The list can go on by well meaning people that try to give us advise on how to treat MS. I am sure most people mean well by giving their advise to us but this can be very frustrating for the person with MS. In fact it's pretty annoying. If things were that easy, MS would have been cured. Or if we followed that diet we would all have been feeling better. The thing is most people that have MS do a lot of research and read up about all the information or the new drug that will become available. This is not for fun but merely because we have to. We need to know which medication best suits us and know the names so we can discuss these options with our neurologist. We are often our own doctor when things don't go well and we need to check if they are the side effects or MS in itself.
So when we get someone telling us that this certain diet will help we get somehow irritated because it's not so simple,MS is a complex illness. I see an MS specialist because it's so complex and any other neurologist just doesn't understand. I am not the only one seeing a specialist for MS.
What gets me is i am doing my daily tasks as best i can and i would get a remark like, " don't you keep yourself busy? Or have you been walking around all day for fun? Firstly i cannot walk around all day because my energy is pretty limited and if i make the mistake of walking too much i suffer the consequence and pay the price of being in pain and all the symptoms MS throws at me. It also causes issues when i try to sleep because i have walked too much and therefore i am in pain and cannot sleep. So yeah this is not "walking for fun".
Yes keeping myself busy is a good one, if only i could on some days that i am hit with MS fatigue. MS fatigue is not the normal fatigue that i am talking about, but a fatigue that hits you and your down! It's the fatigue where your legs and arms feel like concrete and every part of your body hurts by moving it. It sucks all the energy out and even without doing anything. It can strike at anytime and at any moment and for no reason. It doesn't strike because of physical activity (although it can worsen) but it can strike even when you wake up or doing absolutely nothing. It's our brain that is faulty and it has nothing to do with our activity or a busy work day.
By the time i have my housework done and gotten myself ready for the day i have already used a lot of my energy. So to think of doing some hobby or event or walking extra is pretty difficult. You see i am already exhausted (MS in itself) and knowing i had to use more energy is just not possible.
You see we are not healthy like you, we are struggling to be normal and everyday tasks that most people do naturally and come easy is not so easy for people with MS . Every little task is a challenge and every step is thought of........... can i walk those extra stairs? Everyday our mind is faced with challenges and if it's a bad day, well then we are just out of order.
You know i am still very mobile and lucky i can still walk those stairs but there are many that cannot do that anymore.
You know next time a person says something like " just keep busy and don't think about your MS" really?? Is that all you can say?? Maybe do some research before these words come out of your mouth.
I used to be a very busy and active person before i was diagnosed. My days were filled with taking care of my kids and husband and keeping our beautiful home spotless. I was a neat freak and loved my home clean. I also loved interior design and would often head to the store and buy beautiful things for our house. I played tennis three times a week and would even play on the weekend with my husband. I would ride my bike often with my family in the weekends too. I was a very active person but socially as well. I met up with mum's from the school and have outings or lunches and meet up coffee's. My days were never boring.
Now it's a different story. My life with MS has changed this and that is okay as i have adjusted . Sure sometimes i miss the old me or wish i could play tennis again or be more social. So when someone tells me "don't you have anything to do " or are you just walking for fun? That can hurt.
I truly hope that there will be more understanding for those that struggle, but not only MS but also Parkinson, Lupus and many more invisible diseases.
All we want is understanding and empathy.
Best,
Mascha
