Feeling understood

 Hello readers,

It has been a while since I wrote last.

A lot of my blogs are about invisable ,not understanding or the dynamics of having MS.

Having MS or any other illness there are limits to our everyday life .This may not be visible as we can have good days and bad days. This doesn't mean we have no MS on good days, it just means we can tolerate and manage it better . And yes at times we are probably  not managing but we are pushing ourselves which often results in our suffering the next day .

You can not compare someone healthy to someone who has MS or any other illness ,it's just not the same and it's not fair . When I say I am tired it is not the same tired as someone healthy and there are many layers to this tiredness, physically and mentally .

Our thinking can be impacted as well and it can give a delayed response or not at all. This is due to many reasons being fatigued or our neuron's delivering the message slow for many reasons and another reason is heat which causes delay .

There is also social cues that do not always work or again are delayed .Stress is another big trigger which can cause many symptoms .

It's upsetting when the general population does not understand and we find ourselves explaining things or worse defending ourselves . By having to defend ourselves we don't feel believed and this is hard to take in . It's already hard living with MS let alone having to explain ourselves .

No they are not excuses but they are real problems to everyday life and they are real.

The problem for me is that if people have more understanding or empathy it takes away the stress of the struggles I already face ..Just knowing that I am not perfect because of my illness and to give me a bit of slack and compassion would be great .

There is more awareness out there and TV shows show more about MS these days, but yet there is still no real understanding . Don't bring someone down that is sick and fighting her battles when you are the healthy person. Instead have some compassion and thank god there are people like this .

You've got this MS warriors!

Best

Mascha

To my readers ;)

 Hello readers,

You may have noticed I have changed my name slightly for my blog. Don’t worry it’s still me 🤗 just for security purposes I had to do some adjustments. 

Will also write a new blog soon :)

Mas x

Best Support Ever.

 I have been wanting to write about this many times as it is so important in my life.

Having a good support network is so important and our support can be anywhere, from our doctor to our neighbors. One of my biggest supporters are my kids.

I have two sons aged 26 and 25 and they are my biggest support. One is the emotional caring son that lived at home the longest. He would sense if something wasn't right or I had overdone things. He would simply say ' mum you have MS and you probably need to rest". He would just know and without asking he would help out. The empathy he has is amazing. 

My oldest son moved out of home earlier but still experienced seeing mum dealing with MS. He is probably more the practical, in the books kind and that showed in his studies. He has a degree in psychology and is now studying for his PhD. He is one of the   research teams studying for MS and sleep disturbances. His knowledge and advise he gives are amazing.

I am proud of both my boys in every way and forever thankful for their support. Both of them should be proud of who they have become.

Growing up and living with a parent that has MS is not easy and I believe a lot of patience and understanding is required. I have no idea how hard this would be for them, as I am the one with MS. I can only imagine how it would feel. For this I am grateful.

There are no amount of words that could show my appreciation. Hopefully I can show them by being the best mum I can be.

Besides my sons I have   lovely Neighbour's who have become my friends. She is a beautiful person and her sister moved here not long ago, she also has MS.  They are such a great support as friends but also, they seem to be looking out for me. 

Support can come in many ways, but I do feel this is very important to those that have MS . It's so important to feel understood and receive empathy. It just makes our daily life much easier to cope with.

To all those people that support us during our MS, we are thankful that you are there making our journey in  some way easier.

Love always,

Mas x

We are not the same

 It has been a long time again since my blog, so here I am.

To this day MS is still not very familiar to people. They have heard of the name, but most people do not have any idea. I do not blame them really as there is not enough information about this.

However, if people really want to know more about it they can look on the internet. At the same time the information given does not apply to everyone with MS. Each one of us is different and this can be physically and mentally. 

For myself i have many symptoms on a daily basis and these are invisible. This is hard for friends to understand as they cannot see it. This doesn't mean i don't struggle on a daily basis.

Just because I did a long walk does not mean I don't suffer the effects of my legs being weighed down as soon as i am home. My stubbornness also does not help.

Many would ask why don't you work? It's simple really, I would not be able to handle the challenges of being reliable and showing up at work. I struggle in the mornings and not because i enjoy sleeping in, but because my body takes a while to function. This is physically and mentally. 

The mentally part is a bigger problem for me then people can imagine. Again, its invisible. I struggle with multi-tasking and memory and when i get fatigue then these issues get worse. I often don't sleep well which makes the next day even harder. There are so many issues for me that considering a job is just not possible.

I know there are others with MS that have jobs and they seem to manage. I applaud those that are working, and they should be proud of themselves. But again, each person with MS is different.

I will always remember what my neurologist told me' Keep doing what you are doing. Those words till today inspire me.'

Unfortunately, in my experience a lot of people judge. I believe because it is an invisible illness they generally do not understand. This can be problematic for those of us that cannot work. Speaking about my own experiences, this kind of attitude hurts. There is nothing more than wanting to be normal and function like a normal person.  But in reality, i have multiple sclerosis and my body doesn't allow me to function as normal.

Please don't judge. We are trying our best to live a normal life.

Best always

Mas x

 

   

New post coming .....soon

Where is my head 😫

 Where is my head is literally how I feel at times. This is one symptom of MS, cognitive issues.

Let me share my story. Everyone has a different experience including those with MS.

I know for myself being under a lot of stress has a big impact on my cognitive issues. They vary depending on the amount of stress, lack of sleep and fatigue or heat. I would say stress is the biggest problem. If the duration of stress takes too long my brain basically hasn't got time to breathe. 

A lot can impact this problem and that's noise, a place that's very busy with crowds or talking all at once. This can feel very overwhelming.  My brain tends to get cloudy or fuzzy. It can also give me pain.  It's a world of cloud and mist that I'm struggling to get through.

The world is moving along and I'm trying to catch up. Be it catching up socially or just trying to keep up with this world. 

Many things like electronic issues, trying to do tasks.  Tasks can range from doing grocery,s or just simple things in the home.

I have one story which got me totally upset for two days. You could say I felt so helpless and frustrated and the worst part not understood. Brain fog is invisible. 

So I had to call my bank. A simple phone call just to confirm my credit card. I got security questions which I didn't know any answers to. I had cognitive issues and at that moment my memory just went blank. 

I failed all questions and as you can imagine they didn't think I was the person I said I was. She gave me a few more questions and I was totally blank. Couldn't remember any of them. So she locked me out of my account. 

I totally felt useless and so upset. Now I got instructions how to proceed further but the problem is that , that's one of those tasks I find extremely difficult.  It's the understanding of the task and doing. 

I am sure I am not the only one with MS struggling with this.  I seriously believe there needs to be support on people with MS  that are unable to do these things. 

Cognitive issues are invisible.  They are a real problem to those with MS. Every day living is difficult.  Multi tasking and decision making are a big part of this problem. 

Our world is sometimes clouded and although we may seem fine, we need a little help in this world.  We need understanding.  We are not okay.  We have MS and need support.

Best

Mas x

Boring life of MS

 It has been a while since my last blog. In the mean time I have moved country , been in hotel quarantine and decorated my new house and oh yes Christmas has just passed. 

Life has been busy but also chilled. Life in Australia is for sure easy going. What I have noticed is friends or people that I meet are concerned for my everyday life? They seem to be worried that I am totally bored in life. It is a fact that I cannot work due to the many symptoms I encounter on a daily basis and I cannot play tennis like I used to do. But that does not mean I am bored. I am quite happy just decorating my house and being at home and days of shopping spree's. Yes I love shopping and you may wonder how does she with her MS? That is a whole new blog!

My point is that people seem to be worried that I am utterly bored because I don't work or have a hobby. Because MS gives so many symptoms it is very hard to have things planned or booked on a weekly basis. Every day brings new symptoms or problems and the stress of worrying whether I can attend only adds to the problems of MS. No I am not bored and quite happy doing the things I can do with my limitations. I guess it's very hard for someone to understand this if they have no limitations on their life. When faced with daily pain it also changes a person. I can not imagine joining a painting class while having numbness in my arm and leg with searing pain. I like painting, although I cannot paint and the last time I painted was years ago . No I cannot imagine sitting there trying to use my arm which is numb and pin and needles searing through my arm. This doesn't mean I won't try anything because I am known to be stubborn. 

Because MS is invisible it is very hard for people to understand. They cannot see the pain, and challenges that come with having MS. We are usually happy to seem normal on the outside. 

I can speak for myself and I can tell you I am not bored. This disease causes too many challenges to be bored. A healthy person should not compare their everyday life to someone with MS or any other disease. Reason for that is because our life is so compromised due to MS you simply cannot compare. Your daily life may work for you but someone that has MS or any other disease can simply not do the same as what you can do. 

My neurologist tells me ' whatever you do keep doing it'. His words are forever in my head when doubt comes in. So when a person tells me ' you should not eat chocolate' or you should read books' that doesn't sit well with me. Firstly I do everything I can to live a healthy lifestyle and I am not giving up chocolate!

I am sure people mean well but please don't worry about me, I've got this :)

Best

Mas x

The influence of stress.

 Daily life of MS is for most a struggle. The symptoms we struggle with on a daily basis and the unknown of the disease itself. There are so many stressors that come with MS that it can be exhausting.

 There are loads of stress factors and although they vary for each individual with MS differently, they still effect us. They are as simple as " what does today bring" ? Am i able to clean the house or drive my car today? Vision is one symptom of MS and for myself,some days i am just not able to drive,well maybe i am but I don't trust myself that particular day may it be my eyesight or my trembling leg.

 The mayor stressors are of course " am i in a flair" or exacerbation as it's also called or an attack. When the body attacks itself basically. I won't get into this as that's a whole new blog.

"THen there's Covid..........

Covid is a stress for everybody and although in the beginning of covid i was quite chilled about it. I figured not a lot of changes regarding lockdown for me,as I'm used to staying at home a lot.

How things can change. Firstly we are already a year into Covid,yes already one year into this damn virus. The stress we encounter on a daily basis is in my view huge. And this is for everyone. The Tv that brings fears into our lifes on a daily basis and the continuation of lockdowns and curfews are never ending. The rules and regulations that all has us confused and basically the world has come to a standstill.

 This article is not so much about Covid but more about Covid and MS. Now being a year into Covid I really believe it causes a lot of stress on top of our MS. Our life with MS is already stressful and unpredictable and we never know what each day brings us. Now throw in Covid, and the uncertainty of life or our regular routine gets put in the washer and brings a whole lot of unknowns on top of our MS.

I definitely had way more stress then usual due to Covid . Our families that we rely on are now all of a sudden in the unknown and feeling life is uncertain and maybe even some are depressed. As for myself i rely on my son and husband as my base, my safe base. Things are safe and my daily life with MS is uncertain. I don't see this as a bad thing but probably a very normal response when you have an ilness. You try to hold on to your safe anchor and your safe comforts because life with MS can certainly take that comfort away. When this changes due to uncertainty of covid on most people's life,it can definitely be a big stress factor. I've definitely encountered this myself and the uncertainty of life gives me a lot of stress. I think for those that have MS or any other ilness will find these times stressful. Of course our younger generation are suffering as well but we cannot forget that stress for MS can trigger all sorts of symptoms and set off a full exacerbation (flare). If it's one thing that's not good for us it's stress.

Not so bad...............

I disagree with this feeling i had of a year ago. I actually think that it's been very stressful and it does have a big impact on my MS. Not just emotionally and physically but also not being able to visit my neurologist who I visit yearly for my MRI. I have now missed out my second year of seeing my neurologist due to Covid and i am sure I'm not the only one. These appointments bring stress to me as i hate having a MRI,but they also bring comfort. Comfort of talking to my neurologist face to face and him telling me " keep doing what you are doing " you are doing well.  The comfort of him listening to me about my year of MS. These comforts have left . 

 Basically my whole network of my MS has vanished. Sure this doesn't happen to everyone but i live in a country where there is no MS specialist and no support group. I am the one that needs to fly to Amsterdam from France to be able to see some sort of support and have my yearly control. This year again i will miss out on my control. So I disagree with life doesn't change much for those that have MS,because in my view it definitely does change.

Support is so important now..........

More then ever we need the support at home more then ever. We need the reassurance of life and knowing our MS will be fine in these times. We need more love then ever. We need to know we can depend on our loved ones in these uncertain times. We are already vulnerable thanks to our MS and although not many people can understand this as it's invisible, I believe we are more susceptible to the stressors of the way life is now.

Mas x

The invisible annoyance of MS

 Although i have touched base before on the invisible issues of MS,it's a never ending problem.

 The feeling of not being believed or having to explain yourself over and over again is never ending. Generally people do not have a good understanding of MS or any other chronic ilness I believe. There is certainly not enough awareness regarding MS. We live in 2020 and still the general population ask " what is MS". This is the sad truth because MS has been around for a long long time. If you mention parkinsons disease,generally people get it and know of this disease. Maybe not fully understood but well enough to say " oh right". When you say i have MS it's usually " what's that? That is a sad reality.

The reason why it's so sad is because we have a hard time trying to get people to understand or even some sort of empathy. We often get " you look so good" and this only frustrates most of us with MS. Again we feel we are not being believed when we say we have MS. Often this follows by " you don't look sick" Again we feel not believed. The remarks we get can get more intensified by " it must not be so bad? To " at least you don't have cancer? To "you are lucky you can still walk so must not be so bad?

 These remarks/ comments or well advised things people say can literally hurt us. The list goes on to " you must not eat right? To " are you following this diet?

I generally believe people do not mean to hurt us and believe what they are asking or giving advise is not intentionally to hurt us. But it does.

The best way would be " how are you feeling today? To " How can i help you? Basically empathy.

 Our invisible symptoms vary in each one of us with MS and they vary in intense to mild and day to day or week to months. Some intermittent to struggling on a daily basis. For myself I have symptoms on a daily basis and there is no day off. The symptoms vary each day but i also have symptoms that are a constant.  For myself .They  include headaches daily,pain in my arm and leg one sided ( my bad side) as in tingling and a fire feeling of my leg like it's literally on fire. Intermittent is often numbness of my leg and arm to off balance and eye issues like not seeing clearly as in a filter in front of my eyes and my right eye I have lost some vision. This is called " optis neurotis" . To include is the famous MS hug which is not the loving hug you receive from a friend. It's the type of hug that is painful and pressure feeling on your ribs like a heavy cement pressing down on you. Again this varies for each person. For me this is one of the worst symptoms. 

To top it off we have anxiety and depression which is also a symptom of MS. And cognitive issues we call " cog fog" in the MS world. These issues vary for each person in mild to severe to not suffering at all. Thinking and finding words to getting confused are just a small version of cog fog. The problems we encounter with cognitive issues are real and can be debilitating.

Fatigue is another big problem but it's not just the fatigue that people know about but more MS fatigue. There is no comparison to your normal fatigue,it's unique to MS and other certain diseases. It's a feeling of being so weighed down that no amount of sleep or rest will get rid of this. Your legs feel like they are walking through quick sand and you can't seem to get out of the mud. You are drained completely and your body just won't co operate. This is the physical fatigue but we also have cognitive fatigue where our brain just feels tired,exhausted and we cannot think straight. Again this varies with each one of us differently. Put these two together,emotionally and physically and we are just flat out beaten up.

So these are just some of the invisible symptoms but the list goes on and there are just too many to name on this blog. So you may notice that all these symptoms are invisible. You cannot see them.

This is our reality on a daily basis and trying to live a normal life . But MS is not a normal life,it's compromised but we do our best to live the best we can.

So please show some empathy for those struggling on a daily basis . That's all we ask.

Don't tell us which diet to follow or what research you found,because trust me we know every information that comes in regarding MS. We are always on the look out for that cure or treatment.

Thanks for reading:)

Mas x

 

 

When your body shuts down

 When you think you have your day kind of planned and you find yourself staying at home on the sofa. This is MS unpredictable always.

Now this may seem nice to some people who don't understand MS. But being forced to sit and do nothing is not always such a fun thing. Especially when you were the person who was always on the go. My house was super clean to a point it was over the top,my garden well..... the lawn was mowed and the outside area spotless. To top it off i loved decorating inside and used to drive to the shops and buy all sorts of furniture and decorations to fill our house. I would then re arrange my house inside,move furniture up steep stairs and be totally dangerous doing this. I would then pick up my two boys from school and continue my household tasks and two busy boys. To top it off i played tennis four times a week and bring my boys to their soccer games and not to mention all the school events i attended and watched their sports days. 

Coming home and having time to chill by the pool with a great cup of coffee and be ready to prepare our family meal.

In these days i met with school mums on occasion and had lunches or coffees and now and again some sort of mum day event. Basically my life was full stream. I could not sit down until my house was clean and usually had to make time to chill and have my coffee.

Now welcome MS....... my house is not so clean as it once was. In fact some days i just let it be.

My decorating desire is still here but i am no longer carrying heavy stuff. My heavy work is doing the groceries for the week. Usually i need the day after to recover.

My tennis days are long gone and even any sort of exercise is a challenge. I now try towalk as much as possible. Working out at the gym is no option as my body goes numb from using any machine.

So i just make the most of my walking skills which i still have.

My boys are now older so they help me most of the time. My youngest will walk our dog when I can't really move that day and my oldest helps more psychologically wise. He has his masters in psychology. 

Not every person with MS is the same,each one of us is different. Some might have no problem working out at the gym while another may find it impossible.

My husband cooks dinner now.Thank you.

I am still lucky i can do a lot of things but there are days like today,i am just shut down. MS fatigue has set in and my legs just won't work. Tomorrow i could be shopping and no one would know any better.

What's hard though is friends and family members ( not all ) have a hard time understanding. On the outside they may see nothing as it's invisible. Or they may not believe because as many people with MS know " we look so good". This is a huge problem in our community because we feel not believed. That we are faking it. We look good so we must have no pain or fatigue or many of the symptoms that come with MS. You also hear " why don't you try harder" or be more positive? Usually this is said by people that don't have MS. They mean well but just have a hard time understanding the complexity of this illness.

This is where the difference comes in regard to friends. You may notice i wrote in my pre MS diagnosis I would have lunch,coffee and events with friends. This tends to change for many that have MS. We cannot be predictable like we once were and things get cancelled last minute because we may not be feeling well. This results in people not understanding as you seemed fine yesterday or 2 hours ago.

We don't have much in common anymore because most of us don't work or are very limited. Our life is very different to what it once was.

Not enough awareness and understanding causes these big problems people with MS experience on a daily basis. Usually that we become isolated, stop trying to make friends or keep friends. This is a huge problem people encounter.

Let's hope one day there will be more awareness and knowledge.

Stay strong my MS friends :)

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