With payback on payback during flare-ups and who knows what, I could hardly leave my bed.
One stage, I was having 2 sets of 10 hour-ish sleeps a day. Even I wasn’t really sleeping, I couldn’t move from sleep paralysis followed by disabling fatigue. Then, it shifted to reverse day and night with more than half day of disturbed sleep with wired and vivid dreams, and I’m probably conscious half of the sleep. My confused mind cannot tell which part are dreams and which are real. Then, I realised that more than half day of disturbed sleep was actually getting shorter and shorter.
I was thinking that MRI had disturbed my system somehow as the payback I was getting is different from usual pattern.
While I was awake, I still needed to lie horizontally. Resting for me is to lie in a dark room with eyes closed for hours and hours. (Oh, yes. This is very exciting…) When someone sees me like this, they think I’m sleeping. But sleep doesn’t come easy for me even I’m feeling exhausted. I need to close my eyes to preserve energy. Just keeping eyes open consume lots of energy out of me. Unlike common conception of people with ME/CFS takes nap all the time, I just cannot take nap.
While I was eating or doing dishes, I had to drop everything and lie flat. Obviously, my energy reserve was extremely low. On my good day, I could manage 1.5 hour out of bed at a time as long as I am not sitting upright all the time. On my bad day, I would be lucky if I could manage 5 minutes out of bed at a time. And during really bad hours, I cannot even lift my head, arm or even cannot turn my body.
While I lie there, I am feeling slowly moving sensations of dull pains in bones and muscles, pins & needles, cramps & spasm, slight jerking in knee and ankle, difficult breathing, as if heavy fatigue is crushing my lungs and compressing my legs and arms down on my bed. Listening to tinnitus (metallic ear ringing), feeling nystagmus (uncontrollable rapid eye movement/jerking), I wonder how many more years do I have to exist like this…
Not only the bad physical condition, but also feeling lonely in isolation was pushing me to the verge of depression. I tried not to think about the hardships I am facing, but tried to focus on something I could look forward to. And what would it be? I had to push away the negative thoughts that my life is so pathetic and there is nothing really I could look forward to.
What can I look forward to? If I have to be positive, that would be the doctor’s appointment.
Have you heard that we need to see at least three people a day outside of own family to keep our mind sane? It explains the reason why isolated, disabled and sick people get severe depression and lose their will to live.
So I was hoping that I could regain enough energy and strength to go out for the doctor’s appointment on Wednesday, so that I could look at people and interact with some. It will help me from slipping into depression.
I kept telling myself, “Hanging in there, Rachel! You will get to see people in few days, and you will feel little better from it. Just don’t slip into depression now! You have strong mind. You can fight.”
Then, evil Rachel gains power and says, “Look at yourself! How pathetic your life is now. Why do you even try hanging in there? There is no difference in the world if you exist or not. Nobody cares if you live or die. Nobody notice if you are gone.”
So brave Rachel had to stand up and push evil Rachel back, “Don’t listen to the evil Rachel! You will be fine. Just little at a time, you can do it. Remember, the toughest time always passes and you will feel you can keep hanging in there again. Just don’t allow yourself to slip into depression. Keep hanging in there and something will come to you for rescue one day.”
When I’m in such bad state, it feels like the mental effort of staying positive itself takes up huge amount of energy out from my body. Sometimes, I need to hear it from someone else that I will be okay one day, so that I could keep hanging in there. Then, one of my friends sent me a video message and told me that I was courageous and saluted me. Suddenly, tears started coming out. It meant a lot to me, especially because it came from the person who was living the similar life with me.
Back to the appointment day…
Frustrating part was…, I could hardly get up from my bed. Although I needed to go out for my mental wellbeing, it was a serious question if I could make it physically. I worked on willpower and telling myself that I would be better enough to go out. Since set of symptoms and severity changes all the time, it was possible that I would feel quite okay in two days time. So I continued resting seriously. To tell the truth, there was nothing else I could do.
I wished I had someone to help me going out. However, if I had someone helping me, the necessity of seeing my doctor fortnightly wouldn’t be so important…
On Wednesday, the appointment day, I receiveda postcard from Elizabeth. Since I read her blog “Up!” earlier of the day, I felt it was a special cheer from her. The blog was about choosing not giving in to her disability and public concept of being disabled. She chose what she was going to do despite of all the odds against her and knowing what degree of payback she was going to get, and knowing there was a chance that her challenge could actually kill her. It was one-time challenge to conquer her frustration. She beat her odds and completed her wheelchair race training without support of her partner, oxygen, or essential drink for her condition. After reading her blog and receiving the postcard from her on the day of doctor’s appointment, I was miraculously feeling that I could get through the day.
I left home early enough to go to post office, Chemist and do the first load of food & grocery shopping before the doctor’s appointment.
A lady at post office counter was extremely nice to me. It made me feel good. At the same time, the way she talked to me as if I was a 10 year old girl irritated me. I cannot blame her, though. When I was able person, people in wheelchair made me nervous. I wanted to help them, and I feared that I would offend them if I offer some help when it was not needed. Now, I’m a newish wheelchair user, and am still afraid of asking for help… And people are thinking I’d prefer to be independent without their help.
Elizabeth’s blog empowered me and I was pushing my wheelchair faster than usual without thinking. (It was still slower than walking, though.) When I got to the Chemist, I realised that I pushed beyond my limit already. My arms and hands were shaking, I felt cramps and spasm were coming to my left hand and gripping onto the handle was giving me pain, I could feel nystagmus (uncontrollable rapid eye movement), and photophobia was irritating my eyes. I was also having trouble with breathing, and tried asthma reliever. The sensation of heavy fatigue was slowly overpowering me. These symptoms were not serious. They just gave me warning that I had to think and pace myself carefully.
Elizabeth told me later that I missed a small print on her blog, “Do not try this at home.” It actually made me laugh. But she must know that it made me feel good, and she shouldn’t feel guilty of other people trying to live once in a while because she motivated them. I could say she inspired me, but I shouldn’t use the word “inspirational” because she hates being called it. In a way, I understand and agree. She (and I) would rather live a normal life than being called inspirational and being ignored the needs of essential help & support. At least, it is my personal translation of some of her posts.
While I was waiting for my prescriptions, the friendly Chemist staff chatted with me. That was all I needed to get out from the slide to depression.
Then, I did a basketful of non-perishable food & grocery shopping at the supermarket. After the doctor’s appointment, I came back for a basketful of cold and frozen food. On this day, the check out staff was little more helpful than last time. They helped me to put some items into a bag I hang at back of my wheelchair, and put another bag on my lap.
I was relieved that I finally got enough food for my dogs and for myself.
At the end of the day, I was feeling much better despite of physical exhaustion. I wish I could do this more often with someone’s help. But I should be grateful that I can still manage to do it by myself. It feels like my condition is still slowly progressing. If it is true, I will lose ability of doing shopping by myself, and I don’t know what happens to me when the time comes. At the same time, I hope this is just a middle of long term flare up, and one day, I will get some ability back…
At least I know that it is no use of worrying about future. Anything could happen between today and next week. I just take one day at a time, and keep hoping that something will come to me before it is too late.