Not sure anyone that has MS feels the same way as i do sometimes. I do know that it is common to have certain emotions with MS. It effects us physically and emotionally.
I find myself in emotional situations all the time,and i tell you it sucks! Mind you it also sucks for the ones around me. I have always been somewhat insecure but i must say the longer i have MS,the more insecure i get at times.
it really depends on my day and how i feel. When faced with a bad day and i am in pain or any symptom MS gives me,it can make me terribly uncomfortable around others. While at home i have no issues,i can just go my own pace and rest when i need it. No one can see me so i am in my comfort zone.
Place me in a busy restaurant and i can totally feel out of my comfort zone. While I've had a bad day and feel very fatigued,things can get pretty bad with my emotions. I guess it's a feeling of being very overwhelmed and trying to act normal like everyone else,but really i want to hide in my shell.
Basically i feel bad,most likely have pain,some spasticity going on throughout my arm and leg and MS fatigue has hit me.
To be honest how can i feel comfortable? how can i feel secure about myself while feeling this way? Because i feel like this on the inside.........pretty bad..........i feel i look like this from the outside. this is totally false as MS is invisible and no one can see how bad i feel. in fact i probably look okay as I've done my hair,make up and put on a fancy dress and some days i even attempt high heels.
For someone on the outside they really cannot see that i have MS and having a bad day.
this is where my frustration comes in,because i cannot always hide how i feel. This causes a night out with my husband,not so fun. Most of the time he understands perfectly well but the nights where my emotional state is beyond fixing,the night is less fun. Which makes me think it's better next time to just say "hey tonight is not the night sorry".
I notice these episodes when I've over done things in the day. Doing too much and exceeding my limits. Basically not giving myself enough rest. My mind seems to get tired and the brain fog sets in,and my speech becomes a bit weird. By weird i mean not finding my words.
Does anyone have these issues? I would love to hear your stories and how you face these situations?
Best,
Mascha:)
Wednesday 27 June 2018
Friday 1 June 2018
Finding that special one.
It has taken me a long time to finally write my blog. From my time in Australia and back to Europe,things have been quite busy.
while in Australia i got the nasty flu which left me feeling sick for a long time. What i realised travelling from both continents,that i don't have any MS back up or support at all. I have been trying to set up my MS support in both countries and both not succeeding .
In Australia they do have very good neurologists and specialised in MS. The problem is getting into the system or being put on a waiting list. By the time i get my information i need to leave countries again. I stay for two months and sometimes up to three months. You would have thought this gives you enough time but honestly the time just goes by. Being struck with the flu and then out of order for a month doesn't help either.
So i am back in Monaco,and there are no MS specialist or great neurologist that i have come across as yet. So again no back up here either.
My medical support is in Holland,in Amsterdam.My neurologist is an MS specialist at the VUMC in Amsterdam and they have a whole section just for MS. I must say their system is fantastic.
My neurologist is very good and knows what he is talking about and hence many years of experience. The most important for me is being comfortable in his presence. feeling at ease and not being rushed and taking time for his patients. I leave with a feeling of comfort.
They also have a login system where you login and can ask anything to your neurologist or nurse or anyone assisting the MS clinic. this does require a password of course,which they then send you a code to login. this system works perfect for me from Monaco.
two weeks ago i had my yearly control,consisting of having my MRI and the following day seeing my neurologist. The outcome was all good. No new activity.
Yes it's not practical flying to Amsterdam for these yearly appointments but definitely worth it. it's actually exhausting but i think that's more a mental state of mind then anything else.
My point of this story is basically that having a good neurologist is very important,and feeling comfortable with your neurologist. You may need to travel an hour or three hours or to a different country,but at the end of the day if this neurologist or any other medical team is good,it's so worth the travel time. It's not ideal but i can tell you from my experience that it's well worth it.
Oh yes i forgot to mention that i was born in Holland :) So speaking in my own language does of course help things. Mind you i was a young girl when i left to Australia but it's still the language i speak now.
Anyway i hope everyone has their own fantastic neurologist and if not,keep searching. There is one out there for sure!!
Feel free to follow me on my blog :)
Take care,
Mascha :)
while in Australia i got the nasty flu which left me feeling sick for a long time. What i realised travelling from both continents,that i don't have any MS back up or support at all. I have been trying to set up my MS support in both countries and both not succeeding .
In Australia they do have very good neurologists and specialised in MS. The problem is getting into the system or being put on a waiting list. By the time i get my information i need to leave countries again. I stay for two months and sometimes up to three months. You would have thought this gives you enough time but honestly the time just goes by. Being struck with the flu and then out of order for a month doesn't help either.
So i am back in Monaco,and there are no MS specialist or great neurologist that i have come across as yet. So again no back up here either.
My medical support is in Holland,in Amsterdam.My neurologist is an MS specialist at the VUMC in Amsterdam and they have a whole section just for MS. I must say their system is fantastic.
My neurologist is very good and knows what he is talking about and hence many years of experience. The most important for me is being comfortable in his presence. feeling at ease and not being rushed and taking time for his patients. I leave with a feeling of comfort.
They also have a login system where you login and can ask anything to your neurologist or nurse or anyone assisting the MS clinic. this does require a password of course,which they then send you a code to login. this system works perfect for me from Monaco.
two weeks ago i had my yearly control,consisting of having my MRI and the following day seeing my neurologist. The outcome was all good. No new activity.
Yes it's not practical flying to Amsterdam for these yearly appointments but definitely worth it. it's actually exhausting but i think that's more a mental state of mind then anything else.
My point of this story is basically that having a good neurologist is very important,and feeling comfortable with your neurologist. You may need to travel an hour or three hours or to a different country,but at the end of the day if this neurologist or any other medical team is good,it's so worth the travel time. It's not ideal but i can tell you from my experience that it's well worth it.
Oh yes i forgot to mention that i was born in Holland :) So speaking in my own language does of course help things. Mind you i was a young girl when i left to Australia but it's still the language i speak now.
Anyway i hope everyone has their own fantastic neurologist and if not,keep searching. There is one out there for sure!!
Feel free to follow me on my blog :)
Take care,
Mascha :)
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