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.
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.
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!
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.
As a person with the chronic illness, Multiple Sclerosis (MS), who is managing quite well, really, I am a good example of a few different things. These are not in any particular order, and some days one will feel the most helpful than at other times. So here is the list:
Having a nutritionally sound diet
Living with as little stress as possible
Finding the best medication to help
Having a positive attitude in life
My exercise program is very much an on and off again thing. At the moment, it’s mostly very much On, and I’m feeling the benefits of that, I think. I feel capable of physically doing the things I want and need to do, and I certainly like that! I am a member of the MS Society SA & NT and on their Facebook site recently they had a program of six weeks of challenges, where interested people could indicate their chosen challenge, and report on it and encourage others doing their own challenges. My challenge was to do ten minutes of exercise every day, so I tried to switch on our Wii Fit machine to do at least that much or more exercise, with the machine. Six weeks is a good length of time to set a habit, and now I feel as if something is wrong if I don’t switch the machine on in the morning, unless I am busy doing something else. So far I’ve lost a little bit of weight, which is good, but I also feel stronger, which is great!
My diet is pretty well a good diet, I get sufficicient nutrients from eating fruit, vegetables, some grains (not enough probs), nuts, and some meat. I also have a moderate amount of coffee, because I love it, but I make sure not to overdo it, and to only drink coffee later in the day if I am going out, and will be home late. I try to remember to drink sufficient water too (not eight cups of water, because I don’t need that much, I’m a small person, and not a super athelete or physical labourer.
(the plant above is Purslane, a good source of Omega 3 Fatty Acids, which we now have growing at home, and I am trying to eat some of it every day – trying, but it isn’t a habit yet, I hope it will soon though!)
I am currently trying to move into a secular Buddhist kind of life style, and also am looking at the Stoic philosophy tenets. My natural life attitude seems to be that of an accepting realist, one who looks at life, thinks on it, and deals with what life offers to me, or hits me with. I then deal with whatever that is, in what seems to be the best way possible. I don’t overreact, I simply go on with my life however seems the right way to go, thus reducing stress.
(picture by Simon Kneebone)
I was diagnosed with MS in 2010, and my neurologist advised me to use Avonex, which is and injecable medication, used once a week, with an injection directly into the muscle. So soon after learning I had MS, I began jabbing myself in the thigh muscle, left one one week, right one the next week and so on. This went on for around two years, and worked OK, but I was very glad to change medication to a tablet form Gilenya, which is a little tablet taken once a day, every day. This is easy to do, and a much more pleasant way to have my MS meds, that’s for sure. This medication is helping me even more than the Avonex did, and I can see myself staying with this MS med for a very long time into the future.
Having a positive attitude to life. Hmm, I’m definitely a ‘glass half full’ kind of person. If there is a good side to anything at all, I’ll find it, it’s one of my valuable skills! Anyone I meet could become my next good friend, and I treat every opportunity, at the very least, as a new chance to learn. If things go wrong, wow, what a grand time of learning new things that can be! If and when I do something incredibly stupid, which happens more often than I’d like, well at least that’s one more thing I know I should try hard to avoid happening again! I know many people and I’m glad that I can be friends or at least friendly enough acquaintences. Or if they are truly toxic people, I know I don’t need them, and am comfortable in offloading them …
Life is a crazy mixed up bunch of stuff, and I use my life to measure up the good, the bad, and take what I want from it all! I’m currently putting together some ideas, and wise thoughts of my own, with the plan to make it into a published book at some stage, and I have some other ideas for books to come in the future. Life seems to be a very good thing, from where I’m looking!
I write about these things, and I love to talk to others about these things too! If you need a Public Speaker, ask me, I’ll do it if I can get there!
Having a chronic illness is never a super fabulous thing to have. Whether it’s diabetes, arthritis, asthma, epilepsy, or any one of the many chronic illness that can hit a person, it will bring challenges to your life. My own chronic illness is MS (multiple sclerosis).
I’m fortunate to be living well enough, with my chronic illness, and I am certainly grateful for that. I have found a medication (Gilenya), and a way to live my life that helps to keep my symptoms at a low level. I’m careful to eat well (plenty of fruit vegetables, not too much saturated fats or salt), and to exercise my body. I also think good thoughts, concentrating on the good things in life.
I firmly believe in the good that can come from having a postive attitude to life, concentrating on the good things, not the negative bad things. There has been reputable investigation into this very issue, about the good that positivity can do to your body. This article talks on these matters.
I also have a broad circle of friends, see my family members regularly, and am strongly connected with my communiy. These things all add up to a fine, fun, and fabulous life, chronic illness, huh, step outa the way, I’m busy having a good time!
When you have a disability that results in lessened physical abilities, it makes sense to listen to ‘the experts’, doesn’t it? I have Multiple Sclerosis (MS), and the experts have told me that being active will, or at least might, help me to regain, or retain physical ability.
When I was diagnosed with MS, my new neurologist told me to walk for half an hour. I think he meant to do this every day, but that I should work up to that level of ability, because at that time, walking for half an hour didn’t seem to be something I was physically capable of. MS had hit me and my muscles on my right side, including leg muscles were very weak.
My new medication for MS seemed to help me though, and the exercise I began doing helped too. I’m on a new medication now, an easier and more pleasant one, and it seems to be working even better for me. My initial medication had been the injectable once a week one, Avonex. I didn’t like sticking a needle into my thigh muscles, left leg or right leg, but I did it, for two years.
Then a new medication come to Australia, Gilenya, which is a little capsule that you take once a day. It is much more acceptable to me, so much easier to have my G at breakfast time, and no nasty injections in my muscles! I still don’t walk for half an hour every day though, even though my neurologists words, ‘Use it or you lose it’, echo in my mind.
I do try to add walking, and other exercises to my life, every day. I park a little bit further away from where I’m going, or sometimes (not often enough!) I get my hand weights out and do some lifting for a while. I have to admit that in reality, my weight lifting is fairly negligible, so don’t brag about it. At least it’s something though. I certainly feel better, if I am being more active, anyway.
Getting out into the garden, walking around, looking at the flowers and trees, and the vegetables too, these things help me to get sunshine, get active, and sometimes get yummy things to eat. And if I’m in the garden, I am standing, walking, bending over and other active things. Being in Nature is good for me in other ways, good for my happiness, my feelings of greater connectivity, as I think about all of the Nature out there, and my own part is the whole world!
Spirituality, and all of that connecting with Nature stuff resonates for me. I am a secular person, not religious one, but I believe in the benefits being in and with Nature gives to me. I feel happy when I can see trees and clouds, and all of the creatures (not the snakes, I never like to see them, not the poisonous ones anyway!) And of course, being out in the sun can help my body build up more vitamin D, which is good for me. Too much sun though can lead to skin cancers though, so it’s a matter of getting enough, but not over doing it.
A lot of life is like that. Living a good and healthy life is all about moderation, a lot of the time. I like moderation, a little bit of wine every now and then, a small amount of chocolate, little bit of cake or other desserts occasionally, and then plenty of vegetables, with moderate amounts of fruit, meat, grains …
I get out and about, my writing group once a week, and other writing related things too. I take an interest in my community, and do various things to help others as and when I can. I’m also conscious of the mental health benefits to be gained from keeping my brain active too. Writing helps with that, connecting with online communities can help, being active in a variety of social media things, but again, in moderation …
I will continue living my moderately mobile life for as long as I can, sticking with my medication, and staying with Nature too. I love the trees and I hope the trees love me!
I visited my neurologist yesterday, to find out the results of my most recent MRI scan. He was very pleased with my results, and I am too, really. There is no sign of any new scarring, or any other nasties there, so obviously the Gilenya capsules I take every morning to deal with Multiple Sclerosis (MS) are working, and working well. I am certainly happy about that, and taking the little capsule is much nicer than having to inject myself in the thigh muscle once a week, which was my initial treatment option after I was diagnosed with MS.
The injections, Avonex, were of some help with my MS, but the Gilenya is more effective. So my MS seems to be under control to a great extent, and I don’t need my cane or my walking stick, and I certainly don’t need my walker. My neurologist tested my memory, and my thinking skills, as well as a brief test on the strength of arms, and also tested my peripheral vision, all with good results. This is all very good news. So why, I wonder, do I feel dissatisfied?
My neurologist is thrilled with how I’m going with this wonder drug, he’s far more thrilled than I am. Well no, that’s not really true, I’d hate to go back to being as frail as I was back in 2010, when I ended up going to visit a neurologist for the first time, and so met this man for the first time. I never really took to him, but I certainly don’t hate him. He just seems too flippant, and so sure the medicine he’s put me on is the only reason for my better health,. even though he is also happy that I’m good about having a good diet too.
It’s all a bit mixed up in my head. I’m quite well for my age, especially considering I have MS, and my memory is good, etc, so why does my mind get in a muddle sometimes … Ah well, I think it’s time for me to sit back and just be grateful that I have a medication that is easy to take, and is effective. That will be my plan, be grateful, and stop trying to find reasons to be unhappy about all of this. So Carolyn, don’t be an ungrateful little wretch, don’t worry, be happy!