Feeling the odd one out.

 How often i am waiting in line,and thinking mmmm i would love to sit in that chair just for a few minutes and recover. That chair is for the people that work there i am afraid. I am sure if i would ask they would be happy to offer their chair. This also happens at functions where everyone is standing having their cocktail. Again i am thinking damn i would like to sit as my legs feel like cement and heavy like a brick.
 Somehow Multiple sclerosis (MS) is still something we hide from the public. Why? We live in 2016 and this should not be hidden from the public,but yet we as MS'ers seem to be ashamed about our disease. How often i see newly diagnosed feeling ashamed about their MS.
 This disease is already invisible to the public and still we try to hide it? I know a lot of us cannot be bothered to say anything as we always get the "but you look so good". or "you don't look sick".

 Having had MS for many years i still find myself doubting if i should say anything. There has been times that i had so much pain that i just didn't care and spoke out saying i have MS. This often got me the cozy chair i so wanted to sit there and some sort of support. okay not everyone has empathy and you may at times get that dirty look'but hey at least i said it!!!!

 Maybe one day we may not be ashamed about our MS and people will understand MS more better and have some empathy. My goal is to change that for every autoimmune disease where people don't have to hide it and feel comfortable enough to say what's wrong with them,without being judged.

 To those that do not understand,we fight this battle everyday and yes we look good,but that doesn't mean we are not sick.

Mas x

Amsterdam article

https://www.vumc.nl/afdelingen/mscentrum/Nieuws2/1000gezichten_ms_mascha/

The Face of MS

There has been a lot of awareness about MS of late,as we have had awareness day. But this is not the only thing. 2016 seems to be the year of research and not just research,but the final phase (phase 2 and phase 3). The final stages of research which gives new medication the FDA approval. Research of finding a medication to treat lessions that have been damaged in the nervous system and medications that give less side effects. In this includes finding a cure for multiple sclerosis.

 There has also been a lot of advertising on TV and on MS sites.  The thing that got me last week was the advertising of people being active with MS. I am not just talking about a walk around the block but rock climbing or cycling a marathon. This really set me off and got me thinking. This is not how MS looks like. Most people with MS cannot even run,climb stairs let alone climb Mount Everest. The face of MS is not been seen,but a false one.

 Out of my irritation due to MS symptoms i posted my comment on one of the MS sites. In return i got a lovely email back stating that she understood my concern and if i could write my story.
 I wrote my article stating that my MS gave me a lot of symptoms and pain,and that if i could walk to the third level of stairs it would be a good day. And i am not alone. There are more people with MS that have trouble just getting through the day.

 So i was very thankful i got the chance to write an article on my point of view. These well meant advertisements show a whole different face to multiple sclerosis. The public sees that by having MS that we are fit and active  But in fact it's the opposite.
 I was lucky to be able to share my story. Having this irritation also got me another web site for MS,but writing for them.

 By giving my personal story,i am hoping it will give a different face to MS. The face of pain,anxiety,isolation,insecurity and battling this disease from day to day and a feeling of achievement when we do survive the day.

2016 let there be a cure!!!!!!!!!!!!!!!!!

Mas x

U2 Beautiful day in MS awareness

https://youtu.be/W342tiClGi0           This video which was shown round the year 2009 for MS awareness. To this day i still believe this is the best video to show how MS is. It brings tears to my eyes every time.

Being strong

My above title is not how i feel.  Since of late,i am being told i am strong struggling through my MS. This is mostly by family and my husband. When this is said,i often feel a bit shy and lost for words. In my view i feel i have no choice with this illness . What else am i going to do? Sit back and let it take over my life? No. When they do say this i feel it's a great positive and makes me want to keep fighting. I am always thankful when my husband shows it in many ways but also him saying it gives me more strength.

 For myself i don't see myself that way at all. Firstly i am scared of those MRI's and i am way over due. I stress about this illness more often then not. Trying to do everyday tasks is a blessing if i get through them. But saying this i do my best to make things work and try to stay positive.

 I don't think you can get through this illness without being strong. There are so many uncertain things having MS. Not knowing what everyday brings. Can i function today? Can i walk today to get my drycleaning? Do i need to cancel my appointment? And the list goes on. Yet these simple words and kind gestures makes us keep going on. And i love my husband for doing this for me.

 I hope the people who do have MS or a chronic illness have a good support of family and help them to keep being strong.

Mas x

Our own little bubble

 Often due to social events or our own stress from our MS we hide in our own little bubble. We get tired from outings or travel or for no reason our energy just stops. Having pain also makes our body tired. What is normal for a person doing their tasks, is double the effort for people with MS or a chronic illness . Our fuel tank gets to zero  faster and makes us tired quicker .

 My own little bubble is where i hide when i am over tired and have constant pain and feel scared to what may lie ahead. Usually this lasts a day or two until i get out of this bubble.
 I pull myself out of social media,and people in general. I don't like doing this but somehow like most people with MS seem to hide now and again. Mind you i am sure this would be different if i would have a support network of people with MS. Also having professionals to turn to,would be of great help.

 This is not an uncommon thing and it usually passes in a matter of days. I suppose it just feels safe.
 The problem with this behaviour is that we get into isolation by doing this.

 Often after some rest and re charge we come out as a better person :)

Planning ahead

It amazes me that most people do not understand or want to understand. Having MS most of us cannot plan ahead. In fact we can only plan by hour but  generally planning on the day is for most of us fine,well for me anyway. We wake up every morning  different.
Either pain or just not able to function on that day.

Everytime I need to cancel on the day due to MS symptoms,it gives me a suprise how there is no empathy in people at all. We don't cancel for fun,in fact we look forward to our outings or meeting friends or family. But having MS it's just not possible to make plans ahead.
 How often I have lost friends due to this is countless. Is it really that hard to understand and have compassion? After all it's not our fault.

This reason often makes me not want to make an effort. It's too hard and tiring to explain over and over why we had to cancel . So to the people that do understand,it means a lot that you understand.

Some of the basic symptoms bellow.
- difficulty getting out of bed. Our body aches and is very stiff that it's a struggle to get out at times.
- migraine and feeling sick.
- too much pain as in nerve pain,spasticity and spasms.

These were just a few,but there are many more of course.

Please know that we also hate cancellation but it's  a chronic illness and our days are very difficult from day to day.
Mas x