As some of you know I am suffering from an Auto Immune Disease called Sarcoidosis. It’s an inflammatory disease that attacks mainly organs in the body. No cure has been found till today. The symptoms are said to be similar to Multiple Sclerosis with chronic fatigue as the annoying side effect.
In recent weeks i have joined groups where people discuss their suffering online and realised that many of us with an AID totally rely on doctors and hospitals. It’s saddening to hear how people are treated or how they then out of frustration self medicate with alcohol and pain killers that leads to more pain and depression. This all has inspired me to write this article.
I have been diagnosed with active sarcoidosis in 2013. My symptoms have been moderate with flare ups that usually last 14 days. Heavy fatique, breathing problems, head ace, joint pain, bloating, muscle spasms, nausea, brain fog, vertigo, ear problems: hearing and tinnitus, eye problems like blurred vision, dry eye and declining vision. I also started having panic attacks. Since last year the joint pain is on the rise – especially in my spine. This is giving me the most trouble as i am such an active person and really suffer under not being able to move properly.
I used to run 10k 3 times a week easily before the Sarcoid kicked in. Now i run whenever i feel ok to. That’s not very often and probably the thing i miss most from my ‘old’ very active life. I also used to go out dancing a lot and see friends beside working. But i had to compromise…
Honestly i stay away from hospitals and have check up’s irregular. Firstly due to my hectic travelling schedule but also because in the UK Sarcoidosis patients are treated in the same ward then cancer patients and the waiting hours to see a doctor can be up to 3 hours. It means sitting in the hospital sharing space with terminal ill people. I always feel guilty taking their space because they need the doctor time more urgent but i also suffered under the doctors ways of shrugging me off because i ONLY have Sarcoid and not cancer.
I often got home very stressed and depressed. And after deciding that i won’t take any steroid treatment i also started to go to the hospital less.
For a couple of years i just tried to ignore the Sarcoid, took Ibuprofen and drank a glass of wine or two at night to self medicate. I wanted it to go away in remission and hoped for the best but the alcohol + pain killer combo did not only not help but it also left me with severe stomach pains and chronic gastritis.
I realised that i had to act in other ways.
Looking at my life i think this auto immune illness has been in my body since i was a child. I had flare ups thought my youth but my parents thought i was pretending to be ill and did’t take me serious. Neither did doctors until i was about 35 years old. I had my appendix taken out with 10 years after weeks of pain. But it turned out that it wasn’t inflamed. I remember being punished for month after because my parents assumed i pretended the whole incident.
In march 2018 i stopped taking Ibuprofen as i was hoping that would settle my gastritis. I could not get myself to stop the alcohol yet. So i started there. When it 6 month later hadn’t done the job i embarked on a 10 weeks healing programme for my stomach. I finally managed to stop drinking and saw a doctor who recommended a medicine. I am now 6 weeks into the programme and already stomach pain free!It’s such a relief after all this time.
Why don’t i take steroid treatment ?
Until now i have been able to handle all my symptoms without. Saying this i have to point out that my pain threshold is very high. I guess due to the extreme pain i undergone during my sword swallowing accident. Any other pain after that has been ‘minor’ on my scale. However i rather sit a pain attack out.
Mind over matter!
I firmly believe that auto immune disease can be influenced by our mind set. Don’t get me wrong i know it’s real and won’t go away by wishful thinking BUT i experience on the daily basis that mind DOES goes over matter. Of course in the more severe cases we need steroids and other treatment. But keeping in mind that there is no cure for Sarcoid and other AID’s yet it seems to me that running to the Doc for every single thing that comes up should be the last resort.
My offering is for people who want to make changes or even try something new.
I am a sword swallower. Thats my full time profession and my dream job. I love being on stage so much that i would never let get anything in between me and my art.
Since i am ill i had to make adjustments. When i have a lot of shows i can’t go out see friends often. I won’t workout or do anything that’s hard on my body but rest up to collect energy. That sometimes means spending a day in bed. But i am happy to compromise.
Some mornings i am in real bad pain. Especially my back hurts. I know a good chiropractor and osteopath i can see. If money is tight i find a cheaper Thai massage or acupuncturist. Normally i feel already better during treatment simply because a physician is touching my body. Another thing is that i can talk to the physician better then to any of my friends who obviously don’t really understand whats going. I have a strong feeling about the loneliness that comes with an auto immune disorder and think physicians are better listeners then doctors because we are paying them for their time. So we have a full hour and can talk a little more unlike in a hospital where we get rushed out of the way because we ‘look ok’ and don’t have cancer…
Sometimes i feel better after treatment sometimes not. If not i go on a slow walk. I kinda hate walking but the fresh air lifts my mood. Something i learned along the way. Daylight + movement help with the joint pain as well. Much more then laying down. When i woke up in pain and i actively worked against it during the day i am feeling much better by the evening. And once i get to the Theatre i’ve almost forgotten about the pain because doing what i love distracts me and the adrenaline does the rest. It surprises me every damn day!
For me this is as good as drinking and pain killers. Alcohol in a small dose is lifting up the mood temporally. But so is positive thinking, daylight, walking, watching a great film or comedy, reading an inspiring book, watching a TED talk, light exercise, oxygen, a massage, and the likes…. and all these things don’t have any bad side effects like alcohol and pain meds have.
Doing what we love can arouse us, get the blood flowing and help us forget or overcome pain for a while. It becomes apparent that greater happiness is the first step in building more resilience against these horrible illnesses.
I recently talked to a acupuncturist in LA who had a really new interesting take on how to fight the flu like symptoms i had all the time. She advised me to change my supplements into higher dosages of Omega 3’s , Vitamin D and Probiotics and to concentrate on healing my gut instead of focussing on the flu prevention with tons of Vitamin C and Echinacea. I was very sceptical of it first but took the mix anyways because of curiosity from July 2018 onwards. It worked! My flu attacks have fundamentally decreased now. I moved from having the flu once a month to having the flu every 6 month.
The supplements Vitamin D, Magnesium, Fish oil, and Probiotics have helped me to a lot of progress but i still have high inflammation in my joints, nausea, brain fog and vertigo.
I keep hearing that the Keto Diet ( very very low carb diet) has helped people to get their AID under control. Since this is very new knowledge people are arguing against it. But again i am curious. Also CBD oil has been highly recommended to me for helping with pain and panic attacks. I just ordered some!
I can easily believe that our current nutrition with high sugar is damaging and actually making us more ill day by day. I started cutting out the carbs of my food and slowly transition into the Keto now hoping it will help me reduce the inflammation. If it does i am very happy to be on a diet for the rest of my life instead taking steroids to get by.
The bottom line is i firmly believe if we run from Doctor to Doctor for every little thing we are constantly exposed to the fact of being ill. Hospitals have a certain atmosphere and it wears upon us. I know in some cases we just have to have treatment but maybe its a good idea to reflect on ourselves to find out what we are actually really doing day to day to make ourselves feel better. How are we treating ourselves? Especially women! What food do we eat? Are we exercising? …
It falls under ‘self love’ exersices at the end. Why take medicine and see doctors if we fail to actually care for ourselves on a daily basis. Self love can not be injected by a Doc. We have to work on that ourselves. And this is exactly my idea about the mind set. We are programmed to feel helpless once diagnosed with an incurable illness. This puts us in a defeated position where we just wait for the illness to progress.
Let’s NOT give in and take the cards back into our hands and reshuffle the deck. If we search we will find individual alternative treatments that can help. A comedian i follow for example has Lupus and she swears that her annual fasting clean out in Thailand has forced the Lupus in remission. Many people report a carb free diet helped the inflammation to settle and i practise the mind over matter every day. If everybody would try new alternative healing methods from time to time we would find out faster what really helps. And caring for ourselves is a big step forward into feeling better as well!
Love MisSa x
Cover picture by Verena Gremmer