Since summer has hit where I am currently located with full force – let‘s talk about temperature. About temperature confusions to be exact. Don‘t ask me why exactly that is, but a few very strange symptoms come along with this syndrome…well, it‘s an illness that involves nerve damage, hence the strange symptoms I guess. 😀 I have written two blog posts about ‚confusions‘ already, one of them was about taste confusions, the other one about pain confusions. Go check them out, one of them is a pretty funny read – you will probably be able to find out based on the titles which one I‘m talking about. Well, both of them are just covering the crazy symptoms I was having during the first few weeks after my diagnosis. I actually thought I was losing my mind.

Temperature sensation/control is the third body function that is not really working the way it should with this syndrome and out of the three it’s the one issue most apparent at the moment. The issues I was having with taste are completely gone by now and the issue with pain is a constant up and down. I am in pain – sometimes it’s almost not noticeable, sometimes my nerves are working like crazy.

Yes, I do love me some self-made collages 

Now let‘s talk about temperature. I don‘t really know where to start because there were quite a few situations where I noticed that something was wrong with my sense of temperature. Let’s start with the most obvious one: the daily shower. The first few weeks in the hospital a nurse had to help me shower because I wasn’t able to do it myself. That’s why I noticed even more that something was wrong. What I was feeling basically was the water temperature fluctuating from very warm to almost cold. First I thought that the temperature of the water was just hard to adjust, but I somehow knew that it might have something to do with myself, my body, my nerves. Also, I was in a hospital. It did seem kind of strange to me that the temperature would go up and down so drastically…I mean, there are patients being showered by nurses who might not be able to react as quickly as I did when I had the feeling the water was too hot. Well, let’s go on. When I started suspecting that it’s my body and my nerves behind it after all I started to pay close attention to my sensations and of course I noticed a pattern. The further I was going from my toes up to my calf, the more I was feeling the actual temperature of the water. So let’s say the water was too hot or too cold for my liking. I wasn’t able to feel it on my feet and legs. Everything was feeling lukewarm from about my bellybutton down. The further up to my calf I was going with the shower head, the more I was feeling the actual temperature of the water and thus if it was too hot or too cold. Since I was sitting on a shower stool (still am) when showering, of course the first body parts the water would touch were my lap and my legs…only when I put the shower head over my head I would flinch because then I would notice that it’s too cold. Okay, I think I have explained it in enough detail now…it’s just still amazing me how the body and the nerves work and which symptoms one is feeling when they do NOT work the way they should.

Of course, this is not just a GBS-thing. Almost everyone I talked to in the neurological unit I was staying in was telling me about similar sensations. A woman who became a very dear friend once said after showering that the shower isn’t working properly because it’s crazy how much the water temperature fluctuates considering we’re in a hospital. I told her that it’s not the shower that is not working properly – it’s our bodies. I think we laughed for about a week. 😀

There were other situations as well where I noticed that my body is absolutely not in control of it’s temperature. I was diagnosed in January and it was very very cold outside during my first few weeks in the hospital. Like crazy cold – for a week we had temperatures between -10 and -20 degrees Celsius. Sometimes I would open the window directly beside my hospital bed because I wanted to get some fresh air. I would completely forget about it and only when a nurse came in and said that it was freezing cold in the room I would notice that it might be a little bit chilly.

I generally did not really feel cold…I constantly had the feeling that I was sweating like crazy even though that was not the case. I started to measure my temperature ten times a day because I got so paranoid.

Once during physical therapy the therapist put an ice pack on different parts of my body and asked me what I was feeling. I was seeing the ice pack, I knew she got it out of the fridge and I knew that it was supposed to feel cold but I was feeling something completely strange. I was feeling something extreme, yes, yet I was unable to define it in detail.

I’m not gonna lie, these things fascinated me from day one. Even though it was the most difficult, painful, traumatizing time of my life – my fascination for these batsh*t crazy symptoms was probably one contributing factor why I made it through so well mentally…even with the pain issue I was genuinely more fascinated than scared sometimes.

I have always been a person that doesn’t like it when it’s too hot…I do like the summer, but for example I could sleep with an open window the whole year. I live in Austria by the way, we do have pretty cold winters. Now everything is just strange…as a whole, I still like it if it’s quite cool in the room at night but my hands and feet are still freezing cold. In retrospect this has been one of my first symptoms. I was diagnosed in January and back in November I started sleeping with two hot water bottles – one for my feet and one for my hands. I wasn’t cold as a whole, I was still only wearing a light shirt and underpants as always…but my hands and feet were so freezingly cold I actually needed two hot water bottles every night…now I know why that was, but back then I and everyone around me was kind of confused by my behavioral changes.

I have read about a lot of others not tolerating the heat too well. I have to say that I did not notice something in particular until a few days back when temperatures really hit high summer levels where I am. Now, my feet and hands are definitely crying out over the heat, the nerve pain is getting worse again, but I am hopeful and confident that it will stay within a tolerable pain level over the summer.

Thanks for reading my post. As always, if you have any questions, remarks, experiences to share,… I would be very honored if you would take two minutes of your time to comment down below. Answering to every single one. 😉

Having to deal with very slow progress isn‘t easy. In the beginning, there was no progress at all. I was dealing with quite the opposite. Noticing every day that I could move my hands a little bit less than the day before. Feeling the numbness crawl up to my chest. I was scared constantly that the paralysis wouldn’t stop. Thinking about that now really makes me wonder how I managed to keep my sanity. How I did not end in a total mental breakdown. I was close, I’m not gonna lie. I remember the day quite vividly I almost lost my mind and drifted into a psychosis. But I somehow managed to pull myself together at the very last moment. I will dedicate a separate blog post to this story when I’m ready to share it – I want to share it and it’s definitely worth reading.

Now back to the topic of this post. After the progression of the paralysis has stopped right before the worst case scenario, there was a time period where I had to adjust. For about a week I wasn’t noticing any big changes, not for the better but neither for the worse. I was too occupied staying sane and getting used to the situation.

When I am talking about progress, I have to mention once again that this crazy syndrome is very complicated. I made rapid progress in terms of movement and basic abilities because I found ways to work myself around the existent paralysis. I have explained this phenomenon in another blog post called ‘Paradoxical Abilities‘. Go check it out if you haven’t read it already – it will make this one much easier to follow.

Basically, the paralysis was still progressing while I was starting to find out how to do things anyway. Maybe a little differently and awkwardly but it was enough to look and feel like progress. That’s why I will never really know when exactly I was actually physically progressing. Also, no one will ever be able to tell how much of my progress is taking place because of countless therapies and how much is taking place because my nerves are actually healing – a process that can take months and years.

The moment I noticed that something in my body was definitely changing for the better was when I realized that I am able to put the tiniest bit of weight on my leg without hyper-extended knees. Not being able to stand normally without falling to the ground has been THE symptom for weeks. Falling, not being able to stand up… These are the things I am still struggling with but also the things I can measure my progress on. Now, four months after my diagnosis I am able to stand. I am able to walk without hyper-extended knees. I loose my balance easily, I have to walk with crutches. I’m not yet able to stand up from a chair. I’m not able to stand on my toes, to jump or run,… Every single step I take I have to be very careful. Even with crutches it happens that my feet just give in and I’m not able to react in time and I fall. I lose my balance and fall as soon as I close my eyes.

I am NOT focusing on the negatives here, I just want to draw a slight picture of where I am at the moment in my physical recovery process. Just the fact that I am able to take steps or stand is amazing and I know that there are so many other cases where the progress is much slower. I know that I am extremely lucky and that things could be much worse. Still, the thing I have been struggling the most with during my journey has been slow progress. Or more accurately, I am struggling most with the fact that no one can tell me when the recovery process will be completed. Every single moment of the day and often sleepless nights I am trying to picture myself just casually doing things…casually walking down a street, walking my dog in the forest, walking up and down the stairs or a hill…even just casually doing the laundry. I am basically trying to picture myself just living my life – living it casually – and it drives me insane that I have no idea when I will be able to do so.

Well, those of you who have followed my journey for a while now will know that I am still going to end this on a positive note. 😉 I just want to be honest and authentic. I AM struggling. It is a tough fight. But every single day I am fighting to keep up my positive attitude as well. I will be able to live my life when I get out of rehab. Maybe not in the most casual way imaginable, but still.

I am trying to accept that I will have to deal with physical constraints for a while now – but accepting it does not mean that I will let myself and my life be defined by it. For now, it doesn’t matter that I’m not able to run or jump or stand on my toes. When I get out of rehab I will continue to work hard, I will continue to make progress – however slow or quick it might be – and some time in the future things will come back eventually.

I do have my moments and days when I am not able to see it like that. Moments I feel nothing but despair and helplessness. But those moments and days pass, because I am consciously making the decision to focus on the positives and do something about the situation, about my state of mind. By the way, being able to do that does not come naturally for me. Over the past ten years I have dealt with mental illness and there was no sign of me living my life – least of all casually.

My journey with this syndrome has taught me that there is nothing more important than living my life for myself and for myself only and that I alone am responsible for my happiness, my state of mind, my attitude. I have learned that I do not have to be able to do EVERYTHING right now in order to live, to have fun or to pursue my goals. It’s important that I do not stop, that I do not give up and I know that I will have to continue to work hard every single day to continue to make progress.

I can’t wait to apply everything I have learned about life and myself and everything I am still learning as my journey continues to actual everyday life – it will be absolutely spectacular. (You may decide for yourself whether that’s a promise or a threat. 😉 )

In this blog post I want to write about my experiences with the IVIG treatment. To explain what the treatment does I will try to explain the syndrome briefly in my own words. You can find detailed medical explanations on the internet, but I will tell you my personal understanding of my illness, the way I picture it happening in my body.

GBS is an autoimmune disease. My immune system is attacking my own body. This was triggered by an aggressive virus, in my case it was a gastrointestinal virus. Long after the virus was gone my immune system was still thinking I had the virus and was producing antibodies to attack the virus. Also, the outer layer of the nerves have a similar structure as viruses. How handy… Well, antibodies need something to do, they don’t want to sit around being lazy. Since the virus was long gone, they started to attack the thing that came closest to the virus they were supposed to get rid of – my peripheral nervous system. The PNS consists of the nerves outside of the brain and spinal cord. So these antibodies were nibbling on the outer layer of my peripheral nervous system. I myself am picturing it like the plastic layer on a cable, the layer that seals the actual cable. Well now there’s all these little holes through which information gets lost. That’s why this syndrome causes ascending paralysis. It starts with the feet and the hands because the nerves down to my toes and fingers are the longest – longer nerves mean more space for the antibodies to attack which means there are more holes for information to get lost.

This is how I understand the scientific explanation of my syndrome. If I’m wrong with any of my ideas, feel free to correct me.

GBS is mainly treated with either IVIG or plasmapheresis. IVIG means intravenous immunglobulin and it’s an infusion. Plasmapheresis is kind of like a dialysis where they change the body plasma. I really don’t know what they do exactly, but both should help getting rid of those antibodies which feel the need to attack the nervous system instead of being happy they can hang around in my body for free and be lazy. I was treated with five rounds of IVIG, so I will focus on that as I don’t have any experience with the other treatment. Feel free to share your experiences in the comments.

As I said, I was treated with five rounds of IVIG which basically means I have been hanging on infusions for five days straight. The infusions took up to eight or nine hours daily because they had to drip very slowly and because the liquid was so thick it was clogging my veins.

I have read from a lot of others who have felt very tired, fatigued or nauseous after getting their infusions. I have to say that I am not able to tell if I had any side effects from the treatment. The doctors gave it to me pretty quickly, so I was still in an insane state of exception when I got the infusions. I was scared, worried, confused, I wasn’t eating – I was basically on the verge of a complete mental breakdown. Of course I was fatigued and I felt nauseous also, but I can’t really tell if it was from the infusions. I had just been diagnosed with a serious illness, I wasn’t sleeping at night and restless but tired at the same time so I was in an exceptional state anyways. So I can’t really report about side effects caused by IVIG because I just don’t know if they really were due to the treatment.

The absolute worst for me was the infusion itself. As I already mentioned, the infusions lasted up to nine hours. Also, it had to be monitored, so the infusion itself went through a device that was making unbearable alarm noises every time I moved my arm a little bit. The thick sticky liquid was clogging my vein and causing a painful inflammation. I had a light fever and my arm was hurting like hell. When the doctor checked my reflexes and when nurses grabbed my arm when they helped me transfer I almost cried because of the pain.

There was another aspect that made everything still more difficult for me than it has already been. At the time I did not know that the treatment is a pretty expensive one. I am lucky that I live in a country with a functioning healthcare system – at least compared to other countries – and that I absolutely did not have to worry about anything concerning finances. When reading some of the other GBS-journeys on social media I felt heartbroken seeing that soooo many of you have to worry about the financial aspect as well in addition to this horrible diagnosis. I am truly aware that I am so so lucky not having to worry about finances and still getting the best treatment and therapy there is. Well, the point I actually wanted to make is that it was difficult for me that every nurse had their own “rules” concerning the treatment. For three days straight it was no problem getting detached from the infusion to go to the toilet or to go to physical therapy. On the fourth day a nurse suddenly told me that she absolutely can’t do that because it’s very important that the infusion gets into my body as quickly as possible. Well, I was already confused, paranoid and on the edge of a mental breakdown and that almost pushed me over. I was asking myself if that nurse was doing it wrong or if the three nurses the days before had been doing it wrong. Of course I knew that slight inconsistencies would not lead to immediate death, but as I said, I was in an exceptional state and small things like that were pushing me over. In the end someone told me that this particular nurse was just scared that something would happen to the very expensive immunglobulin before she got it into my body.

At the time I wasn’t really able to tell if the treatment had any effect. I still did not understand anything about my condition and I was very confused and mentally unstable. But looking back, the days after I got the treatment must have been the days when the condition finally plateaued. I do not fully understand the syndrome or the treatment, all I’m writing about is my personal experience.

That’s kind of everything I can report about my experiences with the treatment. The doctors here in rehab keep mentioning that I might be treated with occasional “extra rounds” of IVIG when I get back home, but I do not know anything specific about that yet.

I know this blog post is not the most captivating one, but I wanted to share my experience as well. Please comment or contact me if you have any questions or anything you want to share about one of the treatments.

PS.: No, I am not a giant – I know the drawing is not really to scale, the size ratio of the arm and the I.V. pole might be a little bit off if you look closely. 😀 But oh well, I did my best…

 

 

I know that I have written about this topic in a few other blog posts already. But since it is THE big issue with this syndrome and the most horrible part of the illness for me personally I want to dedicate a whole blog post to this topic.

falling

Also, I am writing this after I just fell. I have been fall-free for almost four weeks. Three weeks and six days to be exact. Yes, I do know and remember every single fall. Last time I fell I was still walking with a walker. Today I was falling while walking with crutches. Since I have always tried to focus on the positives, let us say that this is an improvement. 😀 Today I was falling better than last time, or at least on better terms.

Falling down in public and not being able to stand back up again marked the beginning of my journey with GBS. You can find a blog post on how this syndrome even managed to turn my recurring nightmares into a reality HERE.

Now I want to solely focus on the falling itself and how it is affecting me in my recovery process right now. As I said, I have been fall free for 27 days now. Today I am back to zero. In the beginning I was falling quite often. All the time to be honest. During the physical therapy sessions in the hospital, when I started trying to transfer alone,…

Over the last few weeks the frequency of falls has been decreasing. I fell two times during the first week of my rehab and today.

I do not really know how to describe the feeling I am having right now, after falling again for no apparent reason after four weeks. I know that my nerves are nowhere near back to normal yet, that they are still damaged and that it’s just natural that stuff like this is still happening. I also know that I should be aware that stuff like this will continue to happen in the future.

I am improving a lot here in rehab. A few days before I came here I was still in the wheelchair for a few hours a day because I did not have enough energy yet. Today, five weeks later I’m mostly mobile with crutches. I use the walker for longer distances or if I have to carry something. Of course I’m only talking about being mobile about 400m around the rehab facility, but still. Objectively seen, the improvements are really really good.

Having to deal with this fall is challenging. I did not hurt myself badly or anything, that’s not the issue. The issue for me is not knowing in the slightest how or why the fall happened. I have absolutely no idea why it happened. I am taking a step and the moment the muscles should know they have to work now so I can take the next one they just decide to take a break. Not knowing how it happened or how I might have been able to prevent it is so frustrating. For everyone who might be thinking that I am overreacting or that everyone stumbles every now and then – it is different. I did not stumble. Like the times before, my leg just refuses to do what it should do automatically and before I know it I am sitting on the ground. I guess there is no use in trying to find out why exactly it’s happening. Why it did not happen for 27 days and then it is happening again. I am not going to lie, having to cope with that is not easy. It is f*cking hard.

Still, writing this blog post I realized that the core topic of it should not be ‘falling’. Let us change the topic of this post right here at the end to ‘getting back up’. Because in the end, the falling part is not the important part. The important part is that I am getting back up every single time I am falling.

I am doing that metaphorically spoken in so many different aspects. Going through something like this and to be honest just in general we have to learn how to deal with setbacks. Life is not designed the way that everything is going exactly according to plan all the time. There will be difficulties, you will make mistakes, you will fall now and again…but burying ones head in the sand will not change anything for the better. Get back up and try again. If it’s still not working out, try it a different way or try something else. Just do something about the situation. In the end, it will not matter how many times you failed. If you never give up you will succeed eventually and that will be the only thing that matters.

In the end, it will not matter how many times I have fallen. It will matter that I never gave up and that I made it through – and I will be so f*cking proud of myself.

 

In this blog post I want to share my personal experience with pain during my GBS journey. I have read a lot about this issue and it seems like it is one of the most inconsistent symptoms between different GBS patients.

In the beginning all I was feeling was numbness. I hated the feeling and I was not able to lay in bed without long pajama bottoms even though I was hot constantly. I could not stand the feeling of my bare legs under the covers. The first pain I was experiencing was pain in my knees and ankles because my legs would lay in strange positions during the night without me noticing. Already then I was really pissed that on one hand I wasn’t able to move or feel my legs but on the other hand I was feeling pain. Well, I did not know yet that it would get much much worse.
GBS is a syndrome where my immune system attacks my nerves. The outer layer of my nerves gets damaged, that’s why it causes ascending paralysis. Well, nerves take a very very long time to heal and nerves that are healing are causing pain. Kind of like a wound that itches unbearably while healing. In my case, I had terrible pain in my toes and feet. The doctors always asked me which pain I was feeling – if it was burning or hurting in some other way. The best way I was able to describe my pain was the following: imagine having extremely cold feet or hands because you’ve been outside for hours in winter. I’m talking about pretty damn cold hands and feet. The kind where they are so frozen that you can’t feel them properly anymore. Now you’re coming home and of course the first thing you want to do is to defrost your hands and feet and you get the idea to put them under warm water.

Taste confusionTHAT’S the pain I was feeling constantly in my feet. A sensation where you don’t know if your feet are freezing or burning. They are just tingling so much that it hurts like crazy. The doctors prescribed Gabapentin and slowly increased the dosage according to my pain. For months I have now been and still am on 1200mg Gabapentin and the pain is down to a constant unpleasant tingling. I haven’t really read into the substance, I don’t know anything about it’s side effects. It was something I really did not care about at the time. Now I am starting to think about it, how the substance might work on my body. Of course, it calms the nerves and helps with my pain, but I am also thinking about the negative effects the substance might have. I don’t want to feel that pain again, but I also don’t want to take any hard substances for longer than absolutely necessary. If there’s anybody who has experience reducing the dosage or knows anything about it really, please comment and share your own experiences. I will definitely ask the doctors soon if reducing the dosage might be an option we could try.

I want to share another aspect of pain I was experiencing during my journey. It is something I have only experienced during the first few weeks, about the same time frame I was experiencing other confusions. Check out my blog post about my very strange and funny taste confusions.  I had similar confusions when it came to my sensation of pain which sadly wasn’t as fascinating and funny as the taste confusions. I basically felt pain that was not there when it looked like it could be there. Well, that probably did not make sense at all. Let me try to explain it with examples. When I was laying in bed and my legs were under the covers, I did not know where they were or in which position they were laying there. I knew based on logic that the covers could not break my toes or rip out my toe nails. But the slightest contact on my toes or feet was irritating me so much it really felt like it was happening. One night these symptoms got so bad I was calling for a nurse every half an hour to let her check my toes. It was nearly driving me crazy. Not just the pain but the fact that I knew that my toes were not broken but it felt like they were. Similarly, when I was sitting in the wheelchair and somebody would push me a little bit too close to an obstacle I would startle because for a split second it felt like I hit that obstacle badly when I didn’t even touch it. One time I was sitting in my bed, I was holding a pen and talking to somebody at the same time. Somewhere during the conversation I put the pen down into my lap. I saw that from the corner of my eye and I cried out because it looked like I was stabbing myself with something and for a second it also felt like that.

I don’t really have an explanation for that. As I already mentioned, I was only experiencing these confusions for the first few weeks when I had all those other confusions as well. They all slowly disappeared. If there’s anyone who has experienced similar things, please comment and share your experience. I’m interested if anyone has experienced the same strange things and I think that it might help others who are going through similar things right now.

I have never considered myself to be a courageous person. I never dared anything. As a child, I always wanted to be the good one. I went through a phase where I probably wanted to be courageous, but to be honest, the things I was doing were just foolish.

I was admiring people who dared to try new things. People who just went with the flow, not thinking too much about where it would take them.
Meanwhile I was stuck. Stuck in my own comfort zone. Too scared to try new things because they might not turn out exactly the way I was picturing them. I was too scared to do anything and at the same time I was so frustrated with myself because I wanted to do those things. I just never knew how to escape my own comfort zone. Today I would like to travel back in time and kick myself in the butt. Hard. 😀

Learning to do things that once came naturally was kind of like a boot camp for me. A boot camp where I was learning and experiencing that the good things really do happen when you manage to step out of that zone. Also, sometimes I was forced out of that zone. I was pretty much paralyzed from the waist down and I wasn’t feeling much either. When I thought I hurt myself in a private area I had no choice than to let a nurse check that area.

And when I had to learn how to stand up and take a step again I had no choice than to just try. Just do it. In the beginning I was overthinking everything. When nurses told me to try to stand up a certain way I always said that I can’t do that. That I would fall. That it would not work. Most of the time I was right, but only when I started to try it anyway I was able to find the one way how it might work. Of course I failed a hundred times because for a long time I was physically unable to stand up because of my paralysis. But only because I was trying anyway I was able to feel the very slow improvements. Only because I was trying I knew where my limits were.

Comfort zones are dangerous. They limit us. During my journey with GBS I had no choice than to step out of that zone. And I am so proud of myself and how I managed to do that. I knew that every step I was trying to do was a risk to fall but I took those steps anyway. And I fell many many times.

This video is showing me going down the stairs with my therapist in the hospital.

This video is showing me going down the stairs with my therapist in the hospital. It was taken a few days before I went to rehab, so towards the end of April. At the time I definitely wasn’t able to step down the step without major support from both sides. I’m still not able to do that. I was able to bend my knees slightly without them giving in, but not as much as it is required to step down a step. So when I walked down those stairs with my great physical therapist she asked me a question: Do you know how much courage you are gathering every single time you step down a step? First I laughed, but she really made me realize what the hell I was doing. Stepping down despite knowing that I would fall without her support. Trusting her to hold me – and she’s quite a small woman. She made me realize that I may be a Gryffindor after all. For all those heathens who have not read Harry Potter: Gryffindor is the house the brave witches and wizards are sorted into. 😉
But seriously, having to learn all those things requires so much courage. Not just those big things. Walking down the stairs or taking a step. Every big or little thing I was trying to do where I did not know if it would work out took the courage to try with the sometimes very likely possibility to fail.

We tend to stay within our comfort zones. It’s what I have done my whole life. But now I have realized that I no longer want to just admire those people who try new things and go with the flow. I want to be like them. I want to try new things, I want to do things I have never done before, I want to dare, I want to live… And I will do all those things. I am doing them already. During the most difficult time of my life I have found my courage and my will to live. After having to learn how to take a step again and still learning to walk stairs I am definitely considering myself to be a very courageous person.

I always loved thinking about complicated things and creating complex scenarios in my head for hours. I have been suffering from insomnia for my whole life, so I had a lot of time to think about random things and turning them into the most complicated scenarios you could imagine. This talent of mine was both a blessing and a curse for the time I got diagnosed with GBS. On one hand, I figured out the important aspects of the syndrome pretty quickly. On the other hand I was overthinking every little detail. It got so bad I almost lost my mind and drifted into a psychosis, but that’s a story for another blog post. In this one I want to show how self-contradictory this syndrome is or feels like.

After weeks of knowing something was wrong but no doctor taking me seriously I was finally admitted to a neurological unit on January 26th. As I have told you before, prior to that day I have even come to the point where I was thinking everything is just in my head and that I just need to pull myself together. Well, that couldn’t have been more wrong. At this unit, the doctors suspected GBS from day one, after a few days they were pretty sure and it became my official diagnosis. Hearing that you have a disease which causes ascending paralysis is pretty damn scary. I mean, at this point I wasn’t able to stand up or walk anyways, so I experienced it. But hearing the facts somehow scared me more than my actual condition at the moment. Of course it felt terrible not being able to move my feet, but hearing that it will probably still get worse was scaring me so much I didn’t really have time to be scared of the present situation. So over the first two weeks in the hospital it did get worse. I was feeling the same thing happening to my hands and arms, the numbness slowly made it’s way up to my chest and my facial muscles got weaker. Always having in mind that the paralysis could reach my respiratory system these two weeks were horrible.

But the progression of the paralysis stopped right before reaching the worst-case scenario. I am aware that I was extremely lucky. For a few days I wasn’t sure if anything was happening, progressing, slowing down,… When I was sure that the progression had stopped and my condition plateaued I started to focus all my energy on improving my condition, my movement, my abilities, everything.

In the beginning, most of my improvements did not consist of actually getting better. I am a highly analytic person and as soon as I figured out why some things were not working the way I wanted them to I was able to work my way around them. I rapidly developed evasive movements – even the doctors were impressed. The tests showed that my nerves got worse, still I was improving rapidly in terms of movement. I figured out that I can stand with hyper-extended knees. So in order to get into a standing position I only had to figure out how to push or pull myself up with my remaining arm strength. I’ve never been a physics genius, but I think what I made use of is called leverage.

The most vivid example is probably this video of myself walking with a stick and as soon as I’m in some kind of rhythm, I’m even able to walk freely. This was in the middle of March, I was so so happy. I think I was screaming because it felt so great to walk freely for a few steps. I was happy until my therapist brought me back down to earth. I wasn’t reeeeally able to walk because I wasn’t walking properly. I had developed a new technique, an evasive movement. I was walking with hyper-extended knees to avoid using the muscles that were not working anyway. It took another month until I was only starting to put a tiny little bit of weight on my legs without the hyper-extension and not falling immediately.

I think this paradox is very difficult to understand. I myself had troubles understanding why on one hand, I was able to stand, on the other hand I really wasn’t because I wasn’t doing it the right way. My quick understanding of the condition and rapid development of evasive movements were very practical on one hand. I was soon able to get into the wheelchair on my own and therefore I was mobile and somewhat independent. When I figured out how to walk however, it almost turned into a problem. Firstly, I was overstraining my knees. Secondly, I was getting used to my new (false and harmful) techniques.

The day this video was taken I remember thinking that it would not take much longer until I’m able to walk without a walking aid. In reality, I wasn’t able to walk at all yet and only now, two months later I am getting strong enough and confident enough to take a few proper steps freely.

With this blog post I just wanted to show a little bit how complex this syndrome is. I’m trying to explain it as best as I can and please, if you have any questions or want to share your own experiences – comment or contact me. No one in my personal environment has ever heard of this syndrome before and since May is GBS-awareness month, let’s raise some awareness. 🙂

confusionLet‘s take a look back to the early stages of my GBS-journey. In previous posts I have already mentioned that besides being partly paralyzed, this syndrome had

or has a lot of “side effects”. Sensory disturbances like numbness and not feeling temperature right were things I kind of understood. At least I was able to comprehend why these would be symptoms that come along with paralysis. But during the first two weeks of my hospitalization I experienced so many different confusions concerning my body that I really did think I was going completely crazy. These confusions as I will call them mainly involved temperature, pain and taste. Let’s focus on one of them in this blog post and I will write about the others in upcoming posts.

Everybody has their own taste. I was extremely picky when I was a child. Ask my mom, the only things I would eat were sugar and meat. Now I basically eat everything.

I really don’t know why I had such confusions with my taste and if anyone with GBS has experienced something similar pleeeease comment or contact me and let’s talk about it because it’s still driving me crazy not knowing what and why that was. And now I will finally try to explain what I’m even talking about.

My theory is that my taste was affected as well in the beginning. It could be that I was just overall confused and didn’t even know what I was eating or tasting anymore, but the confusions were just too real and I tested them on every level. First I have to say that I wasn’t eating much. Prior to my diagnosis I had just spent a whole week throwing up everything I was trying to put into my system so I was careful. In the beginning the only things I would eat were bread in the morning and soup. But when I started to eat more things I started to notice that my taste was completely off. The only things I was tasting like always were the things I consume regularly. In this case, it was Coke and hot chocolate. I knew how these two taste and I was tasting them when I would drink them. But then I noticed that if I tried things I did not know very well from before, they had a really strange taste. One specific example was a liquid yogurt with strawberries. I’m not much of a yogurt-eater and when I took the first sip it tasted like a gummy bear. Not just any gummy bear. I took a sip of the yogurt and what I was tasting was a transparent Haribo gummy bear. 😀 I had the same strange experience with the meals. The things I knew tasted like I would expect them to taste but the things I didn’t know tasted like something completely different from what they were.

I started to test it. My boyfriend bought two drinks and I tasted them blindly. I immediately told him that the first one was apple juice and the second was a herbal lemonade – they look the same. With closed eyes I was able to tell what I was tasting but when I tried them again with open eyes and saw them I suddenly wasn’t able to tell which was which anymore.

Also, once my mom brought a self-cooked meal we cook regularly at home. It was looking like always, I ate it and it tasted like always. Afterwards she asked me if I noticed anything. She had cooked the meal in a way that it looked the same but it tasted completely different. I did not notice. I was looking at it, it looked like it always looked like and therefore it tasted like it should have tasted based on what I was seeing.

I don’t know if I’m making any sense and it’s so frustrating because I really was fascinated and I want to be able to share this experience.

To sum it up: It was like I wasn’t really able to taste the things but the things I knew well tasted normal because I knew how they should taste. My brain was filling in the lack of tasting ability. But of course, it was only able to do that with the foods and drinks it knows well. That’s why the things I did not know well tasted so weird.

As I said, if there’s anyone who has experienced similar confusions, please comment or contact me. I think it’s so fascinating and the fact that no one will ever be able to tell me what that was or if I was just imagining things because of my distress is driving me crazy.

I know this blog post is kind of confusing, but I hope it was somewhat interesting as well. I promise, the next one will make more sense.

 

 

my dog lolaGuess who I’ve been missing the most in the hospital and am still missing like hell here in rehab? Exactly, my dog! Besides being a huge Harry Potter fan I figured that’s something important you don’t know yet about me. My love for animals, especially my black lab Lola.

I think it’s amazing how a dog can be such a comfort when nobody else is able to lift your mood. It’s just crazy and beautiful. You’re in such a bad mood and frustrated and sad and nobody can find the right words to make you feel better. But a dog or any other animal you have a bond with can make you feel better instantly with just their presence.

 

I had not seen my dog for two months when I was able to go home for a few hours in my wheelchair. That day I told my mom and my stepfather that I wouldn’t be visiting them and that they will have to understand that I’m only visiting my dog because she’s the only one who can’t visit me in the hospital.

So I came home, I got from the car into the wheelchair and then I finally saw her again. First she was a little bit confused because of the wheelchair. But as you can see in the video, as soon as I showed her how it works and that I can move with it she was just like “oh well, that’s how she wants to move? that’s fine with me as long as I can still jump around like crazy.”

I loved how naturally she reacted to the wheelchair. Dogs have a talent of always being in the way but with the wheelchair she found the balance of being cautious and being her cute and crazy little self instantly.

Anyone claiming animals don’t have a personality really don’t have a clue. Lola is just the best. Her cute little head tilts when I’m saying something she understands, her deep sighs when I’m telling her she can’t do something right now, her sense of guilt when she knows exactly that she has done something wrong. Most of all, her behavior when she notices that I’m sad. How she looks at me in concern and tries to comfort me with a hug.

my goat camillaWe also have a goat with a very strong personality. Her name is Camilla and if anything doesn’t go the way she wants it to, she can be very vocal about it. I love this picture of her because it’s just so funny how she reacted. Normally my stepfather is the one taking care of her, bringing her hay, giving her the attention and strokes and cuddles she definitely needs.

That day, my stepfather and my mother went on vacation and I had to take them to the airport in the middle of the night. I was back very early in the morning and thought I might as well spend Camilla a visit immediately and bring her some hay and fresh water for breakfast. As I said, it was very early, I walked into her little shelter and that’s the look she gave me. I had to laugh so hard I almost fell over. She was looking at me with such confusion and disorientation over the fact that I was standing in front of her so early in the morning. I think noon is the earliest she has ever seen me before that.

I know this blog post does not really have anything to do with GBS. But I figured you should also get to know me better and what’s better than a random blog post about the two best animals on earth?

Lola and Camilla aren’t just animals to me, they are some of the best people I know and I don’t know what I would do without these two. They make me laugh, they keep me company, they just deserve to get their own blog post and you guys got to know something very important about me: I looooove animals more than anything in this world.

I did not really know what to write about in this blog post following my post about going to the toilet. I tried to come up with something equally funny because through my journey with GBS I always tried to maintain a sense of humor. And I promise, I will share the funny story I mentioned in my last blog post someday, but today I want to share something very personal.

Everyone knows these recurring nightmares that you wake up from feeling completely powerless and desperate. I’m not talking about nightmares involving monsters, murderers, blood or spiders. I’m talking about very specific scenarios. A very common one among my friends and family is the dream of losing ones teeth. I have not had this dream in a while, but I had times when I was dreaming that my teeth were falling out constantly. I would wake up feeling so helpless about the situation and even when I realized that it was just a dream, the horrible feeling just didn’t want to go away.

But this was not my personal, horrible recurring nightmare that I have been dreading every night before going to bed for the last ten years. If you’ve read all my blog posts you will know that I have been suffering from depression since I was 14 years old. Over the last ten years I’ve been to the point where I did not know how to carry on multiple times. This feeling wouldn’t even go away at night. My personal recurring nightmare is falling down in a public place and not being able to get back up again. In difficult times I was having that dream every single night.

I can remember one of those dreams as if it was yesterday. I think I must have been 16 years old when I had that dream. The dream went as follows:

It was after school, I was carrying my bag and I wanted to take the train home. I was walking through the central station of my home town. It was after school, so the station was crowded. Right when I was in the middle of the main hall I fell down. I did not stumble, my legs just gave in and I was sitting on the ground. Everyone was staring at me and waiting for me to get back up but I wasn’t able to. I tried to get up on my knees, but I was too weak. People tried to help me and still my legs just refused to carry my weight. They thought I was messing with them and walked away. I was sitting on the ground in the middle of the hall, unable to stand up, feeling so helpless, powerless, desperate. Buried under my own weight, my life.

When I had those dreams I would wake up feeling exactly like the girl in the dream and the feeling would not go away for the whole day. In bad times I was feeling like that girl constantly. Buried, not knowing how to carry on for one more day.

On January 26th this dream became a reality. I was on the way from the car to the doctors office of my psychiatrist. I was weak, I was walking funny, I had just spent five days in the hospital and for the last eight weeks I had been running from doctor to doctor because I knew something was wrong but no one was able to tell me what it was. So that day I was able to get out of the car, I was walking slowly and with the support of my stepfather and suddenly I fell. Like in my dreams, I did not stumble. It happened so quickly that my legs gave in and I was sitting on the ground. I tried to stand up again but I wasn’t able to. No matter how hard I tried, my legs refused to stand up.

Getting a disease that is so accurately mirroring my recurring nightmares feels crazy. Over the last few months I was thinking about those dreams a lot, why I was having them. Because I was feeling helpless and powerless, like I had lost control over my life. GBS made me lose control over my body but it also showed me that there’s always something I can do to gain back control. I did and I still do have the moments I feel helpless and powerless and desperate. When I’m trying to get up from a low seat and I’m not able to stand up. When I fall and I don’t really know why my legs gave in again. When I think about how far I’ve come but realize how much longer this journey will take.

The video was taken March 23rd and is showing me proudly standing up from the ground on my own, something we worked on in therapy for weeks

Those horrible dreams becoming reality made me realize that I never ever lose control completely. No matter what it is that makes you feel like you’ve lost control, there’s always something you can do about it. Even if it’s using your imagination because you can’t move your body. Using your hands because you can’t move your feet. Falling down, losing control for a second but deciding to get up again. Not letting anyone control you, walking away from people who are trying.

Don’t get me wrong, I’m not saying that it’s easy and I myself am struggling with this exact issue immensely. But experiencing these horrible dreams in reality really showed me that I never lose control over myself completely and that I can do something to change the situation. Even if the only thing I can do is crying for help and being lifted into a wheelchair.

I am doing something to change my situation. I don’t have to stay on the ground feeling desperate forever.