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

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 :)