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.
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.
Emotion focused and problem focused coping
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!
YES! There I dropped my bomb ! I’m so excited about this! And scared. Sanna is taking me on a journey to become a instructor in child-and youth yoga and I’m finally looking into a future where I’m able to do what I love; do something for others and I will work. And it will be a job where I’m able to decide my working days. It doesn’t matter that I can only work for 1-2 hours maybe once a week, I will still be employed. Employed by me. Continue reading “Positive changes – I’m turning my coping strategy ‘yoga’ into my job”
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”
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”
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”
Well, that is what many people call alternative medicines. Just say the word “alternative medicines” in a room full of doctors and nurses and you would get very strange looks from most of them. And I would be one of them. But maybe the alternative medicines can offer good coping strategies.
somethimes we reach after every method or medicine there is to give us answers and/or relief as a cooing strategy. No matter who offers it, why they offers it and no matter wether or not the method is proven to actually help. Is a positive effect of that method just a placebo-effect? And if you get a positive effect, isn’t It ok to use that method wether the positive effect proven in studies or not? Shorly said; our coping strategy is to seek for relief and/or cure and/or answers by ourselves.
I haven’t written so much about these last two weeks cause I really don’t know how much I can write about “our situation” without anyones feelings getting hurt. Afraid that it’s gonna lead to embarrassment for my close ones if “it gets out”. This needs also to be considered before I write about “the situation”. At the same time I feel that the world to day need that the needs that this is subject gets lifted. It’s real and many goes thru it. As a close one or as the one “the problem” concerns.
I gave up and gave in
I thought my Copingskills were enough
I have all the time tried to be the step before the MS. Planning for aids, solutions, tried to make sure my feelings were in order. And I managed to cope with everything about me, my symptoms and the MS. I accept all my disabilities. I don’t like them, I accept them. What I didn’t manage to solve were my husbands and kids way of handling the changes. And that is a rather large part of your life, isn’t it?
Everyone, with some few exceptions, see that I try to be strong and I’m handling our situation well, that I face struggles with a smile ok, maybe not a smile, but I dive into them and solve them. I’m always joking when outside our home. Always. I might tell the persons what’s troubling me right then but in the next sentence I’m making a joke about the situation and say that everything is going to be ok.
But you know what the say about the clowns – behind their masks they’re carrying a big sorrow inside.
My breaking point
It all came to the point where I felt as a burden, in their way of happiness. I felt that I didn’t have the strength to fight agains our situation in the family everyday for the rest of my life. They would get a better life if they didn’t have to consider me and my disabilities and get irritated on me because I don’t have the energy to dish, wash, cock, driving someone somewhere or what ever.
Bad decisions and alcohol
If you have MS you have probably noticed that you can’t drink as much as you used to. The already affected brain gives you worsened symptoms when you feed it with alcohol. That day I had drunken 2 glasses of wine and maybe one beer. (I honestly do not remember.) So when some family members told me something that really hurt me I felt “I can’t take this no more, they’re better of without me and the troubles I cause”.
Despite of my kids being up I locked my self up in the toilet and took all of the pills I knew would kill me. Then I went to bed. But it didn’t go as I planned. Normally they don’t disturb me when I go to bed so I really thought that I would die before my husband found me. ( I know that it was a terrible thought of me. I punished myself enough, so please do not do that you too.) This evening my daughter came in to ask me if I didn’t want any supper.
Causing my family even more pain
I woke up the next day when some said “we are gonna draw the tubes know”. I coughed and felt panic for not getting air into my lungs. I do not remember much more for some minutes. Then I looked up and saw my mother besides me and I recognised the ICU since I’ve been there several times to take our patients back to my ward. I’ve been there as a close one e.g. I’d visited my father and grandmother there.
But I could not understand what I was doing there. I asked my mother and she told me that I had tried taking my life. My daughter had found me. It made me cry so hard. What in the world had I done to my daughter??? To my son? To my husband? Right there and then I could only think about the pain I caused the three of them.
I have small glimpses of memories from the rest of that day. I remember no one blaming me for what I’d done. No one being angry at me. I remember my kids scared faces. My ex-colleague, who’s now working in the ICU, stood beside my bed telling me that I scared her last night and showed me the braid she’d done during the night in my hair.
Long story shorter
I spent two nights at the hospital since the pills I’d taken causes problems with the hearts rhythm so they had to monitoring my heart. That means also that I was moved to the ward for people with heartissues. The ward where one of my closes friends, my closes friend when it comes to svaret hobbies, world. So I managed to make her scared and sad when she realised that the intox they were going to survei was me. She came and sat beside me and we cried some tears together. You should here me cursing as I write this. Cursing against myself. All the harm I’ve caused.
When I was released from hospital they sent me to one of the psychiatry wards. I had approved being admitted there. I wanted to to what was best for my family. Even if I actually could say that I will never make my family go thru this again I thought it would be the best thing to do, letting the psychiatric people take care of me. I had daytime permissions from the first day I came to them. A Thursday if my memory is correct. The following Monday the psychiatric doctor offered me to be discharged, but I felt unsure whether or not that was a good decision. So I got to get home on permission instead and since that week felt good at home me and my husband when back to see the doctor again on the Friday and I was discharged.
The hours I spent on the ward I doodled zendoodles and I made cards that I continued working on at home. (Bigger stuff-stack at home)
Trying to watercolor night sky
I guess I should have made a collage. You know the strength…
The work on our feelings Continues
I’ve been getting phonecalls from my contact nurse once or twice a week since then. The family has taken part in Family prevention sessions. I’m seeing a psychologist so I feel well taken care of. It took several weeks after my suicide attempt before the depression came. Cause inside I knew, and my close ones knows it to, that it wasn’t an attempt. It was pure luck that my daughter found me. And I’ve told her that I’m thankful for the fact that she found me. I’ve told her that she saved my life that day. After that sight, that she will probably be suffering from more or less during her lifetime. My, probably crazy, thought is that I want to turn that awful memory to a less awful memory by telling her that she saved her mothers life that day. I know, I’ve probably fucked her up for the rest of her life.
I’m trying to listen as much as possible when my kids talk, looking for signs of how they feel. I’ve told the councelor in my sons school and his schoolmentor about my suicideattempt so they keep an extra eye on him to see signs of him needing help. I see my husbands struggles. I’ve offered advice and solutions to the everyday life of ours. Then it’s up to him to decide how we solve it. I can’t do more than mentally trying to help him because my body is fucked up. I do household chores but it’s not much or for a long time I can do them. That is why I’ve had to lay my blog on ice.
I need to practice “self-love” according to my psychologist. Can it be because I torture myself for having tortured my family with my suicide attempt? Or because I blame myself for being sick, being a burden to my family? Or because I feel useless and worthless because I’m not able to work? Honestly I sometime hates myself because I’m not being the wife, mother, daughter, daughter in law, sister, friend, co-worker, employee I should be? And I’ve caused so much pain for my parents, other close ones and my friends by doing what I did – can I ever forgive myself for that?
Prioritize what I love
Well, I’ve tried to do that even before the shit broke lose. Now when my energy level is even lower it feels even more shameful when I prioritize crouching instead of cleaning. But I’m getting better on not getting a bad conscious when I do that prioritization. But I’m having difficulties finding joy in anything right now so I have my list of things I normally love to do, and I pick what to do from it. It’s seldom I feel for doing e.g. crocheting for a long time so I jump in-between my hobbies. So in one day I can have painted, worked in by Bullet Journal, chroched, watched “Time team” on YouTube, listen to one of all the pods I love (Right now listening to Mysterious Circumstances and Justins serie about Billy the Kid. LOVE that pod, despite his language, hehe!), snuggled with my dog etc.
My last session with my psychologist she started to talk of Pennebaker who has written several books on the subject of writing as a method to heal. And since I love writing I accepted her suggestion; write about something that upsets me and then either tare the paper and dispose or keep it or we can talk about what I’ve written the following session. Since I’ve written journals since I was about nine years old I fell for it. (I’m a periodic journaler…) It’s not the way Pennebakers method is, but I’ve read about it and I try to follow his method, but I’m going to write for more than 4 days.
Workout fitted for me
Unfortunately my exercise biking has taken a blow since I
- Got tromboses in my left leg. The leg that normally functions longest of my legs… When I use that left leg it gets swollen and hurts really bad. I’m daily wearing a support stocking but it is not enough. So on Thursday I’m going to the doctor so he can write a referral to the nurse att the vesilsurgeons receiving ward. (Is those the right words?). Then they will try out a better support stocking that I can wear and get the swelling under control. Since it’s like having a fridge instead of a leg (when it’s swollen) it will make it easier to use my exercise bike.
- My level hemoglobin isn’t high enough because I have a lack of iron in the system. This makes me short of breath after just I short while on my bike. I’ve been taken tablets (I need no doctor to know what to take when I have a lack of iron 😉 so I prescribed the pills myself) since the lack of iron were found but I’m still having symtoms of anemia. Many of the symtoms are unfortunately the same as my PPMS gives me… Another aspect of me being anemic is that I daily have to take blood-thinning medicin to prevent me from getting more blood cloths. That medicin combined with being a woman, i.e. having period, every month isn’t that amusing. The period is really not liking the blood-thinning crap – it feels like I’m bleeding the whole month more or less. So on Thursday my level of hemoglobin also will get checked.
I’ve used my bike but I haven’t been able to do more than short sessions.
I’ve done yoga and it works most of the time since it’s easy to adjust the exercises after your own abilities. Lifting my dumbbells aren’t any bigger problems. I get tired in my muscles sooner than before, but I do as many as I can.
My friend and my Yoga-guru, Sanna, started a 40 days with Kirtan Kriya challenge on her FB. I think that it had been going on for 14 days when I met her in the beginning of November but she let me tag along anyway. I’m so grateful for that cause it has been so calming to sit down once a day and do the Kirtan Kriya. Kirtan Kriya has in some studies shown positive effects on your memory and your psych. After doing this mediation (including the right finger movements)
During 12 minutes a day for 8 weeks it has proven to increase the blood flow to your front- and pariental-lobes. It also have a positive effect on cellular level which in the end leads to less vulnerability to aging and disease for you. You can read about the Nobel Prize winner Elizabeth Blackburn and her research about the enzyme Telemorease and the chromosomeprotective Telemores here.
Honestly I don’t care wether or not this meditation have all these effects or not, I love doing this meditation and it makes me drift away from reality for 12 minutes. And no, I haven’t succeeded 12 minutes without my thoughts drifting away to “things I need to do” at least once during the meditation… Not yet. But I’m only on day 22 now.
Creating a bedtimeroutin to unwind
I’ve tried to do this for some months now. I somehow found the FLYlady on Pinterest. I wrote down the routines I wanted to have each day of the week and I wrote down my morningroutins and evening routines. I thought that would make it easier for me to get things done. But my strength wasn’t there to follow my routine. I try not to se my “un-following” as another failure, I really try. Instead I try to see that if I get some energy over I can take a look at these daily routines and pick one of the tasks from that day and get done. But I feel the need to get routines at least for the evening to easier unwind. I need that because I have insomnia again.
My routine is very simple. Put down the phone. I’m only allowed to use it for playing calming music and/or hypnosis- or meditation-session for insomnina. (On spotify.) I often start with mediation with my candles lit. Then I continue writing on my task; Expressive writing. After that it’s time to blow out the candles and either listen to my “sleep without words-” or my “sleep with words playlists. Or I listen to an insomnia-session. Hopefully it’s “goodnight” then.
A caotic blogpost, I know.
This post isn’t that well thought through. But I felt that if I didn’t post anything now this blog would probably never get a post again. And I just paid for the domain. Since I don’t earn anything now I better use what I’ve paid for 😛 .
To be honest, I haven’t lost the feeling of “I can’t take this anymore, I don’t have the strength to hold on and wait for the day when my family ‘s feeling better”. Because that day feels so distant right now. But I try to fight and I’ve learned that I have so many around me who are supporting me. I’ve realized that I have so many wonderful persons around me; family, extended family, friends, the Psychiatric clinic, the Union (for nurses) and many more. E. g. yesterday my best friend Katta, alias Katarina, alias Nina took me to a lovely bakery and café by a lake. We had delicious scones and desserts. Most important was the fact that we had time to meet and laugh and talk together. That is the medicine for my soul.
Have you been where I am now – have you tried to take your life? How are you feeling now? What is it that put you in that situation? If you don’t want to write it here but you want to write to me send me a dm on either FB or on Insta.
Having depression? What kind of strategies do you use to feel better?
I’d love to hear from you! Sharing can give you opportunities to find ways out of the darkness that you haven’t been able to think of because you’re feeling so low. Hugs to you all and thanks for reading!!!
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?