In the early days, when I was young and unconcerned – and especially: not chronically ill – I was able to conquer the whole world. I was ready for my life and I had so many dreams and corresponding life goals. Unbelievably so many goals, entire lists full. Focused on material and immaterial goals.
Young and brash.
Until I fell ill on the age of 29. Really ill, as some of my Dutch readers already know- I was diagnosed with MS. A diagnosis that changed everything.
My lust for life was gone. Just like the certainties in my life. In a period of two years my whole point of view at the world has changed. Hard, bleak and cold. I felt incredibly alone. Alone with my miserable thoughts. And not to forget: a literally black world. No more vision due to a double (!) optic neuritis.
“Those important life goals, for example owning a house, starting a family etc., gone.”
Black. Dreams became nightmares. Those important life goals, for example owning a house, starting a family etc., gone. Surviving or drowning, that was paramount.
Now, the fourth year of living with MS has begun, my life is increasingly controlled by MS. Deep valleys are regularly alternated. This time not with even more deeper valleys, but with many peaks of happiness and joy. The realisation that we actually have no security at all is very present. Because of this I made a decision: I’m going to make something of my life. With or without neurological problems.
My complaints have remained fairly stable after changing medication, the decline of my body is now fortunately not happening so fast. At least, this is something I must believe in.
This stability in health provides space in my head. The worst brain fog is gone. Time to start creating again. Set goals. Sometimes you get new goals by fortune. Like this goal, that I am going to share with you now. Last November (2018), I was allowed to attend a youth conference organised by EFNA. EFNA stands for the European Federation of Neurological Associations. They represent 20 European and international associations with a wide variety of neurological diseases. You can think of multiple sclerosis in these neurological diseases. But also Parkinson’s, epilepsy, migraine and ADHD, for example.
Among their members, it appears that there are still many young people with a neurological disease today, who are not well represented (enough) in their association. However, this does not stop at just their associations. Young people with a brain disease, or a related illness, do not get the attention they deserve from the larger public (the whole society) and politics.
To raise awareness about the impact of neurological diseases, EFNA has launched a campaign – #lifegoals vs. #brainlifegoals.
Life goals vs. Brain life goals
Are your life goals changed after the diagnosis? This was a question which was asked during the youth congress. We did not had immediately the right answer. We had to think for a moment. At least, I did.
You’re living your life, with or without setbacks. Fortunately, people are a very flexible species, and we often adapt fairly quickly. To the situation we are in. How good or how bad these are. We are purebred survivors.
The question of today is do we still have dreams after a diagnosis? Do we have any wishes? Or goals? Certainly. They can only be slightly different than before. Because we have to adapt to our new life with neurological complaints and therefore our goals as well. Moreover, I believe that the adaptation in life goals is also because we have become wiser by the years of age and wisdom…
Down below I discuss my 10 changed #lifegoals versus #brainlifegoals with you. Every time I show you my life goal before the diagnosis, and my ‘brain life goal’, after the diagnosis. Take a look how far these goals have changed for me (or not!):
1. Become rich (#lifegoals) vs. Enjoying life (#brainlifegoals)
Who does not want to get rich? And what does ‘being rich’ mean? To me wealth was having a lot of money. Being a millionaire. I wanted to be that, but unfortunately you do not have a study for ‘becoming a millionaire’ yet. If you are a millionaire, you don’t have any worries. You can do whatever you want. Buy what you want. Stuff makes you happy. Designer clothing too. Health? What is that? You are (and remain) automatically healthy. If you are rich, only sweet, cool things happen.
Nowadays my opinion about being rich has changed …. To become rich, in the sense of having a lot of money, for example: if I win the lottery, I definitely will not say no to the winning ticket. But wealth is much more than having a lot of money.
“Gosh, maybe I got more rich after my diagnosis than I thought!”
Wealth, for me, is having good friends around me. People who become family of me while they are not even blood related. Who support me through thick and thin. Maybe for you to have a family. Wealth is not losing loved ones. Wealth is to be able to do what you want. Wealth is freedom. Watching the sun rise. A delicious cup of tea. Your favorite dish. Or find a nice card in the mailbox. A smile on the face of a stranger you’re passing by. A good book. Discover new places. Dare to go out of your comfort zone. Gratitude for every day that you open your eyes again. For everything in life that you can create. All aspects that belong to enjoying life. Gosh, maybe I got more rich after my diagnosis than I thought!
2. Establishing marriage & family (#lifegoals) vs. sounding board (#brainlifegoals)
I always thought it was ‘normal’ to aspire to the concept of life: the suburban bliss.
Getting married and children was a normal picture for me. It is in our upbringing, society and DNA. This makes you happy. If you achieved this, your life is fulfilled. And for many people this is true. No discussion. But, these blessings are not here in my life.
Yet these data are also deeply rooted in my DNA. At first I thought I still had enough time to think about topics like children and marrying. A marriage never required me. Being together is also good enough. Having children was labeled under the ‘maybe’ button. But then you suddenly appear to be very sick, to ill to take good care of yourself. Then thoughts of having children crossed my mind. Can I start a family, with my disease and bad other lousy DNA? How can I put an innocent being into this world? Do I want this even when I’m not able to take care of him or her? What can I give him/her in life? Can I give him/her/gender neutral enough opportunities or do I only provide limitations, because of my own illness?
Right after my diagnosis I started thinking about these ‘big life issues’. There are too many personal issues for me to choose for having children. I would find myself too selfish to put one or more children in this world. Because of this I decided close the subject.
Although I have a very difficult time with this, I decided to focus on a different life goal, namely that of ‘patient advocacy’. All my good energy, and unfortunately that is not much, I like to spend on voluntary work.
With our own foundation Chronisch Samen Sterk for example. We help others who have just been diagnosed chronically ill. Because we know so well how chaotic this first period in a new life with a chronic illness is. With my volunteer work I hope to create more awareness about the impact of chronic diseases (such as MS), but also to be a shoulder for those who need it.
3. Making a career (#lifegoals) vs. Handle my own administration (#brainlifegoals)
Another painful life goal. I would make it in my life. I would become an interior designer. And a damn good one too. I did this for a couple of years as my profession. Until the sector in which I worked (the higher segment) did not turn out to be something for me. The mentality could and should be different. I would do it myself- own a business, become an entrepreneur. Interior design in combination with owning my own store. That was my dream.
“If you can remember your name and birthday again, everything is okay – Am I right?!”
Until… I suddenly had a head full of cognitive problems. And brainfog. I still have those problems, but luckily it is better now. If you can remember your name and birthday again, everything is okay – Am I right?!
It took months before I could keep track of my own administration. Because of those cognitive problems. For example, I could no longer understand what was actually written in a letter. Or I forgot things. Still do sometimes, but now I’m writing everything down…;)
Or worse: I forgot to pay the bills. Or maybe you recognise this: the simple fact that you are too tired to get out of bed anyway, and not being able to organize. The pile of papers was growing fast when I was just lying in bed! What a huge wish was this for me. Just a few years ago, to be able to arrange my administration properly again. Now everything is organised, and the achievement of this goal alone has been a great victory for me.
4. Own a fancy car (#lifegoals) vs. ground floor living (#brainlifegoals)
I always wanted to have a nice shiny car, an exclusive four-wheel drive thing. I do not even know a brand or something, I am not a car lover. But I knew I wanted a shiny car. Preferably a luxury ride. With leather upholstery, a wooden dashboard and television screens in the back of the car where no one is sitting long enough to watch a movie. Just to own it and be part of the society.
A walker* came in the place of a car, because your legs do not work properly anymore. How cool is that?! Maybe you can be happier with a walker than owning a luxury car.
I certainly value much more to one of my #brainlifegoals: to live on a ground floor. Living in an apartment is amazing. Now, I can not stumble over my awkward legs and there is a modest number of square meters to maintain. This apartment fits much more with my ultimate #brainlifegoal to remain self-reliant than owning that shiny car.
By the way, I now have the pleasure of using – if I want I can use this every day – a private driver with luxury transport and the possibility of Netflixing. Okay, I admit it: I have to share that driver. With others. And I usually have to wait 10 minutes before he finally arrives. But then I am in the center of Rotterdam within twenty minutes. Awesome- the subway!
*Today I no longer need a walker, it stays in the shed.
5. Round trip through America – Route 66 – (#lifegoals) vs. pain-free walking with a dog (#brainlifegoals)
My bucketlist-lifegoal dream: traveling through America on the motorcycle! With a leather motorcycle jacket and pants. The sun in your face and let’s go, drive into freedom!
I don’t want to think about this road trip nowadays. It’s been more than a year since I joined Fred (my boyfriend) on the motorcycle. What a wonderful, painful hell this ride was for me! Sure, the experience of freedom is enormous on a motorcycle. And with some nice weather it is still very enjoyable. But the terrible pains in your body that you get during and after the tour… I have to recover from an hour of motorcycle riding for at least a week.
Our holiday to Italy two years ago was a big challenge and a test for me. If I could do this, without to much pain and exhausting, then it might be possible to realize one of my life goals. After the holiday in Italy, I gave up on this dream. It was an amazing adventure, but much too heavy for my body. Nowadays there are even days when I cannot even get my new #brainlifegoal, walking with Guus the beagle without the experience of pain. If you see me stumbling… Still, I keep persevering and looking forward to the moments when I can go on an adventure with Guus!
6. Castle of a house (#lifegoals) vs. bed bunker (#brainlifegoals)
Ever since I was a little girl I can marvel at the most beautiful houses that are being designed. As a stylist I have been able to decorate many ‘castles of a house’. That was very nice to do! A dream to be able to own such a house once and to decorate it yourself has emerged. I thought that was wonderful, so much space. Everything equally beautiful. With those great Dynasty stairs. Decorated with the most beautiful design. Sighs…
Nowadays I do not care much about where and how I live. I can hardly maintain my current apartment. The MS has ensured that I suffer from extreme fatigue. The extreme fatigue is with me all day. My ‘good hours’ are from 8 to 11 o’clock in the morning. Then I extinguish as a candle. My bed is my biggest friend and my bedroom is the room in the house where I spend most hours. If the bedroom looks good and the bed is comfortable, I am a satisfied person! Even when I’m alone, I’m warm and dry. I can read, ‘work’, study or watch Netflix, how much more luxury does a person want?
7. Living abroad (#lifegoals) vs. to do shopping (#brainlifegoals)
More an unattainable life goal, but one that was high on my wish list. I would like to live in another country. Somewhere in South America. Maybe this has to do something with my roots?
Anyway, since my diagnosis I realize how much I feel about the city where I grew up: Rotterdam. This is my home. It is all well-arranged here. And here, at home, I cannot even manage to do my shopping in the store normally. Too many stimuli. From people, children, music, squeaky baskets or shopping trolleys. Too bright light. Lack of concentration and focus to get the right products from the shelf. Or without being able to shop without a list of groceries. Someday I hope to achieve this goal, without going home completely exhausted. Until then: online shopping!
8. Having a dog (#lifegoals) vs. More energy (#brainlifegoals)
For years this was on my wish list: having a pet. Preferably a dog. But if you work 40-60 hours a week, there is little time left for a dog. Still, it was my big wish.
Until you become chronically ill. Then you have plenty of time. Of course not. You have a full-time job of sickness! At least, I do… I did get the opportunity to think about a dog. I am disapproved of the MS and I spend all days in the house. An empty house. It is more than good between Fred and me. Hm, maybe it’s even so serious that we can start thinking about a dog. And suddenly Guus was there, last May! We have adopted Guus from the shelter and I was and still am in love right away!
That such a creature can be such a rich addition to your life … I did not expect that! I cannot imagine a life without Guus. He is there for me when I have good days, but also when I have very bad days.
I hope that one day there will be a explanation why you feel so tired when you have a chronic illness and better: a solution for it. Extreme fatigue remains a vague issue, which we cannot reallyvisionize. Actually, I mean more of a solution. Because, I think it’s annoying to have only two good hours on an average day. Time flies. Fast. I hope that I can change this in the future. I continue to keep up hope and now realize how carelessly I have dealt with my energy for the diagnosis. I kept on going!
“The biggest positive impact on my energy are three elements that I now apply in my daily life: healthy food, exercise and Guus”
The biggest positive impact on my energy are three elements that I now apply in my daily life: healthy food, exercise and Guus. Unfortunately, there is no time gain, but I feel better because of this.
9. Studying (#lifegoals) vs. Discovering who I am (#brainlifegoals)
Finding a good job later is very important. For this you have to do your best at school and learn a lot. I did go to several schools. Until I got the chance to get started on a challenging job. Working became more important than studying. I had already learned everything, I thought. My adult life has started.
Looking back at the period around my diagnosis, I realise that I did not know anything about life. Well, I studied. Basic knowledge. I had learned a profession. An incredibly beautiful profession.
What I had not learned was the theory of life. I had a very solid life until my diagnosis. Without too many setbacks. Around and just after my diagnosis I had to deal with health problems. Not only from myself, but also from loved ones around me. (Almost) Losing them, with the biggest loss of my mother. My mother and I were more or less simultaneously involved in severe health complaints. My mother it suffered an aggressive form of cancer, and I the diagnoses Relapse Remitting MS. My mother died half a year later after her diagnosis. This period has a huge impact on me.
“Now almost four years after the diagnosis I am working on a new project. Myself.”
My whole view of the world has changed. Things that were previously important are suddenly not important anymore. Now almost four years after the diagnosis I am working on a new project. Myself. Nicole version 2.0. This project started two years after the diagnosis and is still ongoing.
Discovering who I am. Actually, I have never worried about myself before. Though it is incredibly important. I have discovered that I really enjoy doing this study about myself. I also grow as a person and see this as an enormous enrichment to my life.
10 Being healthy (#lifegoals) vs. Combating loneliness (#brianlifegoals)
Being healthy was something natural. It is there. Normal. You do not have to worry about that. Of course, you have to eat healthy, exercise a bit and continue to live. Then grow old. A life goal that was very normal for me, maybe for you too.
Today, sometimes I am alone for whole days. Now I am a pretty introvert, so I do not mind living in my own bubble. But sometimes I feel lonely.
Sometimes I miss my work. Not the tasks that belong to the work. But the daily collegiality and conversations with people. Furthermore, you really do not hear me complaining, I have enough friendships around me to fill my days. Only those friendships are often only available at times when I am no longer available.
Because most people have to work. Then they have free time in the evening and the weekend. In the evening I am often no longer the nicest to meet and to cram everybody on the weekend is also a big challenge. But I’ll manage!
You have now read my #lifegoals and #brainlifegoals. Because of this you got to know me a lot better! Time to get to know you better: share one of your #lifegoals and a #brainlifegoals with me!
Nicole Donal is a young MS advocate from the Netherlands. You can read more at her blog, www.tiepiesnicole.nl, or follow @tiepies on Twitter.
You can find out more about the #BrainLifeGoals campaign here.