Blog on its way!

Hi to my MS readers:) It has been a long time since I've written a new blog. In the meantime I've returned from Australia and have been to Amsterdam for my yearly check up,and all good results of my MS,being stable. The Grand Prix just finished today and I can finally think about writing again.
I will start working on it :)

The Silence of MS

We all know MS is invisible and oh boy can that be frustrating at times. We all know the phrases of "but you look so good"or you don't seem sick". How i hate these comments so much. Although it may not be said on purpose,it still makes it annoying. I suppose we all look good because generally most of us live a healthy life,healthy diet etc,or we are just all so gorgeous?? Whatever the reason is,it's frustrating and wish people would understand by looking good we still feel bad. My doctor even said "but you look so good" and the worst part of this,is he knows i have MS. In fact he treats me for my MS symptoms.

 Then there is the silence in our heads. Well maybe not for everyone who has MS but for me certainly. Silence i don't mean peaceful,content and calm. I mean silence of not saying anything about how we feel or the pain that we are in. We do not always want to tell someone we are in pain,although my husband can see it without me saying anything. The silence of worrying. Worrying about our MS symptoms or our yearly MRI that is due. Worrying about our next day,will i be able to function or am i succumbed on my sofa due to fatigue.

 There's a lot of stress involved with MS,and the worst part of this is that stress triggers our MS symptoms to worsen. Although everyday life stress you cannot avoid,but on top we worry about our illness. I suppose for me i worry more when my MS symptoms are bad and stuck at home not able to do my daily tasks. This stresses me out because i think "what will tomorrow bring". But we cannot control MS,and we have good days and bad days.

Another silence issue is psychology issues. Our moods change day to day because of our chemical in balance  as a result of damage to our nerves in our brain.The reasons some of our  symptoms are depression,anxiety,confusion,understanding or following instructions. Sometimes these are made worse or better by medication.
 Of course foggy minded,foggy brain is also another MS symptom and can be very frustrating.

 I found myself yesterday in a public toilet. I know why would i mention this? The toilet really? I went shopping beforehand and needed to go,okay. The problem was after i was done,i couldn't find the exit. It wasn't a big toilet block but for some reason i could not find that exit. This was not me being blonde (although i can be)but this was confusion and my brain going blank. It's awful but i know it's another symptom of MS. Thank god it does not happen too often. I had to ask the lady who was in there,where the exist was. She looked at me a bit like "really?? I told her i have MS and i can get confused. Her response was very lovely and said"oh it can get confusing with these mirrors". What a nice lady.

These are our silence battles we battle everyday. No one can see them because we are in silence,we are invisible and we try to carry on our daily life as normal as we can. It's hard. We need some empathy from the people around us. The ones that do,we are so thankful for you having empathy and it all makes our battle with MS so much easier .

To my MS readers,i hope you receive a lot of empathy and love from the ones around you.
Please follow my blog if you enjoy my writing :)

Best
Mas. 

And so i arrived at my destination!

Well i have been at my destination in Australia for 2 weeks now. Not a lot has happened considering i got sick on the day we arrived. I got a nice flu/cold whatever you may call it. I am guessing i picked it up while in Singapore for my husbands's work. Basically i have been down for 12 days and still recovering.
 I decided to call the home doctor and get myself checked out and my husband. Yes my throat was inflamed and i needed antibiotics. My husband on the other hand had nothing. He was surprised considering he felt bad too. Today is day 5 of my antibiotics and the last day. yes!!! These little pills make me feel rotten!!! Although my throat has gotten better,the little pills make me feel sick.

 Everyone gets a cold or a flu,and it's horrible. But at the same time having MS or another ilness  just makes it a double whammy of bad symptoms and feeling weak as hell. It certainly takes a lot longer to recover too. Not many people understand this. Most people think 'oh the flu,i hate that or i had the flu too. As much as everyone suffers while having the flu,when you have a illness on top of this,it takes twice as long to get on top of things compared to someone healthy.

 Having been on the sofa,in bed and on the sofa again for the last 12 days, you come to realise who your friends are. It so turns out that i have not many. But no surprise here,before i got diagnosed with MS and was sick all the time,many people had better things to do or didn't understand why i cancel. This is another topic for my next blog. Just being out of order there doesn't seem to be much empathy going around. Being back in Australia and not have seen my friends for 2 months,they are awfully quite i must say. It just shows that having MS does keep people away to a degree,but so does having the flu. How ironic. Well my mind has been in overdrive so maybe it's not all too bad but a text asking "How are you feeling Mascha" would certainly put a smile on my face.

For now i will sign off,and hope not any of my MS warriors get attacked with the flu or cold.
Till my next blog :)

Noise and Loudness

We all know the scenario of loud noises,busy pubs and hectic shopping malls. I am not sure when this issue became an issue for me,but somehow along my MS journey i noticed i got really overwhelmed in busy places. It just seems that my head feels full. Ready to explode. The need of thinking too much.

 Don't get me wrong i love social events. I  have noticed the last year that when it gets too hectic in my surroundings, i get overwhelmed. This be,talking to my husband or a  friend i really need to focus on the conversation. When it gets busy and a lot of other people are talking in a smaller space i find myself being totally exhausted with the conversation and feeling overwhelmed with the things around me.

 Friday or Saturday night you'll see me in my favourite Italian restaurant in Monaco. i love this place. It's got great food,great staff and a great vibe. The other thing it has is "noise". Yes the noise of people having fun and talking to each other. I seem to find myself in the back of the restaurant nearly every week. Why? Maybe because the staff think it's the best seat in town? I am not sure what the reason is,but when i follow the waiter to the back,i think "oh here we go'.
 All the people put all together in the back of the room can be very cozy but it can also cause some issues with people that have MS. Now don't get me wrong,i love the vibe like i said. I just don't like the overwhelming feeling i get. It's so noisy and everyone talking through each other that i find myself getting very tired. Then comes the clumsy issues that i get. candles swept off the table by my scarf or dropping knifes or forks. yes when i am overwhelmed and tired,i get clumsy. This also happens to be a MS trait but i try to laugh about it.

 I am sure others have this issue too,and after a little research it's also very common in people with MS. It's overload of information that we find hard to process in our brain. I don't know but it can be frustrating sometimes having to deal with this issue. I have probably mentioned this before,but i used to be a hairdresser and i never had to deal with this issue. In fact i was in a chaotic place  always for six days a week . So this new experience can get me quite upset sometimes.

 Does anyone else experience noise issues? Talking too loud? Please give me your feedback :)
Please follow if you enjoy my blogs :)

Travelling with MS

I thought a article about travel would suit,considering that is what i have been doing.
 i must say i am pretty lucky to travel between Australia and Monaco and especially first class. but having MS is a whole new thing,even travelling in style. Everyone needs to deal with jetlag,time differences etc.

 it starts with packing. Packing is not a big issue for me but packing my medication for my 3 month trip can be pretty challenging. Firstly i need to pre order my medicine,then decide how much goes in my suitcase,hand luggage and handbag. The reason i divide my medication is so whatever happens,it be with my suitcase or hand luggage i will have my medicines in either bag incase one gets lost. I would say that i look like a pharmacie shop and having my supply in my handbag can be challenging too. I need to make sure i have my prescription of my medication with me,incase i get asked about my supply. This has not been the case as yet but better save then sorry. if i forgot to put a certain medication in my handbag,i know that i have my supply in my handluggage. it's my back up.

 I also found travelling in comfort leaves a lot of stress behind. The problem is i like fashion and i like to look nice,especially travelling first class. I know my husband and boys go in their training pants and they are all prepared for the relaxed way of travel. I can't do it. So i figured i can still travel in style but just wear my thongs with it. You be surprised how easy they are for travel. These days with our security check points they can become quite handy. I don't need to take my shoes off and walk straight trough. as soon as i am on the plane,on goes my socks. i have another pair of shoes to put on as soon as i arrive at my other destination.

 Having MS there are some disadvantages with travel. I tend to get pain in my leg due to air pressure. This sucks because i am enjoying my free time watching Tv and indulging myself. I try to drink water and try to get up often to reduce the pain. I haven't found anything for this pain as yet. If anyone has please tell me. Jet lagged . Everyone gets this,but having MS all our symptoms seem to go crazy,well for me anyway. I always get on with the stuff that needs to be done once i arrive at our destination but my body doesn't want to. Everything is double as bad . My symptoms just seem to go out of control. i just need to take my rest and let things be until my body is ready again.

My other problem is standing in line waiting to be checked in or waiting for the check point for our passports. I often have trouble standing too long. This is a lot less flying first class but depending on the flight schedule and how busy it is,it still takes ages.

 What i do find that helps me,is trying to be prepared with the way you are organised . This just helps me to feel more comfortable and prepared if anything happens,be it medication wise or standing on your feet too long and having your thongs with you or on. Being dressed cool is another factor for me. i often get too hot and once i am over heated i get anxiety. Wearing something cool seems to help this situation. I always have a sweater with me incase it gets too cold.

Well these are little tips for travelling and i am sure i will learn many more in the coming months. My next trip will be in a few weeks and just realise i need to order my supply. Ugh.

good luck warriors :)

Mas x

SSSSSHHHHH I have MS

 To be blunt,Multiple Sclerosis (MS)sucks!!!! Okay this is true but some days more then others. MS effects us all differently but most of us have good days or bad days. when these bad days come,it feels like they never end. I should count myself lucky to a degree,as my course of MS seems to be stable,but that doesn't mean i have no bad days. Having a bad  day i find myself stuck inside my apartment. This can be a good thing except i hate it. The feeling of not able to venture out and do your tasks or the fun things,like shopping for me.The feeling i get with this is not feeling useful. For example today............ i need to do a big food shop,but i know it will exhaust me today and leave me worse off.

 The positive to having a good day is mostly having no pain for me and almost feeling normal. As a result to feeling almost normal,i over do whatever i am doing. the bad result is paying for it the next day. As they say "paying the price of your good day".

 Now i can live with these good days or bad days,but what i really find hard is hiding my MS. Sure we do not want to tell every person we have contact with but for friends and family that know you have MS,i find it difficult to hush it away. As this illness is already invisible and then to sssshhhh don't want to hear about your MS (the look on their faces too) has me pretty much in silent tears.
 Dealing with this monster can be very isolating in itself. Having people around you that cannot or don't want to talk about it,can feel very sad and lonely. Sure i understand that they don't want to discuss MS every second or everyday and i do my best not to brag about it. But there are some days that i just need to get it off my chest and just a listening ear.
 Sometimes i find that telling my loved one a certain problem or pain issue, that i am just stressed about it and by telling him i almost feel relieved.

 Another good point to note is that there are millions of MS sites we can join or visit. They certainly help me a lot. Mind you it's very important to find the right ones,as some are not very helpful. I have my favourites and they are great for asking questions or just to have  contact with other people that have MS and have a better understanding.
 There is plenty of help or information regarding MS and i always find myself getting drawn to these sites when in need. I think trying to find the right balance is the way to do it.

 All the best to my warriors ,
Mas x

Social Mask

 I used to love social events. Okay i was often shy to start of with but in general i liked these events. The fact that i used to be a hairdresser will probably explain this. As a hairdresser you had to be social and know how to talk to people,and i was pretty good at it. it used to be no effort at all, and it just came naturally.

 However now having MS,things have changed for me. I now need to think what i am saying and when i get tired or too busy in my head i forget things. I sometimes cannot find the words to what i wanted to say or i say them backwards. This is not a big problem but the people i am talking to have no idea that a single conversation takes effort and thinking. At the start it all flows very well to what i want to say but two hours into the conversation and my concentration starts to slowly disappear . At this point i am starting to get tired and my head seems to be too full. I would say overload of information.
 This is very common with people that have MS,and  it effects each one of us differently.
 The overload of too much information but also noise issues can be an issue for me. When i am in a crowded room and it's too loud,i have a hard time to concentrate with the person i am talking to. To be honest anyone could have this problem but it doesn't stop here for people with MS. The invisible part of our disease can be very difficult. I can be standing at the bar talking away,and no one would know that i have trouble standing on one spot too long,my vision has started to loose focus,my head is overloaded with noise and making me extremely tired,and to top it off i have spasticity while i am talking to someone. these are just a few issues i have. To add a few more to the list,they include pain,balance issues,trembling hand.

 Oh yes you see me laughing,wearing my stunning dress,hair and make up all done up and some small heels to go with it. you may see a drink on the bar table and noticing it's a non alcohol drink and orange juice. Oh yes i am sitting on a bar stool. you want to know why? Not because i am tired or lazy "oh no" i am very shaky on my legs and they are hurting so i need to sit down.
 But this is all a mask. Not on purpose but because MS is invisible .

 Don't get me wrong as there are times that i enjoy myself. Two or three hours into social time it starts to become real heavy for me. The days of not thinking while talking become a distant memory.

 When i sometimes look at photos i see my pain. i see that i am holding my arm tight and yet smiling. This is spasticity. I may have my legged stretched out and smiling. This is leg cramp. I may look at my phone too often. This is time out. I may say "ah yeah" too often. This is ,i am getting tired. I may take the ice cubes out of my drink. this is because i don't want to get brain freeze,because it hurts.
 You see where i am going with this. The list is endless.
 And i have not even talked about the feeling of being insecure because my leg is giving me pins and needles or i am choking on a piece of bread. This doesn't count for everyone that has MS. Everyone has a different experience. yes i often feel insecure because of my MS. It can be all of a sudden because i get spasticity or pain or trouble standing. They somehow make me feel insecure.
 I think for me the hardest part is trying to act normal.

 i will not stop being social but i will try to speed things up so i can head home to my sofa or bed and watch my other friends on TV,yes the comedy "friends". These friends are great,I laugh but yet i don't have to say anything or concentrate. I can just rewind or stop at anytime :) :)

Mas x
 I

Support of family and friends

   I follow MS Australia as this is where i grew up and still see it as my second home. An article got my attention. The government now welcomes some positive outcomes for people with multiple sclerosis (MS). One that got my attention was this: Acknowledges the important role of families,friends, and carers of people with multiple sclerosis. This is now a fact by the parliament.

 With interest i was reading this and thought to myself,my god,i have fallen out with both sides of our family a few months ago and not by choice. It's pretty sad to say that we no longer have a family network at all . Mind you when we did have contact the support we received was basically a big zero. Both sides of the family did not believe i had MS,or that i made it up for my own benefit to get what i want. If only that was true of not having MS. Unfortunately there is nothing worse then being sick and struggling from day to day and always being in pain,and your family does't believe you. The constant looks i would get if i asked them to get their own coffee or a little help. Again,there is nothing worse then the look of "yeah right i don't believe you".
 Having MS is already so difficult and then to get family to not support you is really sad. I say sad because it does make me sad. It doesn't take much effort to help someone or just have some empathy. But to not belief and trying to hurt the person that is sick,is a really evil thing to do. I am sorry but there are no better words to describe this.

 But it's not all dread and gloom. I am actually very lucky to have great support from my husband and two sons. I don't know where i would be if i didn't have their support.So yes i am unlucky to have no support from both sides of the family but very lucky with my own , my husband and my son of 20 yrs and other son of 18 yrs.
 My husband cooks dinner every night and does all the finance and paperwork etc and the list goes on,his support is there 100% all the time. My younger son helps with food shopping but the most important is his kindness and empathy and understanding. My oldest son does his best,but living in Australia and doing university he has his own life. But he has also been a support for me when he lived at home and now living far away,he still shows that support.
 To be honest, i am a lucky woman.

 I cannot stress enough how important family and friends are to someone living with MS or any kind of chronic illness. It can be such a lonely and isolating disease that being surrounded by loved ones is so so important.

 Although family and friends are important,i must stress that if you do have family/friends that make your life hell instead of support,i would take a break from them. As stress is a big No No for MS,it also makes us sick or attacks our immune system causing it to flare up,or in other words attack.

 When i did have contact with the family,they were no support at all. In fact they only caused drama and stress and resulting in a MS hug for months. This is a tight band around your torso and pressing really hard causing it pain and discomfort. The ones that have MS certainly know what i am talking about. For the ones that don't,they can google MS hug and realise this MS hug is a monster.
 To have family causing so much drama and stress it's a blessing to have no contact now and remain stress free. For now i am happy  not to have any contact for a very long time unless they show some empathy or treat me with respect and belief that i have multiple sclerosis. If they cannot do this,then they are better to stay out of my life.

 All the best to my MS readers and hoping that you have the support that you deserve :)


Mas x

Catching that good day..........

 Moving 5 years forward after my diagnosis,there seems to be less and less good days. When i mean good days i mean pain free and totally pain free. This is the thing with MS it's just so unpredictable.
 we often know when we have pain,or can't move our leg too well,or vision issues etc the list goes on and on. But when we have a pain free day i don't always notice until the end of the day, when i think "hang on" i have had no pain today "what's going on ?" They sort of surprise us,or let me say myself. I have had no pain free for a pretty long time and i couldn't even tell you when. I haven't done anything different to enjoy this pain free day? I track down my activities and go through my day to see how i deserved this good luck. Well NOTHING new?? Did i relax more,eat better,sleep longer?? All of them are a NOPE. Nothing new for me to have this pain free day.

 I find myself sitting on the edge of my bed and just wonderring "is it really true"?i need to enjoy my evening more as god knows what tomorrow will bring. But instead i find myself relaxed into bed and watching TV and planning my next day. Now what's pretty weird is when i say planning my next day. Having MS is almost not possible to plan your day as we never know what our day brings. But yet feeling my good old self and having no pain i am planning ahead. Oh what a good feeling this is,being a little bit normal.

 So i wake up feeling not too bad and trying to get ready for my day.I had planned to walk and do my errands which  seemed fine last night when i went to bed. Said my goodbye to my husband and walked direction to the shops. Oh yes did you know i love shopping too. I arrived after my 10 min walk and to my surprise my leg was aching. Considering i felt so good yesterday i think i had over done it. Well this didn't stop me,and i did partly what i had to do. Soon after i knew i wouldn't be able to walk much further :( and decided to forget what i had to do,and yes i did buy myself a dress considering i was standing right a front of the shop. It didn't require much walking except a few minutes in the changing room.  And so i went back home with pins and needles feeling in my leg and a few stabs here and there and sat on my sofa to recover.

 I just couldn't understand how the day before i had cleaned the whole house, even managed a walk after with my husband,and the next day BANG in pain. One conclusion is that i over did it and i pay for it the next day.

 It's funny how i notice when i have pain but yet it takes me a lot longer to notice when i have a good day. All i know is that when they do come up,good days,we need to enjoy them!!

 Thumbs up for pain free days!!!!!

To tell or not to tell??

 It's probably a bit of a strange titel,to tell or not to tell. I have found myself since of late wondering when to tell someone I have MS or not. Depending on the situation and my mood it's not always the right moment. i often find myself saying I have MS without thinking and just blurt it out. The thing is,it's not always the right time. Do we really want to say it when we are at a function or a social event? It kind of ruins the atmosphere I think,but at the same time I sometimes feel the need to say it? It's a really difficult balance to find.

 When I got diagnosed I didn't really talk about it,but I guess i did't have too many symptoms then to worry about. Following three years after my diagnosis I started to do my research on my MS and why I had all these symptoms. I didn't have a good neurologist at that time so I was basically doing my own research. This got me talking about my MS non stop and was  starting to become obsessed about it. One good result came out of it,and that was damanding to see another neurologist to my doctor.
 Once i saw another neurologist and got beter medication I started to let my reseach go. Although the neurologist was okay,he wasn't great. I needed to find a MS specialist and one that spoke English.
 I ended up travelling to Australia where I grew up as a child and had hope to find my neurologist there. This turned out to be a huge struggle and on a long waiting list and no time to wait. I ended up in Holland where i was born. I found a great neurologist who was specialised in MS. This settled my mind and worry and gave me a lot of comfort.

 But I still found myself talking about my MS? I suppose it's a hard thing to ignore as everyday gives me a reminder that i have MS. The thing is,it's not always something to bring up. Do we say it or shut up? Do we explain why I can't have ice cubes in my drink or do we say "oh i just have brain freeze"??

 I have also heard "do you really need to say you have MS"?? It's not a easy decision as some days I do not want to hide my disease as it's already invisible but it kind of puts people in a awkward position. I think the best way is to find the right balance. It's not a easy act to follow and it takes some time to find the right balance for yourself. I believe not what anyone tells you to do,but what is best for you. At the end of the day you are living with the disease.

 So to tell or not to tell??........... it's really just how do you feel??? You need to live with it and decide what is best for you :)

Mas x

Feeling the odd one out.

 How often i am waiting in line,and thinking mmmm i would love to sit in that chair just for a few minutes and recover. That chair is for the people that work there i am afraid. I am sure if i would ask they would be happy to offer their chair. This also happens at functions where everyone is standing having their cocktail. Again i am thinking damn i would like to sit as my legs feel like cement and heavy like a brick.
 Somehow Multiple sclerosis (MS) is still something we hide from the public. Why? We live in 2016 and this should not be hidden from the public,but yet we as MS'ers seem to be ashamed about our disease. How often i see newly diagnosed feeling ashamed about their MS.
 This disease is already invisible to the public and still we try to hide it? I know a lot of us cannot be bothered to say anything as we always get the "but you look so good". or "you don't look sick".

 Having had MS for many years i still find myself doubting if i should say anything. There has been times that i had so much pain that i just didn't care and spoke out saying i have MS. This often got me the cozy chair i so wanted to sit there and some sort of support. okay not everyone has empathy and you may at times get that dirty look'but hey at least i said it!!!!

 Maybe one day we may not be ashamed about our MS and people will understand MS more better and have some empathy. My goal is to change that for every autoimmune disease where people don't have to hide it and feel comfortable enough to say what's wrong with them,without being judged.

 To those that do not understand,we fight this battle everyday and yes we look good,but that doesn't mean we are not sick.

Mas x