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.
The reason to why you end up in those holes
Our reasons differs from us all since we are individuals. But what you can say is that when we feel that we aren’t able to handle the demands on us, from ourselves or from peoples around us, we get stressed. If we don’t find a way to deal with it or if our coping strategies don’t make it manageable then it leads to anxiety or depression. Having a toolkit full of good coping strategies is a good prevention against falling down those holes, or at least the toolkit results in we being able to build a ladder to climb up.
My hole was dug of someone else
Nice being able to put the blame on someone else, isn’t it? But the heading isn’t entirely true. Surely it was built of someone else but it was my responsibility to fill it to avoid falling into it.
With the doctor telling me my PPMS had progressed and that there’s a risk my body won’t be better that it is right now, mine and my familys’ lives were affected. I dealt with everything that needed to be done for me being able to function at home. I dealt with all the emotions around the fact that I might not be able to work again. I tried to accept the fact that I would be the reason for us not having a stable economy in the future. Tried to change the thinking when it comes to meal planning – not buying foods that we can not afford etc.
But the rest of my family is not there yet. It’s difficult to make changes at home when the rest of the family isn’t willing to do them. Ive tried to have conversations with them about what needs to be done, but they do not listen. And I know why – they haven’t been able to accept the fact that I am the way I am. That things have to be adapted. They’re still in the crisis. Not having them accepting “the new me” has been really hard for me. I’ve been doing much more than I’ve had the energy for and that and my frustration over not being able to reach my family are my stressors.
Building my ladder takes time
It has taken a while but to save myself, to make sure I will still be alive, I’ve decided that those feelings the rest of my family have are theirs to deal with. Ive come with many suggestions for them how to deal with their emotions, asked them to see therapists and so on. That is all I can do. They haven’t listen to my advices and they have not looked for solution. But it’s up to them to find out what needs to be done. What works for them. If they need to talk with me, of cause I will be here to listen.
I was lucky. During these past weeks I was undergoing evaluation of psychologist and physiotherapist to see if I would be admitted to the pain class. I wasn’t cause I already have all tools to deal with my pain. But the visit with the psychologist was really needed because I am so down because of what I mentioned before. It ended up with me having an extra visit with her the same week, she giving me the number to the psychiatry emergency and her keeping contact with me over the phone once every week. I’ve also called and scheduled meeting with a counselor.
You do not talk about these kind of problems – cause they make you a week person in others eyes.
At least that is the case in many swedes minds. But it’s so common and it’s ridiculous that you can’t admit that your having a hard time right now and you need help to get out of it. *me being mad at people who judges others* My advice to you, if you are down and feel that there’s no way out of there – please, seek help. Don’t be afraid of it. Cause having crises is something anyone gets and if the crises is to difficult for you to deal with, talking to a professional can help you find ways that you didn’t think of yourself.
Getting better is my responsibility
So besides me booking dates with my counselor I tried to put my energy on doing things I know I used to love. No, noting has been appealing for me during these weeks. My energy levels has also been affected in a negative way because of my new medication. Also I’ve had to accept the fact that I’ve had increased fatigue, dizziness, blurrier speech and more reeling walk than “normal”. That leads up to the fact that I’ve been doing less stuff than normal and the increased fatigue in combination with the stress over my family lead to me not wanting to do anything.
So I’ve made cards in my scraproom and in front of our TV. I’ve tried to read more and I’ve met friends. And I’ve enjoyed that. But I’m so fucking tired. And my muscles are so weak. I can’t write a blogpost without splitting the time up because my fingers stop working and results in an great amount of letters ending up where they shouldn’t be. I realize that I just have to endure how I am right now, because this medicine is my last hope to being able working as a nurse again. Being able to do the hobbies I love. I can’t even sing as I used to do because my voice gets hoarse. (is that the right word???)
I just love my life right now… It can always get worse, but on the other hand – it can always get better too. I hope.
One little word with Ali Edwards
Last year I intended to do my One little word album https://aliedwards.com/projects/one-little-wordI started out just fine but somewhere between April and June I just didn’t have the strength going on. The will power was there but not the strength. My word last year was “cope”. This year I never planned to make an album but I choose a word – “KASAM”. It’s the swedish term short for “Sense of Coherence”. So yes, I cheated. I chose a word that stands for several words. Ha, ha.
My friend Sanna, the girl that sails around the Canary Islands right now https://blackpearlofsweden.se/. The brave Sanna who took the leap and got rid of all stuff that binds you to a place to be able to live on a boat with her husband. She has her business on that boat and right now I’m a part of her class in Mindfulness when in pain. This week is about “patience”. When I read that heading I knew this is was I need to focus on: patience. That should have been my One little word for this year.
Patience and feeling trust
When it looking on my situation right now patience and trust, which also is included in this week, is all I need to have right now. Or was it the week before? (MS-brain.) Patience when it comes to letting my family understand what our new life needs to be like. Patience when it comes to see the effect of my new medicine. Patience when it comes to me loosing those pounds I’ve gained during this last year. I need to trust the fact that my so loved family will find how they can accept our new situation and adapt to it. Trust in my children will get a happy life not having to think of me. Most important – I need to trust that they always knows that if they’re having something on their mind, no matter what it is, they will always be able to turn to me. I need to trust that I will always be strong enough to listen to them, patiently to them. Comfort them or giving them strength, support them
Patience when it comes to my parents situation at home and the trust in that they will know the best home situation for my father and mother being able to manage the everyday.
My way of managing my situation
I thought I would display the cards I’ve made so far. Hopefully I will inspire someone to take up their hobbies. They have taken time to make since neither my fingers or head works for a longer amount of time. And I do apologize for these uncurated photos.
First out is a card for one of my aunts who is about to celebrate her 50’th birthday. And since she actually turned 50 in january it is a belated birthday. My Lawn Fawn “Belated birthday” stamp and dieset were used twice in my card making-spree. I used a dies with the Swedish word for “happy birthday” and the doodled circles (down in the left corner). And in the inside I used a die to cut out the circle. These three mentioned dies are from Gummi Apan if my memory doesn’t fail me. Papers and diecuts are from Kaisercraft “Lilac Whisper”. I splashed some dots with Chalk blue light from AyeedaMist and I made dots with Enamel Accents, Stickles and Liquid Pearls from Ranger.
And suddenly there came a mothers day too. I used a few decorative blossoms and the rest of the blossoms I punched out and I put decor crystals in the center of all flowers. They where many… I also diecut leaves and swirles and put under the flowers. All dies, including the jar, I’ve bought from Ali Express. The inside is made with papers and diets from Kaisercrafts “Lilac Whisper”. The stickers I believe are from an old Kaisercraft sticker sheet but I’m not sure.
A cousin of mine has gotten his Confirmation. For this card I used a swedish set of stamps for making the cross, bible and the words. The bear “Man of the moment” I used a that I got when being a scrapbooking magazine. Don’t ask me which… I felt like using my watercolors so I painted the picture on the front side. Inside the card I used an embossing folder with clouds and I diecut clouds and an airballoon. (They are all bought through Ali Express so I haven’t got any names of them.) I also cut out a whole to hang the silver cross in which I had attached to a “jewelryclosure” that I could attach it with.
And in April my wonderful friend since 36 years back turned a year older. So I just had to make a card for her present. 😉 I used different stamp sets that had fireworks, stars and some sort of confetti. One stampset I used were Lawn Fawns “happy belated birthday” and I used the dieset that belonged to it. Some funny ribbons were added as paper strips from Amy Tangerines “Finders keepers” collection.
Now I’m completely finished. I’ve been writing on this post the entire day. But this one I intend to post. I have several post started but I never finished them. Yes, I am a wreck but I’m starting to reach the surface again.
Oh yes, I went all in when making the cards. 😀
What strategies have helped you when you’ve been a wreck? If you can’t find the way out, please reach out to me! Maybe we can support each other. Even if you feel like the loneliest person on this earth (I sometimes feel that way to) remember that you aren’t alone. There are lots of support groups to reach out to weather you have MS or some other health problems. Search on Facebook for example. Join a group that fits you. Hang around and read other peoples posts. See if it seems to be a “good” group where they have acceptance for all different people, cause all people aren’t the same even if they have the same diagnosis. Unfortunately there are groups with not so pleasant behaviors why I think you should lurk around for some time before you take their advices or you express how you’re feeling.
And by all means do not forget that there are professionals whose occupation is to help others. Good professionals aren’t always the most expensive. If you have peoples around you that you trust and can talk to – do that! Do not be afraid to share your difficulties with them. If they truly are your friends they will probably be happy to be a listener even if that is the only way they can help you.
I wish you a happy continue of this week. Who know when I will post again…