Hot feet and MS 😩

Empathy

Frustrations of unreliable Disease

Life with MS can be challenging and also very frustrating.
 I have often gone to bed feeling okay and kind of planning what i will do the next day. I never plan fully because i know that due to my MS i can never count on it 100%. Saying this it can still catch me by surprise. Before i realise it, i am at home all day and out of order. I just don't feel well enough to do those errands or the things i had planned that day. When i say not well i mean really not well to leave the house. I never truly feel well with MS so i march on anyway, but depending on what sort of symptoms arise that will get me to stay home.

 Today is one of those days. I know venturing out would just make matters worse and most likely aggravate my symptom or symptoms. I usually know what is best for these particular symptoms but that doesn't mean i don't get frustrated. So many things to do but yet your body just says No, today is not the day.

 It is not only me that gets frustrated but people that often don't understand can get frustrated too. I often think the people around us think we don't want to do something because we don't feel like doing something or maybe look lazy. the thing is MS is invisible and unless you ask what is wrong with us, you might be able to understand a little of what is wrong. I say a little because no amount of explaining will you ever understand fully unless you have MS yourself.
 This can lead to frustration for both parties involved. The one with MS feels useless, not worthy and a lot of guilt on top. This leads to stress, and to make matters worse stress leads to causing symptoms in MS. Stress is a trigger for MS.

 So what to do............... there is nothing we can do about any of this. The only thing we can hope for is that tomorrow is a better day. Stressing about it makes matters worse and only cause more guilt.

 Life with MS is complicated and the more awareness there is the more understanding from others.

 I had another little trigger yesterday as well, and maybe that led to today not feeling well? I was doing my thing and suddenly out of the blue felt sick. Now this is not unusual for me as it happens often. The thing is that it happens so quickly and random. Anyway i ended up sitting down for a bit and then carried on. Today could just be a top up of yesterday or just for no reason  because MS felt like it. MS is an unreliable disease and the more people understand this the less issues it can cause on them and on us.

I take it day by day :)

Best,
Mas x

Feeling Guilty .

Everyone feels guilty sometimes, but when you know you shouldn't feel guilty because it is not your fault, thats another story.
 Having MS i can feel guilty more often then not. I know that MS limits me with certain things and that i cannot function like i used to be when i was healthy. Yet i cannot help but feel guilty at times.
 I know this is ridiculous because its not my fault i have MS, but yet i feel like this at times.

 I am not an early bird in the morning and i never have been, but now having MS i am definitely not anymore and this is not a choice of mine. I wake up with stiff legs and pain throughout my body and even after a nights sleep i wake up with fatigue sometimes. The pain and sometimes the numbness is enough to keep me longer in bed. i take no medication except sometimes sleeping pills, but that is merely so i can sleep through my pain. I know this is my MS and some mornings are better then others but the guilt that i have makes things even worse sometimes .

 I suppose i feel guilty because of a few factors. My son has already left for work and i used to wake up for him in the days that i felt better then now. luckily he needed me more in those days and now he is much older, so he manages fine. Then there is my husband working from home in the morning and already sitting behind his computer working away. I normally make his breakfast, which i still do but at a delayed time. This is all fine and he understands but the problem lies with me, i feel guilty!

 It seems like the world is buzzing around and everyone doing their thing and heading to work or some appointment and i am in bed trying to force myself out of bed. I'ts easy for others to say "oh just get out of bed" when they have no idea what MS feels like. Most of us do try many things of changing our way or techniques so we can face our days easier. But when you have been woken up many times during the night due to pain because you over did things that day or just because for no reason you suffer from pain , its not so easy getting out in the morning.
 I suppose we can feel quilty because not many people understand our struggles and even explaining this is almost impossible because its not visible . And so the quilt begins.

 We may seem lazy to some or "got it easy" but trust me i am sure many of us would rather set that alarm and wake up feeling normal then compared to a stiff rag doll. I know i would rather wake up at 6 AM and feel healthy then the opposite. But the fact is we are not and there is no reason to feel guilty because it's not our choice. Every morning is the same challenge for me of getting out of bed due to my MS and i feel often that i am missing out in the world due to my condition.
 I have a strange motivation of getting out........ and i know its very weird but it seems to work for me. Of course its for my family but my other reason is putting on my favourite clothes for the day. I know it sounds stupid but i love fashion and the thought of putting on my favourite clothes for the day seems to work for me.

Whatever it takes for you getting out of bed, do not feel guilty! We need our rest!!!

Best,
Mas x

"Not the way it seems"

Having had MS for many years but was not diagnosed till 2012 ,you become adjusted to your life changes and symptoms and mostly your triggers. When i say triggers i mean things that trigger my MS symptoms. For me this took a few years to realise what those triggers are and getting all the information regarding MS. To me this has helped enormously .I can avoid certain triggers most of the time, and if i can't avoid them i know what caused them. This helps with my everyday life although sometimes i ignore them (yes i am stubborn) and end up suffering the consequences of doing so.

 Now this didn't come naturally ,like i said it took me years and i am still learning as i struggle along the way. You could also say i have mastered this skill quite well as some people think my MS is not doing too bad these days. obviously I've fooled them because its the opposite. I would say i have more symptoms as the years go on , but i know how to live with them or in other words hide them really well. I have also learned to not say anything and i find this skill really hard. It becomes such a lonely disease.  Not saying anything or seeing anything is tuff. People think you are fine and assume you are not sick because you look fine. Not talking about it is difficult and often when you do talk about it people do not want to hear. I understand you don't want to hear about it but when you ask "how are you?" are you really asking or just being polite??

 Then there are those that don't want to hear it because it hurts. Sure i can understand this as some see their loved ones maybe everyday and see their struggles on a daily basis. This is hard for them but also for us. We do our best to hide our struggles but some days are just too hard and we want to get things of our chest a little bit. We sometimes just want a listening ear that is all.

So i really just have adapted to my MS and when you say "you seem to being doing fine"well......let me tell you i am not. I am just better at hiding them from you.

Hey i can even fool my doctor and neurologist!! How good am i????
Am i alone on this???

Best,
Mascha :)

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
Mas x

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,
Mas x

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......