Countdown is really on.

It is Day Two. To be exact, 26 days to go before I start the Lemtrada treatment. The post I shared yesterday was Day One, in case you missed it. 

I am not worried about the treatment itself. I'm worried about the side effects. I'm concerned the days after are going to be the hardest. I can't worry about the treatment, as it's out of my control. I don't know how my body is going to react to this, but I can control how it feels before hand. 

This morning I woke up with the most energy I have had in months. Unfortunately, this new found energy didn't go into exercise, but went in to work. Not such a bad thing. But the new healthy life style didn't really get a look in today -  oops. Maybe dinner time. I have managed to get some steps in. Although it wasn't through walking, just the usual dancing around the living room to an upbeat playlist which gets my day (and my brain) going. A bit of 90s dance going in the background as I write this. A little bit of C&C Music Factory for all those 90s lovers...

Being in control and knowing what will happen next is something I am sure most people can relate to. I am one of those planners. I like to know what's happening, and like to be able to plan ahead. Letting things "happen" is not something I like. Although I like the idea of letting it all happen, if I had to actually do it, I would probably fall apart. I'm an organiser, a planner. And not knowing how I am going to be affected by this medication is messing with my inner control freak. I don't like it. But I can't control it. What I can control is how I react to it mentally and be able to do as much as I can to avoid getting sick before and afterwards. The reaction to the drug is going to have to go with the flow... my inner control freak just screamed in agony with me admitting this!  

I watched a #Melrobbins clip yesterday about being able to solve problems. This also goes towards the ideas of control. Change what you can, and don't stress about the ones you can't.  Wise words, but who listens to wise words? I'm trying to. I really am. But when things go to custard, how often to we remind ourselves of these wise words. Whether by Mel or the Dalai Lama. Can I get you all to remind me of these when I'm suffering from the steroid crash and lack of energy levels? Say wise words and I'll probably throw something at you. Ha! 

I can be prepared for the days of infusion. This isn't an issue. I can have things to do, food, water, my beloved Precious (the iPad) and books. It will be like my own little holiday, without the sun, sand and sea. I am currently trying to teach myself how to crochet! Trying, being the operative word in that sentence. Something additional to do when I'm sitting for hours on end in the ward at the hospital. Oh the control! I may even take my work laptop with me. 

Luckily, I won't be alone in the ward, as other M.S. patients will be getting the same treatment as me in the same week.  We will all be in the same boat. At least we can share stories and experiences. Having people who have been through this is an absolute life line, however. Knowing what they have gone through definitely helps. Even the advice they have shared on what to take in and what the process is a godsend. The nurses haven't been as generous sharers on this. But they have a lot of patients to look after, so I'm guessing this isn't a priority. 

Day one... a patient's diary.

It's been a while. Actually, it's been longer than a while. And whilst I may have been in touch with some of you, not all of you know what's going on. And for my newer contacts, it's not been a while at all. 

In 27 days, 13 hours and 44 minutes, I will be checking in to Charing Cross hospital, here in London as a day patient. I will do this every day for five days. The reason behind this, I will be starting on a treatment for my M.S., which will hopefully, give me a new lease on life. 

Back in March 2017, I had a really bad relapse after moving house. Again, after moving house in May last year (2018) I had another one. Yes, you got it, I'm never moving again! (I know this idea makes my UK friends happy, and my antipodean ones, not so happy). Similar issues, with my legs having lost pretty much all motivation to feel. I could still move them, but what I had was dead leg. You know the feeling you get when you sit on them too long, and you've lost all feeling to them. Yeah, that's the one... in both legs. The second relapse has been the longest, and in all honesty, I still haven't quite recovered. So my Neurologist, in all his wisdom, suggested a new treatment. 

So it comes down to this. Monday 25 March, I will be going to get this new treatment. But I want to document everything which happens leading up to, during and the effects afterwards. There are others out there who have done this. They have even recorded videos of what they have gone through. I'm more of a writer. Although if it comes down to not having any energy to write at some stage, then I'll dictate to the husband and he can type it up. 

The treatment: Lemtrada. It used to be called Campath, and is a treatment used for Leukemia. On the first morning, as I understand it, I will be tested for any infections. If there's any infections, I will be treated with anti-biotics. Fingers crossed this doesn't happen. Then, it will be on to the infusion of steroids! After this, it's on to the good stuff, which is supposed to be killing off my immune system, via an infusion. 

Because M.S. is an auto-immune disease, my immune system attacks itself. The idea behind Lemtrada is it will reduce my immune system and hope it bounces back without it wanting to attack itself again and again. 

Time: The initial treatment is for five days. Then for three days the following year. Fingers, eyes, legs and everything else crossed, this will be enough and my self-attacking immune system slows right down on the inside front!  If not, there is a third year to look forward to, if this doesn't work. 

I have been told by the nurses at the hospital and all the people on the Facebook group I am in, I need to start on the listeria diet. Although the timeline for this one is a little hazy. So I've started already. Basically, the same as the 'pregnancy' diet to avoid any chance of listeria infection. Trying to stay away from anyone with a cold, flu or any other person/place where airborne viruses are rampant. Unfortunately, work won't quite allow that, so I have loaded up on Anti-bacterial hand wash, wipes and any thing else I can get my now, very clean hands on.  I'm wiping down the keyboard and desk now. Handles, phones and anything else which may have been infected. Overkill? Quite possibly. And after a couple of days of this, I know I'm going to be totally over it. Do I have to give up wine?? 

So Day One is nearly over. I haven't been very good. I should be eating well and staying active. Am sure Day Two will be better. 

I swear I'm not drunk

I've been lucky. Up to now that is. My little MS monster has decided it's had enough of keeping quiet and just hanging around in the background. No, it's had enough of being ignored. A little while ago, my monster decided to show it's ugly little head (or not so little anymore) and slap me around a bit.
To be fair, I had been ignoring him pretty significantly. My stress levels had risen pretty high, from work and moving house and a couple of other things. I had taken advantage of the monster silence and medication-aided alertness to the point of not getting enough sleep, or at least going to bed at a decent hour.
So a couple of Thursday's ago, I woke up with dead legs. That heavy feeling hit my head and heart. My legs felt like I had been sleeping on them all night. If you can imagine when you sit on your legs and they go to sleep, that's what it was. But it was the whole leg and both. I took the day off, as usually when these attacks have happened in the past, they have not lasted too long. My legs managed to be okay for the next day, although walking was slow, and I went to work. Saturday, again wasn't too bad, nor was Sunday. Monday I woke a little worse, but decided it would be a good idea to try and go to work. I had an important day ahead and didn't want to miss it. A day on the floor with one of our operations teams, so it also meant I would be on my feet. What a crazy idea that was.
I was stumbling around, losing my shoes and didn't actually realise my shoe had left my foot. I understand the drunk references in MS so much more now. It's given me a better appreciation of the disease and all it brings, and just how lucky I have been.
Nearly three weeks on, and I'm still coming to terms with it. My mobility has improved, but the balance is still off kilter. I've forced myself to listen to my body for the first time in a long time. I've also managed to do a canal boat trip with family which has been a saving grace. Enforced rest, some sunshine and nothing more stressful than deciding where to stop for the night or what to have for dinner. It's been a learning curve, but one I plan to actually take note of and to make sure I follow the rules in future. And whether or not I get my legs back to 100% or only some of it, it is what it is. I can't get down or feel bad when I have the support and love of some of the most amazing people in the world. I am still lucky.

Photo Journal

Just over a year and a half ago I stole an idea from a friend. The idea was to do a photo journal of my year. And, astoundingly enough, I managed to complete the year (give or take a few days). I believe I only actually missed two weeks throughout the year. I started on February 11th 2012 and the last photo was posted on 31st January 2013. There were days which were slow photo days, in which case, I would post a cartoon or someone else’s photo. Looking back, it is amazing how much we do each day, and what significant events occur during our lives, which we just take for granted. From a grin on someone’s face, to a cold snuggly cat, there was so much enjoyment and happiness through this time. There were also some losses and sad days, and reflecting on these still makes me a bit sad. But it also makes us stronger. There were a lot of photos of food and wine, but also of friends, family and our two kids (the cats). It makes me realise the importance of people who make you laugh and can cry with you through your life. It makes me thankful for what I have. I have been truly blessed in the fact that I have so many great people and opportunities in my life. What I also love is modern day technology, which allowed me to share these photos with you. And allows me to write this and share it with you all. I wish everyone did this and shared it on social media. I would love to see what my friends and family see. I am also tempted to do this again, as it helps me remember the year I’ve had, the people who have come into, and left my life. The experiences I’ve had, whether good or bad are remembered through these photos. So I challenge you all – give it a go, even if it’s for a week. Put a week of your life in photos, and see what you can take out of it. It doesn’t have to be arty or creative. Just a photo where something has happened or you’ve seen that you want to share, or just want to remember!

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.