Just had a week which started badly and gradually got worse.
On Sunday I went on my usual 1.5 mile walk but felt a little “off-it” afterwards. Decided not to have a walk on M/T/W to ensure things didn’t get any worse. However, trips to the dentist, mother’s birthday and a number of 1 hour long “business” calls over the following days must have taken their toll.
Thursday morning, after a rubbish nights sleep, woke up feeling really fatigued and unwell. Tried to carry on regardless but by the late afternoon I gave up, went to bed about 6 and went into meltdown mode. Extreme fatigue together with feelings of “OMG what’s happening” resulted in a crying fit followed by “zombieness” (staring into space and not responding to anyone feeling like I was about to die).😞 HORRIBLE!
Hard to stay positive and remember the better days when you are going through this.
Still completing the drugs transition so maybe this is having effect.
Hope all you other warriors are having a better week.
Remos.
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Remos
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Hey, Remos. I get it. I go along, feeling like I’m managing fairly well, then I push a little too hard or some things outside of my control stress me out, and then I am falling off the cliff. My body and mind collide and divide simultaneously. I’ve found only one way through an episode like this: sleep. I was losing my grip last night, stopped, and forced myself to go to bed. Asleep and dead to the world by 7ish and in bed for the next 13 hours. Still off today, so I know not to do much.
Thanks for your response and support. I think you’re right in that sleep is key. I’ll stay in bed until midday tomorrow to ensure I don’t fall back into my routine and do too much before I’ve had time to recover.
Thanks for helping me to stay positive. We’ve got this 💪.
I am led to believe the changing of the season is having something to do with this. I also had a busy week and the same things happened to me. The fatigue, "zombie-ness", etc. I wasn't feeling all that well for over a week.
But I have learned that when I push myself beyond certain limits, I will pay for it. I no longer let it bother me any more. Instead, I have learned to "roll with the punches" and expect what will happen. Once I accept this, I simply "float" through the times of not feeling my best. In time, I know that I will be feeling better. And so far, that has held true.
There can be a lot of disappointment, and sadness when we are having a bad day or week. But when the element of surprise is removed, we will know what will most likely happen, and then we can manage things and deal with it without feeling so badly about it. However, I must admit, I had to go to bed VERY early one night last week, and I sounded off very loudly, "Bloody encephalitis!!!" But as aggravating as it they be, these episodes will pass.
Strangely enough, your post appeared at almost exactly the same time my wall mount for the new TV was completed!! A friend who is a master carpenter came over and made some measurements, and bolted a very sturdy support board to the wall joists, then the TV bracket went on. So, very soon, I will be able to resume my viewing of episodes of "The Prisoner"!!
After making it through another difficult time, you might want to do something just for yourself, or even something silly and fun! Partaking of a food item you don't usually enjoy would be good!! (Right now, I'm thinking of some takeout boneless Chinese ribs from the local restaurant!!)
In any case, know that you are doing just fine. We e-peeps do the best that we can, and that's all that can be expected.
Oh, we’re posting pictures of food now?! I hope there aren’t any vegetarians or vegans on this thread… I saved up my energy today to make a top sirloin steak on a cast-iron skillet. But I cheated on the asparagus and sweet potato. Before E, I kinda liked beef sometimes, but now it’s all I want. Not to worry—I’ve gotten my beef consumption down to a healthy level again haha.
Touche, mon ami!! If I may, I would like a duplicate plate, with extra butter on the asparagus!! I see that you have what appears to be a sweet potato to go with the filet, as well! I also see you have a Sabatier knife, and a colorful selection of meds in the background! Myself, I am a Wusthof man, having spent some time in the foodservice. Henckels are good, but don't get as sharp as Wusthofs.
Cast iron is great for getting the outside of a beef cut nice and seared! I don't really eat too much beef, only because it is so expensive. I am very frugal but judging from my appearance, I've "never missed a biscuit" as we say in the hills, here! 😆
Whew, this week has been busy and tomorrow I report for my 4 hour shift at work. For now, I offer this stack of e-cakes, butter and syrup of choice optional! (Blueberry syrup is awesome!)
Just reading your post made me laugh- I’ve never heard of ‘never missed a biscuit’, but it’s a good one. We also have Wusthof knives… I get quite stressed when using other less sharp ones these days 😂 Although I have to admit I have used them to chop up pills that didn’t come with a snap point…
A popular "comfort food" in these parts is called "biscuits and gravy". It is a delicious concoction that is on the opposite side of the "health food" spectrum! My favourite knife is now a Santoku, which I use most often. With the wide blade and slightly curved edge, it makes tasks easier than using the standard "chef's knife".
For the pills, I would never dare to use a Wusthof to cut them! I have a few pill cutters which are safe and effective for such a task. Perhaps the local pharmacies/chemist's there stock them? They only cost a few quid and will save your fingers. Also, pills won't shoot across the room like an unintentional game of tiddly winks! (I haven't played tiddly winks for over 50 years!!) The pill cutters have a little razor-like blade in the top/cover portion and as you can see in the pic, the pill holder is in the shape of a triangle, which can accomodate pills of many sizes.
Thankyou for your reply. I agree with you in that maybe I need to get to know my limits better and not try to push things too soon. I also honestly believe that the changing of the seasons does have an effect. I can feel it when I take my morning walks. I know it will help when we start to get more consistent warmer days. This one day rain one day snow the next wind and then maybe some sun must have an effect. I’ve read it in the tea-leaves (just a joke).
I do hope I’m able to “roll with the punches” better at some stage. I’m also hoping to manage things in a more consistent and measured manner and not get too carried away when I’m feeling fine.
I took your advice and had a treat for tea. Rather than cook anything we pushed the boat out and ordered a takeaway pizza (I know what you’re thinking but it’s a small boat and I enjoyed it) followed by a chocolate muffin with fresh cream - yum ( no pictures I’m afraid - we ate them).
Hope you enjoy the rest of The Prisoner episodes on your new elevated TV.
Hi Remos, sorry to hear you have had such a setback. I hope it is just due to a change in meds. I have had very 'down' sessions where everything looks very pointless etc. just from missing one anti-depressant tablet out of my usual three. If I had a pistol to hand it might come in useful. Riding through these episodes is a real challenge but worth it if one can get through them.
This last week we have had a change of scene which seemed to be quite therapeutic. We went down to Oxford to see a specialist and I was expecting the journey and change of scene would leave me worn out. On the contrary, we walked into Oxford from our self-catering accommodation and I felt great.
I would say Oxford is not especially pedestrian friendly. The many cyclists prove to be a hazard as they speed through the 'shared' pedestrian areas apparently oblivious to the danger they present. We met the Enc specialist and it seemed to go well, we await his report. As could be expected I immediately forgot the interview and had to rely on my wife to go over the event and the specialist's findings.
We had time to see the sights and I can recommend the Ashmolean Gallery - it had an amazingly uplifting effect and was a great emotional and spiritual experience. We walked around the shops - my first shopping trip for three years and we even caught a bus back to our flat. Thankfully our nightly one mile plus walks around our neighbourhood stood us in good stead and the distance was manageable. All in all it was a great boost to my confidence.
When we got back to Leeds I was exhausted and spent a couple of days in bed. It is usual for this to happen as an an Enker my energy levels are low and are easily exhausted. Tired now so will bail out. Best wishes from Leeds.
I hope your hear some good things from your specialist at Oxford. That’s where I go too, although my next appointment isn’t until July- I normally write lots of notes, as otherwise I find I get things confused. The last time I went there was my specialist plus about four or five of his team in there, which was interesting.We really enjoyed a trip around the natural history museum on our trip- it was also the first time we’d been on a bus in the UK for maybe five or more years. (I am saying your and my specialist but assuming it’s the same guy!)
Thank you for your reply. Must admit I’ve been really up and down since I started with this drug transition so it may have added to my episode. Whatever it was I need to avoid any repeat if possible. That’s why everyone’s responses here are all nuggets of gold to me right now.
Only been to Oxford on business and have never visited the Ashmolean Gallery but sounds like I need to.
I also have a change of scenery every so often on the Leeds-London train when I visit my neurologist. Must admit the journey still drains me. But I always get the London buzz as soon as I step off the train. At one time I’d have taken the opportunity to take in as many of the wonderful restaurants and places to see as possible. Don’t have the stamina just yet.
Good to know your journey continues on an upward trend.
Wishing you the best too (from just outside Leeds).
Hi Remos, it is so great of your progress and optimism. The nuggets are often in darkest part of the mine. We/I are very prone to losing it when overload strikes.
When we were in a shop queue in Oxford there was an old lady at the far end of the queue and I felt very sad for her - but what could I do? I worried for two days and can get badly affected at the sight of a dead bird in the road. I ended up retching with grief at my powerlessness to prevent tragedy and alleviate the plight of the weak.
Much to my wife's relief I recovered after a several hours and figured a strategy, prayer, donations, a greeting - anything that will bring a smile.
Hang in because you are an inspiration to all on here - a solo train journey to London town! Wow.
Thank you for your kind words of encouragement. They really mean a lot to me.
Please know that you’re not powerless in your ability to offer help to others in need. You do it all the time on this site. It’s responses like yours that make a big difference not just to me but all the people you send hope to on this forum.
Please don’t underestimate this.
Thank you .
Remos
PS I also get upset when I see hedgehogs in the road.
Hang in there, Remos. The show must go on. Remember, like #6, no matter what happens in the previous episode, each starts anew with a look out the window and the realization that things are as they are, but with each new day/episode there is a chance to escape this village. Be seeing you! 😀
Thanks for your reply. The more I read your responses the more I think this journey really is being played out in a similar way to that of No6.
I’ve had this horrible episode but It’s now a new day where I’m feeling better which will allow me to learn from my mistakes and how to avoid similar setbacks going forward (hopefully) and eventually find my escape. It’s uncanny.
In fact I’m starting to suspect that you could be number 2!
Yes I have had similar meltdowns I have has consults with a neurologist in Melbourne he says it's like ptsd and you need tools to control stress sleep better ...with melatonin I will try stay safe Alan
Thanks for your reply. I think you are right in that it’s important to work on developing the right tools and methodologies to help deal with this condition and hopefully avoid any further meltdown repeats.
I also agree in that I think there is an element of PTSD involved which is compounded further by lack of and/or poor sleep. This is a tough one for me just now as my sleep continues to be broken and interrupted. Need to work more on this.
Thankyou for your continued support and informative views.
Hope your journey is continuing to progress positively.
I am sorry it’s been a tough week- as others have mentioned, sleep is so important for recovery. Last summer I was having naps every day, whereas now I only take them when I need them.The changing of the seasons/clocks has always impacted me and I am sure that is making a difference now too.
Thankyou for responding. I think taking naps during the day is something I should try harder at. But for some reason I find it difficult to actually nap/sleep during the day, although I do find using a black-out mask whilst taking rest does have definite benefits for me.
The seasonal changes must make a difference and I’m really looking forward to the summer.
Thankyou for thinking about me. I hope all is well with you.
So sorry to hear this. My week not great either! Got Covid and my head and nerves all pains and tingly, so feel rough too. Sorry but I think we need to listen to our bodies and rest when needed and not see this as defeat. It is a battle of recovery and we need to remember we re not alone in this.Take care and best widhes.
Thank you for your reply. I now know why you choose your name ( probably obvious to most but I’m a little slow these days).
Really shocked to hear you had/have Covid. It’s something I dread happening. However, hopefully your recovering well - thank goodness.
As you’ve wisely pointed out sleep is indeed a problem for many of us and certainly is for me. As you also say I need to become more aware what my body is saying and not always just try to plough on regardless. I think I’m sometimes my own worst enemy. But I’m always concerned that if I try and sleep during the day I won’t be able to sleep at night. I guess it’s a balance of both which I haven’t found yet.
Thank you for your good wishes. It’s reassuring I’m not alone in this and that there are people like you who care. I hope you recover well from covid.
Reading your post and all these replies I agree with everyone. It’s so hard when the E hits you unexpectedly or even when you half expect it but hope you’ll dodge it. Like you, I then can’t sleep, which makes it worse. The only cure is a veg out on the sofa as I get far more depressed if I stay in bed. At least I can see out of the window downstairs! These days
Hi Wygella - just thought I’d let you know I’m trialing your “veg out” 🤣 strategy. Fatigue and headaches hit me over the weekend so I’m giving it a go. I spent most of yesterday just sat on the reclining sofa in the conservatory watching birds, squirrels etc. ie Vegging out 🤣. Woke up this morning after a reasonable sleep feeling less stressed. So I’m having another veggie 🤣 again today. So far so good. Thanks for the tip. - Remos.
Well done! Seriously. For those of us that find stopping and vegging hard, it takes practise to do it without wanting to jump up and do things but a couple of days, then building it up again I find works for me. And your conservatory sounds the perfect place. Enjoy.
Hi Wygella - just so you know the fatigue finally lifted yesterday (Saturday). It was with me for about 10 days. Ensured I had regular veggie days throughout which I think was a key part of my recovery. Not very nice when it happens but at least I have my coping strategy in place now - Thank you.
Ouch. That’s a long stretch but as you recover you may find you’ve taken that next step up. Veggie days are also a good idea. I do have them but not as often as I should. I’m so glad you’re feeling better. The good thing about fatigue crashes is afterwards things seem so much brighter!!!
Second reply. Thanks for letting me know as I’ve been wondering how you were getting on. I’m going away with husband and sister just for three nights to a lodge but it’s as exciting as a big holiday adventure used to be!! 😊
That’s great. Enjoy it. We’re also looking to get away in the UK later this year. We haven’t been on holiday since I was diagnosed last June. Only just starting to feel up to it.
I know the first time I went away the stupid anxiety kept making me try and postpone but when I do go away now it’s always good. Only bit of advice. First time choose somewhere easy and build up! 😊😊
Also, as Old Gnome says, you do learn to roll with it and they do honestly get less severe and less frustrating and depressing. We all learn our own coping strategies but the one major thing we all have in common is stress and overdoing it = a few rubbish days.
Thanks for your reply. Always good to hear from you. I think I need to work harder at having a “veg out” on the sofa downstairs. As long as I can stop the dog jumping up and joining me. She always seems to know when I’m having a low.
As you point out I think what is key for me at the moment and what is missing is a coping strategy which works for me. So I’m going to take pieces of what everyone has said and see what works.
As you allude to, my stress levels will only reduce once I have an appropriate coping strategy in place. I think stress is still the major problem for me just now brought on by panic as soon as I feel anything untoward happening. Lot’s of things for me to continue to work on but this site is such a great help. Thank you.
I think the coping strategies are the key. It took me ages to find what works. Actually I had an absolutely downer at the weekend. Had a very stressful 10 weeks with an eye op and my daughter and husband having to leave China after 17 years and in the end having a 4 day window to get out. All is well now they are in home, op a success, but hence the stress comedown.
So had the longest fatigue stretch for a long time having been all positive on this site! But I honestly know now that I just stop. I have to. I try and make sure I physically move round the house and garden (which is very small!) but otherwise I try and turn my brain to neutral. And my body to sloooo Do some breathing when the anxiety rises. Watch easy tv and I am so grateful I can read books easily again so a life saver. I used to feel guilty cancelling things, or leaving everything to my husband to do, but I don’t now. I know I need to be selfish because if not it’s worse for others in the long run. To cheer you up. This was long for me. It started With Saturday brain fog, Sunday wipeout and Monday recovering. To cheer you up, I didn’t spend the time scared E was coming back, and I knew it would pass. Also to cheer you up I now feel better than I have for for nearly 4 years so sometimes these crashes work to bring you up a notch.
I’m sorry you’re on this road now. It is a long and challenging one but as I keep saying, it does get better, we cope better, our brains and bodies learn and improve. Take care.
Goodness - what week you’ve certainly had. I got a bit breathless myself just reading about it 😮💨. So glad your daughter and her husband found it home safely after only being given 4 days notice to leave 😳. But sad to hear you’ve been having difficulties not too dissimilar to mine due to all the stress. I hope you’re started to feel better.
I’d been doing so well over the last few weeks that I really thought I was on an up. Never mind. I’m going to take you’re lead in accepting that this has just been a glitch. As you always say - “Things can only get better”
You also mentioned a number of areas that you focus on to help you which I think I’ll try. Haven’t watched much TV or read a book for over 6 months but maybe I’ll give them both a go to see if it works.
Once again you’ve given me yet more ideas on which to build a coping strategy as well as comfort and support.
Thank you.
Remos
PS Your husband sounds like a wonderful man. I hope his cooking is as well 😊 .
I’m very lucky with my husband. He has understood issues better than many and has learnt to leave me alone when I have brain overload and be there otherwise. (He is also a great cook. Bonus!).
At first, when I came out of hospital, all I could do was sit, doze or listen to audio books. But after a few weeks I could watch tv with the sound quite low. My eyes were badly affected at first so people bought me large print books to start me off. First joy. I love reading. After about 5 months I progressed to books and never looked back. My reading is a lot lighter than it used to be but when my brain really has had overload, or when I have a crash, reading and tv really work. I felt guilty stupidly at first but now I know I’m helping me heal quicker I embrace it on the downs, knowing on the ups I’m able to do and enjoy so much more.
You will find something that works for you too. I hope this helps. Also that your next up is starting or will start soon.
Second reply. Tuesando said about a journal. I don’t manage every day but most days now and they’ve been invaluable. I just hope no one reads them too closely as I’m very honest in them!!!! 😊
I started a journal this year and so did mys husband. He kept a diary of every day I was in hospital, which has been really interesting to read.I want to keep at it, but we always seem to do it last thing at night and I struggle because I just want to sleep!
Thanks for your good wishes.I think stress increases with E so like a vicious circle. Dr put me on Amotripolene for nerve pains as a result of E. Only tiny dose so not as anti depressant.Side effect is sleepiness so take at night now.Might be worth speaking to your dr.I also found my true friends stepped up when I was ill so really helped me.Even my ex boss turned up with flowers and sent her love and best wishes.I think I ve become more self aware since E and more grateful for those happy moments.Love to you all.x
I was also prescribed low-dose amitriptyline for neuropathic pain and sleep problems. I hope it works better for you than it did for me. It masked my symptoms and made me boom-and-bust more than ever. I’ve trialed many prescriptions, but I’ve decided less is more for me. Doctors are much too flippant in prescribing drugs. A simple, stable routine can do wonders in controlling symptoms.
And you’re absolutely right about becoming more self-aware and grateful! E didn’t steal everything from us.
Hi Remos, I’m not a sufferer, I’m a Carer but I just wanted to say I am sorry you are going through a bad time. I wish you all the very best and hope you feel better soon. Take care.
This is a dreadful condition for both carers as well as suffers. Difficult for suffers as it’s such a long and lonely path. Difficult for carers who often get a feeling of helplessness not knowing what more they should/could do to offer support.
Thank you again for thinking of me and I hope things are improving for you and your friend.
Hey Remos do you keep a diary? Maybe just a few words every day with a rating of the day (1-5)? The reason I say it is that it has helped my partner seeing that not all days are bad. When we are at our lowest it may be difficult to remember that is wasnt always bad. By looking backwards in your diary you’ll notice that you had good days in the weeks before. It may help you and give you some hope when you have bad days. Bad days will always come - we just need to go though them and wait for the next pearl on the string.
I agree. I’ve kept a journal once I’d learnt to write properly and could read again. Flicking back sometimes shows you just what a long way you’ve travelled.
Hi Tuesando, just been reading through this post again and realised I hadn’t responded to you - sorry. I agree with your idea on the diary with a rating on each day - I’m using “poor, reasonable, good” thank-you. I also agree that the answer is to get through the tough days and appreciate the good days when they arrive. I have now put a coping strategy in place based on some the ideas in this thread so I’m hoping this will help.
Thank-you and I hope all is going well for you and your partner.
Thanks for sharing and I've been there. Time and time again I have been there. No matter how many times I say to myself I'll be more mindful next time, my body just crashes and I realize I just have to go with the flow. It's like waves and it's really up and down but the good thing is we get it! We all know how you feel and I also end up bursting into tears when it all gets too exhausting and that's ok! It's our body's response and that's okay.
I hope you feel better soon and this too shall pass
Thanks for your reply. The fact that people on this site “get it” is amazing. Most people who I talk to both family, friends and even clinicians simply don’t. I can see it in their eyes. They’re all trying to be as supportive as they can but I know they’ll never really know. I suppose I hope they never will. But that leaves me feeling even more lonely. That’s why the ES is a lifeline.
I’m feeling much better now apart from a little fatigued which is always frustrating. I guess as you say I need work on being able to “go with flow” safe in the knowledge that this “too shall pass”. I’m not there yet but I’m working on it.
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