Recently I have been reading many blogs written by others who also live with chronic illness. In some of these posts, chronically ill bloggers have been sharing their stories of living with their worst symptoms, and as a result, I thought that I would share my own personal story of life with trembling legs caused by a neurological condition.
If someone had asked me a few years ago what was my worst symptom, then I undoubtedly would have replied with “the constant and unrelenting dizziness.” The dizziness leaves me with the feeling that my entire perception of the world was off-balance, and at other times my world was spinning around me, leaving me feeling disoriented and sick. The dizziness can be so severe that when I am out in the big and open world, I feel unsafe and vulnerable as well as the feelings of unsteadiness that I need somebody with me to hold onto due to the fear of falling over.
Now, however, I would have to admit that the trembling in the legs has become my most troublesome symptom. Like the dizziness, the trembling is constant, unrelenting and has become life-altering. The severity of it does vary from day-to-day, sometimes minute by minute.
Life has become increasingly unpredictable.
This morning, I woke up at around 8.30. Although I was awake, when I attempted to get out of bed, I was not able to because the trembling was so severe that I was incapable of standing or even to walk and therefore had to remain in bed until the trembling subsided. It did after half an hour or so and was able to get up and start the day ahead. This is unfortunately not uncommon, and recently it has become an increasingly familiar part of my morning routine; a rest from my broken body even before rising from bed.
It doesn’t just affect me in the mornings, however, suddenly finding my legs being uncooperative and too weak to do their job can happen at any time of the day. Many times I have found myself abruptly crashing to the floor as the shakiness won the battle, leaving my legs giving way.
[Tweet “Life has become increasingly unpredictable.”]
Of course, as someone living with a chronic illness, the trembling of the legs is not the only symptom that I have to contend with – of course, the dizziness is still a constant feature in my life and am also dealing with chronic pain which at times is excruciating. So what makes the trembling my worst symptom?
It’s because that out of all my symptoms the trembling is the symptom that I have no treatment for, and therefore no respite from the unrelenting shakiness of my legs. Even though the dizziness is constant, I do have periods of breaks from the severe bouts, and when the volume is turned down on it, then I am able to find ways to distract myself from the feeling of the earth being tilted on its axis.
It’s the same with the neuropathic pain caused by my neurological condition. Yes, for the most part, the pain feels like hell, but there are some small periods of time when the pain is bearable and am able to tolerate living side by side with it. Also, the dizziness and neuropathic pain can be treated with medications, although they seem to be merely a band-aid which can easily be ripped off instead of a cure. But at least there is some comfort in knowing there is a treatment plan for these symptoms; for the trembling however there does not seem to be anything to treat this particular symptom, and not even distraction techniques help to take my mind off the sensation.
The trembling, dizziness, pain and the other symptoms that make up the neurological condition I live with does get me down, but through all the trials and tribulations that they cause I try to focus on all of the positives in my life. Such as the amazing support that my friends and family show me every day. Living with chronic illness can be messy and complicated, but I choose to believe that there are still plenty of silver linings to be found.
[Tweet “Living with chronic illness can be complicated, but silver linings can still be found. “]
So, tell me what is the worst symptom that you live with?
Feel free to comment below!
Comments
Numbness. It’s everywhere but my hands are the worst. I have no tactical feeling anymore. Can’t feel if my hair is wet or damp, fabric is silk or cotton but worse I can’t feel the softness of my daughters skin when I hold her hand.
Beautiful post thanks for sharing x
The joy it would bring me to be able to see the way I once could. To navigate in the dark without assistance. To drive my car at night. Small things, big impact on my independence. Sometimes I feel like I’m looking at the world through cling wrap.
I think my paralysis down my right arm & leg is my worst symptom at the moment but oh the dizziness and what I refer to my jumping legs has to be right up the top of most frustrating particularly because it really effects my sleeping. ?
I don’t know how this feels personally but I know what it feels like and looks like to see a loved one experience the same symptoms which also out of all the crazy, weird stuff that she experiences the shaking legs and arms is the worst and has effected her life the most. You are not alone and neither is my daughter, that’s one thing I’ve learnt since I started my blog and it brings me some comfort, hope it does for u too xxxx
Thank you for your honest post! The more we share, the more others can understand xx
I also struggle with severe dizziness and fatigue due to my Lyme Disease. This is such a beautiful post. Thank you for sharing. xo
Appreciate reading this. For me right now it’s the pain. I’ve got the dizziness too, and near constant nausea and shakiness that comes and goes, but the pain never stops. It’s in my joints and worst in my knees, hips, hands, ankles and elbows. Especially the knees and hips. When I wake up it’s “just” a dull ache, but within half an hour my joints start burning. The meds I’d been taking for the pain I don’t think are helping anymore. It gives me trouble walking, driving, really doing anything and nothing stops it. I’ve got 3 kids to take care of, even when the pain is too much. I just wish I could hold them every time they asked me to. That I could play with them.
Definitely the dizziness/vertigo. I hate the feeling of lack of control with it. :/ This is a beautifully honest post. Look forward to reading more of yours. x
My worst symptom is definitely fatigue. Most people who know my long list of symptoms would probably be surprised that fatigue is the thing I struggle with the most! I think I could cope with my other symptoms better if I had more energy! Thanks for sharing your experience!