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.