Tag Archives: family

What Disability Can Be Like

When a person has a disability, and receives payment from the government, to assist them in the living of their daily life, there are expectations from their family, friends, and the greater community. Some of these expectations are fair enough, others though are damaging and can cause further harm to someone who is already ‘doing it tough’.

If someone can walk five miles on one day, then other people may think they will be able to walk that distance, ignorantly assuming there was no harm to that person, or at least challenges to get over afterwards, for their feat of the day before. This misapprehension is the cause of unrealistic expectations that can lead to blame being laid, and stress caused to the person with the disability.

It is a scientifically proven thing, that stress can cause damage to a person. When you have an auto-immune disease, the last thing you would want is further damage to your body, which is already stressed.

http://www.ulifeline.org/articles/450-good-stress-bad-stress

Expectations lead to unrealistic results, and when these unrealistic results aren’t met, it leads to more stress coming from others, and from the person themself. Being kind to themselves is a much better way for people with disabilities to treat themselves, and also for the people who know them to treat them.

If you see a person who seems to be ‘slacking off’, do you know that is true? Could they in fact be resting so that they are able to do what they want or need to do? Please don’t judge without knowing the truth of it!

For instance, personally, I am quite active in my community and in the poetry world in my part of South Australia. But to be able to do the things I do, I am fortunate to have my husband, who does almost all of the usual things a woman might do every day, in terms of housework, dog walking and so on. He does the hard work so I am able to do the things that bring good to my life.

Gardening, for instance is something I like to do, as is public speaking. clover burrs

me making point at book launchI do what I can, without over doing it, because I have had far too many days after, when I was only able to get up, and go from one end of the house, if that. I have Multiple Sclerosis (MS), and one of the worst after effects I have from MS can be the fatigue that can come from overwork. complete bone-weariness is terrible, and I want to do all I can to avoid that. It is much more that simply feeling a bit tired.

Never assume you know what life is like for a person with a disability. Unless you have that disability, you probably will never know.

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Living a Good Life

Is living a good life the answer to it all? And if it is, what is ‘a good life’ anyway? Two good questions and I can only hope I have the answers. I can’t answer for everyone, just for myself, and I can honestly say I feel I am certainly living a good life. I’ll talk about why, and others can decide for themselves whether my life is a good life.

First up is this thing that I have, that many might say vcould prevent the living of a good life. I have Multiple Sclerosis (MS). Bang – surely that prevents the possibility of a good life? No actually. MS if it is hitting a person hard, can causing them to lose their mobility, so they are stuck in a wheelchair, that would make the good life much harder to attain.

But having a medication that works well for you, that makes it much easier to find that good life. Having finances and relationships under control are important too, as are eating a nutritionally good diet, and getting some exercise. Having things to look forward to in life, that’s another important thing, and feeling that you are important in the world, either because you have a job that satisfies you and that you do well, or because your family love you and feel you are important in their lives.

If you can have these things with no stress, that is an excellent thing in life. I feel that living a stress-free life is perhaps the most important thing there is in life. When things are going well, and you feel untroubled, your body can function well, especially if you are doing the exercise and eating well with it.

I do a mindfulness nedication from time to time, taking moments to be at one with Nature, breathing in the good, and breathing out the bad, mindfully being at peace with the sky, the trees, with myself. Breathing in slowly, and out slowly, just for a few minutes, when I think of it, it all adds up to a stress-free time, which further leads to more stress-free time, and so onto a stress-free life.

I feel I am important to my family, my close friends, and my wider circle of acquaintances, and of course I’m important to my sweetest friend, our dog Missy! IMAG0272She has a chronic illness of her own, Canine Dry Eye, which needs treatment morning and night. This is my most important role in her life, and I certainly feel important because I can do this for her, putting drops into her troubled eyes. Missy recently had medical treatment, and needs more soon, having a cared for pet brings these things, as they age. Missy will get the help she needs, for as long as we are able to provide it, and if it becomes too difficult, we honestly know we’ve done our best for her.

Pets can bring much joy into our lives, and certainly having dogs in my life for the past thirty years has been a wonderful thing. My illness has been with me for the past ten years, but the dogs have been with me for much longer, and so my good life is certainly helped by having the wonderful dogs I’ve shared my life with.

Other people have other ways to live a good life, I’d love to hear about it, leave a comment here!

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 …

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

Wellness is a State of Both Mind & Body …

I am well, sort of most of the time. I say ‘sort of’ because I have MS (Multiple Sclerosis). which causes some problems for me, in various degrees of trouble. At the moment, I’m feeling more or less OK, able to easily stand up and sit down, and with a reasonable amount of energy available.

sofa dogs

Earlier today, while being able to stand up and sit down, I was feeling extremely tired (fatigued), and I lay down for a while when I got home from visiting my mother. I was able to get up again though, and then go outside with my dogs, who had all been left inside the house, and needed to go out for a toilet break …

a rose by any other name.jpg

I am happy with the various things I do in my life, my various volunteer things, and helping a little around the home, assisting in cooking our meals occasionally. Once upon a time, I did almost all of the housework, feeding and cleaning up after the dogs, and cooking the main evening meal and often lunch on the weekend too. Then MS came into my life, then my husband retired and took on the role of carer for me as well as husband.

Things are working out in good ways, mostly. I have the things I’m interested in that my husband isn’t, he has his things he’s interested in that I not, and there are other things we’re both interesting in, that we do together. After being married for well over thirty years, things are going well, but I know that one shouldn’t take things for granted.

I’m grateful for all of the things my husband does around our home, and I do my best to make sure he knows this. He is older than me and has his own health issues, but fortunately is also well, most of the time, more often than I am. Even though my health is definitely affected by MS, I do my best to have a positive attitude to my life, and my happy attitude, I think, helps to keep things friendly and happy in our home.

I’m interested in the ideas about how your attitude to life, whether positive or negative can have on your life, both mentally and physically. The article explains more about this idea, and it’s certainly one I believe in. My life is a good one, I have family and friends who love me, and I have few people who don’t like me, as far as I know … If there are more people who don’t like me than I realise, that’s sad, but I won’t stress myself about it, because I know how badly stress can affect my body.

Happiness is much better for me than stress is, and not just for me, having a happy or positive attitude is good for us all. Friends, something to look forward to, feeling you’re doing good things for yourself and for others, these all help a person to be happy. Happy mind, happy body. Do you have things in your life that you look forward to? Please share these happy things with us all here 🙂

above the fish pond