Decisions, decisions

The decision for us not to have children was quite likely the hardest decision I'll ever have to make. Luckily enough, there were the two of us making it - we had each other to console. 

Having kids was one of the reasons we upped sticks and moved back to Australia. We wanted to be closer to our families, yet not so close we were on their back doors. we also knew Australia had better opportunities work wise for the both of us. 

We moved back prior to me being diagnosed with MS, and even built a house with children in mind. Although the MS was diagnosed half way through the building process. We thought we would still try for a family. Even when the Specialist suggested going on the MS medication, we wanted to keep trying. 

We gave ourselves 12 months. I have never had that burning desire to be a mother. I liked the idea of having children, watching them grow, instilling my ethics and ideas into them and molding them into amazing people. But if it didn't happen it was never going to be the end of the world for me. So trying fertility treatments and/or IVF didn't ever enter in to the equation. And to be honest, even if I hadn't been diagnosed with MS, I don't think we would have tried any of the fertility treatments. 

So when it didn't happen for us, and it was time for me to go on the medication, we didn't feel like we hadn't tried. And we both agreed it was the Universe telling us it wasn't meant to be. 

After talking to friends with and without MS, I think the decision we have made is the right one. Although it was hard to begin with, and a lot of friends and family around us were having kids, in the end it's been the right decision for us. 

Watching how tired some friends get who don't have MS, makes me think I've done the right thing. Some friends who do have MS and kids, say they wouldn't change it for the world, also say they wish they'd known how bad it could get. 

We have made some compensations though. We get to travel a bit more, and have managed to adopt two incredibly gorgeous cats, who we love to death. We get to spend our money on us. And I am not ashamed of being able to do that. We also get to spend it on the people around us, and the kids they have. We can watch all our friends' children grow up and be part of their lives. And when they start screaming, crying and need changing, we can hand them back to their parents! It really is the best of both worlds. 

It's the not the life I imagined for myself, when we started talking about families, but i am okay with it now. 

It took a little while to get my head around, and there are some days when I have a maternal flutter... but they're few and far between. And I pick up a phone and call a friend who has kids. Then I'm all better again! 

Stay safe

xoxo

Awareness

It's been a couple of weeks since I last posted anything. Mainly because I've been too tired to write anything. One of the major downsides of this stupid affliction. 

There's so many names to call it; disease, affliction, condition... I like to call it Thing! I don't see it as any of the other names. It's Multiple Sclerosis, but it's a thing which sometimes slows me down. Well in reality, when I think about it, it slows me down more than just sometimes, but I like sometimes. The other times I just refer to myself as lazy! Maybe I am. 

May is MS Awareness month, with the 30th of May being World MS Awareness day. This year, the MS Society in Australia has come up with a great campaign - Kiss Goodbye to MS.

With this, I am enlisting the aid of some people at work to help raise the awareness of MS and hopefully raise some much needed funds, by wearing red lipstick on May 30th. Although it may not be very practical for most of the guys. Hopefully they will just wear red socks or ties if they can. 

I have also a very gorgeous friend who is doing the MS Walk and Fun Run a few days later in Melbourne - Sunday June 3rd. I have done this for the past couple of years, however this year certain events have prevented me from participating. I am so very blessed to have such amazing family and friends who will do these things for me, or with me in mind. I'm awfully humbled by the amazing support people have shown me and the cause itself. 

It never ceases to amaze me how many people continue to tell me of friends and family members who have MS. I've said it before, but I knew nothing about it before I was diagnosed. 

When I was first diagnosed I registered with the MS Society and received a brochure entitled "Knowledge is Power". A very popular phrase, but so true. This gave me the information I needed, and also family and friends needed, to understand how to live day to day, and plan for the weeks, months and possibly years ahead. How to cope with day to day living, what I could expect from the "Thing" and what some other symptoms I could possibly develop or already have. There is nothing like knowledge to help prepare you for anything. I feel I managed to accept the diagnosis a lot easier with this information. Telling people what I had became easier, especially when the questions came along. 

Some additional facts:

• There is an estimated 21,000 people in Australia living with MS. 
• Approximately 1000 are diagnosed every year.
• Some of the most common symptoms are: extreme tiredness, blurred or double vision, difficulty walking, loss of balance and co-ordination, dizziness or vertigo, sensitivity to heat or cold
• There is currently no cure or known cause of MS
• Australians with MS spend $78million a year in out of pocket expenses. 

When I first went on my medication, the MS Society arranged for one of the MS nurses to come to my house, and teach both myself and Tony how to do the injections. Yes folks, I have to do these myself. The first course of medication I was on, Tony was doing it for me. I couldn't cope with a big needle. However, the one I'm using now, which is only a small needle, means I can do it myself. 

I can't thank the MS Society enough for how much they have done for me and empowered me to know and understand my limits. It provides an amazing amount of support, not just for MS sufferers, but also for carers and families of people with MS. 

So my request to anyone who reads this, please either this month or on Wednesday May 30th May, wear something red to show your support of people who live with MS and raise awareness of this disease. 

Stay well

Jodi

The invisible shadow

In an earlier blog I mentioned this disease is invisible. By this I mean the symptoms and 'attacks' are invisible to the naked eye. To look at me you wouldn't know there is something wrong or that I suffer with a sometimes (and for a lot of people) debilitating disease. 
My hope for myself is that I never get to the stage where you can see what I am going through. There are thousands, if not millions, of people who outwardly show signs of having Multiple Sclerosis. Some of these are people I have met through social networking sites, like Facebook. To them I am eternally grateful. I know if I have an issue or a question, their experiences and support allows me to get the information I need or crave. These people know what I am going through. To them, my disease isn't invisible. 
There are so many manifestations of MS, that it is hard to tell people all the signs and 'attacks' we could possibly have. So I will tell you mine.
I was initially diagnosed with Optic Neuritis, which is where my optic nerve is inflamed. This was originally in my left eye, but as the years have passed it skips between each eye. Migraines behind my eye, colour and vision distortion and a dilated pupil. Brought on mainly by my body temperature increasing, sometimes it's a sure sign I'm not looking after myself or I'm tired. 
From 2004, when I was diagnosed, til the end of 2005 this is pretty much all the problems I had. Then in October 2005, Tony and I went to New Zealand for a holiday. After flying three and a half hours then driving for another two hours to get to a friends place, I was absolutely exhausted. It was here I had my next attack. 
I experienced a really weird feeling in my left leg, where it was prickly from the tips of my toes, right up to my groin. My whole leg was shutting down. This was my first, and not to be my last, experience with the pins and needles phenomenon, that affects so many of us MS sufferers.
I didn't know what was happening. It was my first serious attack, and I was not in a familiar area, and although I had friends and family around, was completely and totally out of my comfort zone. 
To this day, I still have these pins and needles in my leg, more noticeable in my toes and foot than anywhere else. 
Because of the heat, baths have become a thing of the past. Only discovered from having a hot bath one night, and having the pins and needles affect my side and back where the hot water had been lying against my body. It was a lesson I won't be forgetting. 
After hurting my wrist at work one day, and needing physio, my Physiotherapist suggested I go home and put my hand in a basin of ice water, to help with the healing process. Unbeknownst to me, this was also the worst thing I could have done. As ice burns skin, and even though my hand was in water, my nerves in the hand didn't know the difference, and now my hand has pins and needles in it too. Although bad for the first few weeks, this has eased off, however the pins and needles remain in my fingers and top part of my hand. 
I think the worst attack I've had, and the one that scared me the most, was when the right side of my face lost all sensation. This was just prior to going away on holiday in 2010. 
Waking up one morning a week before we were due to fly out, the whole side of my face, mouth and top of my throat had pins and needles. It's what I imagine having a stroke would feel like, except I didn't look any different. I was scared. Really scared. Eating was weird, as all the taste buds in the right hand side of my mouth were gone too. I can handle losing my gait, and having the pins and needles. But losing the ability to taste completely freaked me out. 
The doctor put me on a high dose, short course of steroids. This in itself was a bit daunting. But we carried on with the travel plans, and I slowly got the feeling back in my face. It felt like I had drop face, and that people were staring at me. But they weren't. It was all in my mind. 
This happened again in the November, just prior to going away again. Maybe it's my body telling me to not go on holiday, but the November attack was the last one I had. 
I'm now on new medication and have been for just over a year. I've had no new attacks, and fingers crossed it stays this way. 
I still react badly to heat. Whether it's exercising or a really hot day, I'm bound to suffer. I know when I'm tired as my legs get achy and walking is a chore, and one or both of my pupils dilate.  On these days, I try to quiet my brain and body. Sometimes I can't as I have to work, but I push through it and come out the other side. 
I don't look disabled. I don't act disabled, and I certainly don't feel disabled. But I've accepted now that I am. Just because you can't see it, doesn't mean it isn't happening. It's invisible to you, but to me it's real and I can feel it. Every last pin and needle. 

Staying true

This time last year I set the wheels in motion on changing to part-time work. My health was suffering with working five days a week, and I finally came to the realisation that I couldn't do it anymore. After sitting down with Tony, we decided it would be better for me to go to at least a nine day fortnight, if not a four day week. 
I approached my manager and asked if there was any chance my current role would allow me to do this and if they would let me. 
This wasn't going to be easy, and it also meant more people were going to be told about the MS. I am not ashamed of having Multiple Sclerosis, and for most of my life, I have worn my heart on my sleeve and never been particularly secretive about how I feel or what is happening in my life. But by choosing this road, I would need to share with people I wasn't ready to tell about the MS. 
I don't ever want my MS to define who I am, but some times I need to realise I can't do everything I want to and won't have the energy or the drive to do things. It was very hard to admit that I couldn't work full-time any longer, and to feel like I was relying on Tony to take up  the slack and to cut back on things that I enjoy or covet. 
My managers, although weren't able to keep me where I was, were fantastic about trying to find me something else within the company. I enjoy where I work. The people are fantastic and the company itself is somewhere I am proud to work. I came up with a suggestion of what I could do, and this was also taken on board. I initially suggested I did the nine day fortnight, but a couple of my managers, in their infinite wisdom, said the four day week would probably be better for me.
I think my way of accepting going part-time was to drop one day a fortnight, that way I was compromising with myself. But at what cost? I now know after having the four day fortnight, that choosing any other way wouldn't have been good for me. The reason behind cutting back the time was to help my health and to make sure I was looking after myself, not to try to prove to myself I could still work at a "full-time" job. Giving up what to me is my independence was difficult.
So now, after nearly a year of being a four-day week worker, I am loving my role. It has changed a little bit since I started, but in a good way. My new manager is great to work with and I feel like I'm able to live my life in a normal way, but also look after myself by only being at work four days a week. 
In my mind now, this is a battle won. I haven't given up my independence like I thought I would. I have been able to stay working somewhere I enjoy, with people I like and respect. And I'm able to have an extra day at the weekend to regenerate and reenergise. Some times the weekends are busier than they should be, and I need to monitor this a little better. My day off is a day to look after myself and I try to do this as much as I can. 

My Journey

So I, in my infinite wisdom, have decided to share with you my journey with Multiple Sclerosis. How it has affected my life, the people around me and my day to day living. But not only that, to try to make people more aware of what it is, how it affects us, and the people around those of us who have it.

I may not be the worlds best writer, or have any knowledge of other people who may write about MS, but this is my story, and if I can change just one person's knowledge of what it is, then I'll be happy.

I was diagnosed in May 2004, with relapsing-remitting MS. If you're going to get MS, then this is the one you want to be diagnosed with. It's kind of like the difference between Type 1 or 2 diabetes (being the 2 sort). It means that I will have, what the neurologists call, exacerbations, where I may have an attack once a year, a couple a year, once in two years or once in three years. It's really unknown when they're going to happen. There are two other types of MS, Primary Progressive and Secondary Progressive. These are the ones where you are getting worse all the time, and there is a chance, I could develop one of these.

To be really morbid about it, it may be the death of me. However, I could walk out in front of a bus tomorrow, so I try not to think about that too much.

We (Tony - my husband and I) think I had MS when we were living in the UK, but just couldn't put a finger on what was wrong with me. Six months before moving back to Australia, I developed migraines in the back of my left eye, had colour distortion and it felt like I had glad wrap (cling film) wrapped around my eye. I went through a multitude of tests, eye specialists and finally a neurologist, only to be told I had Optic Neuritis (I called it up optic neurosis). Back to square one. During this time, I was also having fatigue issues, which we put down to being in the UK winters, stomach and bladder problems and weird tingling sensations. None of which we linked to the other.

Coming back to Australia the Optic Neuritis flared up again, and I went on the research bandwagon. The prognosis wasn't great, as having a second bout of Optic Neuritis would indicate MS. I found a neurologist, went through all the tests, including a lumber puncture (where the local anesthetic wore off - ouchie). Even with all these tests, we weren't convinced anything would come out of it. Both Tony and I thought that it was going to be just another "we don't know" or "there's nothing we can find" answer.

It wasn't the case at all.

After the original diagnosis, I was pretty stunned and it didn't really sink in. I needed to find out more. I had never heard of MS, apart from the President on the US drama The West Wing, having it, I was pretty clueless. As were a lot of friends and family. Growing up in New Zealand it wasn't something we ever heard about and if someone had it, I didn't know. Telling people who grew up in Australia was easier, as they had done the MS Readathons as children, but I don't think some of them were actually ever told what it was, or how it affected sufferers.

Some statistics I found out while researching MS:

• There is no cure
• the average age of diagnosis is between 25 & 40
• it affects more women than men. Currently 70% of people with MS are women
• 98% of people with MS have a Caucasian background.
• it is more prevalent in cooler climates. In Australia there is a higher percentage of people with MS in Victoria.
• it manifests in different people in different ways
• it can also be known as the "invisible disease" as a lot of people's symptoms are not visible.

As you can imagine it was difficult to comprehend a lot of this, and having so many other people in my life researching it was phenomenal. When I told people what I had, the amount of them that have someone in their life with MS, was amazingly high. I finally felt like I wasn't alone, there were other people out there who I could talk to or listen to about their stories. I didn't go to the MS Society straight away, and still really don't use them as an assistance tool (apart from research). But I know they are there for when that day comes when I do need them.

Eight years on and there are still days where I have the "Why Me" attitude. They aren't as regular as the first couple of years, but they still happen. MS doesn't stop me from doing a lot of stuff, I just need to make sure I look after myself and manage my fatigue properly. It means I should say no to a lot of things (which sometimes I don't).

I couldn't have got through the diagnosis or the day to day living with MS, without the love and support of my family and friends. They have been an amazing support group, and I thank you all. You know who you are!

There is so much more to tell, but I'll leave that for another day.

Kia Kaha

Jodi