Me crying on the way home after saying goodbye to the nice staff
Thursday, 28.06.2018 – Arriving Home
Well, saying that I‘m on an emotional roller coaster officially is the understatement of the year. I cried more today than I did in the past six months taken together. The crying started when I said goodbye to the staff at the rehab facility who really helped me so much to feel like home and it ended at home where I hit solid ground once again pretty hard.
I am so happy to be home and I know that I will adjust eventually…still, the conclusion or the GBS-related life lesson of the day has been that being physically impaired in a safe environment like a rehab facility is something completely different than having to deal with it at home. I have not known the rehab facility before…I arrived there barely able to walk with a walker and every day it got better. The last two weeks almost felt like normal. At home – the place where everything should feel the most natural and normal as possible – my physical limitations are much more present because it just does not work the way it did before yet. But I am positive that I will adjust…it will take time and there will be new challenges every day, week and month, but I am strong enough to overcome them.
Tomorrow will be my first full day at home and I am actually kind of nervous and excited about it. Preparing my own breakfast, playing with my dog, visiting my grandma and my doctor, running a few errands….that’s the plan. We’ll see tomorrow how it will work out. 😉
First time walking up the steep stairs at home
Friday, 29.06.2018 – First Full Day
First full-blown emotional meltdown – check. It’s tough. On one hand I am feeling as if I did not do anything today to improve my physical situation…I feel like I did not train enough or that I did not do enough therapy by myself. On the other hand I am feeling completely knackered. I know that I am not giving myself enough credit for just mastering the first day at home. I was out and about, going to the doctor, the pharmacy, grocery shopping. I visited my grandma and at home I wasn’t able to sit still…I started to sort out my wardrobe and my books. I basically did something the whole day, I know that. On top of that, I conquered the stairs a few times. THESE STAIRS.
At rehab, I wasn’t using the elevator anymore…I was able to take the stairs the whole day. Of course, in the evenings it got a little bit more exhausting, but I did not have to think about IF I was able to take the stairs. At home I really have to think about if it’s really necessary to go upstairs or downstairs because I know there’s only a limited amount of times I can manage them.
After today I was barely able to walk up the stairs which made me feel so horrible and helpless. I know that it’s normal and that I have to give myself time to adjust and to heal…I know that I will have to deal with exhaustion for the time being. It’s tough…but I cried for a while and now I am able to see the positives again. It’s amazing how far I have come already and I will continue to improve. A few months back there was absolutely no chance for me to reach the top of these (or any) stairs and the time will come when I will walk them as casually as before…I just have to keep fighting and with this sentiment I will go to sleep now. Tomorrow will be a new day, new challenges, new struggles and new successes.
Saturday, 30.06.2018 – Relaxing
Today was the day I was trying to allow myself to just go with the flow and do what I was feeling like doing. So I spent the whole morning figuring out how to take a shower at home and taking my time figuring out my new hair. I went to the hairdresser the day before going home because I wanted to go home as a new me. Today I spent the whole morning finding out how to blow dry, style and just basically handle my new haircut and writing it down now it kind of feels like a metaphor for my situation.
I have to give myself time, to allow myself to adjust and I will figure it out eventually. It really isn’t easy having to accept that I get exhausted so quickly, that I have to handle my inner resources so carefully, to the point where I have to work out in advance how many times I will be able to walk the stairs a day.
Trying out different hairstyles
But I can still remember that the transition from the hospital to the rehab facility was hard as well and I adjusted too. So I am trying to focus on the positives and I am trying to allow myself to just do the things I want to do for once after six months of not being at home, six months of living the hospital life.
The struggle/realization of the day is definitely the driving issue. I love driving, the car is the place where I feel myself when I am singing along to my music as loudly as I can. It’s the place where I am able to release energy and emotion and of course it’s just very very annoying not being able to just jump into the car and get places. But with this issue as well I am trying to keep in mind that it will come back eventually. After my next stay at the rehab facility in autumn/winter I might already be able to drive and over the summer I will try to enjoy that my family and friends will act as my personal uber drivers. 😉
Sunday, 01.07.2018 – Scary Symptoms
Today I tried to let the Sunday be a proper Sunday. Up until noon I just relaxed, drank tea on the terrace and just enjoyed having to do nothing. In the early afternoon I changed location to a good friend of mine and I continued to just relax. I realized and I really noticed that it’s something I need as well. I have to find a healthy balance of doing enough, being out and about a little bit but also allowing myself to do nothing. I need time to wind down as well, I just have to accept that I can’t do everything at once and that I need resting because giving 200% for three days and then being completely exhausted and not able to do anything anymore would frustrate me even more than accepting that I have to take everything a little bit slower.
I really felt good the majority of the day but in the early evening things changed…I was feeling nauseous and my feet and legs started to act out like crazy. That’s when I decided that it was time to go home and over the whole evening it got worse. Now I am sitting in my bed and I am kind of scared to be honest. The numbness got worse as well and I am having flashbacks to when this whole sh*t first started. But I am trying to stay calm and keep telling myself that it’s just the exhaustion and the excitement over being at home and with my friends. Also, I walked barefoot the whole day, something I did not do at all over the past six months…maybe that stimulated my muscles and nerves in a whole new way and that’s what’s making them act out.
I am not going to lie, I am really worried that it might mean something bad, but I am trying to keep telling myself that the probability that it’s the transition from rehab to home that’s making everything go a little bit crazy is far higher than the probability that there is something wrong again. Also, I am having an appointment with my neurologist tomorrow, the one who finally knew what was going on in January. I trust him and I will talk about everything with him tomorrow and I’m sure I will be comforted after this visit. It’s only 9pm, but I will be going to sleep now, tomorrow is the start of the first full week at home and I am positive that I will adjust more and more with each day.
Monday, 02.07.2018 – Seeing My Neurologist/Psychiatrist
Today I had my first important appointment. I visited my doctor, more precisely my trusted psychiatrist/neurologist who has known me since I was 14 years old and who finally figured out what was going on back in January. I really like him and I was actually kind of nervous before seeing him. He was pretty impressed when he saw me standing in front of him. When he saw me walking a few steps his words were that it could be better. But I know that, that’s why I’m going back to rehab in autumn and that’s why I have to continue with therapies.
The valuable thing I am taking away from this appointment is that he as well said that I look like I’m doing good mentally. This doctor has seen me at my worst over the past ten years and he has never really seen me doing well. Having his confirmation that I seem stable and better than ever mentally means so much to me. Writing this down I really am overwhelmed with emotions. The past six months have been hard. But they have shown me that I can manage anything, that it’s worth fighting for my goals and that I am strong enough to cope with anything that comes my way.
Today, I am going to sleep with new positive vibes and tomorrow will be a new day full of appointments and things to do.
Tuesday, 03.07.2018 – Appointments & Relaxing
I spent the whole morning running errands and keeping appointments. I visited my general practitioner to run a few blood tests and inform him about everything that has happened the past six months. Then I had to settle everything for my therapies and my next stay in the rehab facility with my insurance company. After that I finally visited the place where I will do my outpatient therapies over the summer until I’m going back to rehab. It seemed nice and I have my first proper therapy appointment on Friday.
Redcurrent Meringue Cake
At home I continued to sort out my stuff (wardrobe, books, everything basically) and I baked my first cake since sometime in autumn. I love baking and it felt good to create something delicious. For those who are interested, it was a redcurrent meringue cake with redcurrents from our own garden. I have not tasted it yet but I will report tomorrow how well I did. 🙂
When I was done with the cake I did not really know what to do for the rest of the afternoon and I was actually kind of exhausted. So for the first time I allowed myself to just relax and do nothing for a few hours at home. It’s really hard for me. I feel like I should be doing something all the time, either train specifically or do chores where I train to get back into an everyday life. I really have to keep telling myself that an everyday life includes relaxing and doing stuff for fun as well. So I really just sat around, caught up with people via social media and phone, and as an evening activity I listened to music and continued to work on my puzzle until it was time to go to sleep.
Wednesday, 04.07.2018 – Visiting My Hospital Unit
Today was a crazy and emotional day. I decided that I wanted to visit the neurological unit I stayed at for ten weeks. I knew that I wanted to visit them after rehab the day I was leaving because I really felt as comfortable as it was possible during my stay there. That’s actually the reason I baked the cake yesterday, I wanted to bring them something to say thank you. The visit alone was not the only reason why my day was so crazy. I decided that I wanted to go there myself and since I am not able to drive yet I got there with public transport.
Ready for my first adventure and an unsucsessful attempt to take a picture with my dog Lola
I knew that I would be able to do it but I also knew that it would be a challenge. When the train arrived and I saw the huge step I had to take I panicked for a second. But I managed to get onto the train and I managed to change to the bus that brought me to the hospital. When I stood in front of the hospital I knew that it would definitely get very emotional. I took a deep breath and went inside. I went down the aisle on the first floor right to the point where my unit is located on the second floor and I took the stairs. The exact stairs I trained with my physical therapist back in April. A few steps before I reached the top I spotted my therapist and that’s when my emotions went crazy.
I was so proud to stand there in my current physical condition which is so so much better than when I left. My whole body started to tingle and I had to sit down because I was shaking and my legs started to tremble. I was completely overwhelmed with emotions, going through the unit I mostly experienced with the view from a wheelchair. Everything came back at once, the fear, doubts and worries but also the improvements I made and the experiences I went through that changed my life and myself. Yes, it was a very emotional situation but the people were so nice and of course they were happy to see me doing so much better. I will never ever find the words to thank them enough for everything they have done for me.
Thursday, 06.07.2018 – Chilling At The Pool
It’s crazy that with today, I have spent a whole week at home. So much happened and it feels like yesterday that I had therapies at the rehab facility. Today I decided to check out our local outdoor swimming pool. At rehab we went swimming a few times during physical therapy and it felt so good because in the water I almost forget about my
Chilling at the local pool with my boyfriend
physical limitations. Also, swimming is a great training. So I went there with my boyfriend and we spent a really nice afternoon at the pool and after that we went to eat pizza and ice cream, walked through town a little bit and now I’m sitting at home and I am completely exhausted. I think I’ll go to sleep at 9pm to be fit for my first outpatient therapy session tomorrow at 7:30am.
My first week at home was good. It was very hard in the beginning and very emotional as well. But I am adjusting slowly and my goal for the summer is to enjoy everything as much as possible and to just do as much as possible, see friends and family and just enjoy life despite my physical condition. I will continue to share my specific experiences and thoughts about GBS and also just share my journey. I hope you enjoyed reading this diary-style post…it was something else for once but I thought it might be a good idea to record and capture my first week at home, for you guys and for myself.