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:)

Mascha  

 

 

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 :)