Fatigue is haunting me
This is the worst symptom of them all, according to me. Always, ALWAYS being tired in some degree. It makes me unsocial, it makes it hard for me to help my kids with teenage crises (and you know how many and big they are) and their homework, it makes me a terrible spouse, it causes a lot more for my husband to do in our home, it makes it difficult for me to work and so on and so on. Because having fatigue is not just being tired.
It takes away my brains ability to work in any way. Trying to have a conversation is almost impossible. It takes away my body functions. I stumble Beacause Mr balance decides to leave me and I drop things because I can’t fully control my hands and fingers. And I start to slur and I forget about things and thinking is like trying to find your way on a really foggy day. How can I cope with this symptom that takes away so much of my joy of living?
Fatigue is something that doesn’t only attack those with the different forms of MS. Everyone with a chronic disease can get it. It’s very common among cancer patients, no matter if they’re with or without cancer treatment.
These were just a few examples that illustrates that there are many that can be helped by reading this post. Close ones often can’t realise how the fatigue effects the one that got a it. Hopefully this post can help them too.
What causes Fatigue?
As in all different areas it is easier to battle an enemy if you know the enemys strategy. But in this case it is not to battle an enemy, it is more to learn how to live in your conquerors territory and build a functioning life. As happy as possible. Let us first find out why the conqueror has the rules it has.
Physical and psychical demands can be tiresome for everyone. Having Fatigue these demands leads to an overwhelming feeling of exhaustion and lack of energy that does not commensurate with the circumstances and activities performed. Groceryshopping, making the bed, having coffee with a friend, go and get your mail are not very difficult tasks for a healthy person. If you have Fatigue these tasks may be has hard as climbing a steep mountain. And many of those who has got PPMS/MS/SPMS/RPMS considers the Fatigue to be the most restrictive symptoms.
- In the inflamed or damaged nerve tissue there is a changed metabolism of nutrients. The damages on our nerve pathway leads to an increased energy demand for transmissions of nerve signals. To learn more about the nerve system you can see my post that talks of it.
- The brain constantly needs to compensate for malfunctioning neurological functions, which takes a lot of energy.
- There is an increased amount of inflammation molecules in your brain e.g. Cytokines that gives you Fatigue.
These factors above are primary causes of Fatigue.
Secondary factors are not caused by the PPMS/MS/SPMS/RPMS or other conditions e.g. cancer but they’re caused by other factors.
- Reduced physical condition because of e.g. weakness in an arm or poor balance
- When doing workout your body temperature is getting increased and having PPMS/MS/SPMS/RPMS you are more sensitive to heat.
- Medications for your other body symptoms, like pain, can worsen the degree of being tired
- You use other groups of muscles as compensation for those not working
- Psycological factors as stress, anxiety or depression
- Warm climate
- Malnutrition, you are not eating enough or you eating food that does not have the right nutrition.
- You don not drink enough (not talking about drinking beer or wine, now. But of cause; drinking wine may make you feel happier. At least for a while. But I do not recommend that solution.)
- Infections (I have been cold since November 18′ now, and all of my body symptoms are worsened…)
During the day the intensity of the Fatigue can variate. Most commen the intensity is worse during the afternoon and evening. Of cause that may just be a result of things we are doing demands energy and the things we do makes our levels of energy lower and lower. Another affecting factor is our bodytemperature. During the day all peoples bodytemperature rises. That is, our bodytemperature is lower in the morning than in the evening.
There is a big different on being tired as a healthy person or being tired because of Fatigue. I found this comparison online and I hope it can help you to understand the difference.
Normal tiredness, tiredness within a healthy person
- Energyconsumption in your body decides the level of tiredness you feel.
- The recovery period you need is relatively short.
- Tiredness has strong relation with physical and/or psychological factors. That is how how high physical and/or psychical demands you have on you.
- Can appear with or without effort. Is more frequent and intense then normal tiredness.
- It has a bigger influence on daily activities.
- The recovery period is longer.
- Can amplify other PPMS/MS/SPMS/RPMS symptoms. The same happens if you have another Condition that causes Fatigue.
- Can appear without symptoms of depression.
The Symptoms of fatigue you need to cope with
The symptoms are caused of the factors above and Fatigue can have many symptoms.
Loss of memory, learning disability
I have an own description of this symptom. Our heads are full of files. In these files all our memories and experiences are tucked away. There are all our knowledges of all the things We have learned in school, in work, in life. This are all managed of a little guy (yes, it is a he) and it is he who runs the office in a very rigorously way. But the guy who is managing my office is apparently drunk or just an idiot, cause he just runs around without getting the right files for me. When I want and need to have him store something new he neither can write it down or put it in the right place. I fucking hate that man!
If having fatigue you also need to understand the Factors that have a negative effect on our ability to remember. These can be tiredness, depression, stress, time pressure, approach, messy/noisy environment, phone, TV or Social medias.
Lack of concentration and cognition ability
The description of Cognitive Fatigue can be that you are tired in your ability of thinking. When you have Fatigue it is harder to stay concentrated and focused. This makes it more difficult to learn stuff and understand i. g. instructions like a recipes when you are cooking. You can find yourself standing and just staring on the recipes not knowing what to do which can be very annoying and frustrating for you.
Depression can cause Fatigue which can cause cognitive disabiliy
PPMS/MS/SPMS/RPMS and several other conditions can cause Fatigue which can lead to cognitive disability.
So what is the causing factor and what is the symptom of the cognitive disability. Maybe it is both your PPMS/MS/SPMS/RPMS/other conditions and your having a depression. It can be difficult to see what is causing your cognitive disability so they can treat you in the right way.
Being sensitive to stress
Because the brain uses so much energy when doing what you are doing. E. g. you have balance difficulties and you need to put on your socks. If you put them on standing your brain needs energy to both work hard to keep your balance and also think all it needs to think when putting on your socks.
If you have a longterm stress factor it would cause even a helthy person tiredness. If you do have Fatigue this long term stress will be harder for you to manage. Maybe you have an own business that is not going so well. A good friend or a close relative might have a disease/illness and you worry about them. Just two examples of long term stress.
Your muscles may feel tired and lacks of endurance. This leads to – your not doing as much physical activity as you need to, which leads to – impaired fitness which leads to increased Fatigue and tired muscles that lacks of endurance. There are a lot of evil circles when having PPMS/MS/SPMS/RPMS/other conditions… It can be difficult to getting started on simple tasks.
The isolation Fatigue can cause and all the negative feelings of not having energy to do “what you are supposed to do” can make you depressed. Having Fatigue can in it self lead to depression. Everything you used to do is so difficult for your now. What was obvious that you should take care of before is no longer obvious that you can do.
Good habits when it comes to food are extra important to a person with a chronic disease. We need energy, the right energy in our bodies. And no, I do not always follow these rools. This header tells you why. The fact that I do not like to spend my little energy to get myself breakfast or lunch…
When you are tired you may feel that your energy to be a fun and social person do not exist. And the thought of just getting there is tiresome. And maybe you feel that you are not as fun as you used to be so people around you do no longer have your company. You protect them from your boring company.
The times are probably many when you feel that you really to meet someone or going to a dinner or party but you can not see how that would be possible due to your Fatigue. Getting there, being awake when you are there, being fun and engaged in the conversation, maybe you know that there will be many persons and a noisy environment and for last; you need to have the strength to get home. And the following day, maybe following week, you will have to deal of the consequences of going there – a worsen Fatigue.
Your tiredness are just so withering. And yet you have difficulties falling asleep at night. Or maybe your pain or spasms or sense of always needing to go to the bathroom keeps your from falling asleep or wakes you up all the time. To little physical activities can also cause sleeping disorders. When your mind is full or maybe you are depressed will make it difficult for you to relax. Also the Fatigue it self can make relaxing harder. As soon as you put your head on the pillow your thoughts start attacking you and they just want let you relax.
The Fatigue never lets your head relax. It is working so hard and starts to act of defiance. When you feel that you are not in control of your situation, you have so much to do but you do not know how, the body tension arrives. These lovely tensions donates a lovely headache to you. Well, I love being sarcastic from time to time. Thats how I handle this s**t.
Depending on where in your brain you have your damaged nerve cells, PPMS/RRMS/SPMS/RPMS itself can give you moodswings. But Fatigue can also cause moodswings. Even healthy persons get moodswings when tired and as I earlier said; Fatigue is worth than being tired…
What to do now?
I know exactly what to do to get rid of as much as possible of my Fatigue. But the everyday life does not allow you to follow thru these tips and trixes. I know what to do and what not to do and I know that I will be punished if i chose not to obey the rules. Everyday is now a constant battle about choosing what gives me most joy – doing the stuffs or obeying the Fatigue. Much is about accepting the new rules in life you have to go by. In this case; the rules of Fatigue.
Accepting that is hard, so hard. It is difficult to do alone. At least I have needed to have someone to express all of my thoughts and feelings about this. I have seen a therapist, I have talked with familymembers and I have talked to my wonderful friends. My friends and my family are my lifejacket. At the same time I am feeling that I am neglecting them. Deep inside I know that I do not neglect them because I want to, it is my PPMS that demands that from me. One of this years goals are to make appointments with my friends. I would love to have at least one date per week, but since I need to be realistic I have put the numbers of appointments to once a month.
I know that everybody does not have a friend or a family, they are alone. But if you are one of them remember that there are therapists, your nurse, priests, maybe there is a group in your area for people with your disease, groups on the internet and so on where you can find support.
I have found someone who is also having a chronic disease with, amongst other symptoms, fatigue who shares her struggles and solutions on her YT-channel. Yes, I know several others with MS but most of them I do not know enough to be to personal with them. (Exception is my sister in law.) But this wonderful person is so personal on her YouTube-videos and on her Podcast that it feels like she is a friend of mine. Almost. Watching her videos I “get to be the one who listens and maybe come with input”.
Yep, I have a strong need of being needed. I am not so good to be the one who needs… But I do need. That is why I am here. Making a blog. Trying to make a blog. But I do recommend you to watch Cindy Guentert-Baldo alias Llamas love lettering on YouTube. And listen to her Podcast the Uncurated Life Podcast. Tonight or tomorrow her next episode will be release. YEY!
Doing what I can to Cope
I will for now try to follow the tips, tricks and advices I have been given . And relax when I need to (and when it is possible). Right now I would have needed to take a break, have some coffee and close my eyes. But instead I need to call my boss and tell him that I will not be able to work today or tomorrow either (f**king viruses!!!) and instead of closing my eyes I choose to take a quick glance of me closing my eyes.
I do hope that you will be back for my next post. In that I will share all my tips, tricks and advices I have been given concerning Fatigue. So join me then!
Do you have any questions or opinions of what I have written today? Do you feel that Fatigue is the hardest, most difficult symptom of your chronic disease? Are you a close one that have any questions about todays post? Please, feel free to reach out for me. As I said many times before, I want this blog to be a place where we can learn from each other to make our days as good as possible. I am 43 years old this year. I do not want my last 40 years to just be lived. I want to live them!
Information is partly gotten from: