The art of living with MS and how to juggle with our lifes!

Hi steemians. We come in all kinds, shapes and sizes, colors, genders and ages. And even though we don´t know one another in real life we sometimes get glimpses of each others stories through blogs and comments.

Some of you deal with depression and some of you have to use a wheelchair though we don´t see either of it in our profile pictures which is good as we have so many various sides of our selfs.

I have spoken openly in one of my blogs on Steemit about what I am dealing with as probably a life long battle. That is the MS disease and for educational and steem-friendly based purpose I´m going to tell you a bit more about it. I know a few others of you guys have the same or similar fiend to battle with so I sure know I´m not alone.

While research on the cause of the autoimmune disease MS is still kind of a mystery we whom have the disease, we are still struggling with our symptoms while the doctors and scientists are trying to find a cure.

The newest of news were that there was some material in a sunscreen that was helping rats with MS. Well those news came shortly after some other news about a lot of very dangerous materials in sunscreens. So you don´t know how to process the info or what to believe in all this, you just hope for the best :)

(I made this diagram for my doctor to understand my condition better in my last relapse)

But I´m going to tell you a bit about what MS is and how it has affected my life and my art. Yes my art. Because in the beginning it hindered my art carrier and education and then I left art for MS but later I was challenged to work with MS in my art, so now I am sewing it all together in the widest meaning of the word.

MS is an autoimmune disease but was usually referred to as a nerve disease as the nerve cells attack the myelin that is supposed to protect the nerves. With the result of all kinds of scarring in the brain and spine.

In the beginning of the 20th century they called it the lazy disease in Iceland as people became to lazy to walk ;) But MS seems to be much more common on the northern hemisphere where they have connected one of the factors to lack of D vitamin. That is not the cause, only one factor that can get you more vulnerable of getting it but doctors still don´t know what causes it. My grate grandfather had MS and one of my grandfathers systers but it does not run directly in families. Today it is called the disease of the young people as most of MS people get sick at the age 20 to 40.

There are 4 different types of MS but they are described as following:

The symptoms can vary from blindness, double vision or all kinds of eye problems to numbness in the body and disturbance in heat and cold sensors in the skin as well as itching , tingling, getting spasms and tremors, loss of strength in muscles that can lead to full paralyses. Vertigo, dizziness and fatigue and often problems swallowing as well as getting urinary tract infection

For people with RRMS and SPMS this can be one of the invisible diseases like "Fibromalgia" and arthritis of many kinds but most of us MS-ers start by getting "fibro" diagnosis but we often have several kinds of arthritis as well as MS.

The autoimmune system is like that. If it starts working the wrong way it can continue to go the wrong way and you can become a collector of sicknesses. This is of course all just a collection of symptoms. And when you have spectrum A, B, C it´s called something and then if you have a spectrum of B, C, D it is called something alse even though some of the symptoms are the same or overlapping.

I my self was diagnosed with "fibromalgia" around 20 years of age and MS when 28 years old. That was after getting totally blind on one eye and getting totally numb in my body up to my chest. I was working as a costume and set designer for a high school play in the evenings and working in vocational training at the phsyc ward during day so I was working a lot.

I never got full recovery from that first attack and never full recovery from all the attacks or relapses that came twice a year after that. But it´s almost all invisible. When I´m in a relapse I often draw or paint my pain as I don´t feel like a whole healthy body. I feel like a body that is all set in invisible junk ;) I haven´t felt normal for 17 years but when in a flair I feel extra un-normal ;)

My first year after the diagnosis I felt like some kind of a "special effect" character. I didn´t know how I could walk as I didn´t feel my feet and I didn´t know how I could breath as I could´t feel my lungs but somehow I could. I had relapse after relapse my first year and my doctor wasn´t sure if I had SPMS or PPMS but the years have shown that I probably have SPMS as I get better in between but always have some of the symptoms left. Later I was also diagnosed with Lupus or SLE systemic lupus (the type that attacks your organs).

When I got sick in the beginning I was on my way to the U.K. to take my masters degree in arts but I had gotten accepted in two well regarded art schools in London. Goldsmiths University and Chelsea college of Arts. But my fate was going in another direction as my disease was being aggressive.

I did not go to London for sure and I had to quit working after a while and focusing on getting better even though it seemed totally out of my hands. But later I started to teach art history at a high school and managed to do that for several years as it was only 40% work.

The medications have been improving as well as getting more dangerous but the year 2001 when I got sick of MS the so called "alfa, beta" medications were new on the market. I started Avonex and then shortly after Beta Interferon as Avonex wasnt doing anything for me but those were all injections. So I had to inject my self with medicine once a week and then every other day.

Three years before this I had made an artwork for an exhibition on the Living Art Museum in Iceland with an injection and a blood bag with the recycling logo on it as well as the frase "Artistic blend" and it was hanging over my bed when I met my husband. He had a heavy injection phobia so I took it down of the wall so he could sleep over at my place ;) Later he had to deal with his injection phobia as I had to inject my self on a regular basis.

I got some strength in between and was exhibiting a lot between the years 2002 and 2005 and went to the university in Iceland to the psychology department with the fear that my brain had gotten very bad. After getting good grades after the first semester even though I had to make the computer read everything for me (after scanning it wit a c-pen) as my vision was still very bad I had proven to my self that I was not that brain damaged. The flunk rate in that department is 60% so I was satisfied and quit as this was only a challenge for me ;)

But still I was to scared to go abroad for my masters and I was always afraid of booking an art show as I could possibly get sick and possibly not deliver. In stead I opened a silkscreen studio and a shop where I could regulate my time around it but my husband was working in the shop while I worked when my health allowed it.

The "Alpha, beta" medications were supposed to work up to 30% in stopping relapses in this form of MS but some doctors said they didn´t even work half that much and still there were no medications for people with the PPMS and PRMS. Well they did not work for me either and in 2009 after getting two relapses per year new medicine came on the market. That one was called Tysabri.

I was supposed to think of my self as lucky getting Tysabri as I was in the first group of 50 people with MS that were accepted for a powerful medicine like that. I had to think well about it and discuss it with my family as a few people in the U.K. and U.S.A. had died after being on this medication. The thing is that Tysabri can waken up a virus that many people already have in their system and is called JC virus. If you get sick of the virus you can get something called PML. So Tysabri increases your risk of getting this rare brain infection—called progressive multifocal leukoencephalopathy or(PML) and PML usually leads to death or severe disability.

At that time there was no scanning for the JC virus in the bloodstream here in Iceland but I had written about them doing that scan in the USA for example. I was very unhappy about this lack of scanning but I decided to try it out as I recently had gotten a new relapse with paralysis in my legs. I was very frightened though because I had a very bad feeling about this.

Shortly after my first injection I started to get more strength in my legs but I also started to cough blood.

I went between doctors for few days coughing blood for them in small trays but was always sent home, told that this must be a side effect from the Tysabri. How little did they know. But after the emergency ward sent me home they gave me an appointment with a lung specialist and a 3D scan the day after. They didn´t even tell me that there was something wrong with my blood sample. So the next day I went to the 3D scan and then into the lung doctors office. He told me to move very slowly, sit down very carefully and don´t move. I laughed and asked him if I was on the brink of the grave. He did not smile back but was very grave when he said. "Let´s hope not". Then he called for a wheelchair and I was injected with blood thinning medication. So I was in the hospital with blood thinning meds for 24 hours and had to inject my self daily for the next two weeks. It turned out that I had 5 blood clots in one of my lungs and 1 in the other.

This is where I discovered harshly that we MS people are always used as lab rats. The same can probably be said about many other diseases.

A few weeks later I also got hepatitis and some strange new pain in my wrist and ankles. So in my books Tysabri awakened the systemic lupus in my body.

I was of course without medications at that time and my doctors were very keen on getting me back on Tysabri but they didn´t want to accept my theory about getting the blood clots and the lupus from the medication. But I said no to all medications for four years after the Tysabri case.

I was very relieved last year when my doctor told me that he would never press on me to go back on tysabri again. Time had shown him that more people had gotten blood clots in their lungs from it. And later even one woman in Iceland died of the PML so now they scan everyone as they should have in the beginning. But a lot of people are doing better than ever on Tysabri so it can be a blessing for some but MS people always have to be aware of the fact that they can be juggling with their life.

While I was taking it easy first at home with my paralysis in my legs then at the hospital and again at home with my hepatitis I was drawing and water-coloring. My daughter was four years old at the time. In that age where the golden sentences drip of the childrens lips like honey I used to grab them and write them down. Having a collection of golden sentences from my child I decided to make an illustrated book. She made up the name of the book her self but it was called "Furðufó" which is gibberish. "Furða" means "Strange" or "veird". So Furðufó is something veird/funny :D

When you can´t go around and do stuff (I´m such a do-er at heart) it´s good to have something like art if you can use your hands. And even though I´m always a bit numb in my hands I can use them without trouble. Almost two years ago I even started to take piano lessons to strengthen the nerve messages between my brain and hands so I use my hands a lot. I also know the feeling of loosing all the fine movements in my hands as I did in 2001 and I barely could write my name. For many years I had very hard time finding my keys in my pocket or my bag as I could´t feel anything. But I´m much better today (Thank God).

I hadn´t done much of fine art for a while then or after having my daughter in 2005 and I was mostly focusing on my design job at my silkscreen studio. In the beginning of the year 2013 my former Art history teacher from Art School now the manager of the National Gallery of Iceland came for a visit at my studio along with a curator and an artist from San Marino. They were searching for an artist in Iceland that beside being an artist also had MS (We are a few here ). They asked me if I was willing to collaborate with an artist from San Marino whom also had MS.

We were supposed to make a fanzine together exhibited and curated by a project called The Little Constallation at the National Gallery.
So me and Lory Emme (the artist from San Marino) started to write to one another and at the same time gather information for our topic but that was about the first people known of in history that probably had MS. That were two lady´s in Iceland in the 12. century. But that is a story for another blog that I will deliver later.

But then what I had been so scared of happened. I was in a relapse when the opening was held in the National Gallery. I had terrible intentional tremor, like I had Parkinsons. Could hardly lift a coffee cup. So I just managed to attend the opening after 5 days of steroids on the hospital and walking with a cane. But it was all right as it was a book and fanzine exhibition with a curator and all and our fanzine had already been printed. So I didn´t have to do a thing those day´s before. Just show up with my cane. Lucky me!

In 2014 after four years without medication still having my two relapses per year my doctor convinced me of trying something else. He was convinced that I would be permanently disabled in ten years if I wouldn't take any MS meds. I had newer tried Copaxone (and I knew it wouldn't kill me) so I tried that one while waiting for other medications to arrive on the market.

After almost a year on Copaxone I got a relapse (3 new scars in my brain) and I decided to try a new medication called Fingolimod or Gilenya.
The good thing about Gilenya was that it was a pill taken every day but not an injection. The problem with it though was that I had to take the first pill in the cardio ward at the hospital as one of the side effect could be heart turbulence. I was observed very closely for 8 hours and everything was OK. So I took Gilenya for two months but started to feel very tired.
My blood work showed that my liver was not working properly so my doctor wanted me to take a two week brake from Gilenya. I did and when starting again on the cardio ward I got the heart turbulence. So good bye to Gilenya.

Shortly after that two other medications came on the market one called Tekfidera and one called Mabthera. Tekfidera was a daily pill but Mabthera (an old lymph gland cancer medication) is pumped in the vein every 6 months.

So in the fall of 2015 I started the stronger one of those two medications Mabthera and I have gotten 3 injections of it and for the first time since 2001 no relapses. Each injection takes around 5 hours and I´m given a bit of steroids with it.

I have gotten a lot of my strength back but at the same time I have been getting worse of spasm (has probably nothing to do with the medication). I have been able to do a lot of physical things that I could´t before like doing the carpentry work in my old garage when turning it into art studio and I have really enjoy´d being able to do those things my self. I am aware of the fact that some people abroad have gotten PML of Mabthera as well but none of them was taking it for MS so maybe they had other underlying factors. But at the same time I know I am a guinea pig using this medication for MS. It is like having two choices and non of them good. So looking at the bright side; I will probably not get lymph gland cancer while on it ;)

But my energy has also increased a lot since the year 2011 when I started to take the low dose medication LDN or Low dose Naltrexone. That one makes magic on people with autoimmune disorders and it is not expensive as the license of it has expired. So it´s also an anti capitalistic medication in way which I like very much. So many medications are hyped up by big medication companies and you newer know if the industry owns the doctors in a way. I know they invite the doctors this and that that could be kind of like bribery.

I was supposed to get my next injection of Mabthera in June but as the National hospital is a bit paralyzed now (because the wright wing in politics are trying to suffocate it with lack of money so they can push in some private hospitalizing) the staff is not able to do their job very well. And I have to make sure I get my injection on time my self by calling the doctor in time. But I forgot so I wont get a new MRI and a new injection until later in august. In the meantime I have some bad flue and that scares the shit out of me. The thing is that almost all my relapses have happened after a flue. When the system is attacked by a flue it becomes aggressive to fight the flue and at the same time the B cells start to attack my brain and spine. But I´m just going to be a Pollyanna and be OK.

I exhibited my first new art work for years now, but my last exhibition was last year with an older interactive artwork.

This one is exhibited at the moment in my gallery space at the Hiddenstreet lodge studio and is without a title but has it´s MS references for those who choose to see it that way.

Hope you´r healthy as you can be with positive thoughts and dreams and creativity as your shield and sword in life´s battle.
Sleep tight!
M.