I am in that phase now. That phase where it is impossible to slow down. Yet I have been thaught that it is crusial for my body to slow down. Relax. Rest. If not, I risk to make my symptoms worse. But this time it is too late for me. I have already let it go too far. I am all stressed out, not about something life changing. Not about my disease. Not about the financial status in the world or in our family. No, I am stressed since I feel I need to do so much right now in our home and over the fact that I should rest cause I always have a week of being finito after I have gotten my antibody treatment but now I should be ready for work again. But I am not.
I have been doing too much Kon Marie in our home since a couple of weeks. It is not because I have to do that right now but it all began when our son Filip wanted changes in his room. To be fair, he has had the same walls and decor since we moved here 11 years ago. And back then he was almost 2 years old… The only furniture that has been changed is his bed. Our daughter Elin got her walls and roof painted last year and she also got a new bed so yes, it is not more than fare that he should have changes made too. But with my fatigue symptom from my PPMS is making it hard to make things get done as fast as it could have been some years ago. And it gives me such a bad conscious and that makes me do more than I actually manage considering I have a work to go to too.
One thing lead to a nother and suddenly I find my self surrounded with task and projects to do. You see, if he needs to clear out childrens stuff from his room, the keepsakes needs to be put away. In our storage room there are no more room and the box I have already begun filling with his stuff had to get inside so I do not fill a new one if there is place left in the old one. Ahhh!!! You know the drill… So now we have several boxes with the kids stuff in one of our family room. I have to go thru the piles with keep, through, stay in the room and give away things.
As if that was not enough I have gone through several places in our home, thrown away what needed to be thrown, bought storageboxes, folding clothes and linens and towels the Kon-Marie way. And still i have so many areas left to go thru. But I have let it go to far. At the same time as I started Kon-Marie our home I decided that I was gonna start this blog. In my head were already many plans and obligations so when I also added these projects the hell broke loose in my head. As soon as I lay down or sat down to rest thoughts ruined all attempts of resting. No rest at day, as well as a head full of thoughts, means for me no sleep at night.
I feel that the fatigue is the worst symptom of them all. (The times when I lay crying in my bed wishing that I did not have to be on this earth for that moment are worse, but they are thankfully not that many right now.) The fatigue hinders me a lot. It makes me choose to stay home instead of doing fun things with my family, meet friends, do things with my co-workers. It makes all the things I normally love to do seem boring and several are the times when I choose just laying in bed with some music in my ears. It makes it hard for me to help out with daily chores and making our home looking cleaned with a scent of freshly baked cinnamon buns. (That is how many swedes wants their home to smell.) It makes it difficult to enjoy life.
Fatigue, something a lazy person has invented
No, no, no. There are several conditions that can lead to this brain fatigue. Examples are stroke, dementia, meningitis, traumas against your head, brain tumor, cancer and ME (myalgic encephalopathy). A healthy brain is energyefficiant but for someone with fatigue the brain uses more energy to perform when performing. MRI studies have shown that in a mental activity a damaged brain, as with PPMS for example, the activity in the brain is lower compared to a healthy persons brain.
I won’t dig too deep in the medical explanations but in our Central nerve system, CNS, the nerve cells task is to send information between our body parts, as legs and arms, and the brain. And send information the opposite way too. There is a protection around these cells so the communication will go quick, and that protection is called Myelin. When you have MS there is an inflammation on these cells (it varies from person to person which nervecells are under attack) and this inflammation breaks down the myelin. It is called demyelination. The cell gets a damage that can make the transferring of information between body and brain slower or it can lead to a complete blocking of the information. Depending of where in CNS the damage is loses the person different problems. In the post “WHAT HAPPENS WHEN YOU HAVE PPMS/MS/SPMS/PRMS” I describe a little bit more about what happens in our body when PPMS/MS/SPMS/PRMS strikes.
What this means for someone with fatigue is that if our energy depots are emptied they are empty. Everything we do after that makes the remaining hours of the day a living hell and the day/days after we will be “hung over”. That is the best description of at least how I feel. I am hung over when I have done more than I have energy too. It easily becomes a bad circle if the one having fatigue does not listen to his or hers body when it says it is tired. To much done, to little rest causes bad sleep at night. And bad sleep at night causes him och her not getting the energy depots refilled and lower energy the next day causes difficulties relaxing and so on. YES!
It is just how it works for a healthy person to, but remember; a person with PPMS/MS/SPMS//PRMS/brain-damage needs more energy to perform compared to a healthy one. Getting dressed, getting in and out of the shower, putting on make up, make a sandwich and so on is using much more energy if you have damages in your brain. In my case it means, as an example, that I have to sit down when I put on my clothes, shoes, brushing my hair. If I do not do this my balans gets worse and the risk of me falling gets increased. But by doing this sitting I save the energy that my body would have needed to put on focusing to keep me standing when I for example lift one leg while I out the trousers on. Hope you understand my point.
I am sorry for the bad picture down below, but I just felt for using my Prima marketing watercolors and my new Sakura Pigma Micron brush pen. Still need a lot of practicing when it comes to lettering.
The smallest text says: a very easy explanation of the difference between a healthy person and a person with PPMS/MS/SPMS when it comes to how much energy is needed to put on one leg of the trousers.
How does Fatigue affect the chronic ill?
The worsened balans mentioned above is one of our bodys motor skills. Other motor skills is coordination and musclestrength. All these can be negatively affected of the fatigue. (The drawing above is an example how these three are depending of each other.) Other common effects of the body can be that the affected one lacks of patience, is tearful, gets headache, has problems with concentration, has difficulties making decisions and the person can be sensitive for noises or light. It is not easy being a friend, a spouse, a parent, a child or what ever when you sometimes wish that everyone should shut up and just go away or you are feeling that you need a hug from every person in the world. And not to forget; it is not easy being a friend, a spouse, a parent, a child or what ever when the person you care about wishes that you should shut up and just go away or that person just needs to be hugged.
This is a difficult, very difficult, part of the fatigue, cause how can others know what you as affected person needs. And how should you as a close person know what the affected person needs. Communication. Yes, you probably knew that good communication is needed, but is it always as easy done as said? I know I still have problems always telling the truth – I am so tired of always being too tired to do this or that, and I am so tired of always bursting in to tears, and I can not expect the rest of my family stop making noise att 8 pm just because I have to sleep then. And so on.
As an affected one you do not want to be experienced as boring and nagging and not ever being able to help out. And as affected one you many times try to protect your friend/spouse/parent/child/or whatever from the true not, so fun, you. Cause that boring person is not the real you. The physiotherapist told me; “yes, it is you, it is the new you. You need to accept that to be able to cope.” Mehhhh. I will never accept that that new person is me. The new body might be mine and I might need to rest more and considering what I should do and not should do, but the boring person who rather goes to bed than spend time with family and friends that is not me. The real me. Sorry, Mr physiotherapist.
What worsen the Fatigue?
Loud nosy spaces like very open restaurants, the grocery store, concerts can worsen the Fatigue. Some are, as mentioned earlier, sensitive of light. Many people suffering from one of the kinds of MS are sensitive of heat and some are sensitive of cold. Smoke/smoking and sleeping disorders also affect the person with MS. Here comes another “example of mine”; I get very slow and tired of the heat but I rather be in heat than freeze cause when I am cold my bodyparts stop working. I can not use my fingers properly and it gets harder to walk, as a couple of examples.
It is easy to be misunderstood
This fatigue is difficult in that way that it can be misinterpreted as being jaded (fatigue syndrome) since the symptoms are very similar and when you are jaded your brain are to tired to work as it should. It was misinterpreted in my case. I was diagnosed with Fatigue Syndrom for about 3 years, no one ever investigated if there was something else that caused my fatigue.
This post are just a little scratch of the surface of the problems with Fatigue. How is the Fatigue affect you and your life? What is the biggest problem for you concerning Fatigue?
Please, do correct me if I am using wrong terms in my posts! And I hope that you will come back to my blog. As you have probably understood; the Fatigue is my greatest struggle right now, it dictates my life and decides what I can do and when. But my intention is to as soon as possible post what you can do to handle your Fatigue.