I found myself sitting on the toilet, watching my left hand intently. I have had odd spells of tremors for years now, but this, this was somehow different. It wasn’t my entire hand that was moving, it was just my fingers, almost as though they were playing an invisible piano, apart from my middle finger, it alone was moving side to side frantically searching. My tremors have returned, visible to the world, not hidden and slight, but in a fashion where the slightest glance can see. My hand was the last part of me to think that it was funny. For the past week, my spine and legs have been dancing around like a stringed puppet in the hands of a child. I was sat there, staring at the last thing that I believed that I still had total control over, proving once again that I was wrong.
When my health took its major dip, the one that led to my being give chemo, to kill off my immune system, in the hope that when it kicked back in, it might not be quite so aggressive towards my body, tremors were the most visible symptom I had. I shook like a jelly on a plate. Like now, and as it has been for 13 years, I have little control over my core. Somewhere in my spine, around about my waistline, there is a nerve that enjoys jumping. The result is that I sort of shudder and quiver. Back then it was constant and there was nothing I could do about it. Now, well, it comes and goes, right now, clearly it’s here. I have learnt tricks, like sitting in the corner of the settee, with my back pushed back into the cushions, so that the tremor is limited. If it is my hands that I want still, well I can either, which looks kind of silly, spread them tightly into a star, or, turn all my fingers in, so that my nails rest on my thumbs, somewhat like a lose clench. Of course, the one place where I can stop nearly all of them is lying flat on my back in bed. It’s easy then to pin everything in a way that makes any movement both difficult, and unlikely. To date, the one thing I can’t hide is when my legs start to jump. Even in bed, that one is visible and according to Adam, keeps him awake. Tremors may not hurt, but when your body is in constant motion, and you’re a poor traveller like me, the side-effect of seasickness is always around.
Why I am suddenly in constant motion, I have no idea. Stupidly yesterday even Adam asked, “Do you know what triggered it?” If I did, don’t you think that I would avoid it? What I do like, is when it is at its most violent, Adam has decided that it is up to him, to provide stability. I like it, because, he wraps his arms around me and doesn’t let go. He is clearly scared that I am going to fall, or that I will career into things. At times, he offers to hold me, even when I am sat down. From the look on his face, I can tell that it appears as though I am in pain from it, but I’m not. The closest to pain that my tremors cause really doesn’t come from them, but from my stomach or a spasm somewhere, combined with badly placed tremors, well, comfort is far away. It goes without saying, that I drop more things, send more cigarettes flying through the air, and gather bruises, as my limbs slam into furniture that of course, I know is there, but they have clearly forgotten.
Although I have seen tremors listed as a symptom of PRMS, in fact, all forms of MS, I haven’t really seen that many people writing about them, actually, I haven’t seen any. To the outside world, those who know little about us, it is a symptom more often associated with Parkinsons, what many don’t realise, is the two conditions hold a lot of similarities. On days like today, even I wonder, but as I already know the truth, I just quietly shake and wait in hope that tomorrow it will be gone. I remember years ago, when I was still actually taking the bus to work, so that says it has to be about 14 years ago now, that having a tremor was useful. I had grown used to the fact that my condition was invisible, suddenly people could see there was something wrong. I didn’t care what condition they thought I had, as long as someone was kind enough to offer me a seat. Back then they tried sending me to physio, in the belief that if I could strengthen my core muscles, then I would stop dancing around. Like almost everything I tried, it didn’t work. It did help to improve my stomachs flatness, but they weren’t actually too bad before they started. What I would give for a flat stomach these days, well, I’d give almost anything, but I bet, I’d still be trembling.
One of the side effects of tremors, like this, is the energy that they use. I am always more tired, which isn’t really surprising, as I am never still. What I’m not so sure about, is why my speech always seems to dip with it as well? I know that could have something to do with the fatigue, but even early in the day, I seem to stutter more and be less able in my conversation. I would almost say, that I develop a tremor in my brain and in my vocal cords, as mad as that might sound. Whatever is behind it, the result is a stuttering, jumping, quivering mess, otherwise know as my life.
Please read my blog from 2 years ago today – 20/03/2014 – What is that?
I headed for bed last night not even sure if I was going to make the short journey from kitchen to bedroom. Adam was making himself something to eat and I made a point of covering up the pain I was in as I knew he would just head off into a panic, the pain was in the back of my right lung and it was agony. Over the hour before I went to bed I had as always just been watching TV sat on the settee, the pain started just as a dull ache but I built and built, by the time I went to say good night to Adam, every step I was taking caused the pain to peak from the shock-wave of my foot just hitting the floor. I knew that I had my stash of tablet on the chest of draws by my bed and that was the only thought that kept me going as I tried to take off my dressing gown and hang……
Oh for the love of dancing legs even when you are a sleep l m experiencing the same at moment. Tiring! I don t know what drug calms them and actually works? None I think and I ve tried loads.
I have MS and believe after reading your blog PRMS…not secondary progressive as DX now.
I think your writing speaks volumes about ms, I ve had it 20 years and never read a blog like yours, yes it mirrors my ms and some of my life (alot actually). Thank you for all the eork you put in each day and a book would be brilliant… How you do that I don’t know. Lots of (((( hugs)))) x
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Thank you Jane. I keep hearing that, the no one’s read a blog like mine. What I don’t get is why? As I also hear that I mirror so many lives and so many peoples experiences with MS. Maybe, it’s because I’m not scared to write all of the truth and I don’t try to sound like I’ve read a doctors manual, I’m not sure. What I am sure of, is that it’s hearing that, that keeps me going as I know that then, I’m helping people, as nothing helps more than knowing your not alone.
Like you, I’ve swallowed my way through the drugs manual and no, nothing seems to actually work on the dancing legs, or any of the other tremors. It’s not surprising really, as to stop it, you’d have to shut down the nerve. Doing that, might lead to a lot of problems. I wish, the pharmaceutical companies, would also learn to be honest. Mind you, they’d lose money if they did.
I wish I could help you more, take care (((Hugs)))
Oh you ve helped and made chuckle at the end about losing pharmaceuticals losing money if they were honest. It is the honesty of your blog that stands out. I could not write it out there like you, but associate so much
I could natter to you and laugh do much about experience we have. I share some of mine but if I did not laugh I d cry (which I do). Your blog stands out because of the integrity it is written
(((Hugs))) x again
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Both laughter and tears are great medicines and totally free 😀
I too have tremors in every part of my body. Extremities are my worst along with my speech especially when upset. I hate going out in public. People look at me as if I’m drunk. I call the leg tremors my Elvis walk. I try to be amused by it but I feel like I need a sign around my neck.
You made me think about why I am more tired at times. I never associated my tremors with the energy it uses! Makes perfect sense! I am so thankful to have met you right after I was diagnosed. There’s no better way to find out what is happening to our bodies than from a person who has MS. The medical field in over 100yrs can’t figure it out and find a cure. So how are they to know and tell me about this. Thank you and God for being here and your abilities to write without holding anything back.
Many, many gentle hugs and well wishes.
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I’m afraid that cure is well out of my range of abilities. It’s odd how we see our tremors when it comes to going out, so differently. Having something that was visible, was a sudden and helpful event as I used public transport daily. I also felt that the fact my hands visibly shook, meant people stopped seeing a drunk and started seeing someone who was ill. I guess we all see something differently. Don’t let it stop you going out, that is something you need to do as much as you can, for as long as you can. (((Hugs)))
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I guess being new at this and remembering how I was has made this so hard for me. I’ve always said and still feel inside, ” I can understand and will help those who need me but in myself I don’t allow any weakness.” I think that may stem from my abusive ex. He was always accusing me of being weak and lazy. I now know that the stress of him in my life with a combination of MS undiagnosed. Is what was behind it but I swore I would never be accused of being weak and lazy again. Now I have no choice but to come to terms with my body and mind. Not an easy thing for me. Just like living alone and doing all the cleaning and maintenance that entails. I hurt myself badly a week ago affecting my right arm and shoulder. Now I desperately need help with daily stuff and I have no one to help me. I have no choice but to accept I have become weak. I know it’s because I’m am sick and now feel stupid as well for being stubborn..😕
There isn’t a single thing you have just said, that I and I expect everyone with MS feels. Actually, I suspect, that the majority of people with a chronic illness put’s themselves down, pushes themselves past their limits and feels stupid for doing so. It’s called being ill. Don’t be so hard on yourself! I doubt you would on anyone else. Think about it 😉
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It’s true and you’re right. I would never treat anyone the way I treat myself. I need therapy to accept this new me. I’ve been looking greatly for a physiatrist who will accept my ins. I’ve had no luck in a year. Its getting more desperate for me. Even just last night it was touch and go. Thank you for understanding me and my stupid brain.
Try writing, it honestly is the best therapy in the world. It has kept me sane in over the past few years. If it can do it for me, I’m sure it can do it for you too. Don’t give in, there is still too much to live for, trust me (((Hugs)))
I’m honestly going to try. Thank you Pamela for understanding me, accepting me when I can’t seem to accept myself. You do more for me and help than any Dr has. Been crying more this week and I will for a few more I feel. I have no other choice right now but work out what I thought I did a year ago. Accepting what I can’t change. Courage to change what I can. Wisdom to know the difference. If there is one prayer in the whole bible that means anything to me this is it.
Thank you for caring and being a friend.
Just remember, you can do it 🙂
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This is very interesting. I have the same type of finger movements sometimes, but I get it more often in my toes.
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