The pain makes me sad

Disability and illness

When I have a pain flare up, which often coincidences with PEM (Post-exertional malaise – the increased symptoms that comes after an activity when you have ME), it takes so much energy and leaves me lethargic and weepy. I try to think positive, but it’s like I’m always at the brink of tears. Like I carry a great sadness, my whole body just feels sad. 

It’s tough to keep my nose above the water these days, especially as I can’t do anything to cheer myself up. The stress of all the things I need to do that I’m unable to because of my health is immense. I try to let go, as I can’t do anything about it, but I constantly feel as if I should just try more. 

Some days this chronic illness thing sucks more than others. 

A six month coma

Disability and illness

TW Suicide, mental health issues. 

So, I spoke to my mum earlier about how the government are trying to break sick people with all the hurdles they set up for help. I said that after the former government implemented a rule to quit the disability benefits after three years, the experts had warned about increased suicide rates and it came true. My mum then said the heartbreaking sentence: ”Please don’t kill yourself.” and I replied ”I promise I don’t have any plans to kill myself whatsoever, but a six month coma would be nice.”

It really, really sucks to be sick. 

Breaking

Disability and illness

I feel like I’m breaking apart. I can’t sleep, I’m in pain 24/7 and I am super stressed about all the things I need to do, but have no energy for. 

Healthy people might think they know. ”I have no energy” means you can still do it, but you might have to force yourself. I literally have no energy. I can barely get up to go to the toilet or brush my teeth. I’m contemplating buying a chamber pot (thankfully they have smaller, plastic things with lids nowadays, so no ceramic open bowl thingy) but I can’t bring myself to do it. Sometimes in the mornings my body is not working, I literally can’t move. It’s super scary and weird, and I break it by just slowly starting to wiggle my toes and fingers and so on, but it takes time before I can get up and go to the toilet. So that’s when I feel the possible need for a…  potty. But I also feel that, when I’ve started to be able to move so much that I could get a potty out and pee, then I’m almost ready to go to the loo anyway. But on the other hand, it’s just gonna get worse. You know, winter is coming. And I don’t mean in the game of thrones’ kill/sex way, I mean as in I’m getting worse by the minute. 

I just feel it is so, so humiliating to have a chamber pot. A bed pan. A potty. I’m 27 years old. This should not be my problem. 

It took me about a year, if I remember correctly, to buy a walking stick. I realised that I needed one, but I couldn’t bring myself to it. By the time I got one, I already needed a wheelchair. The wheelchair was easier, cause by then I couldn’t get out without one, so I just saw it as a necessity. A help. But a chamber pot? Although, I don’t want to wait until the day I wet the bed… I could just get one and keep close by just in case. If tried to tell myself that for about a month or two now… 

This wasn’t supposed to be a post about chamber pots but that’s apparently where I am. And it sucks. It hurts so bad. I was supposed to start my last term of law school now, instead I’m contemplating buying chamber pots and trying to keep myself together. 

I’ve contacted the psychology department at the hospital for an appointment, but I doubt they’ll have time for me, or can be of any help. In the meantime, I lay here unable to sleep every night from the mind numbing anxiety and stress of being completely out of energy. I need to do things, I need to make phone calls, fill in forms, go to doctors’ visits, try to get the help I need in all ways possible, and I just want to rest. I want to be in a nice and calm coma for a few months. Just sleep. No musts or demands. I’ve even stopped wishing for health, my biggest wish is a coma. It feels more realistic. 

I got on disability leave almost 3 years ago. I then thought I just needed to do the bureaucracy for a few months, maybe a year, and then I could rest and possibly, hopefully, get a bit better. 3 years on, I keep hoping that it will end soon. Right now, I’m trying to get a more active wheelchair and a blue badge (parking permit for disabled). I’ve had a wheelchair for 2.5 years, and I just got the time to try and apply for a blue badge. I’ve had more pressing things to apply for, and my doctor has not written a medical certificate until now. I sent it out last week, and got it back because my doc (who have since quit his position at the health care centre) had missed to fill a few fields and I applied as both driver and passenger, and apparently you can only get either or! Weird rules, and so typical. It’s always like this. Something always goes wrong, it takes a lot of energy, and is more complicated than you could foresee. 

The system is set up for you to fail. It’s set up so that you should give up. It saves them money, they think. Very shortsighted. But it breaks you, after a while. Because you’re already having a hard time. You’re sick. You need help, and to get it you need to apply. In your application, you need to write in detail why you need the help. You need to write about all the worst things about your situation. You are then met with distrust and rejection, and they make assumptions about you and your private life. About your love life, about your illness, about every aspect of your life. Mostly, their assumptions are wrong. You need to meet their assumptions, distrust and rejection with intimate details about your life and your failure to be healthy, about your loss of ability. This is so draining. It is like a dementor, it sucks the joy and positivity and all that is good out of you. 

You try to stay positive and optimistic even though you are sick. You try to see what you have and what you can do, but they force you to look in excruciating detail about the things you can’t. And then they reject you. When you’ve humiliated yourself, begging for help, they spit in your face. And you just have to go on. Try again. It is exhausting, in itself. And you’re already sick and exhausted. 

It gives me angst.

Not enough

Disability and illness

I’m not very good at updating, and not very good at communicating at all at the moment. I have too much to do, and not enough energy. I want to gather my thoughts, I want to write and paint, and be creative! But I don’t have the energy. All my energy goes to survival. The most necessary things: basic hygiene, eat, sleep etc, and survival on another level, ie paying bills, making sure I’ve sent in the documents needed to the government, go to the doctor… And the most important thing for me, that both takes and gives energy: taking care of my animals. They take physical energy and give me the strength to continue on. Without them… I’d be an empty shell. Without my fiancé and my family, I’d be dead, most likely.

I want so much… All the things I’d like to do…

This life. This confinement. Having a body that doesn’t measure up. That fails me. It’s not enough, but what if it has to be? What if the cure doesn’t come, or comes too late? 

If you want to try and help find a cure, click here to come to Open Medicine Foundation website and donate to the End ME/CFS Project.

If you are healthy, appreciate it. You might be tired and overwhelmed by life, but if your body has energy, if you wake up and feel refreshed after a night’s sleep, appreciate it. Stretch your legs walking to the bus in the morning. Feel how they carry you, safe and secure. Breathe in the fresh air. Look up to the sun and enjoy the last days of summer. See the beauty around you. Live life the best you can, and remember us. The people who cannot. The millions missing from society, from life. 

Sensory overload

Disability and illness

It still amazes me how affected I am by everything my brain has to process, all the impressions the world brings. My fiancé and I went to a store today and within a minute I had a massive headache and I was so dizzy I felt like I’d fall off the wheelchair and/or vomit. Just by all the colourful merchandise, people going around, smells, noises etc. I am generally better in the summer, (otherwise we couldn’t go on all these errands at all as my fiancé doesn’t have a drivers license) so I thought I wouldn’t get so poorly, and not so fast. It got a bit better when I got used to the environment, only to get worse again as my brain was truly overloaded and my energy levels sunk fast. They’re not exactly big to start with… 

This is certainly not anything that is talked about, and I think it should be. I had no idea that was a symptom of chronic illness, and I don’t think people in general knows or understands how hard it can be, just being outside of your home, or having someone in it.

I wish it would be more known, and that people would take steps to help everyone that suffers from sensitory problems. It’s not just people with chronic illnesses, but people with other disabilities or neuropsychiatric variations as autism or adhd. 

A few things that can make it easier for us to handle the outside world is

  • No music in public buildings.
  • No perfume among other merchandise.
  • People being careful with their use of perfume and perfumated products such as softener (I have on several occasions gotten reactions from softener in other people’s clothes).
  • No blinking signs or window products. 
  • …please do fill in the list in the comments as I can’t remember more right now…!

I was super tired after this ordeal but as I had bought some towel hangers for my mum we went over to her place and invited ourselves to lunch/dinner. A very good exchange for a few towel hangers, all of us thought. My mum had been looking for towel hangers for over a year, so she was happy. My fiancé and I didn’t have to cook and got fresh cod – yummy! – and my parents were happy for the visit, especially since they were a bit bored with bad weather in the middle of their vacation. Win win. 

My brain is so rattled from earlier today it has decided to keep me awake though. Hope I’ll be able to sleep soon cause I am so so tired. 

Loss

Disability and illness

I listen to stories, as I can’t read books anymore due to the mental fatigue that comes with many chronic illnesses. I used to be a real bookworm, almost always had a book with me, and read several books per week since I was five… It’s a huge part of me that’s just disappeared, and I miss it so much. Listening to audiobooks help though, it’s almost like when you were little and your parents read for you. I still miss the reading though, it’s not completely the same. 

Another part of that is my studies. I was at law school when I got diagnosed with ME and fibromyalgia, and even if I tried it became impossible to continue as I got worse. I would have started my last term in a month, and graduated just before my 28th birthday. Just thinking about it makes me want to weep. It’s like an open wound in my soul, and I try to not think of it. 

I tried so hard though. I forced myself to go to school even when I was so tired and in so much pain that I almost threw up on my way to school from the tram stop.  (I didn’t have any pain medication at the time, as the doctors thought that I was ”too young”. Too young for pain relief. I’d like to hit them all over the body with a baseball bat and then deny them pain medication and see how they like it!) The last straw was when I cried of exhaustion already on the tram TO school, and didn’t know how to go on. I asked for advice in a support group and they told me to get on sick leave before I drove myself to get even worse. You can’t keep pushing yourself with ME, it only makes you worse. 

Imagine when you have a really bad flu. Then push yourself by going to work/school, the gym, keep the house clean, keep yourself clean, etc. The effect is the same as with ME: You get worse. With ME, that might be permanent.

That was in December 2013, seven months after my diagnosis. In May that year, I walked 10 km with the dog. By January 2014, after an exhausting Christmas and the time for my body to relax after all my pushing, I was unable to walk even 50 metres. I tried, and broke down in convulsions and fever, basically unconscious for several hours. After that, I listen better to my body.

I still push myself too often, and I pay the price, although not as hard a price as that time. It’s like a kind of hangover, but with the added pain and exhaustion of fibromyalgia and ME, and it goes on for days or weeks, or even months or years! I still can’t walk further than 50 metres on a good day in the summer, 20 in the winter.

These losses, how my body and mind fails me… My illnesses might be invisible, but they still make a huge impact. Not only for me, but for my whole family.

New routines and silly thoughts

Disability and illness

My darling fiancé and I have started some new routines, trying to get better eating and sleeping habits. I ”normally” sleep for about 12 hours (and hope to never reach that proper insomnia state of ME that I’ve heard of, cause at the moment, if I don’t get at least 10 hours I barely function), and those hours are ”normally” midnight to noon. I say normally in citations because it varies a lot depending on my stress/anxiety levels and ME state. But now we’re trying to go to sleep earlier and get up earlier (well, my fiancé normally gets up before me in any case obviously, even though he also needs more sleep than most people), and my body can not cope. 

Getting up at 11 am instead of 12 is torture. I can barely keep my eyes open, never mind actually getting out of bed. That’s a struggle on any day, but this is ridiculous. 

What’s worse is that I can’t go to sleep earlier or at my ”normal” time. No, now I’m up and can’t for the life of me go to sleep at any reasonable hour. Which is making the mornings even worse. I think I might be like an overly tired small child, too tired to go to sleep? Too full of adrenaline from trying to stay awake? Maybe I should try to go to bed even earlier and see if that helps. I’m trying to start to get ready for bed early, but I never seem to succeed in doing what needs to be done, get into bed and turning the lights off before 11 pm anyway. At the very best. Tomorrow I’ll try to turn off the lights at 9 pm. Might just be 2 more hours of trying to sleep (and then giving up and get on the phone/Zenpad and try to expel silly thoughts…) but it’s worth a shot! 
The silly thoughts on the other hand. How do you expel them? 

For some reason (probably a near encounter last week) I started thinking of an ex. I guess we all have them in some form, and most of us have that ex that just pops up in our minds, the one that we maybe didn’t get ”closure” with? The one that got away? The one who didn’t treat us right? Well, I’m now happy that mine did ”get away”, because if not, I might not have made the choices that led me to meeting my fiancé. 

But I started thinking about it… I think that almost everyone with an ex, or at least everyone with one of Those exes, have that fantasy of meeting them again and be fabulous. Show them what they missed. I know I’ve had them. I’d be so successful, attractive and aloof. I’d show that bastard. Same thing with my old bullies at school. 

But now, that I’m once again living in my home town and have a lot more opportunities of running in to The Ex, or one of the bullies, I feel so small. So ashamed. I can’t answer the question ”So, how are you doing nowadays?” with ”Oh, I’m so busy studying to be/working as a lawyer, I barely see my fiancé/husband” and flick my hair and dazzle them with my smile and intelligence and success. No, instead, no one even asks that question but instead varieties of ”What has happened to you?” and I have to explain about getting a neurological illness and having to quit law school in favour of laying at home on my sofa, feeling like I’ve been hit by a bus. (Ok, I would never say that much to one of the aforementioned.)

And I know it’s silly. My worth as a person has nothing to do with being able to dazzle people from the past with my success, but I just wish that society didn’t put us sick/disabled people down so much. I wish that I wouldn’t feel the need to show people anything. No brave front, no success… But I do. Society taught me what was important in life. Success. Or at least have a job, for God’s sakes! And if you don’t, you should do something. Study, have a couple of kids. SOMETHING. Not just be a burden on society, as we disabled are. 

How am I going to dazzle people, when I feel like I should be hiding. When I am so used to saying the right things, putting people at ease, so they don’t feel bad about my misfortune. 

Today an acquaintance of my mum’s said: ”Well, at least you’re not in a lot of pain! Or are you?” and I’m like… ”Umm, yes I am actually. I have bad fibromyalgia, and ME, and endometriosis and such… But yes, of course it could be worse.” and she response turn gets in to some anecdote with the point: When we are in a crappy situation, why not say so? Why not say ”I am in horrible pain most days, and it sucks!”

Well, it was rhetorical I think. But society teaches us that it’s bad form. It’s like bragging, you shouldn’t toot your own horn, or ”try to get sympathies”. Which we mostly don’t anyway, we get pity, at best, from people with bad grasp of the reality of disability. 

When I say that I’m sick, chronically sick, people get very flustered. They don’t know what to say, and I have to lighten up the situation. I make a joke, or say something deflating to make the situation more comfortable. I wish I didn’t feel like I have to. I wish I’d just let them be uncomfortable. 

Sick & tired

Disability and illness

I am so exhausted, so tired, so extremely fatigued that I can’t think straight. So what else is new, I have ME, what do I expect? 

I think the big problem is that I need to do certain things, I want to do other things, and don’t have energy for neither. That I’m now in pain, nauseated and dizzy does not help. The fact that I’m not able to sleep will definitely not help. I wish I had som respite. I wish I could just get a week of nothing. A week in coma so my body could catch up a bit. So I’m not constantly ”in debt” to some energy bank, starting each day with less energy than the day before. 

You don’t know what tired is until you’ve been sickly tired for what feels like forever. How did this happen? You never think this will happen to you. I never did. These things happen to other people, not me. I was invincible. Until I wasn’t. 

Anxiety

Disability and illness, Medical health professionals

Everyone seem to think that mindfulness and breathing exercises can cure all sorts of anxiety and sleeping problems. They’re wrong.
For me, the a anxiety sits like a ball in the chest. You know how nervousness sometimes is said to be like butterflies in your stomach? Anxiety is more like a yarn of cockroaches in your chest. Crawling, running, cluttering… Causing your skin to crawl, gives you a feeling of disgust and the flight mechanism kicks in.
You try to breath in calm and breath out anxiety but then you realise; the anxiety is not in your breath, it’s not in the oxygen – it’s in your blood stream. Pumping around in your veins like poison.

I’m frankly quite annoyed with all the mindfulness and breathing, presented as a solution to everyone, regardless of circumstances. I don’t want to be in my body, I don’t want to feel my every detail. Because it all hurts. All of me, every millimetre, hurts. And adding to that, I get spasms. You try focusing on your breath when your body is jerking you around. Not very calming.

So, how do I present this to my new shrink, who had a mindfulness session with me last time?
Cause all health care professionals knows best, and if the patient objects, they are being ”difficult”. I’m already known as that patient I think. Among the nurses and certainly by the occupational therapist, demanding doctor’s appointments and a wheelchair fitted to my needs etc. Must be super annoying to have a patient wanting you to do your job and help them!

Deep, deep sighs…

Passivation and mobility aids

Disability and illness, Medical health professionals

I’ve been thinking a lot on this whole thing that the medical health professionals talk about so much; passivation.
This notion that if I get an aid, like a wheelchair, and is able to go outside of my home and participate more in society, I will be passivated???

So, I can get out of the house = passive
Can’t get out of the house = active?

Please tell me how this makes sense?!

I have heard them, but they don’t hear me. They say I should walk a little, but their ”little” is a marathon for me.

So this is my current situation:
I asked for an electric wheelchair with a joystick and a high back that could recline (so that I could lay down and rest in order to be able to go further after). They gave me a mobility scooter and claimed it was ”better”. When I had objections, they waved them off.
For instance, I said that it was too big and clumsy for grocery shopping. Their answer was that I could drive the scooter to the store and then walk around the grocery store with a trolley as help. Even though they know I can only walk 20 metres, and that I wasn’t even able to do a walking test at the physio because that day I wasn’t able to walk at all.

To ”hang over a trolley” to be able to walk around the grocery store does not help if I a) can’t walk that far with or without trolley as my legs give out and I faint and b) gets a sensory overload by just being in the store! Not to mention getting there, even driving a mobility scooter is exhausting with so limited energy!

The situation is then that I can’t go grocery shopping at all as the aid I was given is not fit to what I need. As a result, I can’t go grocery shopping and thus do not get out at all. Because of this I have once again requested an electric wheelchair, or, if I can’t get that, a better manual wheelchair with an external motor such as a smartdrive.

Apparently, they still don’t understand. They still say that I will be passive if I get a wheelchair that I don’t need to get off to do some things. I don’t know if they think there is superglue in the seats of electric wheelchairs, but they have this idea that once you get one of those, you’re stuck there. Even if you get better, which is ridiculous! They can’t see the forest for all the trees. They are so focused on their objective that they don’t see how it effects me individually, and won’t step out of their box to think in a different way.

If I can walk, I walk! I still walk inside, at home etc. And if I got better, I wouldn’t walk, I would DANCE!

They also say that electric wheelchairs are only for people who are more or less completely paralysed and for older people. Once again the ageism in health care. I know a lot of 80 year olds in better health than I! It’s not age that matters when it comes to illness. Even children get cancer, and none questions that, but a young person with a chronic disease?! No way! ”You’re too young to be sick!” or even ”You’re too young to get pain killers/sleeping aids/referral to a specialist”…

Seriously? Can you stop that?

I’m fighting for my life to get more active, to get the most out of my life as it is, and all I get is an attitude that I’m trying to make myself passive.
I am so incredibly frustrated!

image

Vision aid: A picture of my dog Alizza in our garden

Strangely enough, I actually didn’t get a dog to lay down and die in an electric wheelchair…