Or is it really a failure? Isn't it just you learning about yourself and your
ability to adapt to new circumstances?
All of you probably wonder ‘ what the *biiip* happened this year? You had plans and thoughts for this new decade, your family, your friends, your hobbies, your workouts etc, etc. How did you manage seeing your plans just float away with this pandemic flue? Did you revise your goals, adapt them after this new situation or did you float away too with the pandemic, not bothering to even try to set up things you wanted for yourself and your close ones?
Feelings of guilt
I do feel guilty for writing a post when I haven’t looked at your comments for… I don’t no when. ‘Feeling guilty’ is something I’ve been working hard with for years, but I’m guilty of ‘feeling guilt’ about most things in life. In the goals I wrote for this year I wanted to get rid of ‘feeling guilty’ and always ask my self ‘why didn’t I say/do what ever it was about’? I’m still working on that goal.
But I do feel disappointed that I’ve had to prioritize other areas of my life when I know that amongst all those spams are comments that warms my heart. And soul! Thank you all that have made so kind comments! When I started to blog it wasn’t about comments, it was about hopefully help someone with some aspect of having a chronic illness so these kind comments I’ve gotten are a bonus for me!
Me not having the time to go thru your comments has made me stay away from the computer and just write ‘a little something’. I’ve felt, and am still feeling, ungrateful for your comments. But I want to say to you, from the bottom of my heart; THANK YOU!!! I will read them.
2020, do I need to say more?
Well, this year has been strange for all human inhabitants of this world in some way or form. It has given me experiences that I didn’t even imagine me having to experience, not only the experience of a Pandemic flue. I’ve felt my body decay due to anemia that prevented me from doing heartbeat-increasing workout. That lead to even more decreasing of my physics… When I’ve gotten my two bags of blood, my first transfusions ever, I was not in a good shape. On top of that I’ve had a cold more than I’ve been healthy from the beginning to the end of this ‘God forgotten year’. So now I’m not in a good shape. Though, importantly, I’m still able to walk a couple of kilometers. And I’ve been working out more frequently now than in the beginning of the year. But I really need to get better working on my cardio.
The pandemics effect on my family life
It caused that I wasn’t able to visit a close ones deathbed. He lived more than two hours away from us – and due to the COVID regulations and me being in a risk group, I wasn’t able to go there. And I missed his funeral.
My daughter have been to school via the computer at home. It meant that I’ve gotten the role as teacher every now and then on subjects I’ve needed to read about to be able to help her at least a little. I can’t deny that I’ve appreciated having her home to some amount. She’s so old now! I can’t fully get that to my mind.
My sons school has been open since he’s still in compulsory school. But for even the simplest cold he had to stay home due to the risk of having the COVID. The same goes for my husband – for the simplest cold he’s had to stay home from work. Me being cold almost all the time is probably the one who has spread the colds… But I don’t get how I’ve gotten them? I’ve been isolated due to COVID almost all the time!!!
Thankfully none of us have tested positive for COVID! Even though the kids have classmates or classmates families that have tested positive. And my daughter have been out with friends to restaurants, shopping malls and partys… I do understand why COVID increased in those ages. They don’t really seems to get the urgency staying home. Yet me, my childrens grandparents and my sister in law are in risk groups. This has caused me a lot of headaches due to the fact me not being listened to when it comes to the importance of not being out and about.
Not being able to meet family and friends
This causes pain in your soul, as you probably have noticed. The fact that we live in one of Swedens rainiest citys hasn’t facilitated meeting others. It is not just to decide ‘we’ll meet then out there’. It isn’t fun being outdoors freezing and wet… Sure, FaceTime, ordinary phone calls, have been used, but it is not the same thing. Better than nothing. But my best friend isn’t quite comfortable with ‘that kind of dates’ so… Miss her! Met her for ten minutes outdoors when I gave her my christmas present.
I miss my sister and her family. Since her wife is more sensitive than me for infections and since I’ve been having colds all the time…
Before the pandemic showed up and in-between the periods of stricter rules I’ve been able to meet some friends. And my sister and her son was here for a short visit at my parents house. So they came to my house and met my family out on our wooden deck and had coffee. We had to have warm clothes since it was in the beginning of autumn but it was cozy! And her son, now 7 years, and my kids 18 and 14 years had a great time!
On Christmas day we met up with my husbands parents, two of his brothers with their families and significant others to two of my childrens cousins. We were down by the lake where my husband and his brothers grew up and grilled a lot of sausages.
The positive side of COVID
Can’t believe that I’m saying this, but yes, there is a positive side. And no, I would still prefer that the COVID never existed.
So what is it about this years experiences that have been positive? Well, the likelihood of being outdoors this much just to see friends and family would not have been without COVID. We would have met indoors instead. Getting air is healthy 😉
I wouldn’t have thought this much about what’s important to me. The goals I set before this year have been examined thoroughly during the year. Instead of getting disappointed in myself for not getting toward my goals I’ve tried to think ‘how can I do this differently to get closer to my goals?’ . Some of my goals I’ve just crossed over and written ‘COVID’ or ‘Anemia’ or something else.
Mäkse Life Planning
I’ve really gotten in to the concept that Serena from Mäkse Life uses in her planner. I can’t recommend her planner enough! This content and her recommendations of how to look on the goals your setting up; that they aren’t cut in stone. They need to be revisited and possibly revised or deleted. Watch her Youtube-channel! I’m using a bullet journal instead of her planner since it costs a lot to get her planner to Sweden and I’m not particularly full of cash… There’s a lot of materials that she offers for free and with the help from that material I’ve been able to integrate her method in my Bujo.
Why, why, why do we need to set goals and always plan
No, we don’t. You can fly with *what ever the saying is in English* and take the day completely as it comes. In some way that is just what COVID made us do. But for me it keeps me reminding myself why I want to achieve something and how I’m able to get there. This ‘why’ is so important to me. The things I do should be something that me or my family gains something from. I need to do my workout, yoga, meditation to keep my body as healthy as this *biiiip* body of mine is able to be. And since I feel better doing workout, yoga, meditation I get an easier person to live with and maybe I’ll also become a funny person to share a house with…
Just an example of how I think. Our life is so different compared to many other families. Im not saying that they don’t have struggles, but their struggles are unique to them.
Our struggles are unique to us. And by having my goals for me and my family in mind I can plan mine and my family days in away that they are less burdensome.
My family’s struggling with me becoming more and more a disable person who’s not able to do things or go places where I’m use to. We went out for a walk in the nature by the lake we live by. Where we went is a very beautiful place and the hike there is filling up your energy level. But this time…
Our walk that would have taken my family 15-20 minutes to take ended taking an endless time because of my body. In the end my husband more or less had to drag me towards the parking. And at the final end he put me on a stone beside the road and got the car in which our kids and dog had already been for a long time.
I cried and I cried. The people in the windshield where I was sitting had seen me the last meters so deep inside I figured out that they felt for me. But as I sat there I felt nothing but pity from them. That made e cry even more. But mostly I cried because I now knew that I never would be able to hike there again considering the narrow paths, stones and roots.
And now my goals comes in place…
Figuring out my bodys capabilities as it is ‘right now’ has been one of my goals. I have added a walking stick when I’m walking to enable me taking walks despite my bad balance. I’m taking longer and more often breaks than I had to before. I’ve changed my workout so it fits my physical abilities. I’ve changed at what time I’m going to bed and when I get up so I will get the most out of my days accordingly to what my body allows.
I’ve changed so much that when some days had passed from this defat at Helgö (the place of our hike) I thought “are you just accepting this? You love the lake, you love to walk in the forrest! Are you just letting these things go without trying new ways, other ways, to enable these kind of hikes?”
Result of setting goals
My goals forced me to become me again. Me, who finds solutions. Not giving up without a fight (which I’ve tended to do many times). I tried to work when the body said ‘no’. I found a new way to get myself a meaning when I’m not able to work. No, I sat down and went through what had hindered me on this hike. And I found ways to manage those hinders and I will damn it try these options before I call it a quit!!! I will be back there. Bringing a large thermos with coffee (with milk) and something good to chew on and a blanket to sit on. That this hike normally would take 15-20 minutes aren’t important. I just to have to made sure that it can take a couple of hours to do this. But it’s oh so worth it! You should see that place in the spring. Or in the summer. The birds, the green trees, the forest flowers, the rocks going into the water. It’s a perfect place to recharge your batteries. Especially if you have a body and mind as I.
What do I really want to achieve with this post???
My intentions this year were to share more about being chronically ill and how you can make your day less horrible. Maybe to be able to help a significant others to someone who’s ill and I wanted my ‘yoga business’ to get going. But the helpful posts have been few and my income from my business is zero. No, I’ve had to revise my goals a lot this year. But I’ve managed to do 4 short films about yoga for children in wheelchair. Another day I’ll try to post at least one of them.
But for now;
I wish you all a happy ending of this strange and shitty year and a considerably better new year!!! Just bring on 2021 - I think I'm ready for it.
MINDFUL OF BEING SCATTERBRAINED
Me enjoying life
I’ve had the most wonderful days Wednesday-Sunday past week! I can’t remember when I last could enjoy so many days in a row with almost none sadness in mind.
My family was supposed to leave Sweden for a vacation in Greece last week, but something about a virus called Covid -19 (have you heard of it? I surly haven’t…) happened to the world. So just a couple of weeks ago my husband found a cottage for rent on a camping site in Haverdal, situated at the western coast of Sweden. And being there I realized that I wouldn’t have change that trip against the trip to Greece. The reason for that might be the hot and sunny weather we were lucky to have. And I can tell you that the nights felt just like a night at a hotel in Greece – sweaty…
Of course there were the usual feelings of sadness for not being able to stay up in the evenings playing Yatzy and cards with the hubby and kids, for not being able to take the strolls as I normally do on the dunes, for not having the body strength in the evening to play adventure golf with the family and so on. But actually, that sadness was almost non. The feelings of letting my family done was almost down to zero
The power of mindfulness
Lots of mindfulness practices
That is what I’ve done, many hours (when I add them together). I’ve really tried hard to get my yoga and meditation done everyday, and yes, there are days I’ve gotten none of them done. But I’ve also allowed my to just pause every now and then to see all there are to se around me, whether I’m indoors or outdoors. Sniff up all the senses. To listen to the sounds around me. To feel what my body feels like right then. Or feel the wind against my arms.
My breathing is something I return to several times a day. To get my breathing all the way down in my belly. It helps my stressed out brain to slow down and it’s helpful against my pain. And of cause – it gives oxygen to my brain.
And I really try to listen to my body, what can I do without getting a pissed off body that does anything it can to make my day miserable. This is why I’ve not finished my web course about doing yoga in a wheelchair. I’m struggling with it but I’m getting better when it comes to accept the fact that my body, not my brain, decides what I can or can’t to. But being mindful about my body and its limitation helps me understand myself better.
Harvesting of my training
This trip we took I really managed to be ‘mindful’ using mindfulness. I enjoyed the sounds – there were so many birds!!! Not many seagulls, but birds with wonderful vocalizations. Children laughing, the thunder (no rain), the wind in the trees, splashing in the ocean and so on and so on.
I could feel all the scents from the sea, foods, flowers, grass and also some not so nice scents…
The sun warming my skin, the wind making the warmth tolerable, my hair tickling my nose (not so comfortable), the soft and warm sand, the too hot pavement, the sand that had made its way on to my bedsheets…
I felt the taste of the sweet ice-cream, the taste of newly brewed coffee, the taste of the most delicious pizza I’ve probably ever eaten.
And my inside felt joy! Joy about being my kids enjoying their days. Joy when they played with our dog on the beach. (Yes, dogs were allowed where we were.) Joy when seeing our dog realizing that he loves to dig in the sand. The joy I felt when I stayed up longer than usual to watch the rest of my family playing adventure golf while I had our oh so wonderful dog on my lap.
Short about social distancing
Yes, it worked out just fine. Everybody kept the distance on the camping ground and the restaurants we ate. I never went into the store since I’m in the group of “high risk people” when it comes to getting it. Unfortunately my throat have been sore since yesterday so the packages I ordered haven’t been picked up yet.(papers for my office and a cordless vacuumcleaner (to make it easier for my to vacuum our house. I always get in to a fight with the one we have since either the cord or the box that holds the dust bag, ALWAYS get stuck on something.)
Ok. Just had to pause and breath for a minute. I get angry just talking about vacuum cleaners…
Please, let me share my experiences with you
The course I’m making is in Swedish. But if there’s an interest of yoga in a wheelchair in English, please reach out!
I have plans of making courses or events, like Facebooklive or youtube live, about yoga for children and youths, for beginners. I want to share and hold courses in meditation and mindfulness, what I as a chronic ill/former trained nurse/closeone to person with cancer person has found use of it.
I so want to be useful for others. Analyzing that statement: am I doing it for feeling good about myself or genuinely wants to help others? This is something I’ve asked myself over and over again. I decided that the reason is to feel good about myself I have to stop having my blog, stop trying to make a course and just focus on my life as a wife, mother and friend (and all the other things I am).
I truly want to be helpful because I know (and you know that I know if you’ve read earlier posts) that yoga, mindfulness, meditation and getting a normality to your not so normal life are cam be good for you.
Falling into the Positivity Trap
I really fell into the ‘always be positive trap’! I started this blog to help others thru their chronic illnesses by charing information and advices of how to manage all those side effects of our illnesses. I started to scan blogs and websites about all topics that are relevant when having a chronic illness. And then I lost my track…
When a full-blown anxiety-attack strikes
What do you do when you have an full-blown anxiety-attack and none of your coping-methods help? Or, as in my case, I didn’t want to use my coping-methods. So tired of always having to fight these dark thoughts.
The cause of my anxiety-attack was all the stuff I need to deal with. All these everyday-stuff. Wife-stuff. Mother-stuff. Daughter-stuff. Being a good friend-stuff. With the difference that everyone around me, and me, are being affected of an illness that I have dragged into our lives. These issues gives me feelings of being the one to blame for all negativity, guilt. And I feel worthless as a mother and wife. My upbringing of our kids have totally failed. Just the upbringing of our two years old dog, Wille. They would be better off without me.
I know that these thoughts are dangerous for me and hurtful for those around me. I’ve already acted the wrong way to these feelings once time (took my life in August 2019 – I couldn’t even do that correctly). I Made a promise to my kids and husband that I would never do that again so I can’t use that as a coping strategy…
So what did I do when I had this full-blown anxiety-attack? In the end I’d used a combo of bad coping strategies and good coping strategies. The bad coping strategy– took extra sleeping-pills to fall asleep faster. I couldn’t stand letting that day include more minutes. (I know how many too much I can take without my body shutting off. I DO ADVICE YOU TO NOT DO THE SAME THING!!! How we respond to medications are very individual and you may have a more potent medication for sleeping-disorders than I do!!!)
My good coping strategy: Did my breathing techniques which makes me calm since I have to put my focus on my breathing. This is not easy! Practice this when you are calm. Preferably every day. If you then have an anxiety-attack you will get use of all your practices.
It’s strange, but every time I’ve had an attack like this, the morning after the deepest darkness is gone. On the other hand – the day after can start with someone triggering these emotions again and a new anxiety-attack flares up. Hopefully one of my coping strategies has a result that time.
Nobody wants to see and read on Instagram about misery.
Our wonderful, Corona-infected, world don’t want to read about the ugly truth. Let’s play the ‘pretend game’ where everyone are rich, beautiful and oh, so happy!!! I slipped in to that game for a second and now I’m turning that game off. That game can be fun to play for a while, but when you realize that many of those other players ARE rich, beautiful and happy and they doesn’t give a fu** about you, or how fun you think that game is… That game isn’t for you. ‘
I know that you choose how you want to respond to things you see and that it’s your responsibility to know what’s real and what’s just showing off. But it’s difficult. Especially when you have so low self-esteem as I have very often nowadays. That feeling of inadequacy hasn’t to do with the feeling ‘I wish I travelled’, ‘I wish I was rich’ or ‘I wish I had such a fancy dinner’. No, my feeling of inadequacy has to do with me not being able to give my kids as other kids seems to be getting. At least according to Instagram, Facebook, Pinterest or what social media you watch.
It is not ok to feel down and think that life sucks. That your paycheck sucks. That the politicians sucks. That being sick sucks. That everyday-life, sometimes or often, sucks. Your supposed to smile anyway, you son of a b! Be positive for christ sake so you don’t make others feel bad! Never EVER tell them how you really feel!
I’m aware of my horrible language but I’m so over always excusing myself, always feeling the pressure of ‘having to do something good for the society’, always feeling the pressure to write positive quotes and tell the whole world of ‘how grateful I am for…’.
I’m so tired. So terrible tired. I can’t see how I can go on like this, year in and year out.
What you want others to think of you
I know that my closest friends and relatives don’t mind me telling the truth but I don’t want them to think that I’m a ‘complaining’ and ‘depressing’ person.
A split personality
At the same time I think of all the things I want to do that gives me joy. Like becoming instructor in yoga for youth and kids. Hold classes in mindfulness for others with chronic illnesses. (Because I can guarantee them, by own experience, that learning to breath the right way can help you thru an anxiety-attack.) And I want to have yoga for those who needs a chair to yoga. Yoga for those who can’t perform advanced positions (like the dog with is arse facing the sky).
And I want to have a dog that I can take out even if I’m in my wheelchair. But we have never taught him how to walk without running infront of our legs or without over-stretching the leash. Finally we have found a good dog trainer and started in her class!
No surprise; our dog was the one who was the least obedient one in the class… It was so obvious where we went wrong in our parenting, listen to her theory-lessons at the same time as I reflected over our dogs behavior…
At the same time I feel the expectations from the world around me that they want me to feel good and do my best. I feel the expectations that I shall ‘think positive and conquer my physical impairments and do great things’.
Somewhere deep inside I yet hope that someone out there feels “it isn’t just me who is struggling” and being helped of mine oh so depressing posts on ‘my’ social medias.
Then comes the lightning
Today we finally got to see the sun!!! In my ‘sunny-corner’ on our patio it has been warm enough to show my legs and arms. (praying to the higher powers that I will get another skin tone than that ‘corpse-white’ they’ve now got.) Unfortunately it’s still cold everywhere else outside my ‘sunny-corner’ but there’s hope. I know I will feel a little more happy if we get a sunny and warm summer, but I live in Sweden, so…
It’s not much I’ve written in this post but still it has taking me two days to write it. I think I’ve mentioned it earlier in the post – I’m so tired 😉 Please excuse this post for the strangeness in it’s first heading. I don’t understand how I made that read background that pops up and I can’t change it back…
In terms of Covid -19
I hope that raging virus treats you gentle and no-one close to you will get seriously ill. Even if I’ve got PPMS and just got my antibody treatment I’m not worried for my own sake. I’m more worried about my parentes and parents in law and my sister in law (she also have treatment for MS, not the same kind of MS as me, though). My belief is that it’s dangerous for those who ‘the normal’ influensa is dangerous to. Covid -19 has just spread more than ‘the normal’ flue. That is what I believe, not claiming I’m right.
How do you deal when you get your anxiety-attacks and what are your triggers? Love to hear from you!
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”. Continue reading “Attending a Course When Having a Chronic Illness/Disease”
Can’t help having Chris Rea singing repeatingly his “this is the road to hell” in my head. I do hope that the road leads to a hot place, since I’m addicted to the warmth, but I would prefer a beach and not hell…
Psychological illness due to the diseases affect on you and/or your family
I just want to say that I’m sorry for this long time without any helpful posts but me and my family are having a tough period now. Hopefully this period can lead to a post where I write about the psychological affects your MS or other chronical disease can lead to. This to prevent you from fall so far down in the hole as I have. Most people would probably say that I’ve been in the bottom of the hole, but life has thrown me so many curved balls that I do not dare to hope that the worst is over.
Ask for help
My advice to you is to ask for help in time when you’re feeling down. Don’t be afraid to tell them if you feel that taking your life is an alternative! I wish I had. I wish I had listen to the little voice in me whispering that the world would be a better place without me. Whispering that it would be better for my husband and kids without me, since there are so many things they need to adapt to because of me.
If I had told my contact in the psychiatric sphere how I really felt I would probably not be where me and my family are right now. And this is the reason to why I have to focus on other things right now. I will try to post shorter “posts” on my Instagram and your welcome to follow me there. I’ll try to write there about my coping strategies (which are very basic and few right now because of me about to becoming depressed). My best strategy is to see my friends even if I really have none energy. I need to see other persons than my family. It sounds harsh but consider that I’ve been bound to our house for several weeks now. I haven’t been able to drive because of thrombosises in my left leg so if I’ve had to go anywhere I have had to wait until my husbands working day is over so he could drive me.
I’ve been isolated and for a social person like me, it leads to depression.
This is a very short version of what has happened but I hope to be able to tell you the long version in the future. Please take care of yourselves!!! Learn of my lesson. Ask for help. There are many different places you can call and talk with someone if you need to. I’m sorry that I don’t have the strength to look up any links and numbers to pass forward to you. But I know that the podcasts https://www.murdermythmystery.com/ and https://www.hillbillyhorrorstories.com
have some recommendations for you in the USA. If you live in Sweden call 1177 and tell them your problem so they can guide you to the closes help for you. If you have any questions for me contact me true the message function in my instapage or thru messages in FB. The link to FB . My account on insta is CopeByCreate.
Now back to just existing. That is difficult enough right now. Love to you all! Can we fight together?
I will be honest with you. This past month/months have been really difficult for me. And that is how it goes when having a chronic disease which is not stabil. So I’ve been having some kind of crises and several days everything has been like gigantic big holes hard to climb out of. This is a very common exprience for many people but when you’re down in these wholes that doesn’t matter to you. You feel that it’s impossible to move on, to get out of that hole. And I’ve been so ready to give up. But I guess I’ve kept on fighting. I’m still here as you can see.
Since Wednesday (today is Monday) I’ve been writing on a post that I really want to post. But my fatigue is more than troublesome and the must to to-dos have been followed of new acute to-dos.