Monthly Archives: July 2014

My New Thing To Do

I have as new way to spend my time. It’s not going to exercise my body (which I should do more of, because it’s a good thing to do if you have MS). It is however going to exercise my brain. This brain exercise is also a good thing to do for people with MS. 

MS can cause cognitive dysfunction, ranging from mild to severe. This link explains more about it. http://www.msfocus.org/article-details.aspx?articleID=46 For me, I have experienced memory problems, and my learning abilities may be slightly impaired. It’s not great, but I still have enough marbles rattling around in my head to still be a functioning member of society. I’m working to keep those marbles, and not let them get lost. One of the ways I’m doing this is with creative writing.

Creative writing works for me in a couple of different ways. Firstly,my writing connections with other writers is enjoyable, and keeping happy keeps stress at bay. Also, writing helps my brain to make more connections, with more ways to keep my thoughts connecting up. Please note, these are my own ideas about this matter, and I make no claim they are necessarily the actual truth. I am not a nuerologist. I am merely basing this on my own lived experience with multiple sclerosis.

Anyway, my new thing, my new tool in keeping my cognitive abilities as much as I can is this one. I have joined up in a new ‘Online Content Writer. The website is this one: http://hubgarden.com/ I started on the site a week ago, after having a friend tell me about it. She was enjoying writing articles, and getting paid for her writing, and thought I would enjoy is too.  

So I took a look, and started writing! At the moment, I haven’t made enough money to get payment, but I’m enjoying connecting with the community at the site. I’m also enjoying writing the articles. I’ve been focussing mostly on positive thinking type of posts – writing positive things and sharing them with other people feels like a great way to spend my time, and making money from it too is a great bonus! I’m not sure if my cognitive function has improved, but the good responses I’ve received from the Chief Editor of the Hub Page where most of my articles were published, I’m doing well!

  me making point at book launch

If you like to write, and you have things you’d like to share with others, why not sign up and get Hubbing!

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When Your Body Goes Against You

As a person living with MS, I am in the strange position of having to fight against my own body, to try to halt the damage it’s doing to me. I’m not the only person in this position of course. Other people with MS (multiple sclerosis) are in the same situation. People living with other auto-immune diseases are dealing with it too.

Auto-immune diseases happen when the immune system attacks a person’s own body. With MS, the damage is to the Central Nervous System (CNS), causing scarring which interferes with messages being sent from the brain via nerves to other parts of the body.

I don’t know why my body is doing this to me. The actual cause of MS is still not known. There are thoughts and suppositions, but no positive proof for any of them. There are various treatments for people who have MS. These treatments initially were given using injections, either daily, every other day, every three days, or once a week. There is also a treatment that involves having monthly infusions. These treatments were able to slow the progression of the damage and resulting disability, but they weren’t a cure, and they didn’t work for all.

There have been other treatments developed in more recent times. These include the capsules I am on now. I began my MS journey in 2010 when I was diagnosed by a neurologist after I had an MRI scan. This scan showed parts of my CNS that had scarring. I was given the option of the three injectionable treatments. I was in slight shock at the time, and chose Avonex, the one you only had to give yourself once a week.

That treatment went well enough – I remained affected, but relapse-free. My walking improved a little, and I exercised to help further. I was a long way from being cured, a very long way. Then a new treatment came to Australia and was put on the PBA which meant it cost much, much less than it would cost without the government assistance. I was given the option of using this treatment, and was glad to take it up.

I’ve been using this treatment (Gilenya) and am happy to report it is working well for me. I’m feeling better, my mobility is vastly improved, and my life is as good now as it has been since this horrible MS came into my life. I’m eating a healthier diet, with less meat and more vegetables. I’ve lost weight too, because of those two things. I’m also able to live the life I want to live, concentrating a lot more on creative writing. This brings me joy!

I’m also strengthening my connections with my community, and have many friends, old and new who care for me and help me to stay positive. Being happy is my core and basic position, and I strongly believe leading a happy life, choosing happiness over sadness on every occasion, is also an important part of my current happy life. I’m a long way from how I was before I became ill, in terms of mobility, but I’m doing well, considering what I have. Gilenya isn’t a cure for MS, but for those it works well for, it may vebe the closest to a cure available.

If you have MS, do you have ideas on how one can live a good life? My life suits me well enough, other people have different lives and different answers.

Every Day List of Things to be Grateful About

This is from my Facebook (FB) Page today. I was reminded about this when I read the FB note of a friend, who wrote about what she was grateful for today. I remembered I was supposed to be writing something similar on FB for five days. So to attempt to make up for my lapse in memory, I’ve decided to take this further, and put it here on this blog.

The memory lapse part, and the positive thinking part are both relevant to my personal MS story, and so this blog is the correct place for me to talk about the issues related to it all. So here is what it says on my page on FB:

“I’m supposed to be writing a particular number of things I am grateful for. It’s either 3 things or it’s 5 things. I was supposed to start doing it sometime during the week. I forgot, sorry Gail Jury, my memory is not my best thing.
However, I will write/list 5 things I am grateful for today:
It is a mild winters day, no howling winds or pouring rain to have to deal with.
My family members present in our home are well and they love me, as I love them.
My life is moving in good directions, and I have wonderful friends who are going with me.
Our four dogs are all well and being good dogs (they may even keep on being good dogs all day).
I am feeling well. Surely being able to feel well is a fine thing! I think so.

So, task for the day is done. More tomorrow, maybe the same things, maybe others, depending on what feels right at the time. I think writing about this for my blog would/will be a fine idea…”

My memory concerns me a little, forgetting to do things I should have done, forgetting the correct word for something. I know everyone forgets things, from time to time. The older you get, the more you forget. But I certainly don’t feel old enough to be having forgetfulness from being old, not yes. I wouldn’t be surprised if most feel the same way, of course.

Whatever the actual reason is for my forgetfulness, whether it’s age or having cognitive issues because of MS, the simple fact is that if I don’t want to forget things I’m supposed to do, I need to become better organised! It’s as simple as that. I have an iPhone I use often as a calendar, and I have notebooks I use, and others I could use, to help me to stay on track.

I’m going to be studying soon, and I know I’m going to have to work hard if I’m going to stay on track of my schedule for that. I’m in the middle of studying about working in volunteer radio too, which is exciting, but another thing where I’m going to have to remember things. Which button to push, and when, the rules about what can and can’t be done on the radio program, and so on. Life feels fast paced, and I sometimes feel like a struggling turtle, trying to keep up.

I’m enjoying my life though, not feeling stressed, just feeling busy and involved. These are good things. I have plenty of things to do, no time to be bored, but making sure I also have times for free thinking, writing, my version of meditating (this involves being outside communing with Nature). I’m also slowly writing a novel, but this blog isn’t relevant to that – the novel has nothing to do with MS, it’s a near future science fiction thing, more related to the fact of living in the country. This novel is a kind of game for me, almost like I’m only pretending to be writing it. The word count is barely moving, but I’ve given myself a year to get it done, and I’ve only been going for a month with it so far. I’m pacing myself wit it, one little bit at a time, no expectations of heaps being done quickly. This time next year, that’s about when I expect to have lots done, plenty of time still.

This idea of pacing oneself, that IS relevant to MS. I hear of the stresses some people with MS have to deal with in their lives, and feel sorry for them. MS & stress don’t go together well. This link talks about a study to look further into this. On a personal level, I certainly agree with the premise that avoiding stress, or finding better ways to deal with it, is a good thing, and helps with reducing bad effects from having MS. Looking at my life in a a positive way, enjoying my life, keeping as active as I can (or at least trying to), eating a good healthy diet, meditating, all of these things go together to limit the stress I feel in my life. 

It’s not just MS of course, everybody needs to keep their stress down to a manageable level. I find creative writing, and being involved in my community help me to stay positive. Looking at the good things in my life, and limiting the bad all help. So, thinking, every day, about the things I am grateful for, will be an asset in my task to live a stress free and positive life! 

Life is Good!