The ones that do have multiple sclerosis can be a challenging disease. Our friends and family it can be the same,challenging. For the ones we don't know it can be an unknown disease. More and more often i get confronted with people that have no idea what MS actually is. Some never heard of it,and some don't really understand it. Sure there are people that know what it is ,but in generally i meet people that have no idea.
I travel a fair bit between Europe and Australia and it's surprising to see that its a pretty unknown thing. I must say Australia and Amsterdam are quite informed with MS. But in contrary to the French,not so.
Considering we live in 2018 you would think that MS would pop up a lot more then expected. Parkinson on the other hand most people know. Could this be due to Michael J Fox who has Parkinson? I am not saying this disease is not bad but merely just saying this because its not so well known as MS. It could be coincidence that the people i meet have no idea and someone else with MS may meet people all the time that knows our disease. Who knows?
Then you have the people that don't believe you. Why is this? Would we really pretend to have MS? Why would we want to do this? Do we really make up all of pur symptoms and struggles as a lie?
Isn't it more about the people questioning us,because they are not capable of understanding such a complex disease and therefore judge us and disbelief? Not having the intelligence to understand or just plain simple "being mean". I have no idea what reasons these people have to disbelief.
I myself have had family members telling me that i have no MS,and that i use it for my own interests. This really hurts but at the same time it just confirms the stupidity and how a person can be so darn mean. The fact that we use this against us,is just plain stupid. There is no advantage of having MS,in fact nothing at all. No amount of money would i want to have MS. But i have no choice,the fact of the matter is i have MS and the MRI's prove it,let alone my MS neurologist and specialist confirming this.
So to all of those that are unknown to this disease,please look it up and before you tell someone who has MS that they are faking it,please think again. You are hurting the ones that have this horrible ,challenging disease. Why? Maybe because you don't understand and its unknown to you but it does not give you a reason to say or act in this way.
To all my MS readers i hope this does not happen to you,as we deserve better.
Please follow me :)
Best
Mas x
Monday, 17 September 2018
Thursday, 6 September 2018
Frustration and Tears
To my MS readers, i am sure my heading sounds somewhat familiar. Although i hate to admit this,but i do have moments of "Anger,Frustration,Sadness or all at the same time. It doesn't take much to have an outburst of frustration and a flowing of tears after. I suppose this is all part of our MS journey. it's quite common to have these emotions. in fact sometimes it's good to have these,it shows we still have the fighting spirit in us.
I have had MS for quite a number of years and my experience is that it does not get any easier, for me that is. What does make it easy is the information i can get on the internet and knowing i actually have MS.
A few weeks ago we went off with our boat sailing. Yes you would think "sailing" how can she do this"? Well to be honest i don't do a lot. My husband does all the hard work and i will press a button here and there to help out. It helps that this is a modern sailing boat and self furling boom,meaning all the hard work gets done by a push of a button. Okay we still need to do some work regarding ropes and navigation but basically i do not do much. I wish i could do a lot more but my body gets pretty fatigued due to the sun and trying to stay balanced. I love sailing and enjoy the silence and the freedom.
My frustrations sometimes come after our trip. I am so exhausted and my body is so fatigued that my MS symptoms set in full force. This does not happen all the time though,but a few weeks ago it was really hot and we had no wind. This sets off my fatigue and my legs become so heavy and tired that i literally feel like i need to drag them. My husband asked me "can you walk to the shop to get me a drink,it's only 5 minutes he said"? If you can manage he added on. I looked at the shop and it seemed pretty close but the idea of having to walk while feeling so tired and in pain just seemed like a big task. I decided to walk to the shop and only 5 minutes into my walk i stopped and burst into tears!!! I came to realise that this walk was too much for me. Feelings of feeling useless and frustration that my MS determined when i could walk just got me so frustrated and sad at the same time. The thing that got me was that i had no choice. I wanted so much to walk to that damn shop but couldn't.
I walked back in the port,crying all the way. Wiped my tears away as soon as i arrived and got back on our boat pretending all was fine. I ended up cleaning the boat crying the whole time.
I guess it's okay to cry and get mad. MS is not easy and although we all march on,we fight everyday to lead a normal life. Some days are just harder and we get tired to fight. This is okay.
I am sure we all have had days like this and you know what "let it out". We cannot always be tuff and soldier on and sometimes we need a few tears to keep ourselves going.
To my MS warriors :)
I have had MS for quite a number of years and my experience is that it does not get any easier, for me that is. What does make it easy is the information i can get on the internet and knowing i actually have MS.
A few weeks ago we went off with our boat sailing. Yes you would think "sailing" how can she do this"? Well to be honest i don't do a lot. My husband does all the hard work and i will press a button here and there to help out. It helps that this is a modern sailing boat and self furling boom,meaning all the hard work gets done by a push of a button. Okay we still need to do some work regarding ropes and navigation but basically i do not do much. I wish i could do a lot more but my body gets pretty fatigued due to the sun and trying to stay balanced. I love sailing and enjoy the silence and the freedom.
My frustrations sometimes come after our trip. I am so exhausted and my body is so fatigued that my MS symptoms set in full force. This does not happen all the time though,but a few weeks ago it was really hot and we had no wind. This sets off my fatigue and my legs become so heavy and tired that i literally feel like i need to drag them. My husband asked me "can you walk to the shop to get me a drink,it's only 5 minutes he said"? If you can manage he added on. I looked at the shop and it seemed pretty close but the idea of having to walk while feeling so tired and in pain just seemed like a big task. I decided to walk to the shop and only 5 minutes into my walk i stopped and burst into tears!!! I came to realise that this walk was too much for me. Feelings of feeling useless and frustration that my MS determined when i could walk just got me so frustrated and sad at the same time. The thing that got me was that i had no choice. I wanted so much to walk to that damn shop but couldn't.
I walked back in the port,crying all the way. Wiped my tears away as soon as i arrived and got back on our boat pretending all was fine. I ended up cleaning the boat crying the whole time.
I guess it's okay to cry and get mad. MS is not easy and although we all march on,we fight everyday to lead a normal life. Some days are just harder and we get tired to fight. This is okay.
I am sure we all have had days like this and you know what "let it out". We cannot always be tuff and soldier on and sometimes we need a few tears to keep ourselves going.
To my MS warriors :)
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