Cope By Create

Attending a Course When Having a Chronic Illness/Disease

You might have had a chronic illness/disease since you were small or you might have gotten it recently and attending school or a course can be difficult. The difficulties can originate from the illness/disease itself or they are due to your symptoms of the illness/disease. Should these difficulties decide whether or not you are able to go to school/take a course or not?! My opinion is that my damn PPMS with it symptoms have affected me enough to also prevent me to take a course or not.  They have already made decisions what I can do or don’t so this time I thought “Somehow I’m gonna fix this course”.Problems to overcome going to school/taking a course when having a disease

My terminology in this post according illness/disease

As already mentioned, the problems may originate from your illness/disease or it can originate from your symptoms. From now on I will use the term disease to save me some energy. Disease will include everything from mental illness (e.g. ADHD, autism or depression), cognitive disfunction (due to e.g. depression, burned-out, different type of MS, treatments, stroke), physical illnesses (e.g. Chrone’s disease, neurological diseases, Cancer, Cerebral Pares, Stroke) and physical disfunction (e.g. bowelsymptoms, restless legs, spasms, being in a wheelchair, not being able to use your arms or hands)

Obstacles

Your disease or its symptoms can make you not wanna sit in a room full of people. The reason for that can be psychological that you feel that it would be embarrassing for you, that people would stare at you. Or it could be physical. E.g. you know that you will need to rush to the toilet often or that you won’t be able to stay awake during the class or you will get increased pain during the class. Or the pain will be terrible when the class starts.

These are just a few examples, as you can see. You probably are saying to your self ‘why didn’t she mention this’, but if I would mention all diseases or reasons for you doubting going to school/taking a course are so many. What I want to express in this post is that it might be possible for you going to school/taking a course in spite of your disease and all its problem. And I want you to take a look inside yourself, your difficulties due to your disease before you decide ‘not to go’ to school/taking a course.

Make an ‘inventory’ of yourself

Give yourself a long moment to go thru your physical and mental obstacles due to your disease. Its also important that you make an inventory of your strength, because they can help you find solutions. They can also be the reason to why you decide going to school/taking that course in spite of your obstacles. They might way more heavy than your obstacles. Then take a look at each of them and see if there’s a way to ‘solve’ these problems. Some examples might be:

  • you taking an extra analgesic before the class.
  • Find out if there’s a restingroom or other place where you can have a rest in-between the classes.
  • Earplugs if you have difficulties concentrate because of noises.
  • Be seated close to the door and learn where the toilets are situated. Or maybe you can take medicine against your bowls activity.
  • Making sure you have a new diaper incase of your bladder leaks so you don’t need to worry about the smell of urin.

There are so many examples also to this problem solving of your inventory list. If there are obstacles you can’t solve yourself, contact the nurses you have contact with concerning your disease.

All problems may not be able to solve

Taking your inventory of yourself, your obstacles and strengths, might end up you deciding to not go to school/take that course. Before making that decision make sure that you have looked for advices concerning your obstacles. Nurses at your clinic may now of alternatives or you might find out thru internet how others in your situation have solved the problems you have. Maybe it’s possible to take that classes on internet?

There are many kids and youths who doesn’t have the alternative to decide not going to school because they have to attend to school. My advice is to talk to your parents, talk to your nurse or ask your parents to do so, talk to your teacher or ask your parents to do so. There are many schools who have a school nurse, talk to her. Most of the problems can be solved. I know, the factor of ’embarrassing’ isn’t easily taken care of. Everybody with a disease might feel embarrassed or shamed but we are different when it comes to overcome that feeling. In the end it’s about we ourself accept how we are so we more easily can manage those situation. But the way there may be long. And in the end there might be somethings we never stops being embarrassed of. I know, I know.

My way of how to be able taking a course

Since I’m not exactly like you, I don’t have the same physical body or the same mental capacity, way of thinking etc I don’t have the answers to your obstacles for going to school/taking a course. I can’t tell you how to think or what to do, because I don’t know you. I can only give advices that may or may not work for you. But I’m gonna give you my way of how I decided to take a course in spite of all my obstacles.

The reason of me taking a course

I miss being able to work as a nurse. This is reason no 1. My body and mind doesn’t allow me to have a ‘regular’ or ‘adapted regular’ work. I’ve tried that and failed it big time. Unfortunately there are no works that would employ me since I’m not able to work for more than an hour at time. After that reason my reason isn’t in any order.  They are; I want to feel useful, I’m missing contact with others thru work, we need money, I can’t help but feeling that society will feel that I’m lazy if not working, the day I will get my pension-money the amount of money will be REALLY low.

If you’ve visited my blog before you might have read how I reasoned back and forth to find out what I’m able to do. And one option (after some coffee with the best Sanna in the world) it ended up in the conclusion: I will become an instructor in Medical Yoga for Children and Youths. There have been several studies that shows that Yoga for children and youth of today would benefit them a lot. Todays society put so many demands of our children that they need to feel adequate and just slow down for a moment.

A study from 2014 on Medical Yoga in patients with stress related diseases, shown that the level of stress was decreased with the help of Medical Yoga. This wasn’t a large study, only 5 patients, but there are other studies if you search the web. Stress amongst our children is a humongous problem today. This Harvard study from 2016 shows Yogas positive effect in children.

My obstacles and how I overcame them

If you want to become an instructor you need to take a course. If it only had been on the web, and if I had been able to choose when I could watched the lesson there would have no problems. But the course includes 3 days of full days in another city, 240 km from where I live. And full days… not what I manage nowadays. Luckily for me I know the teacher (Sanna) so I got some inside information:

  • the full days included  Yoga practices and meditation so I would be able to rest in-between during the day.
  •  if I needed, I could go aside and rest.
  • So my Fatigue would be able to manage.
  • At lunch I laid alone in the Yogaroom and slept after or before eating. (I had the most delicious smoothie with ginger broccoli and other stuff which mixture doesn’t sound delicious)

Then comes my pain. Solutions:

  • I would be able to go aside, if needed
  • We would go by train to and from Gothenburg (the city). I would be able to walk, stretch and change positions as much as my pain demanded
  • the days included, as I said, a variation between yoga and meditation, and variation is good against my pain

 

My not functioning legs and hands (you should now how many pauses I’m taking while I’m writing this post due to my screwed up hands and fingers…):

  • Again; variation between yoga and meditation.
  • We took a cab between the hotel and where the course was
  • when I started to stumble Sanna was an arm to hold on to. Since she and Ida (another one from my part of Sweden) was my travel companions I didn’t feel that I had to hurry up to keep up with someone (at the trainstation or at town), they slowed down for me

 

Embarrassments:

  • I’ve actually not feel embarrassed anymore if I get spasm or starts to slur. Starting to slur is of cause annoying for me, but it is what it is.
  • I wore, as I always do, incontinence pads to feel secure in case of any leakage (urine or something less fun..)
  • Moving in shoes I always use my dorsal orthosis. Despite wearing this I stumble on the ground every now and then anyways. But I manage to stay on my foots and not falling. Since I got this orthosis I don’t feel embarrassed that much, if I trip or fall others sees the orthosis (since I have it over my trousers legs) and they understand that I’e got some kind of troubles

 

My economy:

  • I guess I really need to get commitments when the course is finished…
  • Gothenburg

The summary of this weekend

I’m so glad that I jumped on this course. Sanna, Ida shared a room at the hotel and together with the other 7 people we had a inspirational and educational weekend with lots of laughters and enjoyable meditations.

I knew it would come but I wasn’t prepared that it would hit me THIS hard – the hangover after not obeying my body. We came home Sunday night and today’s Wednesday and I still feel like I’ve stood infront of a train with Mr Sandman over me, emptying his entire bag of sleeping dust over me. That f***ing idiot. Where is he when I’ve got problems sleeping? Now, when I’ve been able to sleep with the help of only one sleeping pill for several weeks he’s decided to give me his entire bag!

I’m sorry, but I won’t read thru this post, just fix the pictures and the SEO text, but I will not bother seeing if SEO gives me a red, orange or green button. SEO can take MR Sandman and go somewhere incredible hot!

 

    Close up Me and Sanna

And yesterday the winter decided to come. In the end of February. (My tulips have just started to grow in my flowerbed so I’m really pissed!)

Our backside of the house, 06.00 AM February 26 2020

 

 

 

 

 

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