I have been searching for an explanation of my exhaustion/fatigue for years. I’ve been exhausted for six years, but my other burnout/stress symptoms disappeared four years ago. But the fatigue stayed.

People have come with loads of suggestions like vitamine deficits, adrenal gland disorder (binjureutmattning), hormone problems and other physical illnesses.

After tests and examinations at the doctor, I’m slowly coming to realize that yes, you can get this exhausted by living my life.

There is (probably) nothing wrong with my body, but my mental disorders together with my daily life is so challenging for me that I live with constant low energy. I have no chance to reload my batteries.

And another reason for realizing this is that I’ve processed so much mental stuff and I’ve made so many changes in my daily life with family that I now get to see just have hard my life has been (and still is).

It’s not weird I am so tired all the time.

As on the intuitive painting I have to wade through fields of high grass, swim the lake and go through fire to reach my beloved positive spirals of rehab in my daily life.

And the complex PTSD I’ve got by living this life is not making it any easier. I’m fighting my fears everyday, trying to get my body to relax a bit.

So yeah, it is not weird I am so exhausted.

Attacks on my healing

I’m so tired of not being in power of my own life. There is so little I can do myself. I have my duties and responsibilities and then there’s all of these things that’s just thrown upon me.

When living with low energy and anxiety, everything can be a huge threat. All the chores, all the meetings, all the things that must be bought and fixed and the kids that need to be taken cared of.

This intuitive painting is actually showing two of my most painted elements: the positive/negative spiral and the arrows/spears attacking.

I imagine my healing and rehab as a spiral, where I keep going up and down based on what’s happening in my life. In better times I can focus on relaxing, movement, food and getting better. Other times I just focus on surviving.

The spears are the extra responsibilities, chores, meetings, stuff that breaks, stuff needing to be fixed or bought, sicknesses, deadlines, stressors, etc.

And these very much makes my healing very much harder.

I long for a calm period of time where I can focus on myself instead of ‘släcka bränder’ (extinguish fires) and doing emergency stuff all the time.

Health care dodgeball

I made one in Swedish too. It probably makes more sense here and in countries where the health care is mostly financed by taxes.

I’ve been ‘kicked’ back and forth so many times in so many years. For me it actually doesn’t matter much where I get help as long as I get help.

But it obviously means a lot to the health care providers to get out of caring for me. (Even if it is the same tax money in the end.)

Ps. You can share and change this meme if you want. I’m working on another one in the same theme (with more people on).

The spiral

The spiral that is my life. Either going down or up. Never being able to do the kind or rehab I want, just having to listen to my body. Sometimes I climb the spiral and get in a good position where I can focus on movement, food, sleep, etc. But then something happens and I slide down into being bedbound again.

It’s so freaking frustrating. I have no control at all. And things does not get better with time. I have to work every day to get back up in the spiral. I am so tired.

I can relax

After years of feeling at guard, always ready and ‘can’t lose myself to my needs’, my body was chronically tense and stressed out.

I have now tried muscle relaxation medicine for two weeks and extra sleep medication for some days and I sleep and rest all the time.

I think my exhausted body might finally get what it needs.

A lot of (most?) burnout people sleep most of their days the first months after the crash. I never did that. I slowed down before ‘the wall’ and then I spent five years+ stripping chores and responsibilities out of my life to find out how much I can handle. (Would not recommend.)

Am I at the burnout bottom now? Sleeping most of my hours? Is this when the energy can start to return?

I have for a long time known that I can not get well before the situation has changed (going home from work did not do the trick since work was not the problem). But it has been extremely hard to change my situation and I have needed a lot of help from therapists.

I think I am much closer now to get the rest I need. I am better at setting limits and advocating for my self and my needs. My kids are older, the household works better, I have worked a lot with my mental illnesses and I feel better with less anxiety (though heavily medicated).

Am I finally or partially out of the chaotic everyday life that made me so tense and scared? I hope so.

Even though it’s boring, I will continue to sleep as much as I need. My body craves it and therefor I need it.

It is not for them to decide

I have been so stressed about having to start with the garden rehab program already in May. My doctor told me I should, and Försäkringskassan handling my benefits think I should have started already this winter.

Today I met my new practical therapist (not the trauma-one) since the previous one had to quit. She thinks this is completely unacceptable.

She is one of the organizers of the garden rehab program and she said it’s them together with me who decides when I am well enough to start. It can be postponed for months or years if necessary.

This made me so relieved. I am so sick and tired of being hurried by doctors and Försäkringskassan.

The therapist said I am not close to ready since I am still bed bound for 12-16h every day. When I start rehab, I should have energy for my every day life + energy over for a new activity (garden rehab is 3×3h per week).

Right now I have energy for one health appointment every week (about 1 hour). That’s it.

I will now try to relax with this. Garden rehab has my back. I cannot stress my healing process. I am doing a great job with it and I will let it take the time I need.

I do not want to bleed tears of stress and fear due to what authorities say.

Facing it

Looking at what must be done this year. I am not looking forward to it, but there is no other way. I do not give up.

Seeing the doctor again

Today I met the doctor again after 3,5 months of sick leave. I told him about how Försäkringskassan (handling sick benefits) has stressed me. I said I have been accepted to garden rehab in May as a pre-work program and he was very happy about that.

I have made a huge progress with cognitive behavioural therapy and started learning to handle my anxiety/fear, meltdowns and affect regulation (handling strong feelings).

I am about to apply for a weighted blanket and I am filling in a sleep chart right now. I sleep a lot better with Atarax, but I think a weighted blanket (tyngdtäcke) will approve my ability to relax.

I also meet the arbetsterapeut (‘practical therapist’) regularly and get help with how to adjust my everyday life to my autistic needs.

My doctor said Garden rehab in May will be the next step. Hopefully Försäkringskassan vill approve that (and not try to rush me into something now in the winter). I think May might be a little optimistic, but I would love to do it then. I will shoot for May and change my plans if needed. I will try to not stress about it.

Also, my doctor is quitting due to cuts. I have seen him for about 1,5 years. That is a rather long time in Sweden (😑). I hope the next one is OK.

Good news

Finally some good news! I’m now on the waiting list for Grön Rehab – garden therapy for stressed people. It starts in May so I will have quite a lot of time to recover. And if I am not ready I can stay on the waiting list for the next start in September or January 2020.

I’ve decided I will not listen to Försäkringskassan (handling sick benefits). If they try to force me into starting earlier I will say no. They can withdraw my sick benefit, but I have savings so I will be alright.

The most important thing is that I take my time to get well. Not hurry out and get even more exhausted. I won’t allow that to happen. (I’m very much aware of me being privileged having savings, that’s not an option to a lot of the sick people. I wish sickness didn’t come with poverty to so many people.)

I think Grön Rehab will be great for me. 3×3 hour per week with gardening, meditation, group conversations, silent walks and body-mind-exercises.

Stressful situation

Everyone tells me that healing from exhaustion takes time except Försäkringskassan (FK, which handles my ‘sick salary’).

How can I slow down when FK hunts me down and won’t listen to neither my doctor or I?

FK called me yesterday and said my plans for starting a rehabilitation program in March-April is far too late. This means he wants me to start in January-February. That is completely impossible due to severe fatigue. (If no miracle happens.) I will not be able to attend and I will probably get worse.

My doctor said in October that we can check what rehab programs there are this autumn and talk to them in January with a possible start next spring.

I said I would love to do that as soon as I have some basic energy.

FK apparently wants me to start as soon as possible.

I am so stressed out. (I cannot start until I have energy so I guess I will lose my benefits if FK doesn’t change it’s mind.)

Ps. I’ve asked to change officer and I will make sure we talk to the doctor again so I have some hope of more time.