Fightinghard: overcoming

[Fightinghard]

@Alice1 I get it. I’m with you on being careful for sure. It’s a delicate balance.  I’m going to slowly add more and more knowing I may get a spike for a day or so.  I’m scared to say this but I’ve not had terror or fear much lately.  Just restlessness and mild agitation.  Driving and tv is still hard though…
 

i was part of the living with akathisia group on Facebook and he reached out to me to offer support. He had just turned the corner.  So we keep in touch and I’ve ask him questions regularly.  His name is Tom.  Great guy.  It was his second time with aka.  By the way, I left that group.  It’s a difficult group with a lot of misinformation and triggers. 

[Fightinghard]

I haven’t posted in a few weeks so I figure I’ll update.  I’m continuing in the windows and waves pattern.  My windows are days that my symptoms are less intense and some are gone.  The waves are still hard but definitely less than a few months ago with my set back.  
 

current symptoms:

 

insomnia-  I guess this is better according to my fit bit.  Most nights I’m getting a good stretch of Siri maybe 5-7 hours and then I typically fall back to sleep on and off for several more.  My sleep reports say I’m lacking in deep sleep but I am getting some.  Last night was 50 minutes and ideally I’m getting 1-2 hours.  So I’m hopeful. 
early morning wake up-  for me this ranges from 2-4 AM most d days and typically my symptoms spike.  They do tend to calm down in a half hour or so some nights.  I’ve had mornings that are not terrible and almost normal.  But as a whole I get woken up early every day.  I do go to bed early. 9ish each night.  So the night I get 7 hours it’s the 4 am wake up. 

 

Sensitivity to sound, light, movement, touch-  this one is frustrating.  Most are improving and I’ve had days without much of anything but currently I’m struggling with these.  This limits my driving, tv, etc as they are stimulating.  I do drive more more and watch some tv here and there so that’s improvement. Sounds are much better but I am easily startled at times

 

stimulated by people and talking-  this is also much better but still present especially in waves.  I’m rarely having to hide or be by myself any more but this is still a problem at times.  
 

chest tightness, pain, burning/ can’t take as deep breath-  this improved alot.  For about a week all I had was the breath  issue and a little tightness.  Is back today but not nearly as intense. 
 

leg and arm sensitivity-  jumpy weird feeling in my legs and sometimes arms. Also a windows and waves.  A few days not so bad then it comes back.  A little better than a few months ago most days. 
 

agitation-  less intense and less often but still present 

 

restlessness-  not nearly as often. I’m able to sit and eat dinner most nights (early on I couldn’t).  
 

despair/feeling like I’ll cry (but don’t)-seems like it’s slowing down some.  More tolerable most days.  
 

fear-  much less most days if at all. Generally not a problem most days. 
 

pain in shoulders/neck/back-  much better

 

 anxiety- windows and waves for sure.  
 

depression-  not very often. Occasionally

 

 ITs-   Calming down for sure but still there

 

 Thanksgiving was a big challenge.  I went up my families and spent 5 hours talking  and participating.  I felt ok most of the night. They even had music playing in the background.  
 

I’m going to start working again in 2 weeks.  I believe I’d good for my mind to be active versus dwelling on what I feel.  I’ve generally been less active on forums and sites and many days I’m starting to spend time again doing things I enjoy.  The other morning I B was watching the Today show and I genuinely laughed at the exchange. I’m purposely trying to do more positive things with family and people.  Exercise is still part of my routine.  I walk daily more than I have in recent months and a few days a week I do light exercises.  My goal is to increase slowly.  I believe this is helping me. 
 

so I’m progressing with windows and waves.  Its interesting I think in some ways I’m better than I Was before my setback.  But I’m other ways I’m doing worse.  I believe my sensitivity is really my biggest hurdle.  Once that calms down the rest will fall into place.  I definitely am doing as many things as I can but I’m also being smart going slow.  Driving I’m doing short trips everyday to the store or post office or similar. Some days are 2/3 trips.  Its getting easier to do which I’m happy about. I’ll keep moving forward.  17 months on Saturday.  I’m hoping I’m in the 18-24 month group that turns a corner. 

 

[Phoenixmama]

🌞🌞🌞🌞🌞

[Fightinghard]

About exercise-  what I’m finding very interesting is that I can do the same walk about the same pace and my heart rate can be totally different. This morning I took a 19 minute walk and my HR went way up.  The same walk a few days ago not nearly as much of a spike.  I didn’t notice too much walking but I track it in my Fitbit now.  I was more stressed this morning so that may be it.  Anyway, with exercise I’m definitely watching what I do so I don’t overdo it but I’m also trying to do as much as I can.  I’m not in the same shape now as I Was when WD started and even back in May so I have to be aware of that.  Plus my cns is not as resilient.  So slow I will go but again I know the benefits are there of you can do things. I also may push my time to later for my walk.  I usually do 2 walks each day but I’m not sure if I will today. I probably will things seem ok. I just thought I’d share since I’m advocating for exercise.  I may have an uptick in my symptoms but so far that has not happened too much that I can notice. 
 

I hope for good recovery for everyone. 

[Fightinghard]

I thought I’d update. It’s been a few weeks since I last posted things.  Today I’m in a wave that’s reminds me of the early days. Not as intense but still very uncomfortable.  I’m not even sure what the symptoms are to describe.  It’s like I feel very distressed or despair.  Maybe it’s an agitated feeling?    Kind of worked up but not like I have to pace like aka or anything.  Just very uncomfortable. A lot of my sensory things like sound, light, movement, touch are better and my legs don’t feel as ‘buzzy’.  Last night I slept what felt like a deep sleep.  It wake up 2 times but I was back asleep pretty quickly.  I probably slept 7-8 hours but it felt deep.  And I had dreams.  Wherever I’ve had better sleep I seem to have a tough day the next day.  It’s very weird.  It’s like my body needs to adapt to the better sleep?  Who knows but I hope my sleep continues because I know it’s good for healing.  So compared to 5-6 months ago with my setback I’m much better.  I did return to work this past week which was from home. It’s light to start and my boss is very supportive. I believe it will help me long term to have things to focus on again Outside of WD.  Yesterday I went back to my I’l old office and spent an hour or so talking to colleagues.  So I drove About an hour and talked for the same.  Then I had several conference calls in the afternoon.  Also a lot of talking.  I did my full workout and walk (I’m now walking 2-3 times a day for probably over an hour total time plus a work out most days).  I’m running to stores, picking up food, listening to music some days.  Watching tv at times.  So things have improved dramatically from my set back in June and really compared to May and April I’m doing better most of the time.  So while I’m in this wave and it feels like it will never end I see that things are going the right direction. 
 

i was always debating how much to do and how much to hold back. For the most part, I’m trying to live life as best I can.  I’m being smart but I’m not holding back as much.  I’d love to hear others opinions on this.    I did go to a party 2 weeks ago and that went well. After a busy day yesterday I question if I did too much and that’s why I’m in this wave.  I’ll never really know so I’ll keep myself busy and active and just hope things continue to improve over time and that healing happens.   
 

Hope everyone is seeing improvements!  

[Phoenixmama]

☀️☀️☀️☀️☀️💕💕💕💕

[Alice1]

It's my opinion that you might be trying to hard to do more things . That's not a bad thing at all and it will promote healing but that's usually what triggers doing way too much and sets people back hard . Just be ultra aware. For Instance , You're doing all these wonderful things you haven't done in awhile so you'll be incline to do even more. It's like being impatient . Which makes sense because we all just want our lives back asap . Just be super smart about all this .

[Fightinghard]

@Alice1  thanks for your thoughts.  Your probably right.  I have a moment of feeling pretty good and then I push to do more.  Just because it feels good.  I think there’sa fine line between doing things for healing and doing too much.  It’s hard to know sometimes.  I did work out harder yesterday than I have because it felt so good in the moment. Today I’m sitting back, light chores and simple things with my kids.  Small trip to the store, etc. usually by late afternoon I’m a little better.  Evening are usually decent.  
 

I’m encouraged that overall things are lessening and a few symptoms have left (for now).  I’ve found that I’ll get a spike in intensity and then the symptoms tend to reduce and in dune cares leave over time.  What’s funny for me is when I’m in a decent place I tend to blame my problems on my anxiety (long history of GAD).  I’m all in on exposures and cognitive things.  Then I get hit with a day like today and I’m like this is WD… I’m 17 months off.  I’m praying I’m one of the 18-24 month healers. I have been doing better.  When you healed did it happen quickly once you started getting better?  Like you noticed a change and it just got better and better?  I’m sure some waves along the way.  Just curious.  I’ve heard some people wake up one day and all is good. Others gradually improve without realizing it.  
 

i hope you’re doing well. Sorry to see your recent setback with a new symptom.  Hope it calms down soon for you. 

[Fightinghard]

So I decided to get my moderna booster shot today.  So far I’m ok.  Compared to the second shot I’m doing better.  Last time I felt stimulated pretty quickly but within a day or 2 I Was back to my normal WD self.  I’m hoping the same this time.  The risk of Covid outweighed the risk of the vaccine for me.  

[Phoenixmama]

what is your diet like? please give me some ideas for meals or do you not have food sensitivities ? im struggling 

[Fightinghard]

I’m sorry to hear about your food issues.  Really all I do is try to eat healthy.  Low sugar and sweets. Limited processed foods.   Otherwise I eat fruits, veggies, meats, nuts, protein kind bars, etc.  but I’m not super limited.  I’ve noticed sugar is hard for me if I have too much.    No caffeine although I tried small amounts of coffee for a few weeks and I was ok.  Maybe 2-3 sips each morning.  I stopped just to see if anything changed. So far nothing major different.   I’m sorry I don’t have any good advice.  I did do low carb for awhile, cut out tomatoes, no bread, etc.  but I really can’t say it helped much.  I honestly think I was blaming waves I had on food when I may have had the wave regardless.   That’s me though.  That all said, if before this mess I had a hot chocolate and marshmallows I would feel like garbage afterwards.  So I think similar things will happen if I eat or drink things that make me feel bad.   That’s normal.  My therapist (went through 5-6 year WD with horrible Aka) tells me all the time we’re really nothing more than worse versions of who we were before the meds.   Sorry to ramble.  I wish I had better advice.  You’ll get through it.  I’d say go slow and simple and just add things in small amounts.    

[mstimc]

3 hours ago, Fightinghard said:

So I decided to get my moderna booster shot today.  So far I’m ok.  Compared to the second shot I’m doing better.  Last time I felt stimulated pretty quickly but within a day or 2 I Was back to my normal WD self.  I’m hoping the same this time.  The risk of Covid outweighed the risk of the vaccine for me.  

I had the Moderna booster over the J&J vaccine and had zero side effects.  The initial J&J gave me the chills for a few hours but that was it.  Like I told the nurse, any side effects beat the h*** out of Covid!

[Fightinghard]

41 minutes ago, mstimc said:

I had the Moderna booster over the J&J vaccine and had zero side effects.  The initial J&J gave me the chills for a few hours but that was it.  Like I told the nurse, any side effects beat the h*** out of Covid!

I couldn’t agree more!   I’ve seen far too many people struggle with COVID that were not going through WD never mind with it.  That’s why I went for it.  I’m generally doing better lately so I figured why not do it and then I’m in a much better place once the booster settles.  

[Phoenixmama]

@Fightinghardno this is perfect advice , I understand everyone’s different… I’m happy you reply , this will help me a lot and what your doctor said about being the worse version of our self before the meds is true , it’s like what I went on the meds for in the first place times 100…. I eat mainly everything except sugar but these days since that whole banana loaf I ate caused me to be like I had a hangover for two days ive be paranoid that I’m getting a wave of everything I eat now and I don’t need that stress , because yes I could be getting a wave anyway… ☀️ Thanks 🙏🏼 

[Fightinghard]

This is so hard!  Our anxieties have not changed but maybe it’s presentation has?  In my experience I’m finding that without question I’m going through WD and a re- adaptation from the drugs. But the things that always made me anxious are still there but now my responses are just more intense and different.  I’m working on my anxieties but still being aware of the real implications of WD.  Overall it seems my anxiety is getting better and in turn my symptoms are calming some.  That and time are helping.  I do think doing everything you can and being busy is helpful but don’t overdo it.  There foods are always hard but I’ve found just go slow and things are ok.   
 

i wish you well and I hope things improve quickly for you!  

[Fightinghard]

Day 2 of the booster seems to be kicking my but!  I’m exhausted.  Head pressure, low motivation, and just feeling bad.  I’m still better than months ago but ours a hard day for sure.  I also walked this morning and did light stretching and exercises. Nothing too strenuous more just for movement. Otherwise I’m trying to lay low. I may walk again just to get fresh air. I’ve not napped much this entire time.  Usually I end up feeling much worse.  I did sleep ok last night.  I woke up a few times but probably slept 6-7 hours?  It’s probably the normal reaction to the vaccine that is making my WD feel worse.  Good things are no chest tightness or burning, my legs feel ok and anxiety is very low.  Just feel very distressed and easily stimulated by things like sounds and emotions.  
 

I’m hoping by tomorrow this passes. Time to distract and keep busy. 

[Phoenixmama]

i think they are going to require us to get the booster at my job soon , so your info is great for me 

 

[Fightinghard]

No problem!  I think I’m reacting similar to the 2nd dose back in February. That lasted me a day or so. I was willing to take the risk as getting COVID with WD seems like a possible disaster that I want to avoid if possible. My kids are all very active with activities and I thought I better be protected with all they may be bringing home. They’re all almost completely vaccinated. My daughter gets her second shot in early January. So now it’s just hope for the best! 
 

 

[Fightinghard]

You know I’m in a bad place when I’m posting 2 days In a row.  The vaccine booster was obviously not good for me.  I’m in a hard wave after making some headway for many months.  I’m really hoping this doesnt last Very long.  I only got it because I’ve seen how hard covid had been on people in WD and my kids are very active and have had encounters with friends with COVID.   I’m very sensitive and easily stimulated right now.  Being around family is hard. Is not as bad as my set back back in June but it’s frustrating after making progress.  I know waves happen and this could be just what it is but the fact that I’m2 days out from it and I’ve gotten progressively worse since I’m thinking the booster got me.  All I can do know is be gentle to myself and distract.  I hope I can walk like I was. That was so therapeutic and I would enjoy it.  I’m not sure I can today.  I was driving better and now I don’t think I will try. We’ll see. Maybe this passes quickly.  

[mstimc]

Fighting, you know any setback is temporary, and as miserable as the vaccine side effects may be, COVID would be a lot worse physically and psychologically.  This new variant is running rampant and we need to do what we can to protect ourselves and others.  We've already had Christmas and New Year's gatherings cancelled because family members and friends have tested positive or been exposed.  That really sucks!

[Fightinghard]

I get it for sure. My symptoms just suck!  I can’t tolerate being around people or driving, etc.  but I know with time it will settle.  I was really making progress so I’m just frustrated.   I miss my family and my wife so much.  I can’t be with them like I want to.  But I know it will change and over time improve.  Maybe quicker than in the past. I’m really hoping for some good improvements soon

[Fightinghard]

Things change… now I’m pretty calm and in a good mental place but I’m getting weird surges in my chest?  I’ve had them before.  I don’t think their adrenaline or cortisol only because I’m very calm right now.  But it makes me not want to do much as they increase as I’m active.  I haven’t had this for a few months.  My chest isn’t tight or burning.  So that’s a plus.  If I didn’t have this I’d say I’m in a window. Hopefully tomorrow gets better. 

[Fightinghard]

Well I slept ok last night.  Probably 7 or so hours. I did wake up once and probably was awake for 30-60 minutes?  Hard to day but I feel back to sleep.  What was really encouraging was I felt relatively calm most of the night even when I was awake.  Even waking up wasn’t too bad.  Not normal but much less intense.  Now I’m feeling the distress and I guess it’s fear?  Just not a good feeling.  I will say historically I’ve had more intense feelings the next day after I sleep better?  Not sure if that’s a coincidence.   The hardest symptom for me right now is just the stimulation from talking with my wife and being around my family.  It waves and wanes and it was much better last week and for awhile.  But it seems since the booster it’s been hard again.  I’m hoping it settles and I get back to a better baseline soon. I usually walk and do light exercises in the mornings but today I may pass.  Although it usually makes me feel much better for a short period of time.  I’ll probably do it because I really think it helps healing.  I’ll listen to my body and if it’s too much I’ll stop. 
 

Well another day in this wave.  I think the booster pushed my into this but I have to be honest and say I’ve had waves and windows this whole journey so who really knows. Some things are better and others just different. Distract and do the best that I can!   I’m hoping I check back in later to say things are different or better. Usually that is the case. 

[Phoenixmama]

Merry Christmas 🎄 hope your feeling better 

[Fightinghard]

Belated Merry Christmas to you!! Thank you!! Well I was able to spend Christmas Eve and Christmas Day with my family and it was fairly normal.  I was stimulated and symptomatic for sure but I was able to participate where is seemed normal to my kids for the most part.  That’s a big improvement over months ago.  Today is hard but even so my symptoms just are less intense than they were and some aren’t here?  I think the emotional symptoms are the hardest right now where I feel distressed and is hard for me to talk to people today but the intensity is far less than months ago.  I’m far from healed but I’m really starting to appreciate the idea how things fade over time.  It seems many of my symptoms are fading little by little.  
 

I’m in a state of limbo.  At my worst back in July my days were spent sitting in a house on my phone all day long. Distracting.  Now, I’m able to get out and walk and drive and internet but I’m still symptomatic and things are still uncomfortable.  So I want to go do things but I don’t want to overstimulated myself.  At the same time, sitting in the house on my phone has zero appeal to me these days.  I’ll figure out the best option.  I’m really trying hard to use the Claire Weeks acceptance approach and I do think it is helpful.  I’m hoping that after the next few days I’ll come out of this.  Between my booster shot and a busy Christmas I’m sure my cns is tired.  But that’s all said, I’m much better than months ago and I’m able to do so much more even if it’s hard.  Usually after a wave like this I see improvements.  I’m hoping.  I’d love for the emotional stuff to calm down.I just rambled for too long!  Hope you are well!  Thanks for checking in!  

[Fightinghard]

Today was probably my best day yet. A full day of ‘normal’ activities.  I’m getting better and better at ‘floating ’ with my symptoms and truly accepting them and just living. No judgement. Just letting them be there in the background while I do things.  My ITs seem to have left and that has been a really big improvement.  I’m exercising more and harder than before and I’m seeing no negative impacts on my symptoms. In fact I think I’ve improved dramatically since I started doing more. The vaccine impact I think has past me.   So progress is being made.  I can’t predict when I’ll be healed but I will say I am starting to really see healing happening. I’m going to keep this going with healthy eating, working my anxiety with the anxious truth and Claire weeks, exercise more intensely more and more and I’m going to continue to do things that make me uncomfortable but in small amounts.  When I look at my day today and if I take out ‘how I feel’ I had a normal day.  I need to continue to shift my attention from how I feel to what’s happening in the moment.  
 

I thought I’d share because of the booster. I would do it again based on my experiences.  A few days of difficult symptoms but very manageable.  Now I’m just keeping up smart practices like Hand washing and masks. I was going to join the gym but I’m going to wait another month. I’ve waited this long why push it now. 
 

i wish everyone continued healing. 

[Phoenixmama]

🥳🌞

[mstimc]

Thanks for your post, Fighting!  Its so important for members who are struggling to see that recovery is real; it can be incremental instead of a big "Ah-Ha" moment.  You are doing great on your path.  Positive thoughts to you from the Left Coast!

[Fightinghard]

@mstimc are you back in the states?   Thank you. Its been a long journey!  I had the clearest mind yet and felt myself today.  I really believe at this point, that I’m dealing with anxiety. Is different feelings and sensations than before meds but the triggers are the same.  So I believe if I can calm down my anxiety, my cns will be less stressed and it will only benefit my healing with WD.  I really understand this now more than ever.  Early on I thought I was accepting but I really wasn’t.  It takes time to learn.  Anyway thank you again.  

[mstimc]

4 minutes ago, Fightinghard said:

@mstimc are you back in the states?   Thank you. Its been a long journey!  I had the clearest mind yet and felt myself today.  I really believe at this point, that I’m dealing with anxiety. Is different feelings and sensations than before meds but the triggers are the same.  So I believe if I can calm down my anxiety, my cns will be less stressed and it will only benefit my healing with WD.  I really understand this now more than ever.  Early on I thought I was accepting but I really wasn’t.  It takes time to learn.  Anyway thank you again.  

Yep, back in So Cal where we came from!  We've been back about a month but working on our house has kept me from logging on here as often as I'd like.  Accepting the feelings while at the same time knowing they will come is a huge step forward, because then you realize they only have the power you give them.  Its still no fun, but you know they won't last forever and they aren't part of who you really are.  You are strong!

[Fightinghard]

Well I’m back in a wave. It’s a hard one.  I’ve been doing decent with the normal ups and downs.  Able to get out more and do more.  Today I can’t really describe what I’m going through.  It’s similar to my really hard days back over the summer but yet not as intense but just as impactful.  There’sa chance my son had Covid (his buddy had it) and I’m wondering if maybe I’m affected.  We’re all vaccinated and boosted so maybe it’s just a low level response.  But I’m definitely in a harder place.  I so want to just go be active but I’m not sure what or where to do it.  I’m sure this will pass and hopefully soon.  I’ve not had perfect days but early this week they were solid.  Emotionally I feel stronger and better most of the time which is helping.  Anyway this process is long and unpredictable.  I’ll keep doing what I’m doing about although I am backing off exercise while I go through this wave.  I’m still walking and stretching, light exercises but nothing to increase my HR too much. 
 

My recent history tells me that most likely this wave will pass in a few days If not sooner.  I hope.  

[Alice1]

@Fightinghard

Are you still on Ambien and Trazodone ? 

[Fightinghard]

Nope.  I only take .23mg of melatonin. I’ve even decided to stay consistent on that too.  No changing anything.  No new drugs except the booster but that was an educated choice after seeing others get covid.  We’ll see how that ends up

[Fightinghard]

@Alice1i stopped them in 2020.  I took ambien for 4 days and trazadone for maybe 6-7 times over 3 months.  

[mstimc]

51 minutes ago, Fightinghard said:

My recent history tells me that most likely this wave will pass in a few days If not sooner.  I hope.  

Yes!  That's what you need to remind yourself when you're in a wave--you know it'll pass because it has before. 

[Fightinghard]

I’m still in this wave.  In fact in think it’s peaking.   Increased anxiety and just feeling bad. The intensity may be less than my worst times but I’m struggling with it today. I still walked this morning and did light exercises.  Very light movements with light weight.  I Do feel better after I do this.  My evenings have been good mood wise.  I have a few symptoms that have left me now for awhile. I’m hoping this wave brings new improvements.   I don’t believe the vaccine is at play here. We did think my son had Covid but he’s tested negative 2 times. Only a runny nose. But maybe he had it but a very low level and I’m now fighting it. I have no symptoms at all. So who knows. Whatever the cause,I was making good progress so I’m hoping this calms down soon.  I’ve done nothing else New the past few weeks. I exercise some and maybe I pushed harder last week?  But nothing intense.  I eat the same.  No one stresses.  So I’ll chalk it up to either some kind of Covid related deal or just a wave.  Maybe this wave will be short lived since recently that’s been the case.