Friday 9 November 2018

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,
Mascha

Thursday 1 November 2018

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
Mascha

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