12months post onset and improving

[Zozo87]

I will be at the 1 year mark on the 24th Jan and only these past 4 weeks have I seen a great improvement in my energy and capacity for walking. I have felt other improvements for 8 weeks, less headaches/migraines and less need for long sensory deprivation rests during the day/afternoon. I feel hopeful, my day to day life at home looked almost normal and felt better than I have all 2022. But in time I will discover is it only fleeting? Or am I recovering and all I can do it continue to balance my energy, get adequate sleep, not overdo it take each day as it comes. As I write this my legs are aching, but relative to my past 12months this is minor, cannot go unsaid for transparency. The lows are so low but the highs are so promising. Fingers crossed

Has anyone found that while some improvements take so so long day by day others come on quickly? In this case over a month

[WesleyBuck]

for me, some symptoms come and go (ms hug, night sweats, etc) while some remain contant (tremor). Sometimes every day is the same, and sometimes I get a curveball. It’s like trying to predict the weather!

[Batty1]

Thats great news

[BlueSkies1]

Hi there!

I am so excited for you that improvements are on their way! I think these improvements are so important because they give us hope and a will to keep working towards recovery. And yes, some come easy and some seem to linger. Overall, I think the path is soooo slow that things seem to be taking forever. My kids encouraged me to turn around and look back upon where I was in months prior. That was often the only way I could see improvements, and suddenly the small changes actually looked like miracles!

I really understand your worries about recovery-will these improvements last? Is this just a bad joke being played by my body and tomorrow it will all return? Can I have hope? I felt all of these too.

First, I want you to know that I have recovered, over the past 18 months, to about 80% of former me, which feels incredible. I am back at work and also able to know exactly how to care for myself if symptoms arise. So you can have hope!

Second, I was told by the neuropsychologist who helped me to not worry or wonder too much about the future, as that looking for symptoms mixed with anxiety about the future can be a deadly mix that focuses our brain back onto what is wrong. (Thus creating the worry loop that probably feeds FND). We need to keep our brain away from scanning for symptoms, keep it focused on the present, and practice mindfulness til you’re sick of it!😂 This allows it to return to healthy functioning.

Third, I found that my greatest leaps in recovery happened when I did something that FND had previously told me was impossible. These challenges need to not overwhelm us, but if they gently push the limits of what we think we are capable of I think they lead to growth. For example, I remember walking into a grocery store alone for the first time since becoming bedridden with FND. I had backup support out in the car, used earplugs for noise, and only bought one item. I was scared but it also felt possible. Fast forward one year and I can almost do the whole family mega shop on my own! Set yourself up for success but don’t be afraid of a little anxiety.😊

Lastly, What I have found and heard from others including professionals, is that the road to recovery is a jagged uphill climb. This image was always very helpful to me during the downtimes. I could become very frustrated and depressed during a backslide in recovery, so I hope that this helps you to stay positive and have hope during those times. They do become less and less pronounced and invasive until they are rarely experienced (on my journey anyway).

Good luck! Keep on trucking!! You are doing great!!! 😊

[Lorinda1 in reply to BlueSkies1]

I relate so much to what you are saying. My son has commented that “Mom had no good days before. “ (For 9 months) I’ve had FND for two years now. When I went to the store for the first time by myself it was so extraordinary. I still feel that way as I still have days i dont drive or need to go to bed. It’s less and less frequent tho. My life is definitely livable now. I’m pretty happy most of the time.

[Orge]

Yes luv I get that feeling sometimes but then bang I relapse again and again gs. There is hope luv but it's literally a waiting game, I hope this yr brings your health bck up to speed as normal as ya can be but never falter xx

[Zozo87]

all of your responses are so so helpful and I feel hopeful reading them. The practical advice too is what I need so thank you. It is certainly an up and down battle I will keep this posted on my progress I love to hear how others are recovering too!

Somethings I’ve been told (and I’m holding onto to see if they are true)

- your body is a battery thats charged by movement and rest

-give your brain a rest. Overcoming pain/fatigue can be easier if you stop reading, taking in new information and decision making. Give it a rest and come back to it later (decision making really does trigger symptoms in me and its so frustrating but getting better)