When you have a chronic illness, such as Multiple Sclerosis, it can become almost irritating, having to deal with people who fail to realise that you aren’t faking, and you really do have an illness that is limiting your life. There are tests, that are done to see the damage that has occurred inside your body, the scarring on your central nervous system that is stopping nerve signals from travelling freely through your nerves.
This can cause a variety of different consequences, depending on where the scarring (or lesions) are. It may cause problems with eyes, weakness in muscles, numbness in hands, feet, knees, lower legs, speech problems, problems swallowing, and a variety of other problems. Memory, and other problems relating to cognition (thinking) can also occur.
These problems won’t always be there, some days a person with MS may feel alright, others they may feel very much affected. It may depend on the heat, or on their level of stress, or all manner of other things. Most people with MS would agree about the heat, but there are some others who are affected by being too cold. But only the person themselves know how they are being affected.
Some people with MS may be able to work full time, others not, or not all of the time. Some people with MS can run, others are unable to walk at all, and there are many levels of mobility in between. Again, there is no telling who will be affected, and in what ways. It is thought diet can have good results for people, and certainly good healthy food is good for everyone, but eating well is not going to help everyone with MS.
Some people may need a mobility aid to get around, a walking stick, or a wheelchair. Some may only need the aid in certain circumstances, such as when they are suffering with a relapse. There is no way to predict when a relapse may come, or when it will end again. MS is an unpredictable disease, never think you know how a person with MS feels at any time, they may be fine one day, and badly affected the next.
I applied for and was successful in getting an NDIS plan. We are self-managing the plan, and yesterday had a meeting with our local area co-ordinator, so we all know what we have to do next.
I made some phone calls yesterday, and have got the first thing happening, which is good. Talking to someone who understands the whole NDIS thing, with the relevant forms to fill in and so on works much better that blindly trying to get things happening, without knowing if they’re things that will be paid for …
There is money there, and while I may not be able to get what I was hoping for, there will be other things available that I hadn’t realised could be paid for. This is a good thing, having money from the government is what we all pay taxes for, and we all deserve to get what we are allowed, when we need it.
I am thinking about the possiblities, while waiting to receive back more information, and in the meantime, I’m enjoying myself, doing one of my favourite things – writing poetry. I have joined up of a thing called #poemadayfeb, where interested poets write a new poem every day in February.
The people who have organised this, did it last year too, and I thank them for their work. They have written a list of poem prompts, one for every day of February, and then two extra ones, just in case. So every day, at some stage of the day, I check out what the ‘prompt’ is for this. Then I settle down and write my new poem.
The poems I’ve done so far have been interesting … A variety of poetic styles, & subjects, with some themes re-emerging as I’ve gone on, climate change is there more that once, family too, and some quite personal things.
I am letting at all come out onto the page, and then editing to make it beautiful, honest, authentic … Then I am putting them onto my Writers blog here I plan to put all of these poems into a little chap book, to sell to my adoring fans (both of them), for a teeny, tiny price! Haha, the life of a poet is not that of a wealthy person, that’s for sure. Not wealthy in monetary terms anyway, but is experieces and understanding, very rich.
I am living a good life, with many positive things happening. I think the most important thing about me and my life is that I am Chronically Positive!
Having things to be proud of is great in life. Whether the ‘things’ are actions you’ve taken, or races you’ve run, or anything really, it’s great, and makes you feel good.
Pride is one of the ‘7 Deadly Sins’ but the pride I’m talking about, is the good way you feel when you’ve done something good, and especially if others have seen that good thing, and are proud of you for it too. That is certainly not a sinful thing.
Gaining the approval of others is not the only reason, should never be the only reason to do good things. Being proud of yourself is enough, and you should always acknowledge to yourself, the good things you do.
When you are troubled by illness, or with any kind of disability, it is still important to have things to be proud of yourself for doing, or being. If you are badly affected, sometimes it’s the simple things in life that will stand in, as things to be proud of.
I remember somedays, if times with my MS have been troublesome, I will tell myself I’m proud just because I made it to the toilet without wetting my pants!
But I am able to do so much more than that, and at the moment I am extremely proud of myself for the writerly things I’m doing. At the start of the year, on News Years Eve, I decided that I wasn’t going to do the New Years resolutions, but instead, that I would have a GREAT YEAR for all of 2019, and I would do the best I could do.
So far, I’d say I’m living up to this. I am working on a novel I wrote the first draft of, ten or soyears ago, and then put it away, with only a some minor editing. I found that draft novel the other day, and I’m now doing a second edit of the story, and I hope to try to get it published this year. If I can do that, I’ll certainly be very proud of myself!
Having MS may limit me in some physical ways at times, but my brain works, and I love writing! This novel isn’t perfect, not yet, I need to write many more words to get it to the required ‘word count’. It’s a novel, so I need a word count of at least 75,000 words, I currently have only about 52,000 words.
I know I can get it to the required length, because, I am good at writing, and I know what I need to do! I will work on the characters, tighten the plot, add in a much better ending than it currently has, and I’ll get it to the correct length! I’m good at poetry, too, and for this month, February, I have been writing a new poem every day, using a writing prompt that writing friends have put together for this purpose.
When you find out you have a Chronic Illness, such as Multiple Sclerosis (MS), Chronic Fatigue Syndrome, Traumatic Brain Injury (TBI), and others, you will probably try to find out all you can about your new ‘life issue’. You’ll search for it on the internet, via search engines, and follow up on all of the links you find. You’ll ask your medical people about it, I’d expect too, and you’ll quite likely check out Facebook pages related to your illness.
These are good ideas, the more you know, the better decisions you can make, but you know what? These sources of possible assistance can only help up to a point. And you may find the people round you may take it upon themselves to help you too. It’s human nature to want to fix things for other people, for some people, and that is a lovely thing, quite often, but only up to a point.
Some people have minds that are closed to other possible actions rather than their own ideas, on ways to fix things. But much of the time, our problems are well outside of the understanding of such people. They can be dismissive, ignorant, and simply won’t listen to you if you try to explain how it actually is for you. These people can be irritating in small doses, and postitively toxic in larger doses.
The people who can really help you are the ones who know what it’s like, because they are living though the same things as you. Only a person with MS, for example, knows what it feels like to try to continue on through a bad time of MS Fatigue, when your whole body, all the way through to your bones, feels tired … Having friends who truly know, and who really do understand, can be a life saver! You will have at least those people who know what you really mean when you say, no, I can’t, I’m too tired.
If you have one of those ‘invisible’ chronic illnesses, as such as MS, etc, you must remember to care for yourself first, and others after, otherwise you will burn out and have nothing left for anyone, including yourself.
If any of this rings true for you,l please, feel free to comment here, and add to the discussion!
I’m well aware of the summer heat in my part of Australia. I live in South Australia, and summer is definitely here, and blazing hot at times!. We have already had some 100 degree (C) plus days, and next week things are going to get hot again.
Today wasn’t quite that hot, but I was going out to watch my husband play lawn bowls, and wanted to watch him from outside, not inside the clubrooms. I like to be able to say something, when I see a good bowl, for example, and though I could have still done that today inside the clubrooms, there wouldn’t be much point, if the players couldn’t hear me.
I know how badly getting too hot can affect me, because of have MS (multiple sclerosis), so I got myself prepared for some protection from the effects of too much heat, after being reminded about it by my husband, who is also my carer to assist me living with MS.
So my husband was a good carer, I was a good client, and I got myself organised with my cooling neck tie, to get it all puffed up with water, and lovely and cool, before I needed to go. These neck ties are amazing things, with some kind of white crystals inside, that absorb water, and keep very cool for a long time.
You can more or less wear them straight away, once theye have absobed enough water, or put them away in the fridge or freezer, to keep damp. If they dry out, which they will do if they don’t get soaked again, you simply soak them in water again, and so it goes …
So I went to the Mallala Bowling Club, and was amused at myself, for getting there at the wrong time. All of the bowlers walked off the bowling rinks when I pulled up in my car, to watch! I wasn’t upset about that, because I knew I’d just mistimed my arrival. The game had already been playing for about an hour and a half, and it was time for afternoon tea.
I could have gone inside with them all, that would have been fine, but I wanted to give my neck tie a good work out. The temperature inside the clubrooms is always pleasantly cool, or even possibly too cool. (My husband and I have different ideas about the ideal temperature for inside.)
Having given the neck tie another run, after leaving my collection of them buried away in various drawers, I am happy to report that I felt nice and cool when I was out today! When I came home, I took off the tie I’d been wearing, and put it in the freezer, to keep cool. When I need it again, I can simply get it out of the fridge, and let it defrost a bit.
These neck ties are definitely a useful thing to have, for people needing to keep cool in the heat. I’d love to know where other people have visited, and needed to keep cool, so they too wore their neck tie for the job. Please leave a comment!
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.
I’m not really thinking deep things, not completely. It’s more like considering the thought of thinking deep things, then getting distracted, and thinking a variety of trivial things instead. Sometimes deep thoughts may poke their heads up, but then along comes a photo of a puppy or kitten, and I’m off with the trivial again!
Is that a bad thing though? I don’t think so, not really. I make sure the important things get done, by me or by somebody else. Bills get paid, plants get watered, Missy (our dog) gets fed and let out for toilet breaks. Clothes get washed, dried and put away too, sometimes by my husband, sometimes by me.
Well, actually, the putting way of clothes is definitely my job, as heavy work in the garden is definitely my husband’s job. We’ve been working at sorting these things out over the many years of our marriage, and I think we’re doing a good job of it. We both know I have some issues from my chronic illness of Multiple Sclerosis, but we also both know I am capable of some things.
How many things though is something only I know, at the time. I may think in the morning I can do something, then the time for it comes, and fatigue has hit me. I don’t know when that will happen, but I do know some of the things that may bring on fatigue. I work hard at limiting those things, which leads to a much better life for me, and for everyone!
Stress is a major cause of fatigue, and hot, humid weather can cause it too. Today is hot and humid, but I have the air conditioner on, and I’m being careful to keep inside as much as possible. The dog doesn’t like hot weather either, so her toilet breaks are refreshingly fast!
I have been working on something involving thinking today too though. One of my volunteer jobs is to put together a newsletter for my local town, the Mallala Crossroad Chronicle. It comes out monthly, and I have to get it finished and sent off to be printed tomorrow, so it’s ready to be distributed before the Christmas break. I’m pleased with how this newsletter is looking so far, and I certainly expect it will be all done before close of business today.
So some deep non-trivial thinking has certainly been happening today on my part. I have consulted with providers of material for the December issue, I have placed various things in various places in the newsletter. Some of it is fun, some serious. I am very proud of this newsletter, and I know others in the Mallala community appreciate getting it to read, once a month!
I’ve also had some random thoughts on religion, politics, the weather and climate change, and grief. Only the weather made it into the Newsletter, the other things were for my own ‘amusement’. If you are interested, the Mallala has its own Facebook page here, where you can look at each issue of the Mallala Crossroad Chronicle in glorious colour (the copies I deliver around the place are in black and white).