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 ,
Mascha
Thursday 20 July 2017
Sunday 9 July 2017
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 :) :)
Mascha :)
I
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 :) :)
Mascha :)
I
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