When I was first hospitalized for Guillain Barre Syndrome I received immunoglobulin treatment for five days. At this point in time the paralyzation was mostly from the waist down and although I couldn't feel my arms, I could still move them. On the third treatment the entire right side of my body lost all feeling and movement from my head to my toes. I had been in the hospital alone for six days and it was the first tear I shed. It was such a massively uncomfortable feeling that it really scared me and I was worried I was having a stroke. They rushed my doctor down and he felt it was unrelated but I asked him to stop the treatment. The doctor honored my request to pause the treatment and within the next hour I could move the right side of my face again and the intense loss of feeling had dissipated. They started the treatment at a much slower rate and it didn't happen again. This was my first official hemiplegic migraine and I have had them ever since. My neurologist does think that as I heal from Guillain Barre that I will have less episodes but it seems like I have a family history of them so we can't be sure. Hemiplegic migraines are just one of the health issues I have to deal with now and I feel lucky I only average one per month but it is one of those things that is completely unpredictable so there is a subconscious waiting, it's like I know I have to be prepared for it to happen at any time and that can cast doubts on making plans and commitments.
I had never heard of hemiplegic migraines before and have only met one other person with them since. A hemiplegic migraine is considered a migraine variant and may cause no headache at all. The word hemiplegic simply means paralysis on one side of the body. A person with hemiplegic migraine will experience a temporary weakness on one side of their body as part of their migraine attack. This can involve the face, arm or leg and be accompanied by numbness, or pins and needles. The person may experience speech difficulties, vision problems, temporary blindness, or confusion. The weakness can last one to 24 hours. For me, I generally lose feeling (numbness and severe weakness) in an arm or a leg for one to four hours. This has happened in my arm while driving several times, it happened to my leg one day on my way out the door and I had to cancel my client because I couldn't walk, it's happened in my leg while walking, going downstairs, and driving. After I have an "episode" I am hit with severe fatigue that is unbearable so I tend to go straight to bed for the rest of the day. The evening of these events I always have a "seizure". I am putting that in quotes because that is what it looks like but sometimes I remain conscious the whole time so my doctors do not think it is a seizure but that it is a variant of the hemiplegic migraine. In a split second my body gets weak and starts convulsing as I start to black out and drop to the floor. My worst experience was when it happened in the kitchen while I had a knife in my hand. I did lose consciousness that time and when I opened my eyes, my dog was licking the knife that I had dropped. It was a little terrifying to think of how badly that fall could have gone.
Last night this happened while I was in the shower. As I laid on the shower floor I was patient. I just waited to regain my strength until I could sit up. I got out of the shower, grabbed a towel and sat on the floor for another ten minutes. I still felt like I was being patient with myself but I started feeling a little disappointed in my body. When I regained a little more strength, I sat on a chair and could see my reflection in the glass of the shower door. As I looked at my reflection, I looked sick, weak, curled over, and my patience disappeared and was replaced by feelings of lonesomeness. I started having feelings of unworthiness. I feel like I am not worthy of being loved because I am sick. My knowledge brain knows that is not true but some days I can hear it lurking around my emotional brain. I think this comes from my parents getting divorced when my dad was severely ill and that experience planted a seed that "in sickness and in health" doesn't actually exist. I also think this thought process occurs in a great deal of other people that are having chronic health issues.
There is this completely unrealistic expectation that we have to be perfect to be loved but perfection doesn't even exist. We are all flawed, in sickness and in health, but we are still lovable - flaws and all. I guess in writing this I am trying to remind myself and others that you are perfect as you are in this moment, whether you are healthy or not. You don't need to do more, be more, have more, or be perfectly healthy in order to be loved. You deserve it here and now! I realize I have completely changed the subject from hemiplegic migraines to thoughts on perfection and love but I think it is important for other people to understand the emotional affect a health episode can have. It's never as simple as having a health condition that causes physical pain and discomfort, being ill will always bring up a whole lot of emotional baggage too.
Health problems penetrate through mind, body, and spirit and I don't think enough people acknowledge or talk about it so I'm hoping this will bring more compassion when someone shares their story or ailments with you. It is important to understand that health problems can affect people's self image and self confidence too. The ailments can almost seem minor compared to the "sick" thoughts that may be feeding their mind. All in all, I just want everyone to love and be loved! In a perfect world we could all be healthy but for millions of people, that is not the case. I have been holding my thoughts and stories about my health inside me for too long and simply want to share in an effort to help others on their path. If I can make one person feel like they are not alone in their struggles or help a loved one handle a health crisis better, then sharing will be worth how vulnerable it makes me feel to open up on these topics! In sickness and in health, I love you.