Tag Archives: fatigue

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.

Advertisements

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

How Long is a Piece of String?

The question of how long will I be in remission, is a lot like the old one about the piece of string? How long is a piece of string, well, it depends … It depends of how it’s being used, whether it’s frayed and worn, and so on. Similarly, how long will it be before you might go from the relapsing stage to the remission stage, when you have Multiple Sclerosis (MS).

At the moment I seem to be happily in the remission stage of MS, and have been like this more or less for more than a year. I say more or less, because I have had brief interludes of relapsing, but only very brief times. These are called Pseudoexacerbation – it means your body is feeling fragile and your MS symptoms jump up and hit you. This may be caused by too much stress, getting too hot, having an infection, being overly fatigued, and for some people with MS intense cold and do the same thing. When the cause goes away, you go back to feeling your version of ‘good’.

I work hard to reduce the chance of stress in my life – I try to adopt an easy going attitude to life, and just go with the flow as much as I can. I make sure I can keep cool when hot weather is attacking, as it seems to be in my part of South Australia at the moment. Air conditioning and shade are my friends! I try to not overdo things, and if I have, I know I have to rest until by body forgives me again! above the fish pond

These things may take merely minutes to work for me (or anyone with MS) or they may take a day or so or anything in between, but if it is a Pseudoexacerbation, it will go away and not become a full on relapse, and that is a very good thing! A full on relapse could lead to a brain that has forgotten how to work properly, with memory and cognition almost switched off, with overall muscle weakness, and with terrible feelings of bleuhh…

This current remission I am having is a joy for me, and I am very much hoping this particular ‘Piece of String’ is longer than the length of the journey to the moon and back! Is it because of my current medication, my positive life attitude, my increased levels of exercise (sometimes), or is my body just loving my healthier diet and working harder to fix the damage other parts of my body are doing to me? I love my writing life and if my brain is on the frizzle, I wouldn’t be able to write books and things, like the one in this photo below!

filename - Copy

I haven’t had an MRI for some years now, and one of those would indicate how much damage has been done to my Central Nervous System. And my GP has indicated to me that it would be good if I went and saw my neurologist again, so he can see how well I’m doing on the medication he prescribed for me back in 2012, when this ‘wonder drug’ (for me), became available in Australia at an affordable cost. This drug, Gilenya, is a tablet I take every day, rather than the injectable drug, Avonex, that I used to inject into my thigh muscle once a week. The Avonex worked OK to help with my symptoms, but the Gilenya is working much, much better …

So going back to the original question, how long will this remission last? The answer can only be “Who knows?”. Gilenya may go on working well for me forever, and I may never have another relapse again. At the moment, I’m just loving what I have, and working to try to keep it happening as it is now, with my body able to walk and drive my car and my brain able to more or less do all of the things I want it to do!

This is my happy MS story, and I hope others out there have their own happy MS stories too, I’d be glad to hear about it if you do. And if your story is not so happy, why not share that too, sometimes writing about bad things can take some of the bad away …

Remembering How Things Have Been

I was looking at another of my blogs this morning, and found a blog post that is very much suited to this blog. I sometimes accidentally post the incorrect thing to a blog, as in this case. This error may be caused by having too many blogs, not paying enough attention to what I’m doing, my MCI (Mild Cognitive something that starts with an I – Impairment, I think).

What ever the reason (and it could just be age …), this is where you will find the blog post I’m talking about. In the post I talk about Mick the Stick, the mobility device I have that assists me when needed to get about. As the time of writing the post in August 2013, I was three years into my new life with Multiple Sclerosis, and getting more used to walking with a walking stick.

On the day in question, I was obviously feeling stronger, but still a little uncertain about my footing, so took Mick the Stick with me on a walk I wouldn’t even think about using him now. When I re-read the post, prior to decided to put up the link to it on this post, I wondered, but then remembered how frail I had felt at times with my MS. Frailty isn’t with me these days, except perhaps at night after a big day of being out and about.

I am so glad my medication and whatever it is, is working well for me, and I can almost forget I have a chronic illness. Except of course when I forget a word I know that I know, which is frustrating, but it also reminds me not to get too cocky about how ‘well’ I’m doing with things.

And then of course there are the rushed trips to the toilet which remind me even more strongly of some of my less lovely MS symptoms. Any kind of incontinence is a very nasty thing to have to deal with, and I am grateful to the government for the financial assistance to buy the items needed to deal with the issue.

Does anyone else have thoughts about the progression of a chronic illness they’re living with? Please feel free to leave a message in the comments section …

 

 

MS Fatigue – More then just Being Tired

If you know someone with MS, you may have heard them say they’re suffering from fatigue, meaning MS Fatigue. If you don’t have MS, but replied that you get fatigue sometimes too, you have proved that you don’t understand.

When you have MS, being a bit tired can be fixed up by a sit down for a while, the same as anyone else. When you have MS and you’re fatigued, that bone deep desperate, that sets in and just won’t go, then you know what fatigue truly is. This kind of fatigue, MS Fatigue, will need more than a sit down ‘for a while’ to get over it. It may need a few hours sleep at the end of the day, and then a good night’s sleep after that.

This linked article describes it well. Some days, you know you don’t have a full tank, and you won’t be able to get anywhere close to where you may have wanted to go. Or as far as other people want you to go. Maybe the next day, you could do it, but with that crushing fatigue, you know you have to stay home and rest.

It’s a frustrating thing, for both the sufferer and for their loved ones too. I can imagine it’s frustrating if you employ someone who has MS, and sometimes can’t get done the work you want them to do. Be assured that person is frustrated too, and isn’t just casually staying home, or working slowly. The issues need to be properly explained to employers, I think, but I know some people keep their MS diagnosis, and just try to ‘soldier on’.

For me, this was not an issue. I left the full-time paid workforce after the birth of my some nearly 22 years ago. I’ve done some paid work since, but only part-time, and not much since I was diagnosed with MS in 2010. I’m a writer, and some of my writing brings in some money – but not a lot of money. Fortunately, I am living with my husband who is also my carer. He has enough money for the three of us to live a reasonably good life. I’m eternally grateful for that. If I had money stresses in my MS life, Id be in a much worse position.

I also do volunteer work, related to writing. I have great friends, both other writers, and assorted others. I plan my time, staying home if fatigued, but getting out and about when I’m feeling good.

That’s how my MS life goes, I’m doing lots of interesting things, but I know that could change at any moment. I’m living a relapse free life, going well with my current medication now. Next week though, I don’t know I’ll still be doing as well. and I have no way of knowing what the next week may bring. By good planning, and by listening to what my body tells me, I’m doing well. I don’t take advantage of it though, and I do my best to eat the right things, and to do some exercise. If I look after my body, I hope my body will keep doing the right thing for me.