Monthly Archives: November 2016

Whether the Weather …

Most people have a preference for one season over another, or one kind of weather conditions over others. ‘Good weather’ can mean different things to different people, depending on what they like …

Most people with Multiple Sclerosis (MS) have more problems with handling the heat than they have with cold weather. Higher temperatures usually mean MSers stay indoors with the air conditioner going, and if they have to go out, they have air con on in the car and head for air conditioners or at least shade wherever they have to go. I’m certainly one of those people.

aleppo pine

If the temperature where I am gets up over thirty, I usually start to feel weaker and a bit ‘muddle-headed’. My memory is affected and I feel unable to think properly. Having a cool drink, and cooling myself down in some way is needed before I begin to feel more ‘normal’ again. I know all of this and I do my best to make sure it doesn’t happen to me, so I keep an eye on weather forecasts and generally I stay at home where it”s cool or only go out on hot days when I know the place I’m going to will be cool enough, or that at least cool drinks will be available.

One thing I’ve found is that barometric pressure changes seem to have some kind of effect on me. It’s difficult to describe, but I feel unsettled and weak then too. Stress is probably my biggest thing that really makes my MS symptoms kick in. If something is stressing me out, I feel like I’m going into melt-down, and I have to get out of the situation as soon as possible.

Fortunately I am good at avoiding stress. I have a laid back, ‘she’ll be right’ attitude to life, which, put together to my mostly mindful attitude to things, keeps the stress level low most of the time. Bad things can happen, but good things happen too, and the bad things are rarely as bad as they might have been, so I remember that and stay calm, almost always.

I think this kind of attitude is good for everybody, not just those of us with MS. I’d be interested in knowing how others feel about this … Please leave a comment below:

A List of Woes, or Not?

Well, obviously the first thing on my list of woes would be the fact I have MS (Multiple Sclerosis). This disease is a chronic illness that can cause muscle weakness, paralysis and more. The generally held thing is that these symptoms will get worse over time, so that being OK will be followed by needing a walking stick then a wheelchair. This can take a differing length of time, but there is no cure …

I have certainly had muscle weakness, in fact that is the symptom that lead me quickly to seeing a doctor and then a neurologist, who gave me the diagnosis of MS. Instead of being horrified at this diagnosis, I was relieved because I had been convinced either I had a brain tumour or I’d had some kind of stroke. I knew one person with MS, and she’d been living with it for a long time.

So MS didn’t seem that bad to me really, even though I didn’t know an awful lot about it. Six years later, I know a lot more about MS, and how it is for me. I also know a lot more people who also have MS, and how it is for them. Some of those people need a wheelchair, some of the use a walking stick, so have not aids to assist with walking and some of them go on long walks or run marathons. MS is a tricky thing, and people are affected in different ways, depending on where in their central nervous system they are affected, how well they are doing with their medication (if any).

It can also depend on their attitude to life, their exercise level, their diet and just plain luck. I am doing well, I eat a nutritional diet, most of the time, and I try to walk around a bit (sometimes I get into Wii Fit exercises, and I always feel a lot better when I am doing the exercises). Why don’t I stick to doing the exercises? I don’t know. I suspect as well as having MS, I have built in laziness …

People sometimes tell me I am amazing because I do so many things. I suppose it might look like I am, but I know all of the things I don’t do, that I probably could or should be doing (including those exercises!) The things I spend most of my time doing are the things I love to do, mostly things related to creative writing. Writing, and helping others to write creatively brings me joy, joy helps me to have a positive attitude and having a positive attitude is good for my sense of well-being.filename - Copy

I enjoy many things in my MS life. One of the things I enjoy is blogging. It’s a form of writing where I can write anything I want, and connect with others from all around the world, potentially. This seems like an easy way to have some kind of influence of people, and to help people who perhaps have received a diagnosis of MS, and are wondering what to expect. It can also show things about how I live my MS life, and can show how it really is to those who don’t have it.

If you have further thoughts of any of this, please leave a comment below …

Talking With or Talking To

I had a bit of a revelation some time back, when I re-read a comment I’d written on someone else’s Facebook page. I wrote something about ‘talking with someone’. That word WITH rather than the more usual TO is the key, I feel, to good communication.

When you’re talking TO someone, your own words are your focus, and you are more interested in putting forward your own view. When you are talking WITH someone though, there is more room for the other person’s views, you are more open to hearing them, and considering what they are saying. You can have a conversation, each thinking on what the other is saying.

All too often, talking to someone is just two people spouting a monologue, rather than two people having a dialogue. You can spend an awful lot of wasted time talking to someone, where neither of you gain anything new and useful. When I first found out about my MS, I gained a lot of knowledge by asking questions and listening.

Whether it’s medications, diet, exercise, life skills, whatever, when you discuss things by talking with people, the knowledge expands for all arrive. This is why I feel peer support groups are so valuable.

me making point at book launch

If I had spent my time talking to others who already knew much about MS (those with medical knowledge, or with lived experience), then my own knowledge wouldn’t have increased, when I was at a time when I need to know more about this disease. When you are talking with someone, there can be a sharing of thoughts, with wonderful ideas arising, truly a case of a thing being greater than the sum of its parts.

In this photo, yes, I am talking to people, but I gave the audience plenty of time for their own questions at any time, and afterwards there was coffee and cake, and plenty of time for everyone present to talk with me and everyone else there. Talking with, not talking to!

I’m interested in what others think about this idea …