One of the great things about being able to work from home and for myself in business is that with a disease (god I hate that word) like Multiple Sclerosis it means that I have the ability to still earn an income and living doing what I do but that I don’t have to front up to a workplace day in and day out.
One of the toughest things I found when I was in the full time working world was that commuting in peak hour traffic in the mornings on public transport was a nightmare for me. The first symptom which identified and alerted us to my having this disease was loss of vision in my right eye. A thing called Optic Neuritis which is caused by demyelinating . The vision loss in my right eye is permanent and something I won’t get back. Check this out, this is my actual eye and the scans that they did of it.
The diagram on the right is actually of my left eye (the good eye) the red and yellow is blood flow and nerve activity going to my optic disk and nerve. See all that action and happiness happening there. Red and yellow = awesome.
The diagram on the left hand side is my dud eye (the right eye) and the optic disk and nerve, see the significant activity and lack of red and yellow. That’s why I am blind and can’t see. I see a little bit but as you can see it’s not a lot at all. Now you all might understand better what and why I don’t see out of that eye.
It’s essentially like I’ve a blind spot and meant I was always walking into things and even still I miss steps or the curb. It means that in public I’ll often try and steer as far left as possible and I’ll be forever telling whoever I’m with to walk on the right of me. As you can imagine then that commuting in the morning when there are people everywhere gets stressful when people are bumping into you and when your legs don’t really work and you want to sit down.
MS is considered an “invisible” illness in that if you were to look at me or most others who have it, from the outside we look fine. On the inside though our immunity and bodies are attacking itself and I often get fatigued or tired quickly. I hate that in the morning when you’re sitting down on public transport people glare at you when you don’t get up or offer your seat. If I’m feeling ok, I’ll always offer to someone more in need than I, but there are days I simply can’t. Where I don’t want to risk a fall or hurting myself any further. That sense and feeling you get of someone unknowingly judging you or just thinking you’re a peace of shit is not cool.
Largely the reason I left my job was so I didn’t have to commute on the regular and if and when I do, I make my meetings later so I can avoid peak hour. I’ll also make my meetings and those coming to meet me near my house and at my local café. While you think I might be unaccommodating or being a brat about having to travel, it’s more so that we can meet, I can give you my all. So that I don’t get tired before I get there and that my brain is in full functioning order.
While it might all sound like sunshine and rainbows and you think that I’m in my PJ’s as I type this, my strong work ethic and stubborn attitude drives me to work hard and to get things done. The MS meds I now have to go on cost money and while I get a bit of an offset from Medicare they’re still a cost each and every month I have to factor in. My Neurologists appointments are somewhat subsidised by the government but there is a large gap of which comes out of my own pocket. There are tests like bone density tests or ones with the ophthalmologists which aren’t covered which have to come out of my own pocket and I have to pay for entirely.
While I could probably apply for money from the government, get a healthcare card or file for disability (again I hate that term too) there are many people out there that are doing it tougher than me and that needs the funds, financial support and care and access to resources more than I do. If this experience has taught me anything it’s taught me to realise what’s of importance and of value and that while material possessions are great a lot of un necessary items aren’t a fixture in my life no more.
I don’t remember the last time I bought myself new clothes or an outfit but after seeing documentaries about fast fashion and what it’s doing to exploit other cultures and workers, not to mention our environment I’ll wear the same stuff until it wears out. I’m ok with that and like to think that it’s making a difference.
When I elect to work with people as I’ve mentioned before I do I do so because I want those interactions and relationships and that I value not only having them in my life but because I can assist and teach them something, or they can assist and teach me something.
I am often my own worst enemy in pushing myself to do more, achieve more and also to do everything humanly possible. I’ve learnt to delegate more, to take help when it is offered to me and also to utilise and surround myself with amazing team members, family and loved ones. Is this a sign of defeat? Fuck no, I’ll give anyone any day a run for their money and it shit’s me to tears when I see people that are happy to wallow in their own bullshit and feel sorry for them, taking a hand out from the government; my tax dollars, my hard earned dollars which I’m not even tapping into myself.
I’ve come to realise that I can’t do everything all the time, and that I’m only human and that it’s ok to say no. That if people can’t get adapt or deal with their sometimes being delays or hold ups because I’m unwell, well then they’re not the self-absorbed people I need in and around my life. I’ve learnt that I can’t always control the situation but I can control how I chose to react to it and that if I don’t or can’t walk on certain days and people don’t understand or get that, well that is ok too.
I’m fortunate that I’m one of the few that had the skills, resources, knowhow and drive to be able to create a situation, an opportunity and work environment where I can call the shots, that I can create the rules and where I can stipulate the terms, that I can keep my independence and dignity in the entire process. Yes I’m a control freak lol but there might come a day or time where I’m not, so I may as well make the most of it while I can.
Is it easy? No way.. Is the work hard? Yes of course it is. If you don’t work you don’t get paid. Is it upsetting, yeah there are many days where I wish I could just run away just for a week to a tropical island without a single responsibility or care in the world, BUT where would the fun be in not living, doing, creating or achieving something.
That you can look back later in life and be like “you know what, I gave it a fucking good crack and shot and I’m proud of all I achieved and accomplished”. Everything is on my terms, everything I’m in control of (well as much as I can be) and well knowing that makes me able to go on for another day. I am way happier now, less stressed and in control than I ever was before. Maybe this happened to serve to tell me to slow down and realise that what I saw to be important isn’t.
P.S This isn’t me wanting you to feel sorry for me, as I avoid that bullshit myself at all costs, but know that if and when I don’t want to meet you it’s not because I don’t want to, but it’s because maybe I’m tired or some other crazy stuff’s going on in my body or brain.