Our own nightmares .......

It's time to hit your bed as usual. We do our usual routine of preparing to hit the hay so to speak. For me it involves switching off all the lights, putting my dog's basket in our bedroom and heading to the kitchen to get my milk. Every night the same. I like my routine and as always turn on the TV to watch some episodes of comedy.

 And then when you are all settled and start getting tired, BANG!! Your right side (me that is) has become all numb. My l leg has become numb including my right arm and hand. To top it off my right side of my face has become numb too. This numbness can hurt and it's definitely not comfortable.
 Now this is nothing new to me, it does happen more often then not, but tonight is different. The intensity of my numbness was enough to give me nightmares before falling asleep.
 The anxious thoughts that hit the moment my head hits the pillow has occurred on many occasions before. How will i be waking up the next morning? will my right side still be numb and will i be unable to walk? Will it get worse? The many questions that deem in our heads.

 So now my own nightmare has begun, the anxiety of my own MS. The unknown monster inside of our own head.
 Every little sound is ticking away in my head while my numbness of my arm and hand try to rest calmly under my pillow, which i cannot feel. My leg that is rubbing against my sheets and actually causing pain by rubbing against it. Who would have thought that numbness can hurt.
 Looking at my phone and seeing it's now 2.30 AM and i am still awake . If only this craziness of numbness would go away, or at least by tomorrow morning.

 Out of fear i shut up in my head and lie there still hoping this will pass. Yes fear can be a real issue with MS and more so at bedtime. Because MS is so unpredictable we never know what will happen. Will i be able to wake up and walk or even see?? These things can happen with MS and they are pretty scary.
 I have woken up with my vision lost in one eye due to MS, and it's not surprising my anxiety when something is wrong when i hit the sack so to speak.

 Numbness is a very common symptom of MS. For me some things trigger it a little more, for example heat triggers my numbness.

 Numbness can also cause a lot more problems then some people would understand. It's not just numb and that's it. I cannot write properly due to the numbness in my hand . Having my bad side like my hand under a tap of water hot or cold makes it hard to feel if it's hot or cold. In the kitchen having to cut bread or anything makes it very difficult when your hand and arm is numb.

Tonight is another night..... and i am still numb on my right side. The good news is that it has not become worse. In fact it's the same. Annoying but i am  sure tonight i will just sleep.
 I have adjusted to my fear and .........ZZZZZZZ Night Night.

Best
Mascha

She doesn't like events or can't she.......

Often people think we have a choice when we decline an invitation or say i am not sure yet if I can go. The truth is we never know how we feel on that day to be able to attend due to the many symptoms MS gives us. It's not a matter of "we don't want to go", or i don't like it". people often don't understand this because we don't look sick and maybe we had a good day when they saw us?

The problem often is that we just don't feel well or do not have enough energy on that day.Sometimes certain events take so much energy from us, that it takes two days to recover.
 when asked "Come to this Gala" It will be so much fun". The issue here is that yes you may experience them as fun, but for me they are a nightmare. They cause so many problems for me that it's just not worth attending them.
 When it takes a person two days to recover from this so called "fun event" i tell you it's not fun!
Included in this dilemma is having pain from this event and although i like being social there is something about Gala's that knock me out more.

 These knock out issues for me are almost every time i attend one. They include the social aspect of mingling with people who i do not know, and big amounts of people all at the same time. On top of that throw in the cognitive issues, which are usually issues with following conversations, Memory, Confussion, Anxiety, Heat, Noise, Tremors and Balance issues. These issues are a lot to take in on one night and explains why  supposedly fun night becomes a disaster.

 So when a person tells me "she doesn't like Gala's or does not like long dresses or isn't sure she can go,"The answer is simple ,we do not always have a choice because we are not feeling well or have not got enough energy to attend these so called " Fun nights".
 Long dresses you don't like to wear? No because i struggle with my balance and wearing a long dress  i trip over onto the dress unless i focus.

 now the problem here is that people just don't get it. They don't understand or don't want to understand. I have problems with the last issue of people not wanting to understand. I think the biggest reason is because they can't see we are sick ,so they assume "We'll be fine" at such events.
 We don't want to be rude and be too direct so we give little hints like" I am not sure yet" Or" I don't really like Gala's". If the person asking you why you don't like these big events then maybe they should think about a few things . If they were sick, would they want to attend if they knew it took them two to three days to recover? Would they want to deal with the extra pain? And lets not forget the intense fatigue that sets in after these big events. I think the answer is No and i would not wish it on anyone.

 Now i am not saying that people with MS don't do anything fun or any events at all but most people that have MS do choose which event is worth to them.
 A couple of months ago i did attend a Gala and it was one of the biggest Gala's of that year.
This one was a huge event and it took a week to prepare. I also stretched my limits on that night, with the help of my husband. It was a long long night and i definitely knew i would pay the price the next day. Well it took me a week to recover. But saying that, it was worth every bit.
 Now when you get asked to these events three or four times a year it becomes a different story.

 Now i am not just talking about Gala's but any event or challenge that we face daily. They can even be as simple as going to the supermarket or meeting up with friends.
 It's not that we don't want to, but can we?
 For me the Gala's are a huge hurdle but some days even going to the supermarket is a big challenge in itself. They can vary in intensity on a daily basis.

 Please know we are not anti social but just trying to cope with life challenges.

Best,
Mascha