My new friend...... My Cane.

It has been a long time since i have written on my blog.
 I am now sitting outside in my garden and of course out of the sun and in the shade. I have moved since then to a beautiful house and enjoying the nature surrounding me and my own pool.
 Things have changed since Covid and i am sure for everyone in a different way. For me it has changed for the positive.

 Another thing that has changed is my new friend, my cane. I have not given it a name yet but maybe in the future.
 This friend of mine came unexpected. I was feeling unstable for a while but never considered about a cane until i went for a bush walk with my husband and used a hiking stick. This turned out to be a bit of a success as i felt more stable and it made my walk seem a bit easier. Now i have to confess i don't always feel the unsteadiness when i walk. I have days where i have no problems, but also days where fatigue sets in and i feel more out of balance.
 To my surprise i saw Selma Blair..... yes i have her on Instagram who has MS as most of you will probably know. She was posing and had her cane pictured.This got me thinking, maybe this is not a bad idea. It was firstly my husband who got me thinking about a cane and Selma just added to that mix.

 So i bought my first cane on Amazon. I felt a bit weird buying my first cane but figured it was time.
 It got delivered and all packed in a box that looked like the shape of a stick. I knew instantly it was my cane. To my surprise i picked it up and while my husband was standing next to me, i put it away in my wardrobe and mumbled its probably hair products. This package then stayed in my wardrobe for a good week. I didn't tell anyone about my purchase.


 The way i was acting was as if i had purchased something very illegal . This "thing"that i had hidden in my wardrobe lasted two weeks. The time came to open the package and look at it. I opened it up and there was my friend, in beautiful flowers all over the cane. Not a bad looking cane i must say.


 One day my husband said " use the hiking cane" for our walks. Right this was a perfect time to tell him about my friend. "wait i said i will explain later". Later became a few days later, but i did finally tell my husband. His response was pretty casual and said "whats the problem" along those lines. He was very supportive as always.

 Now that i got used to having the cane i now needed to use it. It was not so simple as it looks. I ended up using it the wrong way and feeling embarrassed . From invisible to being visible felt pretty strange. With some help on my MS groups and watching a video i can now use it correctly although still learning.


 There is a feeling of embarrassment for me when using a cane but i am sure with time this will pass. At the end of the day this friend will help me when i am feeling unsteady and in need of some support. After all i have MS so no shame.

 Do any of you have any tips for using your cane (if you use one)?

All the best,
Mas x

Research

https://www.facebook.com/677531229341697/posts/916902298737921/?d=n

MS Awareness

Remembering Me

 In February i was diagnosed and that was 7 years ago. I cannot recall the exact date but roughly mid February i assume. A lot has happened in those 7 yrs and what i do notice is a roller coaster of symptoms and emotions added to it. What i do know is that since my diagnosis i have learned so much more,and therefore more at ease with symptoms that come and less anxious when it comes to my MS. Also avoiding triggers that make my symptoms worse.

 What does come back now and again is the " i miss me" scenario . Things change and although I except that i no longer can do certain things it doesn't make them easier. Sometimes they are so confronting that i just feel sad of the loss of me.
 I used to be a real clean freak in the house and to the point that people would get angry because i was such a neat freak. I had no problem juggling 2 young kids and keeping the house clean and maintain the garden on top of decorating. Now this is not me anymore and it's hard to accept i cannot be perfect. Now i am stubborn and i often ignore my limits and then suffer the consequences.

 As I remember me, i also have trouble to hear anything sports. Now this is not always an issue but there are moments when i just can't hear anything sport. I used to play tennis 4 times a week and sometimes even the gym. Even in my early days of my MS i could still do all this. Of course at that time i had no idea i had MS.yes i had problems but nothing comparable to now.

 It's not that i have not accepted my MS because I've had 7 yrs to learn to accept it. It's just more of the feeling of loosing something and in this case it's me. I can get sad of who I've lost but also sad of not being able to fill my days like i used to.
 Instead i find myself sitting on the sofa often having to rest. My character was very different and i used to be the one that was constantly on the go. I miss that person.

 I miss me.

Sometimes it's okay to just miss me and be sad. We are allowed to be sad.
We fight this MS everyday and we are often struggling to keep up with the world and our pain. Sometimes it's just okay to be sad and miss the me.

I know there are some people out there that believe you cannot be sad and that it's a negative way. These are usually the people that don't have a chronic illness. They don't struggle day to day with the challenges it brings. We need to be able to let our guard down sometimes and if this means we are negative to the outside world well sorry. We are dealing with this the best we know how.

Best
Mas x

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