MS and the Why??

Oh but you look so good? Why don't you just push on? If you have a healthier diet that could help? Maybe if you don't think about having MS?

 The list can go on by well meaning people that try to give us advise on how to treat MS. I am sure most people mean well by giving their advise to us but this can be very frustrating for the person with MS. In fact it's pretty annoying. If things were that easy, MS would have been cured. Or if we followed that diet we would all have been feeling better. The thing is most people that have MS do a lot of research and read up about all the information or the new drug that will become available. This is not for fun but merely because we have to. We need to know which medication best suits us and know the names so we can discuss these options with our neurologist. We are often our own doctor  when things don't go well and we need to check if they are the side effects or MS in itself.

 So when we get someone telling us that this certain diet will help we get somehow irritated because it's not so simple,MS is a complex illness. I see an MS specialist because it's so complex and any other neurologist just doesn't understand. I am not the only one seeing a specialist for MS.

 What gets me is i am doing my daily tasks as best i can and i would get a remark like, " don't you keep yourself busy? Or have you been walking around all day for fun? Firstly i cannot walk around all day because my energy is pretty limited and if i make the mistake of walking too much i suffer the consequence and pay the price of being in pain and all the symptoms MS throws at me. It also causes issues when i try to sleep because i have walked too much and therefore i am in  pain and cannot sleep. So yeah this is not "walking for fun". 

 Yes keeping myself busy is a good one, if only i could on some days that i am hit with MS fatigue.  MS fatigue is not the normal fatigue that i am talking about, but a fatigue that hits you and your down! It's the fatigue where your legs and arms feel like concrete and every part of your body hurts by moving it. It sucks all the energy out and even without doing anything. It can strike at anytime and  at any moment and for no reason. It doesn't strike because of physical activity (although it can worsen) but it can strike even when you wake up or doing absolutely nothing.  It's our brain that is faulty and it has nothing to do with our activity or a busy work day. 

 By the time i have my housework done and gotten myself ready for the day i have already used a lot of my energy. So to think of doing some hobby or event or walking extra is pretty difficult. You see i am already exhausted (MS in itself) and knowing i had to use more energy is just not possible. 

 You see we are not healthy like you, we are struggling to be normal and everyday tasks that most people do naturally and come easy is not so easy for people with MS . Every little task is a challenge and every step is thought of........... can i walk those extra stairs? Everyday our mind is faced with challenges and if it's a bad day, well then we are just out of order. 

 You know i am still very mobile and lucky i can still walk those stairs but there are many that cannot do that anymore. 

 You know next time a person says something like " just keep busy and don't think about your MS" really?? Is that all you can say?? Maybe do some research before these words come out of your mouth. 

 I used to be a very busy and active person before i was diagnosed. My days were filled with taking care of my kids and husband and keeping our beautiful home spotless. I was a neat freak and loved my home clean. I also loved interior design and would often head to the store and buy beautiful things for our house. I played tennis three times a week and would even play on the weekend with my husband. I would ride my bike often with my family in the weekends too. I was a very active person but socially as well. I met up with mum's from the school and have outings or lunches and meet up coffee's. My days were never boring.

 Now it's a different story. My life with MS has changed this and that is okay as i have adjusted . Sure sometimes i miss the old me or wish i could play tennis again or be more social. So when someone tells me "don't you have anything to do " or are you just walking for fun? That can hurt. 

 I truly hope that there will be more understanding for those that struggle, but not only MS but also Parkinson, Lupus and many more invisible diseases.

All we want is understanding and empathy.

Best,

Mas x

The Actress i have become.

Okay here it comes, i have become the actress in social events. No this is not a choice of mine because i like to be up front and say the truth. I am from Rotterdam,Netherlands, and they are very direct . Although i grew up in Australia i still carry some Dutch in me and that is honest and direct and taking no bullshit.

 So how can it be that i am acting? Not sure really, besides that it seems easier then the truth sometimes.
 I find myself at another gala ,yes another one!!! I really do not like these gala's but here i am in London at a gala. I must say this one was very casual. I attend these gala's with my husband and this one was work related.

 Having MS there are lots of things to take in consideration at these events. Do i need to stand too long, am i close to an exist for when my anxiety sets in, due to the overwhelming feeling of crowds and sometimes the heat. My lovely husband always makes sure there is a seat available for me and  some water. Cognitive issues are usually a problem on these nights because i am tired, overwhelmed by too many noises and my brain goes on strike. On top of this my memory is terrible thanks to one of the MS symptoms of memorry loss. Lucky this night i had no issues with my speech and the flow of the conversation. What i did have issues with was remembering people or events that occurred a few years back. I would meet people and they would say " great to see you" it has been such a long time can you remember when we met at so and so"?? My answer to these were " oh yes, how are you. Great to see you again. Yes i remember last time we met although a long time ago".
Reality: I cannot remember the person. I cannot remember the event. And i cannot remember from years ago. I am sorry to those i cannot remember but my MS has caused me to forget things due to damage. I am also sorry i am not standing up talking to you. No i am not tired from shopping or just tired, i  am in pain and i cannot stand up on my feet for too long. Excuse me if i seem rude by not joining in the conversation but my brain is tired and i can't seem to follow the conversation very well.

 This is my life but yet i find myself acting as if i am a healthy person. Why? Because it's easier .
 A lot of people do not understand and even if they did, do  you really bring this up at a work gala???

 So as i sat down i hear my husband say" yes she has pain in her leg. I followed this lie as it seemed the most easy option. Am i really going to tell everyone that i have MS during this event,No. That would be awkward and a lot of energy telling everyone. At the same time i hate it!!! To be honest  by saying the truth, Yes i have MS!! It gives awareness of the disease.

 I am certainly not the only person with MS acting or hiding her or his disease. It's ashame it has become this way.

 I may look like i am holding up pretty fine, but i am struggling acting to be normal.
Here are some invisible signs that you may not see why i am struggling.

I am holding my arm or wrist due to spasticity.
I say " oh yeah" a lot because i really don't know what you are talking about.
No i don't drink because i do not like it. Truth is i don't because it makes my symptoms worse.
I sometimes shake your hand with my left hand because i have pain in my right hand.
No sorry i did not see you because my vision is not always good due to light and less vision in my right eye.
I put my drinking glass down sometimes because my hand has tremors.
I need  directions to the toilet because my orientation is not so good, and yes often get lost finding my way back.
I try to eat with my knife and fork except when it becomes too difficult and i use my hands. My hand hurts cutting whatever i need to cut.
You will not see me staying long, if the music is too loud. The music gives me pain in my ears. I also cannot focus on two things and by adding loud music i feel lost and confused.

These are just a few things that make my life challenging but i will keep fighting and challenge these situations and for now will be the actress when needed.

Please follow :)

Best
Mas x

MS and heat

http://brainblogger.com/2014/09/13/how-temperature-affects-people-with-multiple-sclerosis/

MS as it is......

My favourite .......MS Awareness video.

This song from U2 has become one of my favourites of all time. Not only  a fantastic song but the video itself explains MS in a instance. This is how it is and how it looks.
 Every time i hear or see this video it brings tears to my eyes. Last week i was watching the morning show and during the ads this awareness of MS video came on from the Dutch National Fonds. Well i was a complete mess after this, and just crying my eyes out. Its just so "how it is" and everything about this video is real. Yep i am a U2 fan !!!!!!!

 A year ago i bought my new car and this was at the time i was not sure wether to drive again due to my eyes. I had done a eye test and my vision was fine. I've had optic neurotic in one of my eyes, which left me with around 67 percent vision left.
 My number plate of my car is U2.....with the number. Maybe not much importance to anyone but to me this was a big deal.

 I hope you love this song as much as me :)
 Thank you U2 :) we love your support.

Mascha :)

Festive seasons and MS

Christmas has come and now time for New years Eve. I had a great Christmas and i hope you all did as well? They are busy times and although challenging for everyone, they are even more so for people suffering from an illness .

 TRYING TO KEEP UP
 You try to get your loved ones the presents they want and at the same time you know you need to slow down. This is all easier said then actually listening to your own well advise. You know you want to get that one more present and oh what the" i will be fine. Then come home absolutely exhausted knowing you over done things. In the mean time my vision started playing up and i even manage to visit my doctor and get an appointment to get my eyes tested. All good news, no problems with my optic nerve. I guess my nurse was right when she told me i was over tired.
 I obviously pushed my limits and got the cold on top. This didn't stop me though!!!! I still had to get that present until my husband told me "you are not going anywhere".

 My point is that we know our limits with MS but sometimes we are on a roll and just want to ignore the fact that we are in fact sick. We don't always want to give up and even think of our symptoms sometimes, but when we do this our body just keeps getting worse for most of us. Trying to ignore we have MS is almost impossible for most of us. We are faced with daily symptoms everyday for most of us. Trying to ignore MS is like saying you are not sick and just keep going. Go on, Go on!!!! Run while you are at it!!! You are not sick today,even though you have pain in your leg, pain in your eye, feeling the fatigue and the heavy feeling of your body weighing you down is nothing, Go on!!!

 No,No,No it's impossible to ignore that you have MS!! Mind you i have tried to ignore my MS and even unfollowed some MS sites just so i could pretend it didn't exist. Did it work? Of course not!!!!
 To be honest it made me feel worse trying to ignore it. Like i am lying to myself saying i am not sick. Its's stupid.

MOMENTS

 You may have had people say to you "Oh just ignore it, then it will go away" Or " You talk too much about it" yes we have all heard these statements and they don't make us feel any better. By saying "just don't think about it is crazy. If you had a leg that was with burning pain, could you ignore this? No you wouldn't .
 Now talking about it too much i can understand that not everyone wants to hear about it all the time. I have my MS sites and MS and ME radio is one of the sites i love. Great people and great information .
 

 Now it's time to start the New year again with hope and strength :) :)
I wish everyone a happy New Year!!!!!!
 Best
Mas x

Merry Christmas!!!!

Wishing you all a Merry Christmas and a Happy New Year :)

Best Mas x

My Fuzzy Cloudy Brain.

Now someone with MS may understand the title straight away without putting much thought to it. In the MS world we often use the terms for cognitive issues,brain fog,cog fog a more common one and cloudy head. I am sure there are more terms but i can't remember,as my heading states "my fuzzy,cloudy brain.

 For those that are in the unknown of this title,let me explain in a simple way. I will not go into the science part but more my everyday life struggles with my brain.

 As this is one of the most common symptom of people suffering from MS,it's also one of the frustrating ones. Now i cannot speak for everyone,but when talking to my MS chat groups or reading articles it seems this symptom is one that pops up a lot and also seems the most challenging.

 Now i can explain my experiences but not everyone will experience it the same way,although many may identify very well. For me the heat and fatigue are triggers to my fuzzy brain. Also an overload of information or noise all at the same time can trigger these issues.
 Basically my brain gets tired and my electrical signals in my brain do not travel very well from point A to B. Sometimes they get lost on their way or are very slowed down. The coating of our neurons are damaged due to MS and this causes our signals in our brain to backfire. This also causes slow thinking,memory issues and receiving information becomes more difficult. Now i am not a scientist and my explanation is very very basic,but you get the idea on a basic level that is.

 I suffer from this on a regular basis and some days more then others. I will be in a conversation with a group and i just can't keep up sometimes because the conversation is going too fast for me. This can also happen when i watch a TV show and especially talk shows,that i just cannot keep up.

For me the worst thing about this is when they get mad, or do not understand that i am struggling trying to hold the conversation and my brain is too tired for me to hold it all together and i forget or i forget some parts of it. I would hear the" you are not listening" or i just told you" kind of attitude .
 This can be very frustrating and embarrassing too. Some days when it's bad i try not to say much at all.

Not many people understand because again this is an invisible symptom of MS. Even the ones that do understand,say they understand but their actions speak differently.

 Being in big crowds cause  a lot of cog fog and trying to hold up a conversation is often challenging. I think the reason for me is because i get tired of noise overload,especially in smaller spaces or at events with loud music. I just get so full in my head that there is no more space for any extra information. My days of social events have become a worry instead of joy.

I just wish that on the outside world people would not judge so much. We believe that because someone is young and looks healthy that they cannot have memory issues or confusion. Oh did i not mention,confusion is also a part of this cog fog,brain fuzz we have. yes we can also get confused when our brains are not on sharp form.
 It's not only the older ones that can struggle with these issues but also the ones that have MS and other illnesses out there.
 If only there was more empathy in the world.

 To my MS readers i would love to hear your story or tips of how you manage this.
Please follow me :)

Best,
Mas x

My crazy travels

 So here i am sitting behind my laptop and a nice view onto the beach in Australia. I am currently back here to help my son with his move to the UK. As this is now our fourth trip this year to Australia,i am now looking forward to less travel.

 You see having MS brings it's challenges when confronted with disrupted routine. I have my routine here but very different to where i live full time in Monaco. Even though i have lived here before i don't like being out of my comfort zone. I partly blame my MS for this.

 Now i have had my challenges of trying a new medication,and as yet it has failed me again. i got all the side effects and it made me feel confused,ill and to the point i lost my memory .

My point is that feeling so bad and being away from your home is not a good mix. When you feel so bad you want to be in your comfort place and have your dog lie with his head on your bad leg. Have your doctor close by and all the other comforts it brings to calling it your home. Now many may disagree and say i am lucky to be able to travel,and this is true to a degree. But when you have MS or any other medical condition,travelling becomes challenging.

 At this point i am looking out to a stunning view and birds chirping in the background. Now this may have been fantastic a few years ago but now i am feeling isolated and as a result have anxiety and to throw into the mix,the MS hug. I'm not saying this cannot happen at home because it can,but not being home you feel the extend of your symptoms much more. Maybe not every person with MS has this but i know there are some that don't even try to travel or they have no choice as their disability has set in too far. So for my last reason i try to make the most of it and enjoy it. Not always easy when the symptoms come out and try to take over. My worst one is anxiety when i am here. Now i know heat causes my anxiety,and as Australia is hot most of the time this could be the source.
 At the same time it has been cold the last few days,which is not normal this time of year.

 I hope many of you don't have these issues while travelling. It takes the fun out of it for sure.

Best
Mas x

The unknown challenge of MS

The ones that do have multiple sclerosis can be a challenging disease. Our friends and family it can be the same,challenging. For the ones we don't know it can be an unknown disease. More and more often i get confronted with people that have no idea what MS actually is. Some never heard of it,and some don't really understand it. Sure there are people that know what it is ,but in generally i meet people that have no idea.

 I travel a fair bit between Europe and Australia and it's surprising to see that its a pretty unknown thing. I must say Australia and Amsterdam are quite informed with MS. But in contrary to the French,not so.
 Considering we live in 2018 you would think that MS would pop up a lot more then expected. Parkinson on the other hand most people know. Could this be due to Michael J Fox who has Parkinson? I am not saying this disease is not bad but merely just saying this because its not so well known as MS. It could be coincidence that the people i meet have no idea and someone else with MS may meet people all the time that knows our disease. Who knows?

 Then you have the people that don't believe you. Why is this? Would we really pretend to have MS? Why would we want to do this? Do we really make up all of pur symptoms and struggles as a lie?
Isn't it more about the people questioning us,because they are not capable of understanding such a complex disease and therefore judge us and disbelief? Not having the intelligence to  understand or just plain simple "being mean". I have no idea what reasons these people have to disbelief.

 I myself have had family members telling me that i have no MS,and that i use it for my own interests. This really hurts but at the same time it just confirms the stupidity and how a person can be so darn mean. The fact that we use this against us,is just plain stupid. There is no advantage of having MS,in fact nothing at all. No amount of money would i want to have MS. But i have no choice,the fact of the matter is i have MS and the MRI's prove it,let alone my MS neurologist and specialist confirming this.

 So to all of those that are unknown to this disease,please look it up and before you tell someone who has MS that they are faking it,please think again. You are hurting the ones that have this horrible ,challenging disease. Why? Maybe because you don't understand and its unknown to you but it does not give you a reason to say or act in this way.

 To all my MS readers i hope this does not happen to you,as we deserve better.

Please follow me :)
Best
Mas x

Frustration and Tears

To my MS readers, i am sure my heading sounds somewhat familiar. Although i hate to admit this,but i do have moments of "Anger,Frustration,Sadness or all at the same time. It doesn't take much to have an outburst of frustration and a flowing of tears after. I suppose this is all part of our MS journey. it's quite common to have these emotions. in fact sometimes it's good to have these,it shows we still have the fighting spirit in us.

 I have had MS for quite a number of years and my experience is that it does not get any easier, for me that is. What does make it easy is the information i can get on the internet and knowing i actually have MS.

A few weeks ago we went off with our boat sailing. Yes you would think "sailing" how can she do this"? Well to be honest i don't do a lot. My husband does all the hard work and i will press a button here and there to help out. It helps that this is a modern sailing boat and self furling boom,meaning all  the hard work gets done by a push of a button. Okay we still need to do some work regarding ropes and navigation but basically i do not do much. I wish i could do a lot more but my body gets pretty fatigued due to the sun and trying to stay balanced. I love sailing and enjoy the silence and the freedom.

 My frustrations sometimes come after our trip. I am so exhausted and my body is  so fatigued that my MS symptoms set in full force. This does not happen all the time though,but a few weeks ago it was really hot and we had no wind. This sets off my fatigue and my legs become so heavy and tired that i literally feel like i need to drag them. My husband asked me "can you walk to the shop to get me a drink,it's only 5 minutes he said"? If you can manage he added on. I looked at the shop and it seemed pretty close but the idea of having to walk while feeling so tired and in pain just seemed like a big task. I decided to walk to the shop and only 5 minutes into my walk i stopped and burst into tears!!! I came to realise that this walk was too much for me. Feelings of feeling useless and frustration that my MS determined when i could walk just got me so frustrated and sad at the same time. The thing that got me was that i had no choice. I wanted so much to walk to that damn shop but couldn't.
 I walked back in the port,crying all the way. Wiped my tears away as soon as i arrived and got back on our boat pretending all was fine. I ended up cleaning the boat crying the whole time.
 I guess it's okay to cry and get mad. MS is not easy and although we all march on,we fight everyday to lead a normal life. Some days are just harder and we get tired to fight. This is okay.

I am sure we all have had days like this and you know what "let it out". We cannot always be tuff and soldier on and sometimes we need a few tears to keep ourselves going.

To my MS warriors :)