Well, exactly 4 years ago, I was shipped off to the local hospital via ambulance. On April 16, 2018, my encephalitis journey officially began.
It has been a roller-coaster ride of sorts in many, many different ways. This past Tuesday, I went to my GP, and per the report: "He is improving, but VERY slowly."
While it appears I am making positive progress, it also appears I have hit a sort of plateau. I am inclined to believe that I am now as good as I will ever get which is sort of disappointing.
Doctors' visits now are more for verification purposes of ongoing disability, which are necessary to maintain my SSDI benefits, as well as long term disability benefits with an insurance company. Gone are the sudden strides of improvement and such strides are not expected. Never again.
Tomorrow, year number 5 officially begins. I believe I will spend it doing an analysis of my total situation, and seeing if there are any long term changes I might consider. While I can't do a lot of what I used to be able to, I believe life can be significantly better if I make some major changes. Unfortunately, these changes will be difficult and most likely very expensive. I really try to maintain a sense of humour and good spirits, but oftentimes, I now feel like the last man on earth. Quite alone.
I would like to take this opportunity to thank the Encephalitis Society for all of the good work that it does. And thanks to all of you who have responded to my posts with such caring and thoughtful replies. We have also shared a lot of humorous discussions, and I have learned a wealth of knowledge from all of you!
Here's to another year of improvement for ALL of us, no matter how slowly it occurs!!
Happy Easter, as well!!
OldGnome
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OldGnome
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It must be so hard to feel like "that is it" with regards to your recovery. I wonder though if in letting go of that expectation/hope of improvement, that daily search for something returning, you may find yourself relaxing into what may now be your "normal". And I hope with that will come a sense of relief or acceptance.
My experience is a very different one, not being the patient but instead the wife of one, but this is what I hope for my husband eventually. So I hope I am not speaking out of turn in wishing this for you too.
Thank you every_cloud, it certainly is not an easy road to travel, as you well know, even though it is your husband who was afflicted with the ailment itself. I remember your original post and grew very worried when he had what appeared to be a major setback. Thankfully, he pulled through and is back on course to a more complete recovery!
You do not have to worry about "speaking out of turn" with me, ever! Being the person I am, I have very high expectations for myself. I am learning that these expectations may be unrealistic, though. And this is one of the things I am having the most difficult time with.
Thank you again for your caring reply. I appreciate it more than you know.
Hey every_cloud!! I am pleasantly surprised to see that your husband is well enough to join us here as "The_Bass"!! This is really miraculous in comparison to the rather gloomy outlook of days past!!
Thank goodness he has a picture of an electric guitar to match the name. I might have thought it were referring to the fish, instead of the musical instrument! (Or perhaps a pint of Bass Ale!) If he plays a 4 string bass, then the neighbours will know he is on the mend!!
I am really happy for the both of you, and the kids, who now will have their Dad back in their lives!! Hoping that things get exponentially better for all of you!!
Hey OG! Thank you for this lovely message! I must say that when he chose his profile name I did immediately point out that without an appropriate image it may come across as rather fishy! One day soon I'm sure he'll find the time to introduce himself to you all
What a ride. I am glad you survived M/E four years ago, and it sounds to me like you’ve had a relatively successful recovery. I’ve said this elsewhere, but I don’t think “full recovery” is a particularly useful concept for those of us who were so close to death. I also don’t subscribe to arbitrary recovery timelines; most doctors don’t know or ask what really-long-term recovery is like.
I don’t think you and I will ever feel like we never got sick.
There will be lingering effects that we manage and endure. But that doesn’t mean your recovery can’t or won’t continue! You just have to help your body along with it by giving it the best food, sleep, exercise, environment, and activities possible. Which life changes are you considering? I’m not sure they have to be expensive… The simple, basic habits can often be the most helpful.
When I’m feeling low about my limitations, I make lists of what I can and cannot do, and then appreciate each item on the former list deeply and grieve those on the latter list. “This is it—FOR NOW,” I say to myself. I know for a fact that your former list is longer than your latter list. You have much to celebrate. Please remember to celebrate being alive and recovering relatively well thus far.
I do wonder if you might be at a crossroads, where it’s less about recovering from M/E, and it’s more about living with an ABI and making your life as healthy as possible, which is what everyone needs to do. Frankly, most people know what’s bad for them and what’s good for them, and most of those things are the same for most people, regardless of medical condition. The problem is that people do what’s bad for them too often and what’s good for them not often enough.
My opening line was the most important in this whole soliloquy: The only Hope we have is the only hope we’ve ever had—in Christ alone.
I totally agree with Kit - she took the words right out my mouth!
(although it brings a different dimension for me because it was the day after my first birthday so I have known nothing different - whether that's a good thing or a bad thing I don't know) I don't think I have given an anniversary a thought or whether or not I have one, for me I hadn't long come into the world really (well ok I had exactly one year pre E which is nothing really) but goodness I never had a near death experience though so I have nothing to grieve.
Enjoy the things you CAN do, try to focus on THEM . My motto's are "live in the present" and "stay positive"!!!
As Mnt2sea said your sense of humour is always a joy for all of us E warriors. 😊
Hello Paula-38 and I thank you for your caring reply!
It is truly a different scenario to not have experienced what most others have in this life. In some ways it can be a better thing, and in other ways it can be worse.
I must dig up the hospital bill, but I know I was shocked because the bill was for something like $997,000.00 USD!! I jokingly said that someone made a mistake on the bill because I was only worth 99 dollars and 70 cents on a good day! Can you imagine a hospital bill of almost a million dollars?!? That could have put me back into the hospital from the shock of the amount!! Thankfully, I had very good insurance and the whole ordeal cost me about $2500 USD.
I do indeed try to live in the present and stay positive. However, not being remotely perfect, I also can have my "down times", as all of us e-peeps, do.
Wishing you a great week and thank you again.
OldGnome
P.S. I still want the ice cream at Birkenhead Park!! 😉
Thanks for the caring reply and words of wisdom, kitnkaboodle!
As I have said before, you are wise beyond your years! I believe you are right; I may be approaching a major crossroads and soon. While I don't have the options I had perhaps 30 years ago, I have different ones that I must make decisions with.
Hope you had a great Easter and some dark chocolate, which if I remember correctly, was the only type that you enjoy for now!!
Hey OG! Happy E 4th. I loved your positive take on where you are today. Your sense of humor is always a joy. I hope as you travel into year 5 that you go gracefully with what is with deep peace in your heart. I truly believe us E peeps are truly connected due to experiencing such a rare situation. Now please that you are never alone. Happy Easter.
Haven't heard from you in a while and hoped you were doing well. If I am correct, you actually came up with the term "E-peeps"! Perhaps you should apply for a trademark/copyright and get some money rolling in?? 😀
Given the rarity of our illness, I agree that we are connected by a bond which others do not have.
I was sad to read that you’re feeling like the last man earth 😢. Please don’t feel that way. I agree with Kit in that your progress may have slowed but surely it continues.
Also, I don’t know if you join any of the ES virtual meetings. If you don’t why not give one a go? Sometimes talking things through with others can be a big help in itself. You don’t need to call yourself “OldGnome” if you don’t want anyone to know who you are. But to be honest, it would be hard to miss someone with a fluffy white beard, big ears and a pointy hat 🤣.
You’ve always offered hope and comfort to me (and others) so it’s our turn to support you.
So cheer up Old Chap! We’d all be lost without a happy you. Besides, nothing and no one can beat the worlds strongest gnome!
Godspeed on your journey. “Tomorrow will be a good day” - Capt Tom Moore.
Hello Remos and know that your reply filled me with much needed laughter; in my 58 years on this earth, I have never been called "Old Chap"!! It sounded SO British that somehow, it was like a relay of humour snapping in and forcing me to laugh!
It's no secret that I am a big fan of the UK, and all of its different sayings, customs, scenery, etc. To everyone there, it's "old hat" but to me, it's a breath of fresh air. I have learned many different things, such as the significance of "Number 6", and enjoy that show "The Prisoner" immensely! G2 once exclaimed, "Blimey!" and I used that word as much as I could at my job the following week! Being the unusual person that I am, I also decided to use "proper UK spelling" with any messages I use at work. (Favorite becomes Favourite, Practice becomes Practise, etc.) I have great fun with it, and my supervisor is wondering if I am planning on moving to the UK! 😆 I told him I couldn't afford it, and that they drive on the wrong side of the road, so I would most likely be staying on this side of the pond!
Now, thanks to you, I will have to research Captain Tom Moore. If I am correct, he lived to be past 100!!
I must resume the style and title of the World's Strongest Gnome! Thank you for reminding me, and thanks for the wonderful humour you have shared. I will have more "down days" I'm sure, but the reminder sort of picks me up out of the rubbish bin of sadness.
Hoping that Easter was great for you, and looking forward to sharing more tales, be they full of humour, or to share your times of sadness.
Always there to support you and the rest of us e-peeps!
OldGnome
P.S. I must make a better effort to get onto one of the virtual meetings. Will have to see if I have a spare King George III costume to replace my gnome attire.........
As always I read everyone else’s replies and I have to agree with them all. My 4 year anniversary is on 8th August so we’re on a similar time line but as we all know now no one person is the same as another, but we have some common things happening, like the fatigue, the unexpected crashes etc. During those times it’s really hard to think we can move up again and then we find we’ve taken another little step.
I don’t think I will ever go back to the person I was, but I am learning to make the most of who I am now. Not always. Sometimes I’m really down when the fatigue and crashes happen but like Kitnkaboodle says, don’t think this is your final plateau, more a stopping place to your next step of growing. You’ve cheered us all up with your posts, our turn to rally round and cheer you on.
Interesting that we are fairly close in recovery time, and that our remaining problems such as the fatigue, and crashes are the main ones. It does indeed sound like we are both learning to make the most of who we are now. (Although it sounds like you are doing better at it than I am!)
My latest medical reports indicated that my "secret long term plans" would most likely not be happening. I was planning on being able to "ramp up" my working hours, eventually being able to return to work full time. There is a lot of freedom in being able to do that and although I am grateful for the SSDI benefits I receive, I feel like I am at the government's mercy, which in reality, I am. And I don't like that one bit. I have worked since I was 13 and am not accustomed to being fiscally dependent on others.
It is said that life without hope isn't worth living. The reports sort of took my hopes and essentially incinerated them. However, I must realise that there is more to life than an occupation, and money.
My reference to the "last man on earth" is an accurate description of how I feel. When there are no phone calls, and nobody ever visits, it's easy to fall into a state of sadness, especially when holidays roll around. Not being from the area I live in, I don't have lifelong school friends, etc here. There are a lot more details regarding this subject, but for now, this is sufficient. I am, however, actively working on amending this situation.
As I always do, I will pick myself back up, and get back to it. I suppose that's all us e-peeps can do, at times. Thankfully, I actually do have a good sense of humour, and utilise it whenever I can.
That being said, I must say that I will most likely NOT be dressing as King George III. Apparently, he suffered from a serious mental condition in his later years along with severe depression. Meningitis/encephalits is quite enough for me! (The wikipedia piece on George III is actually quite fascinating, so if you have an interest, give it a look!)
Thanks for the support and kind words, I appreciate them immensely!
Ha. No we are in a better place than poor George 3!! His was a real bummer to work with!!
I do understand the working thing. I was lucky that I had retired from actual a fairly high job, but was busy as Chair of a small charity that I also volunteered for. Which of course just stopped completely when I first joined the E peeps gang!
It took me a long time to be brave enough to start doing some volunteering for another organisation on an ad hoc basis. Ie I do what I can but I’m not committed to every week so that I don’t feel guilty if what I’m doing clashes with one of my crashes. I don’t do nearly as much as I’d like to and I do still find that hard, but actually with what’s been happening family wise it has worked out.
That long ramble was just to ask if doing something small in the community (and sharing your humour with others) might help fill the working gap? Please ignore all that if it’s a daft idea though. Keep going!!
Hello Wygella and thanks for the words of wisdom. I have taken almost a week away from even logging in here, to sort of reset my clock, in many respects.
It looks when I originally posted my 4 year anniversary tale, I also had a very bad cold at the time. I felt very badly with the head buzzing thing which was how I felt before going to the hospital in 2018! For the first time I used the COVID test, which indicated a negative result.
I know what you mean about volunteering but not really being committed to any duties or schedules. I am considering doing just that very sort of thing, but perhaps by helping out at one of the local food pantries.
As I understand it, food pantry volunteer work has its own challenges. If nobody shows up at the pantry, people might go hungry. I am not sure I want to deal with that sort of pressure and responsibility. Of course, there are other nice, but non-essential volunteer opportunites at the local hospitals. I just can't see myself handing out crepe-paper flowers to patients and wishing them well. This is usually done by kindly, grandmother-type ladies.
It's all good, though. I am feeling much better today, made it to work yesterday, and found out that some of my aquaintances from work, are now becoming much closer friends!!
So it's onward and upward again, after a brief dust-up with feeling a bit poorly! Thanks again for your support and advice; I appreciate them quite a lot!
Oooh. I really sympathise with the cold mimicking the onset of E symptoms. I had that a few weeks ago and even though I know it isn’t E. It still rattles me. And it’s really depressing too because we just think it’s never going to end. Till you wake up one morning and realise the sun is shining again and you don’t feel rubbish or anxious this day!Also definitely definitely don’t volunteer for anything that causes anxiety. Or needs a commitment when you may have a crash day and can’t get there. That just leads to guilt as well as anxiety! I’m lucky that I can just do a bit of admin work to help out either at home or at the base but it does give me something outside.
Well done for getting to work and making closer connections.
As you say. Onwards and upwards. Literally. I walked to the top of quite a long steep hill yesterday in the sunshine and obviously down again without feeling unbalanced or even wildly out of breathe. Achievement!!!! 😀👏👏
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