Monthly Archives: October 2017

Sitting Down on the Job

When a person has disabilities, it doesn’t mean they can no longer be useful members of their family or community. Depending on how a person’s abilities, there are a huge variety of things people might be able to do, no matter what. If you are blind, you can still hear, and move. If you are deaf, you can still see, and again still move.

Different people have different tolerances for pain, and what might totally incapacitate one person, could be tolerable for another. Abilities, preferences, tolerances, these factors are all important items to consider when taking on work. And of course, that word ‘work’ can mean many different things too. Work can be the things a person does in their own home when looking after the household. It can mean volunteer work when doing things for or with their community. It can mean paid work for self, or for others.

My own current ‘work’ situation is a many and varied thing, and I’m sure my experience is common to other people too, whether they live with disability or not. I am a writer and poet, so my actual I suppose ‘paid’ work is writing things that may be published and so bring in some money.public speaker business card

I am also the editor of a newsletter that goes out in my closest town. This is volunteer work that I do because I enjoy it. But the writing group I’m involved with gets the money for advertising in this newsletter, so that is good for the writing group, which makes me happy.

I also do some of the household work, but my husband, who is also my carer, does most of the work in our home and most of the outside work too. He does vacuuming, he looks after the lawn and he looks after the swimming pool. I cook some of our meals, but he does most of them. I also help with hanging out and bringing in the washing, which we both do either separately or alone. I’m always the one who puts the clothes away though.

phun phlower photo.jpg

Different households arrange these things, I hope, in the way that suits each person. I don’t usually do a lot of yard work, but I’m very chuffed with my own efforts today. I’ve been looking at the lawn where our swimming pool is, and tut tutting to myself over the rapid growth of the clover in the lawn. Clover gives a good green burst, but unfortunately, the kind of clover in that lawn is the type that has burrs. Bare feet and swimming pools go together well, but bare feet and burrs are painful together!

So this morning, while at home with an hour to spare, I got organised and went outside to take on these clover burrs. I put on rubberised gloves, got a nice big container, and the radio, went outside and began pulling up those horrid weeds! I didn’t think I’d get the entire job done, necessarily, but I thought I’d make a good start.

I began by leaning over and pulling up the clover plants, but quickly realised that would probably end up with falling over, so I found a burr-free bit of lawn, moved the container close, and sat down. This was much easier on my body, and I happily pulled up burrs and put them in the container. The gloves, which incidentally my husband/carer had recommended I use, worked very well, and I didn’t suffer from the nasty burrs at all.

I cleverly worked my way from my starting point a few metres away from the chair the radio was on, around and back to the chair, so getting up again was easier, when I’d done enough (and had enough!) after over half an hour of work. I’m pleased with what I’ve done, and happy to have done my bit to make more of the pool lawn burr free!

clover burrs

These kinds of things, tasks that are worked on, in ways that suit the person with the disability, and thought on by others who have tips and ideas to help, these factors blend to make a better workplace, with better results for all involved …

Yes, Meditation Can Help With MS

a rose by any other nameIf you have MS, and you’ve looked around to find things that can help you that aren’t medicine, you may have heard about meditation, and wondered if it might help help. There has been some study into this issue, and various studies have shown that various forms of meditation can indeed help those with MS, in different ways. It isn’t a cure of the problems MS can bring, abut it can bring some benefits.

The link above talks of one simple form of meditation, where you simply focus on your breathing, slow and steady, breathe in … breathe out … and on and on for five minutes. You are to simply focus on your breathing, and if thoughts come to your mind, as they probably will, you simply acknowledge the thing that caught your attention and focus back on your breath.

Many people feel they failed at meditation because of these thoughts that come to them when they are ‘tryng to meditate’. But to consider something as natural like these thoughts coming into your mind as ‘failing’ is wrong. If you can simply sit and breathe, slowly and steadily, focussing on each breath then you are meditating.

Meditation and mindfulness can go together and they go together well. I took part in a month of mindfulness classes, one day a week, for a month several years ago, and I feel more serene about my life, and the things that happen to me, the bad things, seem less troublesome to me these days. Life happens, reactions to life occur, results shape themselves, and so life continues happening …

When you have MS, some of the things that happen can be far from nice,  but when looked at from a broad prospective, as meditation can bring to you, options can come to you from the place you can be as you meditate.

A Bit Like a Show Ride, But Not Fun …

Being in remission when you have MS is like being stuck at the top of the Ferris wheel, with a madman controlling the switch. An invisible madman – when you’re sort of going OK, but you can’t see him, and sometimes the Ferris wheel creaks like it might start up again, but nothing bad happens.

By nothing bad, I mean you can walk short distances, the fatigue is only comparatively ‘minor’, and you are still allowed to drive your car … this depends on not getting too hot though, because if you do, your symptoms will/can come back & hit you.

I have the most common form of MS, RRMS. The other ‘R’ stands for Remitting, so the full name is Relapsing Remitting Multiple Sclerosis. It’s not deadly, fatal, except u need extreme circumstances, but there is no cure as yet. The best those with MS can hope for is to have symptoms reduced by using the medications that have been found that may help.

I use one of those medications, Gilenya, and so far, things are more or less looking good. I have no idea how long it will continue looking good, and I keep a bit of an eye out for new things that are coming along at a steady rate.

So I count myself lucky, I have MS but because of that, I also have the Disability Support Pension and  disabled parking permit, Yay!

But I also have permanently tingly fingers and feet, a bad memory, some cognitive decline, some fatigue, and some other things I can’t remember …

It’s OK, but it’s not great. I try to keep my sense of humour, and laugh at the crazy things I sometimes do!


My MS Update

Today I visited my neurologist, after quite a long time away. He was surprised it had been so long, and was pleased with my positive progress in my MS journey. Apart from issues I have with my cholesterol, which he claims is unrelated to Gilenya, I am doing well, based on my physical abilities.

I am definitely in remission, and glad to be so. There is no way of telling how long this remission might last though, and I am aware that I need to make the best of these good times … MS is like that, of course. It is both relapsing (the bad times) and remitting (the good times). My neurologist and I will see each other more often that the approximately five years it has been. I am going to organise an MRI scan soon, and will be back to the neurologist early next year, to look at the results, and also to see if my cholesterol levels improve since upping my medication for that issue.

I’m glad with these positive results, happy to be going well with my life, and sad for people I know, and others with MS who are not doing anywhere near as well. Health is a mixed bag for us all, and we never know when our bag may suddenly contain bad things instead of good, or vice versa … Life is a jigsaw puzzle, a challenge, a joke, an inspiration, a disaster … One never knows how or when things might change, with health, happiness, family, or friends.

Living the best life you can can always help to keep you going well, in my opinion, and I am quite sure my positive attitude to life is one of the reasons I am doing so well. I don’t sit around moping, I sit around organising good things, both personally, and with and for others. And I don’t just sit around, of course. We own three dogs, and while I am not responsible for all of the things that need to be done to keep the dogs happy, I certainly do some of the things, like feeding and sometimes cleaning up after them …

I get out and about as well. fortunately I am well able to drive my car, and as long as I have that ability, I am able to be involved in the weekly writing group I run, meeting up with other committee and other members for meetings and events, and generally having a good time with like-minded people. I go to MS related things too sometimes, but this has become a thing I do less often, and my abilities have become much better than they were after my first experience with MS.

Life is good!sofa dogs