Category Archives: MS

Settling My Mind

I have had enough training and life experience to know that it is important to have a settled mind if I am to get things happening in the way that is best for me. My mindfulness training certainly emphasised that it is only the present moment that is the one can effectively be in.

I can’t change what happened in the past and worrying about anything ‘back there’ can’t do me any good. And I can’t do anything about what may or may not occur in the future either, because, it’s impossible to say what definitely will happen. Stressing about future events unsettles the mind, I know that.

So the only real time I need to concern myself with is the present time, because the ‘now’ is the only real time there is. While the past and the future may feel like times, they’re effectively aren’t, the past is a fluid thing, depending on who’s talking, and the future is a thing that isn’t real, because things don’t become real until they happen. In the future is a mountain of possibilities, but they aren’t really real. They simply may happen, not will happen.

Some things are extremely likely, others extremely unlikely, and all others fit in between the two. The sun will almost certainly rise in the morning, that is true, but if the planet were hit by something huge, kabang, no more Earth for the sun to rise over, and that likely event may be taken away by an extremely unlikely one.

waterfalls during sunset

Photo by Sachin C Nair on Pexels.com

Thinking about these things is a bit of silliness, that I am indulging in at the moment, probably because my mind is unsettled, right now. Like other people in Australia who have MS, I have NDIS funding available to me to assist in my life, so that I can live a good life, even though MS is taking away from me some of the good things in life. This funding is good, and I am grateful for it, but the process of working my way through getting the money, oh boy!

Using a system that makes sense, I assume, to those who set it up, isn’t necessarily easy for other people, me, for instance. I went along to the NDIS website earlier to today, to do something, then left a while later, tail between my legs, with no idea really about what on earth I was trying to do … It isn’t an impossible thing to do, to work it out, and I have support to assist if I can’t work it out myself, but it is definitely unsettling for my poor addled head!

I’m going to have another look at it later, and see if it makes more sense. Another cup of coffee might help. Actually another cup of coffee always helps! Coffee is my go to support when my brain needs a boost, as it does right now! It doesn’t settle the brain, but gives me extra oomph to get the thing done, and maybe my brain will settle better once it’s all finished and done!

 

 

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After Recent Neuro Visit

Today I had my annual visit to my neurologist, and I have to report I am more or less happy with the result of it. I had my muscular abilities tested (arms and legs) my eyes too. He always does these tests.

I measured up well enough that he certainly seemed perfectly satisfied with how I’m going, as I am too, for the most part. But visits to this specialist tend to leave me slightly dissatisfied, in minor ways. I feel it’s because I feel like I’m wasting his time, perhaps, and my own time too.

What do I expect from my MS specialist? I’m not sure. I do know that he is good at his job, and knows his stuff. I am on the best medication for my Multiple Sclerosis (MS), and that is because that is what he offered to me, once it came out in Australia. Gilenya has been great for me.

My blood test results are good, and I feel pretty good too. I certainly have some problems, health-wise, but only minor ones, compared to what many are faced with, who also have MS. I do feel that particularly in regards to my mobility, I’m going well. There is certainly no need for a wheelchair for me, no need at all.

grayscale photo of wheelchair

Photo by Patrick De Boeck on Pexels.com

I don’t do marathons, that’s true, and doubt I could manage one, but doing marathons has never ever been on my list of things to do. If I wanted to do one, I feel that, with a good physio advising me, I could do one, (after lots of training!). It isn’t something that interests me at all though.

I’m more a brain type, not a brawn type. I only want to be physical enough to be able to walk around, drive my car, and get lids of jars if my husband isn’t around assist! If I were to lose my ability to get around, that would be a huge impact on my life, for sure. But at this stage of my life, it isn’t looking like that will happen, not for a long time yet, anyway.

The issues I have with MS that are troublesome tend to be related to incontinence, and that isn’t something that’s terrible pleasant to talk about, but we did discuss it briefly, and he reminded me it’s something we spoke of at my previous appointment. I indicated the issue has worsened a little, but when he suggested a couple of things, I let him know I was happy enough I had the problem under control, really.

When he mentioned Botox as a possible treatment, I let him know I was definitely not interested in that. I feel my problem is more a muscle related one, and doesn’t need Botox, if anything, it may benefit from training in pelvic floor muscle exercises. Apart from that, as I told my neuro, I have funding from the NDIS to assist with pads to assist with continence.

So basically, I actually have things under control, and am not interested in the things suggested. Is that why I feel that tiny bit of dissatisfaction? These visits to see my specialist are not free, and I didn’t have private health insurance, they may be less than easy to pay for. So do I feel I’m wasting my time and my money going to see him?

Well sort of, to some extent, but not really. I think it’s good that there is feedback between my GP and my specialist. My GP does the getting my blood tests organised, and has the results sent to my neuro. My bloods are good, going by my most recent tests, no negative affects on my liver, etc. All good.

So really, going to see my neuro annually is fine. If and when I have any more pressing issues, I know he’s there to investigate things that are beyond my GP. Do I need any more than that? No, not at the moment. Maybe my whinging is because most of my health issues are simply because I am getting older, and I don’t like that fact?

Yeah, that’s probably that, as well as my neurologists less than soothing ‘bed-side manner’. He is blunt, not rude, or anything, just straight forward and honest. Ah well, such is life, I’ll suck it up and be grateful for my good fortune, and stop being such a sook!

 

 

Why Disability is not the End!

Yes, I have MS, that is true. But I have a fantastic Creative life, with many exciting things happening for me, and my creative friends! I have other friends with various disabilities, but I also have an awesome group of friends who help me to do awesome things. My MS is not a part of that group’s interactions, although most of them know about it.

Instead, I go about living my life in the best and most interesting way possible I can, doing my thing, sometimes scaled back somewhat, but still creative, interesting, and yes, awesome too! I am the President of a fantastic writing group, who do awesome things, and as long as I don’t have to stand up for too long, I keep on keeping on, with them all!

I have a good range of other abilities, which more than make up for the ‘disabilities’ I have. Fortunately, my actual disability level isn’t as bad as it could be, but I’m sure that is because I work hard to make sure I don’t get too tired, or too stressed. A good gentle, but inspiring life, with lots of great things to look forward to is my way to a great life.

I feel sorry for everyone who is not as fortunate in their life as I am. Writing and being with others who love writing is one of my favourite things in life, and when I can do that, I am one happy little disabled person, sitting with friends, chatting, writing creatively, reading out my writing, joyful times!

I have a great life, and wish everyone could find as much joy in their lives too!

New ‘Normals’

One thing many people don’t realise is that people with a disability or injury, may never return to how they were ‘before’. How they are right now, may be as good as they’re going to get, and that is their new ‘normal’. Expecting them to be how they were ‘before’ won’t help and is likely to be a hindrance, bad for them, for you, for everyone.
I’m not writing this as a woe is me thing, because in fact I’m going well, compared to some other people living with what I have, but that is not something I can rely on staying that way, and I am a lucky person, with plenty of people who help me to live a good life, with Multiple Sclerosis.
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Many other people with this disease are struggling, with no real help from anyone, and I feel for anyone trying to live their life like that, because if you have MS, stress can make everything so much worse. I have my husband, my family, many good friends, and some absolutely great friends. I also have the NDIS which I will be using more often, later in the year.
I am able to do do many things I love to do, and this is definitely an important aspect of why I’m doing well. If I had had a full time job when I was diagnosed, particularly if it had been a job I loved, but was getting harder and harder to do well, that would be a very stressful thing.
I had more or less retired from ever having a full time job and have been happy doing volunteer things related to writing, as well as being a freelance writer in a (very) casual way. This means if I don’t feel up to doing something, I don’t have to do it, almost always. I can make a bit of money from my books, or from doing online surveys, which I have a silly love for! These little bits of money help me to feel worthwhile, financially, and my volunteer things help me to be useful in the broader community.
These are good things for a person with a disability. Feeling useless never helps anyone, and doing things (as long as they are still enjoyable and feel good to you), this is a great positive thing, that brings on feel good chemicals in your body, endorphins. When you help other people, or when others help you, you can have a release of these good chemicals in your body, and feel good, for hours afterwards.
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And while these are good things, they are not going to bring back to where you used to be, if, for instance you have MS, as I do, or have for instance an acquired brain injury. The best way to go with people dealing with these things is to talk with them and listen, actively pay attention, and try to understand what their ‘new normal’ is. These people will know themselves better than anyone else will, to a large extent.
If someone says they can’t do something because they’re not feeling like they can, believe them. Don’t cut them off, but don’t harass them either. Just because they did something one, day, doesn’t mean they can necessarily do it another day. And just because they didn’t couldn’t do it one day, doesn’t mean they won’t be able to do it another day. Just ask, they will know better than anyone.
So I have a good life, I understand my abilities and my limitations, and I do my best to extend my limits as much as I can. I am living a good and worthwhile life!

Doing MS Meds Differently

It always surprises me when I read other people (usually from countries other my own, which is Australia), don’t understand that there is a protocol regarding the MS medication Gilenya, regarding how long you can go without taking it, before you have to go through the initial process again.

That process isn’t an onerous one, but it takes most of a day, from beginning to end, with regular checks on the heart rate regularly over the 6 hour process. I don’t think you need to go through the eye checks the second time, before being allowed to begin taking it again.

Whether you do or not, I would certainly not consider stopping taking Gilenya, not unless there was an extremely bad effect from it.

The Strange Things I Know About

Call Me the Poo and Pee expert!

I had a session today, with one of the people at the MS Society, in their new venue. Because I’d never been there before, I left in plenty of time, and found the place easily, so was early. My phone ‘told me where to go’, politely of course!

Because I was there early, I was able to have a cup of coffee and an apple. They were both free, which is always nice, when you’re living on the Disability Support Pension! The apple was there in a delicious looking fruit bowl, to help to promote Bowel Cancer Awareness Month, and because I was at the MS Society to discuss continence issues, it was completely pertinent.

Continence, or more correctly perhaps, incontinence, can apply to both the bladder and the bowel, and it means when, what I’m going to call pee and poo, arrive too fast, when we don’t want it to, then the resulting unpleasantness can occur.

And of course, we all know just how unpleasant poo and pee can be, when you’re not actually sitting on the toilet seat, (or squatting outside in the bush). And unfortunately, it seems to be true that people with MS are more likely that other people to suffer from these embarrassing issues.

Getting help

The reason I was at the MS Society, was to look into the best options available to assist with dealing with any potential messy problem. Incontinence isn’t a really big issue for me, but it is a sometimes problem, for sure. If I can get a pad/liner to help me, I want to get the one that suits me the best.

I have been approved for financial assistance from the NDIS, and I am glad that I am able to be reimbursed for my money spent to keep things nice! The MS Society worker is looking into method of payment for continence support items for me, and will get back regarding it.

And I wanted to discuss the whole incontinence thing. From how the discussion went, I’m doing the right things, to assist my own body with these things. I drink plenty of water, and have a good amount of  fibre in my diet. The correct amount of water is 30ml for every kg of body weight.

How Much Water is the Right Amount?

So my weight is around 56 kg, so I should have around one and a half glasses (250ml) of water. This amount of fluid can include two cups of coffee in a day, but after that, the caffeine causes excessive urination. So it looks like my current amount of water/fluid taken every day is about right.

I usually have 2 or 3 cups of coffee every day, with about 4 or 5 glasses of water. Another way to check on whether intake of water is sufficient, is too check the colour of your urine. It shouldn’t be the colour of cider, or apple juice it should be a lighter and clearer straw colour. So, if you want to check your situation, just take look, before you flush!

Drinking enough water can assist with preventing Urinary Tract Infections too, and that is not a pleasant thing to suffer from at all. Since I began drinking more water over the past couple of years, I haven’t suffered with one of those nasty infections, and I am very glad of that.

In summer, especially if you spend time out in the heat, your sweat will take away some of your water intake, so you must remember to drink more water. Also if you are working out, running, or being active working in the garden, the yard, and so on, then you must keep up your water intake.

There are many kinds of drinks for sale to ‘keep you hydrated’, but simple tap water is the cheapest method, so really, you don’t need any fancy drinks, just water. If you want water with a bit of kick, try a squeeze or squirt of lime of lemon juice, delicious!

Good, Bad, or Useful? Look at your Life …

Is it mankind’s greatest mistake, to believe in the advertising mantra: ‘I have these things, therefore I am?’ To have many things, equates to nothing really, if you don’t have Self. Self respect, self knowledge, self actualisation, self belief …

As a person dealing with a few challenges in life, as many do also, I know, that things can quite easily change from good to woeful, sometimes. Illness, abuse, disrespect, financial troubles, they can pile up and up until it seems nothing can ever make things go well again. My previous blog post on this blog was this one, where I was touching on the concept of thinking deep things. I suspect this blog post here is even deeper than that previous one.

If you give in and do nothing things won’t change. But if you try things out, as they come along, changes of different kinds are much more likely happen. You need tools though, if you are going to make good and lasting changes. Family and friends who truly care about you, that’s the best tool. These are the ones who you have to trust, and believe. They may be watching you as you destroy yourself, as you hold, perhaps, to toxic people who don’t really love you at all.

If you’re wondering about these things, and whether you life could be better, this could be a useful first step:
Make a list of the people in your life, family, friends, and others. Mark each person as Good Bad or Useful
Then write up all of the Good people, the Bad Ones and the Useful.

Some of the people can be in more than one list, if so, write a short note about when they are in each list. For example you may put down a workmate who has been fun to be with, but who is also competing for the same jobs you are … write it down.

Then go through your lists again and this time, list the ways each person is in that group. You may realise a person in your ‘good’ list actually has more ‘bad’ things … you have to think carefully, and weigh it all up.

Fun to be with, but never pays their way, leaving you happy for one night, but unable to pay your rent? You have to think about it, and think hard, looking at what is in your own best interests. I hope you realise which list they should go in.

You may know others who are not much fun at all, really, but they are dependable, and will be there if you need them. These are people to cherish, get to know then better, learn what they enjoy doing, you may be surprised, and find they become real friends, in the good times, not just the bad times.

Think about your Self. Who are the ones who care about who you really are. Who can help you understand how to attain the deeper things that may be there for you? Who might show you ways to make yourself proud first, so others can see that, and realise you are worthy of respect …

If there are toxic people in your Bad list, they may not like the new you, but hopefully, you will have people in your Good or Useful lists to help you cut out the toxic ones, and move away from them.

There are organisations to help in some ways too, explore them, add them to your Useful list, or even you Good list, if you can make good connection with them. Community groups, service groups, medical people, these can go in your good or useful lists.

If there are organisations from your past that lead you down bad paths, add them to the Bad list too. There may be a venue where things have shallow appeal, but with bad results, such as hotels where toxic others hang out, or gambling establishments where you have lost much needed money. Add them all to your Bad list.

Doing thing like this, from time to time, when things seem headed in bad directions, they can help, certainly as a starting point. If you get help from others, these notes
can be invaluable resources to share with you helpers, who will be ‘in the loop’ and understand your situation better, and so be able to better target their assistance.

I believe it’s people, not things, that are the most important. I’d love to know what you think about this.