WinningThrough: Does it get better?

[WinningThrough]

WinningThrough,

 

You've been through it , for sure . You are a " champion".

 

Keep up the " good fight".

 

Hugs ,

 

Ali.

Thank you for your kind words, Ali :-) Hugs to you too xx

[WinningThrough]

Thought I'd do an update.

 

I recently went to see the doctor. That's not something I generally do or like to to but I wanted some reassurance about the additional symptoms I'd been having..the nausea, dizziness (different from my normal dizziness), severe headaches, etc. I was reassured. The doctor said he'd seen many, many people with the same symptoms, all saying it was a very nasty virus and couldn't believe how long it was going on. This was a relief because I thought it was new withdrawal stuff or something worse. I'm just about recovered from that virus. I had it on and off for almost 3 months and it really knocked everything backwards.

 

The doctor also said I have fibromyalgia. I have dreadful pain just about everywhere, particularly in my neck, shoulders, upper back, arms and wrists. I also have a rotator cuff injury on the right side. Marvellous. I've been finding for a while that I can't move my right arm backwards and it locks out in certain positions. It's extremely painful and I can't sleep on that side. The doctor is referring me for physiotherapy for that and the fibromyalgia. Physio can be very good. I'm hoping all this pain isn't fibro but is just part of this and will all go away.

 

Apart from that, I'm still dealing with all the usual ****. I couldn't be trying any harder than I am. I mean, what more do I have to do??? This is what I'm doing:

 

- A strict diet - I don't eat gluten, dairy or sugar in any form. I'm starting to go starch free and I'm cutting out nightshade foods

- A neuroplasticity program

- Saying affirmations

- Pushing myself ridiculously hard. I really, really am. I've been making myself get dressed, do housework, go out, see friends (on a one to one basis)

- Faking it til I make it

- Trying not to talk about all this

- Acting 'as if'

- Keeping mostly away from the internet so I don't read things that are scary or unhelpful (and because using the laptop and ipad makes everything worse)

- Generally doing anything I can think of that's good for brain chemistry

- Starting to watch some EDMR clips on you tube.

 

Honestly, I really think that I deserve some sort of reward after doing all this! What more can I do than I'm already doing??? Surely there should be some sort of change. Perhaps there will soon.

 

I have to remember that it's not long since I recovered from flu so maybe I'm a bit 'post viral'. The last few weeks, the fatigue has been absolutely ridiculous. I had chronic fatigue before the drugs and used to fight to stay awake. Now the fatigue is at a whole new level. But at the same time I'm wired with akathisia and adrenaline. For goodness sake. For a while my sleep was very bad but during that time, I was less tired and had more energy. I didn't feel as bad as I do now. Now I'm sleeping a lot (and waking a lot in between) but feeling more exhausted than ever and more unwell. I'd much rather not sleep and feel less bad. My neck glands are hurting like crazy. I have neutropenia and it takes me a very long time to recover from everything so perhaps this is still from the flu. The pain and fatigue are a walk in the park compared with the akathisia and mental torture but really, having these on top of what I was already dealing with is a joke.

 

I've put myself on a couple of distant healing lists.

 

Maybe I am trying TOO hard.

 

I am stressed about something and have no doubt that that is playing I to how I feel. Next week I am going to Scotland for a few days to stay with my dad. I have been working very hard on my recovery in order to be able to cope with going away. I wish it would work! The last time I went to Scotland was in march. I was meant to go in October but was too sick so I postponed it. I tried to postpone again but my dad and boyfriend really want me to go. This time my boyfriend and I are going by train and I think that's whats stressing me out the most. Last time we went in the car and in the car, I could hide. On the train I will be very visible and will have to really hold it together in front of people and sit for a long time. We will have to get a bus to the train, do a 40ish minute train to London, cross London, and then take a 4.5 hour journey from there to Scotland. And then get to dad's house. And, when I'm at dads, I will have to try to hold it together and pretend to be better than I am. How the heck I'm going to do that journey, I don't know. I should never have agreed to go on the train. I wish we were going in the car then I wouldn't be so stressed.

 

This has been stressing me out majorly although ultimately, it may be a good thing to go away. I'm interested to find out how I fare when I'm there. Last time I went I improved a bit and was the best I've been. When I went to the sea for a few days back in august, I was improved too. If I improve when I'm in Scotland, I will see a pattern emerging that is linked to not being at home. I don't think it's so much the things I did when I was there, more not being at home. I've honestly been pushing myself so hard (despite horrific symptoms) and making myself go out the way I did the two times I was away, but I don't feel any better for doing all this. So I don't think it's linked to what I actually do. It's living here and the pressures that come with it.

 

This has been a bit of a rant but I'm just tired of trying so flipping hard all the time and feeling like I'm getting nowhere. I'm tired of pushing myself so hard for people around me. I'm tired of always trying to be so strong. I'm tired of putting on an act. I'm tired of all the pressure. I don't like posting negative things and bring people down but this morning I just need to get it all out.

[KT38]

So glad you are trying to stay positive through all of this! You will recover, nothing lasts forever. I started getting very bad dizziness 1 week ago and still bad. It is the worse I have been and I'm almost at the end of 8 months off. I feel like my brain stem is messed up and screwing up my brain bad. As far as fibromyalgia, did you have the symptoms before the meds? Did pain start right when you got off the meds? Good luck in Scotland. I'm jealous you have travelled before during this, you are very strong!

[Muddles]

Love you Winning! You have been so amazingly strong. My hero!

 

<3 xxxx

[luv2knit]

(((WT))) I feel much of the same. The reason I was put on Zoloft was for Chronic Fatigue Syndrome. The fatigue has been really bad for me too, but as you pointed out, is nothing compared to the akathisia. To have a virus on top of it all is unimaginable! Hope you recover completely from that soon, and can start to see some relief from your withdrawal symptoms. Hoping your trip goes well. I do remember you seemed to experience some improvements when you were there before. So difficult to have to pretend we feel better than we do, though!

 

XOXO

[WinningThrough]

You are all so lovely. Thank you.

 

Muddles..thank you for your kind words. You are incredibly strong. Love you too. Xx

 

KT38..thank you for your message. I'm very sorry about the dizziness. I seem to remember hitting a bad wave about the time you are off..about 9 months. You will get better. I didn't have fibro before the meds. I started to get the pain about 8 months off and it began to get bad around end of august. A lot of it is definitely due to being bend over my ipad and holding myself rigid and also lying in bed and holding my ipad up with my arms. It did me in. I limit my ipad and laptop use now. Xx

 

Luv, I am terribly sorry to hear about the chronic fatigue. You sound very similarly afflicted. Keep going..you are going to get there. Xx

 

You are all going to get there.

[luv2knit]

WE are all going to get there! You will too, WT! (((Hugs)))

[WinningThrough]

Oh yes..I forgot me!!! Yes..I am going to get better too! Of course I will. Xx

[AliG]

WinningThrough,

You are not trying too hard , you are just trying !  I love your spirit , and your determination to get through this .You truly are the epitome of  " grace under fire ".  I think you deserve a rant. You have been strong for so long . I understand why you would throw your hands up in the air , and say " I've had enough. I can't do this anymore " ! Totally understandable . I get it !  Been there.  However, you and I both know neither of us is " giving up ", anytime soon. It's just not an option .Stay strong.

Hugs,

Ali

[WinningThrough]

Thanks for your lovely message AliG. It means a lot to me. I'm definitely not giving up. I don't feel quite so bad today as I did yesterday. Xx

[KT38]

You amaze me WinningThrough! You have been through the trenches yet your light is so vivid!!! I love that! You will win this battle....keep fighting everyday.

[WinningThrough]

Thank you kt38. That's a lovely thing to say xx

[Wildflower0214]

WT, so good to see you still persevering! You are a strong woman! You have always been and still are an inspiration.

[WinningThrough]

Ah thanks wildflower! I really appreciate your kind words xx

[UnfoldingSky]

Winning! I haven't been around much but am always wondering what is happening with you.  How awful to have so many things going on at once!  You sound very determined though, I admire your perseverance through all of this!  I am so very frustrated for you that you continue to suffer so much.

 

I do hope the trip to Scotland goes well though I completely understand why the train bit would be trying.   I used to occasionally travel by train to a large city near where I live and my family/friends didn't understand why I made such a fuss about it...I kind of thought I deserved a medal for every trip, they couldn't quite see it that way though!  I did manage it somehow in the end.  I will be cheering you on!

 

And I hope the distance healing goes well, I had some a long time ago that was helpful, it was surprising to me that it did seem to work.  Will the wait be very long? I wish I could have had more but the person I saw no longer does it and I'm not sure where to find someone who will be good at it.

 

Love to you,

 

US

 

 

 

 

 

[WinningThrough]

Winning! I haven't been around much but am always wondering what is happening with you.  How awful to have so many things going on at once!  You sound very determined though, I admire your perseverance through all of this!  I am so very frustrated for you that you continue to suffer so much.

 

I do hope the trip to Scotland goes well though I completely understand why the train bit would be trying.   I used to occasionally travel by train to a large city near where I live and my family/friends didn't understand why I made such a fuss about it...I kind of thought I deserved a medal for every trip, they couldn't quite see it that way though!  I did manage it somehow in the end.  I will be cheering you on!

 

And I hope the distance healing goes well, I had some a long time ago that was helpful, it was surprising to me that it did seem to work.  Will the wait be very long? I wish I could have had more but the person I saw no longer does it and I'm not sure where to find someone who will be good at it.

 

Love to you,

 

US

Thanks unfolding. I often think of you too. Thank you for your kind words. Thanks for what you said about the train. It's helped me to have the courage to do it. And I think you deserved millions of good Olympic medals for doing those train journeys.

 

I'm glad the distance healing worked. Someone from the website has contacted me on Friday to say he would be sending healing and will send it more than once. I did have more energy yesterday and felt slightly better so maybe it helped. Today I'm clobbered with fatigue and it's so hard to swallow from the gland pain. I think that's linked to the fatigue. I've wiped myself out from pushing myself so hard. I'm going to rest at home between now and going to Scotland. I will do it, somehow. I'm having some healing from a different healer when I'm back and he's given me a couple of days when he will send it. Sometimes I think it's a question of finding the healer who fits best with us. Different healers link in better with different people.

 

Keep going, unfolding. You are such an inspiration to me and a lovely person xx

[Wildflower0214]

Hey there,

 

Just wanted to ask how the neuroplasticity program is going? I know part of it entails not discussing symptoms and not keeping track of them. I always wondered how this would work for someone in WD who may need to track these things. Logging symptoms is the only way I can tell if a food...etc. is triggering something. I'm interested to hear how it's all going for you.

 

I'm sorry to hear about your intense fatigue. And, I hope you have a safe and enjoyable trip to Scotland. I'm sure it's nice to have a change of scenery. I remember reading about you having some enjoyable visits there. Hopefully, this one will be just as pleasant.

[WinningThrough]

Hey there,

Just wanted to ask how the neuroplasticity program is going? I know part of it entails not discussing symptoms and not keeping track of them. I always wondered how this would work for someone in WD who may need to track these things. Logging symptoms is the only way I can tell if a food...etc. is triggering something. I'm interested to hear how it's all going for you.

I'm sorry to hear about your intense fatigue. And, I hope you have a safe and enjoyable trip to Scotland. I'm sure it's nice to have a change of scenery. I remember reading about you having some enjoyable visits there. Hopefully, this one will be just as pleasant.

Hi wildflower. The fatigue is easing a little. I have another virus and I think that's whats caused it. Viruses always seem to make all my withdrawal symptoms worse. It's seems to be turning into a cold now, just in time for my trip away!!

 

Re the neuroplasticity program..I'm up and down with it. I guess I'm not sticking to it as religiously as I should. It's a big shame about that flu that hit me in August and hung around for about 3 months as that put me right backwards and I found it so hard to apply the program in any way. Before that I was improving and had I continued as I was, I may have been seeing better results now. My friend who is doing it (she's not been affected by meds, she has CFS) couldn't do it when she had the flu and understood how difficult it must be for someone whose brain affected by drugs. It's the exercises themselves that I find the most difficult. They work the brain so hard. I don't know of anyone doing the program who is using it for withdrawal or medication reactions. I think people are using it for physical things so I guess maybe it's harder to do with a disassociated brain. If you have a properly working brain and are able to access feelings of joy and connection I imagine it's a lot easier to do. With a brain that doesn't connect and doesn't allow any good feelings and with akathisia it's very very difficult to do. I'm still trying though. I'm sure I will get to a point where it's easier to do it. It's not just exercises, it's a whole way of being, really. I find the stuff I learnt on the DVDs, exercises, very useful and helpful and I apply that stuff more than the exercises.

 

Regarding the food intolerances, there are success stories from people who had terrible food problems. One lady had dreadful Lyme disease and lots of co-existing illnesses. She could only eat 5 foods and was mostly in her bedroom. After doing the program, she was so much better and she was even drinking wine! Another lady had pretty much stopped eating because of her reactions to everything. She kept getting pneumonia, fall bladder problems and all sorts. After doing the program, it all stopped. She stopped reacting to food. As for me, I'm not ready yet to tackle my food intolerances. I tried that way too early and I was slammed. My focus is on getting better first and if I reach a point when I want to tackle the food problems, I will do it later.

 

The program has helped me a lot with my fear of things. It takes away a lot of the fear and analysis of everything. And needing to record everything. That's sort of the point of it..it helps the brain to develop new pathways so that it doesn't react to things anymore and it helps it to stop associating certain things with fear and illness. It can stop us feeling frightened of every little thing and thinking that thing is dangerous and will harm us. Ultimately, I think it's very good, just extremely difficult to actually do in withdrawal!

 

I hope this helps.

 

Apologies to all if I go quiet. I'm leaving my laptop at home when I go away. I'm taking a technology break. Keep healing.

[WinningThrough]

Apologies for all the typing errors in my post above!

[WinningThrough]

Just a quick post to say I'm back from the scottish trip. Not feeling up to writing too much at the moment so it's just a quick update.

 

Scotland was a bit too much for me. I was hoping the same thing would happen as last time I went but it didn't. Last time I had already started to go into a window before I went. This time I wasn't in a window. There were stresses in Scotland; way too much was expected of me and the diet was a major problem.

 

I think going away with just my boyfriend, only the two of us, is the best way but staying with people is hard.

 

Anyway, I did it. And I'm back now. I think, possibly, I may get a window soon. We'll see.

[UnfoldingSky]

Winning, so sorry to hear it didn't go well. I had so hoped you would get a reprieve and be able to enjoy your time away.  At least you have made it through though and won't have that to worry about now.  Boy do you ever deserve a break.

 

Crossing my fingers the window is just around the corner,

 

US

[WinningThrough]

Thanks for your lovely message, unfolding sky x

[WinningThrough]

All I want for Christmas is ... Not a wave. What did I get? An almighty wave. Gee, thanks santa! Just what I always wanted. Not.

 

I've tried so hard. And I got a wave anyway. I guess I have to just go with whatever this thing chucks at me because it does whatever it wants. And it really is chucking the whole lot at me. Aarrgghh!!!!

 

My boyfriend has been pressuring me to visit his family but I don't feel well enough to go. I really need the pressure now. Not. And frankly, I'm rather tired of putting in an oscar winning performance pretending to be ok in front of people when I'm not. And hearing them say "oh you seem much better! You must be nearly there now!"

 

Nearly there???? I feel about 5%.

 

That's my Christmas moan over.

[luv2knit]

So sorry, WT. I was hoping for the same, and I didn't get my wish either. It really does do what it wants, doesn't it?!

 

Hoping you get a nice, big, clear WINDOW soon!!

 

XOXO

[direstraits]

sorry for the bad wave on Xmas,mine was pretty rough ,too...was  glad when it was over.

 

hope you feel better soon...xo

[WinningThrough]

So sorry, WT. I was hoping for the same, and I didn't get my wish either. It really does do what it wants, doesn't it?!

Hoping you get a nice, big, clear WINDOW soon!!

XOXO

Thanks luv. I'm so sorry you didn't get your wish either. Really sorry. We are about the same time off drugs.

 

Thank you for wishing me a window. I hope you get a big window soon too. I keep hoping I'm in my last big wave! The one before big healing happens.

 

Xox

[WinningThrough]

sorry for the bad wave on Xmas,mine was pretty rough ,too...was  glad when it was over.

 

hope you feel better soon...xo

Thanks direstraits. I'm so sorry you had a rough Christmas. :-( Yes, it's a relief it's over. I have my boyfriend's birthday to contend with next..that's on Wednesday.

 

I hope you feel better soon too xox

[luv2knit]

Yes, WT, we are about the same time off! I sincerely hope this is your last big wave! That would be awesome! (((Hugs)))

[WinningThrough]

I've just posted a topic in 'Symptoms and self care' called 'Symptoms that have got better or improved'. I wanted to show people who are struggling with certain symptoms that they can and do go away!

 

After doing the list, I was amazed at how much healing I've actually done! Ok, I'm still in a pretty dreadful shape but there's no doubt that I AM healing. I hope this encourages people.

 

Here is the list of things that have gone or improved:

 

- I had double vision when I came off the drugs and it went away gradually.

- My eyes made clicking and popping sounds every time I moved them. That stopped.

- I had great difficulty moving my eyes up and down, from side to side and circling them. That got a lot better.

- I had severe crying spells for about a year. I would wake up crying and would literally cry (chemically) for hours and I couldn't stop it. I would choke and have problems breathing from it. The crying stopped. Occasionally I cry now but not often and not for hours.

- My brain used to feel like it was shaking in my skull and being squeezed. Those things went away.

- I had a hideous nerve sensation behind my eye and in my nose and face that actually felt like akathisia in my face! I always felt like I had this demonic ball thing behind my eye and a creepy feeling on the bridge of my nose. I never thought that symptom would go away, but it did. I occasionally get it back but it only lasts for a day or so when I do.

- The internal shaking in my legs is a lot better.

- I used to have a tightness in my chest all the time that felt like something was going to explode out of it. That went away.

- I had akathisia down below. It was horrific. But it went away!

- I had a numb bladder and numb arm for a few months and they went away too.

- I had several patches of ringworm on various areas of my body for a few months and they completely cleared up. I had dermatitis or something around my eyes..they were always red, itching and peeling and I actually had hard skin on my eyelids. I thought that would never go but it did.

- I had a really bad tremor and that went away.

- I still have brain zaps, unfortunately. But they are nowhere near as bad as they used to be when I got one every time I tried to move my eyes. I had them every few seconds all day and night. They are not like that anymore.

- Cognitively I have a long way to go but I'm improving. I find it easier to apply my brain than I did.

- My racing thoughts are not as bad as they were. This thing is always there but I can think of other things now.

- My constant suicidal thoughts calmed down. Ok, I still rather wouldn't be here than living like this but rather than having an urge all the time to do something immediately, I actually WANT to fight for my life and get better. I want to see this thing through. I only have this life and I deserve to come out the other side. And I WILL.

- I've sort of trained myself to do certain things now. When I first came off the drugs, I was in bed nearly all the time. I used to eat food with my hands and if I dropped any on the floor, I left it there because it was too much for me to pick it up. I used to go for days and days without having a bath because it was too terrifying for me to do it. Now I have a bath every day. Don't get me wrong, it's far from easy but I can do it now. I get dressed nearly every day. I do some housework now. I eat with a knife and fork and pick up food I've dropped. I push myself to go out of the house sometimes.

 

There are probably other things I haven't thought of but those are the things that spring to mind.

 

I will go into the new year knowing that I have done some healing and put in quite a bit of time. I feel that next year, more symptoms will drop off and some good healing will happen.

 

I hope the same for each and every one of you. Keep going, brave warriors. It will be worth it in the end.

[direstraits]

happy for you,Winning...

 

hope we see much more healing in 2016! xo

[WinningThrough]

Thank you direstraits. I wish you loads of healing in 2016. Xo

[LexAnger]

Can't be happier WT for the great progress! You are a true hero to survive each day and made it to now wining!

 

I am truly happy for you and want to which you continuous faster healing!

 

 

Love and hugs

Lex

[ChessieCat]

Hi WT,

 

That's great news.  It's also "ironic" that it was because you were trying to help others that you also saw the improvements in yourself.  I want to thank you for being honest with your last point in the above post.  I am someone who enjoys a shower (and during summer in Oz will sometimes have 2 a day) but have had many days in December when I have spent the day in my nightie and have skipped having a shower.  Sometimes I couldn't remember whether I had showered the day before.  I use Sapoderm antibacterial soap which I find helps keep the body odour at bay and I live alone so there is only the dog and cat who have to put up with me.  And the dog clears up the crumbs!!!  CC

[WinningThrough]

Can't be happier WT for the great progress! You are a true hero to survive each day and made it to now wining!

I am truly happy for you and want to which you continuous faster healing!

Love and hugs

Lex

Thank you LexAnger! I hope you're doing ok. Hugs. Xx

[WinningThrough]

Hi WT,

 

That's great news.  It's also "ironic" that it was because you were trying to help others that you also saw the improvements in yourself.  I want to thank you for being honest with your last point in the above post.  I am someone who enjoys a shower (and during summer in Oz will sometimes have 2 a day) but have had many days in December when I have spent the day in my nightie and have skipped having a shower.  Sometimes I couldn't remember whether I had showered the day before.  I use Sapoderm antibacterial soap which I find helps keep the body odour at bay and I live alone so there is only the dog and cat who have to put up with me.  And the dog clears up the crumbs!!!  CC

Thanks ChessieCat. You made me laugh about the dog and cat! It must be useful to have a dog clearing up the crumbs! I need one of those! Xx

[WinningThrough]

Just a quick update to show that things really can turn around unexpectedly at any time.

 

After a three month wave with tsunamis thrown in here and there, I actually had some mini windows! And the greatest thing, I did nothing to bring them about!

 

On Thursday! I had a five minute windowish feeling. During the day on Friday, I felt a bit windowish. And Saturday was the best. All of a sudden, and it really was VERY sudden, I actually had a GOOD, HAPPY feeling in my head! I couldn't believe it! I got an excited feeling. And then I started to cry. It was actually chemical crying, as if my brain was making me cry, but in a good way. (I had bad chemical crying for a year, but I've NEVER had good chemical crying before!) I was in and out of these windows all day. Late afternoon, I heard a piece of classical music and I really felt it! I felt pure emotion and was genuinely moved! It was awesome. I was terrified of music for ages and got stomach churning doom and terror when I heard it. More recently, I have been moved by music again but this time, wow! I felt it so much!

 

Just as suddenly as the windows came on, they all closed in the evening. I heard another piece of stirring music but it did nothing for me. This thing is so random! Last night I went into a massive wave but today I'm not so bad.

 

I wanted to give a little hope to anyone following this thread that things really can change at any time, particularly when we are really bad, it seems, and that healing is always taking place, however slow it seems.