Monthly Archives: December 2017

Bigger Things, from a Small Wound

At the moment, I’m battling … Not the Multiple Sclerosis (MS) I’ve had for nearly eight years now, that’s going along quite well, mostly. I’m not battling that so much as simply living with it, knowing what is good for me, and what isn’t, and shaping my life around those things that MS has brought to me. So no, that’s not what I’m battling.

I’m battling something I shouldn’t have had to battle, and perhaps if I’d realised the extent of the possible problem, I probably would have better dealt with it in the beginning, and so wouldn’t have to be having any battle at all. I didn’t realise the extent of this problem, and just left things to sort themselves out, thinking that would be just fine. I was wrong.

Things aren’t just fine. They aren’t terrible, not yet anyway, and hopefully I’m on top of it now, so they won’t go that way. If things aren’t better, or at least almost better, I will be heading off to the doctors early next week. I feel silly about this, but there you go, It’s the Christmas season, other things get in the way, and things that should happen, don’t happen. So what is this all about? I’ll tell you …

Around three or four months ago, I was doing something I know I shouldn’t do, and that was picking at the dry skin on the side of my face, close to my right ear. I went a bit overboard with my picking, I suppose, and there was a bit of blood, not much, just a little. I thought nothing of it at first, but it bled a little bit more and it ended up as a scab, about the size of a man’s thumbnail. I assumed it would dry out and drop off quite soon. I was wrong.

I went through the Season, up to Christmas Day and beyond with this scab on the side of my face, just sitting there, not being a bother, but simply a very much less than attractive feature. Still nothing to really worry about though. With MS, wound healing can take longer than it would have in a person without MS. I knew that, so, as I said, didn’t worry.

Then the scab got painful to the touch, and I decided it may actually be a good idea to do something. The battle had begun! Three days ago, I put betadine on the scab, and noticed there seemed to be some kind of liquid oozing slightly from the scab. I didn’t like that, not at all, and the scab was still painful to my touch, when I put the betadine on it. I wondered whether that wound had become infected.

I’ve put betadine on that scab every day now, and this morning I discussed the issue with my husband and we are now both aware that it will be a doctors visit if things don’t improve. My husband is my carer and he takes his responsibilities in looking after me seriously. Sometimes too seriously for my liking, but not this time. I hadn’t thought about this until yesterday, but I’m feeling a bit weaker, and getting more tired at night, fatigued, in other words, and that’s when I began wondering about the possible interactions between this possibly infected sore, and my MS. I turned to the internet and discovered an interesting and relevant website.

So it seems my thoughts about my weakening body, and the scab/infection could well be the source. The body usually deals well enough with infections, doing good job of it for most people. Those of us with MS though, may have issues with that, and especially if their MS medication affects their immune system. My medication, Gilenya is certainly one of those, that’s what it’s supposed to do – It reduces the number of white blood cells in my body and so reduces the damage done (MS is from when the immune system for an unknown reason, attacks the Central Nervous System, causing scarring, which can slow or prevent the passing of nerve impulses to the body).

So, my thinking is that the weakening I’ve been feeling could well be caused by the infection affecting my body in was that could get worse, that’s why I’ve stepped up the battle a bit more. So earlier today, I put another dose of betadine on the wound, a bigger dose of it, and I’ve put a wound dressing in it. So take that small wound, I’m onto you, and you won’t get me!


The Price & the Value of Damage

The chronic illness I have, that somewhat limits my life, is Multiple Sclerosis (MS). This illness has an unknown cause, at this point in time, although there is much work going on to find a cause, a cure, and treatments to offer to those of us suffering the effects of it. I currently take a medication that is helping to limit the effects of the damage done to my body and mind, I hope, and hoping further for a possible cure at some stage.

In the meantime though, I am taking my meds, eating a nutritionally sound diet (most of the time), garden produceand doing the things that I love to do, and that bring me the most joy in life. Creative writing, involvement with community, watching my favourite sports, being with friends and family, doing these things helps me to be happy. That first item, creative writing has been a tool I’ve used throughout my last thirty or so years, writing about abuse, and about this pernicious illness.

I have books about both of these things, the first a poetry collection on sexual abuse, cover picand the second a memoir I wrote quite soon after MS came into my life. When I was diagnosed I looked for books that would help me to find ways to live a good life with MS, but couldn’t find what I as after. I then decided to write that book myself, and it certainly helped me, as I know it has helped others.

Now MS is an autoimmune disease, with symptoms being the result of the body attacking itself, particularly the myelin sheaths of the Central Nervous System. This attacking causes lesions, or scarring, which in turn slows the passage of nerve impulses throughout the body. At the moment, I am more or less, in remission from these symptoms, with only milder symptoms compared to how I’ve been when I have been in relapse.

When that had occured, I’ve suffered from readibly discernable muscle weakness, leading to trips and falls, dropping things, and also leading to fatigue that takes much more than a simple rest for a few minutes to get over. So yes, I feel damaged by this disease, as I also feelk damaged by various bad things that happened to me in my early, childhood and teen years. There has been talk about the way traumas such as abuse, certainly including sexual abuse, can have long lasting effects on the body. I read things like this and wonder, did that early abuse I suffered from as a child and then teenager lead to me getting MS?

I will probably never really know the answer to this question, but I wonder. in this wondering, I read things about it, I ponder things, I write things (on this blog and in other places too). On day, I would like to take my wonderings to a broader audience and talk to other people about these things … me making point at book launchTalking to people and sharing stories, these are age old ways community has always had to deal with problems, and I have certainly felt benefits from being involved in such things.

When you suffer, and think deeply about things happening to you, you can sometimes find profound answers to the things that trouble you, and sharing those answers with other people who are also suffer can help both yourself, and those others. I responded to a post on Facebook today with the following thought:

“Only those who can admit to their damage can truly heal, both themselves, and others …”

I sometimes surprise myself with my own wisdom, as in this case … I’d love to know some of your own bits of wisdom, please feel free to share them here, with a comment!

Disabled doesn’t mean Always

OK, I have Multiple Sclerosis (MS), which is a disability, and certainly sometimes I can feel affected by MS, and both feel show my disability. On a hot day, especially When I’ve been doing too much as well, then I will be limping, and possibly could fall over. I may be unable to hold on to things properly too, and so drop things.

On a cool day though, if I don’t do too much or get stressed, I can feel and seem to be perfectly ‘normal’. This can lead to other people to misunderstand, and think people like me are faking our illness. On one of those hot days though, when I crash to the ground and get hurt, then it’s easy for people to believe. I’m glad I don’t have those days very often, I try to keep cool and unstressed …

There is no cure for MS at the moment. There are certainly treatments for the disease though. Some of the treatments are injections affected people can get, or give to themselves. Or there are infusions people can have. Or my treatment of choice is a capsule I have every morning. This works well for me, and it is keeping me pretty well relapse free, unless I get too hot, when I may have what’s called a pseudoexacerbation.

This is a temporary relapse back to how your symptoms were before, but you’re back to ‘normal’ again once you’re cool again. It may feel worrying, like you’re getting a relapse, but it isn’t that, fortunately. I’ve only had a couple of these pseudoexacerbations. One was on a hot day, after I’d driven back home, from Gawler, a town about 25 km from my home. I was driving our car we had at the time, a small manual car, and I still wasn’t completely proficient with dealing with changing gears. I was feeling hot and stressed out, and getting weaker and weaker.

I pulled up my driveway, got out of my car and carefully walked around the car to the passenger side, got the door open, and then I collapsed. My muscles in my legs and arms wouldn’t work, and so I couldn’t get to my handbag and my mobile phone to try to get help. I was in the shade of my car though, and I knew my son, who would have been about twelve at the time, would be getting off the school bus soon, so I tried to stop worrying, knowing he could get a neighbour to help.

I don’t know how long I was there, but it can’t have been more that an hour or two. It was the worst I’ve been, when on my own, and in retrospect, thinking about it again, it seems scary. I didn’t feel scared at the time though, I just felt weak, and dopey, my brain wouldn’t think properly. I just kept thinking, it will be OK when the bus arrived. And then the bus arrived and pulled over, my son got off the bus and started walking to our house. I called him over to the car, and told him to got our neighbour to help me to get up.

The two of them got me inside, and once I was sitting down, got me some water. The air conditioner was on, so the house was cool, and that and the water helped me to get back my control of my muscles. That was the most disabled I’ve ever felt, I think. The idea of disability is an interesting one. I may have a disability, but I am still able to do many things that other people can’t do.

I’m a writer and poet, and I sometimes run poetry workshops, where I put together a workshop program, and teach my attendees all about a particular aspect of poetry. These workshops are successful, and the feedback I’ve had in the past is that they are fun and informative. If I know what I’m doing, and get properly organised in plenty of time, and don’t get too hot, my like is great, and I am willing and able to do a great workshop! I know other people with MS can run marathons, and I am in awe of their abilities to do that. Maybe with proper training I may be able to do that too, one day, but it isn’t a thing that I’m interested in actually doing.

My idea of sport was playing lawn bowls, but after the MS,  I gave that away. It’s not that I can’t do it, necessarily, but I weighed up my new life with MS, and the playing of lawn bowls no longer seemed to be so important. If I was playing on a warmer day, I would feel the muscle weakness, and knew I wasn’t playing at my best (which wasn’t that fantastic anyway). I was still able to play lawn bowls, it just wasn’t fair to myself or my team to play, when there were other, better players than me. So I gave up the lawn bowls and committed myself to the quite different life of a writer and poet, and I\’m enjoying my life tremendously.

I think having a purpose in life, something you love doing, brings you a great life indeed. Do others have their purpose in life that brings them good things too? I’d love to read about, why not leave a comment here’