Falling into the positivity-trap

It's funny how everybody considers honesty a virtue, yet no one wants to hear the truth.
heartfeltquotes.blogspot.com

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.

Be positive!

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!

/Fina

 

Coping Strategy when down / depressed pt 6 – Using a Planner

Filled my vains with fluid

If you’ve ever felt down or depressed for a longer time you know what it does to your brain. Your ability to remember things to do, meetings, children activity and at what time your spouse has his or hers workout and so on. Even remembering that you need to do the laundry and what sort of laundry you need to do that day becomes difficult. (And here I need to take a break cause this reminded me that I do have laundry to take care of now…)

If you’re already struggle with a bad memory due to e.g. fatigue or damages on your brain from an accident or from disease, your brain will more likely say “syntax error” when you’re trying remembering stuff. I know that there might be some of you who haven’t heard of “syntax error” and if your dragging with memoryless you might have forgotten what it means. Google it. Continue reading “Coping Strategy when down / depressed pt 6 – Using a Planner”

Coping strategy when down/depressed pt 5 – finding a new community

I guess I’m all into Problem Focused Coping Strategies (that’s not quite true…). I don’t know if you’ve felt that my strategies are problem focused if you’ve read my earlier posts? This is part 5 in my serie about MY coping strategies when down/depressed. You can read part one here. The Coping Strategy I’m gonna talk about today can be put in that problem focused coping strategies category but it can also be put in the category of Emotion Solving Coping Strategies.

Finding additional allies as a way of coping

For me it isn’t about sitting and pondering of ‘what strategies will I use for these problems/emotions’, and I doubt that you are doing a choice of coping strategies deliberately. It just happens when your reaction of the problem/emotion knocks at your door. When I was faced with my diagnosis I choosed to join an association for those with neurological diseases/illnesses to get support and good advices from others in situations as me. When your ‘new’ you don’t know how to handle all emotions and problems, both in the society but also in your social life.

Every second Thursday they gather for a cup of coffee and chatting about everything. It’s a place where oddly enough the main focus isn’t about you having a neurological disease, the main focus is you being able to meet others who doesn’t put you in the “being sick category”. Because I’ve been working or having healthcare appointments there are many gatherings I’ve not been able to attend. But on one of those I could attend last year ended up in me and my father joining Wings for life.

Coping with your disabilities

For me a big problem for me has been and is me not being able to walk. Walking is something I loved doing my whole life. And there’s another aspect to it; if you want to get from point A to point B – how do you get there? I had a wheelchair already at home so people could drive me when my legs failed me. Just so I would be able to go to vacation and similar without anything hindering me. After my attending in that Wings for Life my companions in that neurological association had a serious talk with me –  they told me how to do to get a wheelchair like theirs.

They didn’t need to ‘talk me into’ that. I knew I needed and wanted a chair like theirs. It would be a freedom for me having that kind of chair. So last year I got one. I also learnt about ‘Rullegruppen‘, ‘the Wheeling group’. It’s a group where they teach how to wheel with the most minimal use of energy, how take yourself over hinders on your way etc. But they also play sports together.

Who doesn’t want to try a chair like this? Wille our Bichon Havanaise gets a ride of my son…

Emotion focused and problem focused coping

My dysfunction

Just to clear how I think when I categorize the strategies I used when having problems with my disability. I also remind you that this categorization I didn’t do at the time, this categorization is made looking back at ‘my situation’.

Emotions where highly involved when I realized that my walks were under threat. By getting myself a wheelchair I could drive myself gave me a freedom and increased my self confidence. Instead of feeling ‘I can do nothing’, ‘my life is over’ I gave myself the ability to think ‘I can do this’, ‘I can go wherever I want’ (not quite true, but yet). I used emotion focused coping strategies.

That I also used Problem focused coping strategies is I guess rather obvious. I also believe that many would say that every action I took where problem focused and so I thought too. Since I was going to write this post I had to toss and turn my ways of solving the problem and emotions over and over again. It ended up with my conclusion that I used both of these coping strategies.

Sense of belonging, not being seen as a sick person and know where I can ask for advices due to being sick

No matter whether you healthy or sick, young or old, working or not working, rich or poor, fat or thin, wimp or popular we all need a context where we can feel safe, accepted, being able to laugh ’til you cry or cry ’til you laugh and so on. Being lonely is an option that people can chose or being forced to be. Some of them who chose this don’t want to have it other way, while many don’t want to be alone.

Humans are mostly pack animals. We need our packs and they can consist of family, relatives, friends. We also have different packs – packs at home, packs at work (but the members of our pack at work aren’t always the ones we would choose) and packs in our sparetime. Me finding a pack in the neurological community was a way for me to cope with my new reality. I wanted to see others and see how well or not well they functioned in their everyday. Learn from them. You know the saying of “not inventing the wheel again”? Well, why should I do that when I could learn of their experiences?

When seeking others like you can go wrong

When I began going to these meet-ups I must admit that my patients fear had rubbed of at me. As a nurse in cancer treatment I have several times informed patients about the different association their type of cancer can contact for support, questions etc. Many patients have said that they don’t want to talk with others in their situation cause it would be a reminder for them that their sick. Some have felt “I don’t want to meet others and making each other depressed because a constant talk about the sick part of us”. Some have felt that if they have any questions or problems they need to solve they prefer asking the healthcare, even though an association would have more experience about certain matters.

I’m not saying that everybody has to join an association. It all depends on how you feel and what kind of use you would have of it. It’s up to you. And of cause, there are associations that probably just makes people feel more sick than they are. Who makes you feel depressed about your situation and they just feed that sense of “it’s not fair” and the thoughts about how unfair everything about their disease/illness is. I’ve met that kind of people when working as their nurse. I would not be helped by joining the same association as them…

My recommendation is that you try finding an association for your illness/disease and meet the people a couple of times. Then make the decision if the association can benefit you.

Coping strategies: laughter and trying disabled sports

Almost every week the ‘Rullegruppen’ also do sports. They’ve tried e.g. bowling, archery and I’ve participated in floor ball and goal ball. Soon we’re going a way for a day to try downhill skiing. There are also sorts of camps you can go to where they let participants try many different sorts of adaptive sports. Not all cities in Sweden have a well adapted forum for disabled to participate in or up hold their interests for sports. Where I live there aren’t to many alternatives but with ‘Rullegruppen’ I get to try some alternatives. But we’re not in any tournaments.

We have two very active faces in our group and thanks to them and some other citizens we in wheelchair will be able to take part of several runs during the spring and summer. I really need to start practicing wheeling longer distances… Attending those practices with the ‘Rullegruppen’ have given me so much. Advices and a incredible fun time doing these sports together. It doesn’t matter that we’re in wheelchairs our wills to win that game is just as strong and everyone is giving their best. Lots of laughters and lots of crashes. I’ve gotten the responsibility to bring the first aid-kit.

My coping strategies ‘finding a new community and an identity not being the Sick’

I guess I can be thankful of not being a person that just sit down on a sofa saying “it’s all over, I will never have fun again”. I know, there are so much that you have to think about when getting an illness/disease so you don’t have the strength to also having to look for things you never did before,  like for me ‘learning to use a wheelchair’.

The three others in my family, my husband and my kids, have had their sports that they’ve been going away and practicing one-several times a week. I go to see my shrink. Or my doctor. Or leaving blood samples. Now I finally got a place to go to and meet others. I’m not saying that I don’t appreciate meeting my friends for before, they now that they are essential to me.

But I used to sing in a choir before

I haven’t done that for some years now. One of the purposes with singing in a choir was to meet others and do something together. People that most of them I had no contact with outside our singing but while singing we had and did something together. Difficult to say what I mean… ‘Rullegruppen’ has given me this kind of context again. I have a place and a ‘task’ to attend to every week. At least I need that.

Have your illness/disease given you opportunities that you didn’t have before? Have you joined some sort of association after your diagnosis? How do you feel about being part of association tied to your illness/disease?

Would love to hear your experiences!

My wheelchair playing ‘table’ at a scrap event

 

Coping strategy when down/depressed pt 4: Listen to podcasts

Are you having a rough time? Is the world and the whole universe laughing and pointing fingers at you? Are you depressed or just feeling a little low? In this serie about coping strategies I’m sharing my tool case of coping strategies. Hopefully you’ll find a strategy to ease your day at least to some degree, that you hadn’t thought about as a strategy. Or maybe I can just show you what ‘coping strategy’ means. You can find the first episode here, and if my PPMS treats me the way it does today I’m gonna post ones a week about MY strategies, on Wednesdays (sometime during the Swedish daytime 😉 ) Continue reading “Coping strategy when down/depressed pt 4: Listen to podcasts”

Coping strategy when down/depressed pt 3: Doodles

Don’t feel like doing anything? I’m in that state several times a week. Somedays I’m in that state for whole the day. When nothing seems fun, and I can’t stand hearing any noice, like music/tv/pods, I take a pen and either an empty paper or my bullet journal or my diary and let the pen move by itself. Sometimes it becomes a doodle, sometimes it becomes nothing and sometimes it ends up with me holding a watercolor brush painting something. Continue reading “Coping strategy when down/depressed pt 3: Doodles”

Coping Strategy when depressed or feeling down pt 2

I can say that I’m in a period where I bounce between all the strategies I’ve got.  Last week I started what hopefully becomes a serie where I write about my coping strategies that I use when I am feeling down or depressed. Or at least I am trying to feel better with the help of one or all of them. Some days everything just sucks… Last week I told you about my reading-strategy. Today is all about music. If you don’t like music, stop reading now because your going to feel that the rest of this post is just shit. Continue reading “Coping Strategy when depressed or feeling down pt 2”

Coping Strategy when depressed or feeling down pt1

Feeling down is something you can do no matter having an illness or not. But if you do have an illness/disease (please, teach me which of these two words that is correct) the risk is higher for days, or moments, when you feel shitty. Or getting a depression. There are so many factors that can make you feel under the ice. You can have dozens of strategies to prevent it but yet you get down.

Coping strategies – do what you love

I plan (it almost never goes as I plan, nowadays…) to make a sort post every week where I’ll share one or two thing that I tend to reach for when I’m down or depressed (been depressed for a long time now, but I think I found the ladder up from that hole). The important do when fatigued or depressed or down is to take a break (or when fatigued; take away one of the days task and put in a “funtime” instead). Think about the things you used to love and write them down. Yes, I’ve done that, because there will be days where it will be difficult to find out what makes you feel good. At least you’ll have that list to pick things to do from.

The really shitty days

And believe me, they will be there. Those days none of those things on your list makes you feel better. But look at the list, choose the thing there that is most likely to “spark joy”. If that doesn’t help, chose another thing from your list and keep on doing so until you’ve find something that makes you feel a little bit better. Or until you’ve run out of time…

What can happen those days when everything on your list are boring is that you suddenly might of something that’s not on your list that you would like to do. For me it was a sudden enlighten-moment where reading books popped up. I used to love reading books and last year, 2019, I don’t think I read more than 2 books. This moment was just some days ago and since then I’ve read every night before sleep.

Todays “what I love” will be about books

I used to read most in summertime. On the beach or in or furniture on our sundeck. And since I live in one of Swedens rainiest towns the summer days with sun can be spars but then I lay on our sofa. When our kids where newborns I used to read while nursing them, especially during nighttime, to keep me awake. When we didn’t have any children or when I stopped nursing them it was common that I read while my husband fell asleep on my tummy with my hands hand fingers in his hair. Just last night he said that he misses those moments. We never gets to bed the same nowadays. I get to bed and read somewhere between 7.30-8-30 p.m. because I’m so tired and I know that the longer I stay up, the more tired I’ll be the next day.

But I do love books! And I read most kinds of books. I read fantasy, facts (but these books are not so many, love, crime etc. I tend to lean on crime when I need something “easy” to read. Right now I’m reading Khaled Hosseinis “Och bergen svarade” (And the Mountains Echoed)

Och bergen svarade
Och bergen svarade

Every night I have to force me to put the down the book so I’m not awake too long. It’s that good! Do you read or have you read a book you want to share the title of? I’d be grateful! My goal is to make this my new evening routine ’cause it has made me fall a sleep easier. Who knows, maybe I’m able to quit taking sleeping pills!