk Anansie was my poison, and when I was training at the gym, I had my soundtrack to make me run fast, push harder, sweat more! My best friend is a DJ. She once told me how she loves to control the emotions of the crowd and how the music makes people feel. Whether you listen to the lyrics or it’s the melody that strikes a chord in your soul, the art of being able to express your emotions in words and with rhythm can help you in all occasions. I mean, how could you say no to this marriage proposal?

With the global hit of Mama Mia and the somewhat love-them-or-loath-them Spice Girl’s stage production of “Girl Power” to the opening of the ABBA museum all that is left to say is…Thank you for the music.

thank you for the music

 

1 Comment

Wanderlust vs Wanderless

wanderlust

Something that is really plaguing me at the moment is the difficulty I might (make that probably will) face in making future travel arrangements.

  • What about my medication?
  • Will long distance air travel be a problem?
  • Will the heat and humidity in areas affect me?
  • What do I do if I relapse whilst away from home?
  • How can I get the most out of visiting new places?
  • I am afraid of the rush of crowds.
  • I can’t even carry my own bag.
  • No more backpacking for me.
  • I can’t wander, investigate and discover new places on foot.

Travel gives me so much joy and not something I am not wiling to give up.

On a smaller scale, a couple of weekends ago, I attended the Utopia music festival in the Western Cape, South Africa. I was a little nervous and apprehensive on how the experience would make me feel physically and how exhausting I would find trekking the fields and watch the entertainment. With a diagnosis of MS, past experience is nothing to go by. In the past I attended quite a few music festivals in the UK and they are hard work. They tend to be rather tiring and generally require you a couple of days to recover after the experience. With the rain, the mass of people, the national past time of drinking and the “sleeping” in tents, I was not feeling up to this type of social activity. Don’t get me wrong, I had the best time at those festivals, I saw amazing things and am so glad I got to experience them, but I have accepted life is different for me now and these activities are no longer on my agenda.

However, the weekend at Utopia Festival was blissful because, along with my ever loving and supportive partner who held my hand over the uneven fields, we stayed off-site at a B+B ensuring a comfortable afternoon nap and a good nights sleep. We could take warm showers and brought our own food so we didn’t have to survive on the festival food.

At the festival, we sat in the shade, went for small wanders and just generally relaxed and enjoyed the performances. There were plenty of people there who were giving it horns and enjoying the festival fun times, but I was so glad not to be one of them… anymore.

Moderation and necessary measures of management is key in this whole experience. I am generally quite adamant in not taking part in outdoor activities because I have convinced myself that I can no longer do them, the MS has limited my ability to participate. What this weekend really awakened me to was that, with the necessary managements steps, I can still do the things I love, be part of the party and socialise without fear.

There are plenty resources online that offer great advice on how to travel with MS. One of my favourite and most motivating is Active MSers. Over the past couple of years I have allowed my diagnosis to define me, limit me and scare me into not taking chances out of fear. Mostly this fear is how I will feel. Not physically, but emotionally. Not being able to participate frustrates me, angers me, and upsets me. Learning a new set of limitations that are constantly changing is exhausting. But I am learning everyday on how to manage my expectations of myself, moderate my activities and put steps in place that will ensure I can participate.

I also am learning not to push myself, listen very carefully to my body and to be honest with friends and family about how I am feeling to help them understand and allow them to assist me.

I have lived overseas for a number of years and have very dear friends that I miss terribly and cannot contemplate not being able to visit them. Also I am not willing to accept that I cannot explore all the places I have longed to see. I still want to see the Amazon, the Northern lights, historic European cities, the vastness of the Far East and the beauty of the islands. But I must accept that I can no longer swing on my backpack and say “see ya later”.

But in all instances, I must just be brave and remember the good times.

fest fun

1 Comment

Things that go bump in the night

Generally, I am the only thing that goes bump in the night, when I make my regular midnight wobble to the bathroom, impacting with a few corner walls along the way.

In honour of Halloween, I thought I would change the tone of my blog for today and talk about the things that scare me. Not the ghouls and goblins of your nightmares but the very real possibilities of what gives me nightmares. The unknowing of MS. The possibilities of what could be.

I try not to dwell on the down side and try keep a positive mind set but truth be told these fears are with me every day and the worst thing is I am constantly reminded of them in my everyday struggles.

First of all, lets dissect the notion of fear.

fear/fi(ə)r/

Noun:
An unpleasant emotion caused by the belief that someone or something is dangerous, likely to cause pain, or a threat.
Verb:
Be afraid of (someone or something) as likely to be dangerous, painful, or threatening: “farmers fear that they will lose business”.

I have read that fear is an unfounded notion in that it is not a current reality and therefore does not exist and therefore you should not be afraid of what is not real. I understand this and tell myself this everyday. Yes ,one day I may not be able to walk, see properly or dress myself but that isn’t real now and therefore should not worry about it and waste valuable time and energy thinking about it. But this is easier said than done.

Fear is generally irrational – why are you so scared of that teeny tiny spider? But it is a deep embedded psyche that is a belief that someone or something is dangerous. And it takes one hell of an argument to convince you other wise!

I have been handed the MS badge and these are the things that scare me about being part of this club:

  • Not being able to walk or the loss of use of any limb – I have already had to with the loss if not being able to run and play the sports I once loved.
  • Not being able to look after myself – a complete loss of independence
  • Loosing my sight or having it severely impaired
  • Loosing bladder/bowl control – I never want to wear adult diapers
  • Loosing any cognitive ability therefore resulting in the inability to work or even converse
  • Not being able to hold down a full time job again

As has been said over and over again, Multiple Sclerosis follows a varied and unpredictable course. In many people, the disease starts with a single symptom, followed by months or even years without any progression of symptoms. In others, the symptoms become worse within weeks or months.

What I find most frustrating about having MS is because it is such an individual disease, it is not helpful to compare yourself with other people who have MS. So it is difficult to prepare for the future. You have no idea what to expect.

It is important to understand that although a wide range of symptoms can occur, a given individual may experience only some of the symptoms and never have others. Some symptoms may occur once, resolve, and never return.

So my fear is embedded in the unknown. I suppose all our futures are unpredictable. But having an incurable disease puts a different spin on things.

I really try live I the moment. Because, right now, today, is a good day. I have no pain, I can see, walking is not too much of a battle and I get to take my daily afternoon nap to recharge. In essence, I actually have nothing to worry about.

I recently fell in love and am in a very loving and supportive relationship with a wonderful, strong, gorgeous and incredibly smart woman. I can honestly say that out of all the treatments I have tried, love is the best medicine for all my ailments and fears.

Going into the relationship was frightening in itself. I had to overcome the notion that someone else could cope with my MS. I didn’t have to fight this alone. Life can be “normal” again and MS is only a part of me and not who I am. She is incredibly understanding but it is important for me to very honest and open with her.

I have tried to not let the MS define me but it is difficult to not be completely preoccupied but the disease, its limitations and the constant reminders. But my partner has said time and again, she does not think of me as a sick person. People meet me and I am often met with the response “but you don’t look sick”. These are small but very necessary motivations I need to keep fighting and keep positive and not let my fears get the better of me.

This is a bit cheesy but I want to end off with a appropriate quote:

You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.’
Eleanor Roosevelt

I look MS in the face everyday. I take everyday as it comes .I don’t want to be afraid anymore. I must be brave.

Leave a comment

Healthy is the new Skinny

I read a great blog this morning and it got my blogging juices flowing and I needed to share.

The blog I am referring to is called Choosing Raw and it is a post I receive daily (first thing I read when I wake up) and it is crammed full of raw and vegan dishes, inspirational stories and general interesting facts and ideas regarding a healthy eating lifestyle.

Here is the link to the specific blog in question: Body Love in the Face of Illness

It really hit home my thoughts regarding food, eating and societies views on health.

It highlights a few key points:

1) Try to focus on what your body enables you to do, rather than comparing yourself to others, or feeling frustrated about what you can’t do. I sat with a couple of old friends yesterday, who knew me at school and they commented how my life had taken a complete 360. It is a constant everyday battle to remind myself to focus on the “can’s” rather than the “cant’s”. Even if I forget and my mind pushes me to do things I probably shouldn’t, my body is quick to remind me to take it easy. Frustrating as this is, the constant learning and reinforcement is helping me cope and happier every day.

2) Choose your reading material selectively. When I was diagnosed my previous neurologist asked me not to go on the Google machine to look for answers. In a way, I can understand his concern. The Internet is bombarded with unqualified information as well worst case scenario’s. The only time anybody actually writes online is if they really like or really dislike an option. So it is easy to get very worried by the information you may find. That said, it is vital you arm yourself with as much relevant information as possible. Whether you are investigating alternative treatments, trying out new diets or gaining a better understanding of your health, choose reputable, reliable research to equip you with an educated opinion.

3) Tell loved ones what you need. This is a huge topic in itself, and I touched on it in my post, help, I need somebody, but it’s important to give friends and family the tools they need to support you when you don’t feel well. Autoimmune disease and GI diseases are notoriously hard for people to empathize with because they’re not as “visible” or as well understood as other conditions. Just do your best; if you need to, don’t even give info on the condition itself, but rather express how it makes you feel.

4) Stay motivated, but be patient. Again, an everyday battle. In an age of instant gratification, patience is not something that may come naturally to most. A year has gone by from my initial diagnosis. In one way at feels like a long year of trial and error, of little progress and endless frustration. But on the other hand, I have been very busy, trying, testing, exploring and discovering. I find new inspiration in new hobbies (like blogging) and rediscovering old passions and talents.

5) No matter what, your body is beautiful. I know this can be a hard thing to feel or think when you’re in pain, and of course if you’re not in the mood to feel that way, it’s OK. But I do believe that all bodies, no matter what, are beautiful. Yours and mine.

These points I find very useful to a life plagued with a chronic condition. But it is also useful to those looking for a healthier, more enriched existence. I will let you read the Choosing Raw blog in more detail now. I hope you find it as inspiring to your life battles as I do.

Allow me quickly to conclude by going back to the subject “healthy is the new skinny”. I love this idea. No more should we be striving for the Twiggy appeal or the Ally McBeal lolli pop look. A while ago I would have sang to the tune of “strong is the new skinny” and I suppose to a certain degree, I still admire this school of thought. But it is a bit hypocritical to defend one extreme against another. So the concept of “healthy is the new skinny” is a mantra of sustainability and will suit everybody, no excuses, time delays or physical impairments. Physique is 80% nutrition. So eat well and you will not only look good but also feel great.

Be brave and stay healthy.