Could really use some positive reinforcement, folks!

Brain and nerves
1

CFS, ME, SEID, whatever it is. Been dealing with it, trying to stay upbeat, even given advice to others. But I've got to tell you, having a really bad day today. Well, longer than that but....

I guess I've just got to vent and so here I go.

I'm 53 years old and my life is just passing me by. I cannot resign myself to feeling like this for the rest of my days. Trying to be as proactive as I'm able most days, Well, some days, but jeez it just seems so ridiculous to have to DRAG yourself through the day.

But then I look at other people who have far more to overcome than I do, and I feel guilty for feeling sorry for myself. I look at elderly people with complete Awe because I see so many of them out doing what I am not. I get angry at myself and think that maybe I'm just being a wimp, but I know that isn't the case. I don't need counseling, or antidepressants, BTW, I guess I just needed to write it out. Just so tired of bein tired, and I know about pacing, acceptance and all that but I just really hope for a miracle instead. Anyway, I end this day as I do every day, hoping for a better day tomorrow.

2

I hate the boredom of days like that and can only offer what helps me in no particular order!

Remember that not all days are like it.

On those days I've found laying stock still in silence for half an hour gives me enough in the tank to be able to read or watch something good - maybe a TED lecture online.

Thankfully I've a wonderful wife who listens. Other friends too, though we also talk about other things as well. Sometimes I can be monotonously dreary and it's not fair on them.

I have a range of low energy things I can do - variety helps! From listening to music, the sounds in the garden, watching TED lectures, NETFLIX, knitting, sitting and weeding, going out on an electric bike....

But I still detest the times when only laying flat will do!

3

Hi Sassylass;  TOTALLY agree.....I'm in one of those frames of mind, too.....soooo pis....off................and just want to know that I can DO something, without feeling rotten the next day.................and just want to stay  in bed all day....but know that others don't understand that..................xxBron

4

I admire the sense of peace and acceptance you seem to have going for you. I can't seem to find that for myself. But I'll keep looking. Thank you for you.🍀

5

I know, between the frustration with your exhaustion, the anger that no one really "gets it", and the guilt of feeling like you should do more, and then the shame because you see people who seem to be dealing better with situations so much worse.....aaaaaghh.

Tomorrow's got to be better, right.?

Actually, it is tomorrow isn't it? 12 :34 am My time. Guess I'd better get to sleep. I sleep for 45 minute to 2 hr intervals, lately, which sure doesn't help matters.

Keep on hoping for better days, Bron, my sister in sleepiness!🌙

6

actually yes Sassylass; the depletion of sleep, I think, is when I start to "get frustrated/angry/question myself...generally Just down"....like ALL of us....the constant tiredness/sleep deprivation is the main cause I feel for me, to start the "self-pity".....????? as for the "thoughts that others are coping better",    I think is Only a Facade that others put on when either blogging/out in public, for we are all human, and I am yet to meet someone who "is happy all the time"....they don't want to bring us down, further, so do their best to be "happy"......I've very much got the proof that these same people, also have the same issues, whether ill or  not...it's life......Bron

7

I agree Bronwyn, some of the most 'up' people I have known have been troubled souls... merely good actors/actresses. Mostly people's expectations of me can greatly exceed my capability, but I do what I can when I can and sod them who don't like that! But if having a rant on here helps sassy, you go for it, when I feel bad sometimes reading posts on here helps just to reassure myself I am by far not alone xx

8

Well don't read too much of that into me!

Here's a brief history, two years in:

I used to be very active and got ill overnight, one month in acute ward.

Previously, a good hard work out solved most minor things - but I quickly discovered that hardly any exercise wiped me out.  So early on before I had learned that, I made myself walk slow for two miles.  The next day was bad, the one after, worse.  Ten days before I could leave the house.

After a year, I'd finally got it.  If I did too much (and that might only be walking slow for five minutes) I got deeply drained physically, mentally, emotionally.  So I take great care to avoid that.

Obviously, inactivity leads to physical downturn even if you are healthy.  I was getting weaker, but worked out that the two worst things were being upright, even sitting at a table - and walking more than ten minutes even really slowly.  That's no good for physical condition.  So I started some 20 second strength exercises, bumbells, doing a plank, sitting against a wall.  I think it's stopped me getting weaker.

Then somebody taught me a hard but simple lesson.  My reaction to a difficulty is often more of a problem that the difficulty!  So I started to watch my emotions and attempt doing stuff to make them better.  I aim to enjoy what I can do without dwelling on what I can't.  But even then, if I've got too tired, sometimes only a little cry works!

So, I enjoy watching clouds, feeding sparrows, growing things from seeds, even watching (don't laugh) indoor bowls while knitting.  It's totally different from my previous stuff like cycling flat out for hours, or walking moorland - and I'd love to be able to do those things again - and earn a living.  But I can't - so I try to enjoy a range of little things every morning and every afternoon.  I've also found out drinking water most of the time helps me.

But, I still do have bursts of frustration and get annoyed easily.  Saying sorry is required too much, too.

9

Ah Sassylass, you will have realised that you are not the only one!!  I think one of my difficutlies is in really grasping that CFS is a valid diagnosis not just a label that says 'no-one knows what's wrong with me'.  There are times when I feel so ill that I'm thinking 'surely there must be something wrong with me' and I am not satisfied with the CFS label. And this is after living with CFS for over forty years! Although mine does seem to be hormonally rooted/affected.... my pituitary gland doesn't work very well. In many ways I am much better now.... even ventured to take a part time job two years ago (after 15 years on the sick), and I'm still managing it. I sometimes have to use my holiday to cope with relapses or dips in my condition, but I couldn't have done this fifteen years ago. But working (just 15 hours a week) takes all that I have. I'm fortunate that i don't suffer from boredom..... on bad days bed rest feels so welcome, and if I'm in so much pain or discomfort that I need distraction, I listen to talking books. Through this forum I'm realising how many of us there are 'out there' battling through our lives with CFS/ME, and its good to know you are there.

10

Dear Sassylass

That at anyrate is a brave name you have chosen. Yes, I have been there when I was in my forties. On a broiling Summer's day in Devon I was huddled in pulovers and greatcoat, unable to keep warm and unable to keep up with my father-in-law who was in his seventies and not very well. 

You are right about no couselling and no antidepressants. This CFS/ME is real and cannot be talked away and there is no evidence that antidepressants do anything but complicate a bad situation. Patience, intelligence and dogged determination over years are the necessary weapons. Finding and eliminating triggers to the condition is very difficult but very very important.

I wish you well - mostly it is up to you

11

Before I was diagnosed when I hadn't a clue what was going on I felt so horrified with myself that I must be an incredibly lazy person. And even now I care a lot that I must appear that way to everyone who either doesn't know what is wrong with me or who chooses not to understand. I shouldn't care, the important people in my life are there for me, but I do. 

It's about enjoying what you CAN do rather than getting upset about what you can't. I KNOW it's easier said than done. Sometimes it's relative to other things. E.g. I've just got back from the doctors because I have a small lump in my armpit. I've been wiped out with anxiety. But it's just a sebaceous cyst! Right now this second in the aftermath of my relief I'm thinking, actually I'll take CFS instead of the cancer this could have been any day. But I know another time the old frustrations will rear their ugly heads again. I do try to enjoy every little thing that is still possible for me but freely admit I don't always succeed.

12

Yep, ChrissyC,

I have had a few medical false alarms myself so I know what you mean. Suddenly everything looks not so bad to you in that rush of relief, doesn't it? I know that I promised myself that I would keep on feeling that gratitude and new found optimism forever! In the wake of my good news. Easier said than done. Time and troubles faded that feeling, and I'm glad you reminded me of it. I'm also happy for your good news.

13

Hi georgeGG,

I remember admiring your persistence in tracking down allergens in your home. So ironic that trying to figure out why we're tired is so totally exhausting.😴😷

But you give good advice..."Patience, intelligence and dogged determination over the years are the necessary weapons.".....

Well, OK, as long as it doesn't take too long!😃 Sass

14

Ah thanks 😀. But I suppose it has to fade in this way or else it wouldn't fade when something bad happens either. You know how time fades something nasty and makes it more bearable? Has to work for both respects to happen at all. Eh we're all entitled to wallow occasionally. Having each other here really does help doesn't it?! Hang in there Sassylass X

15

Hah! That irony, SO true 😀

16

So cruelly true. A committed helper is a tremendous boon and essential if you have brain fog. Wishing you well.

17

Oh, I agree with you.  This have been a truly horrible summer in the Southwest.  Instead of being hot and dry, it is hot and muggy.  I don't think I have ever hurt as much as I do now.  Last week, I laughed (cried?) because an 80 year old woman who is disabled is able to do more than I can at 43 years old.  My husband held my hand.  I keep hoping that the symptom deterioration that I am going through this year is temporary and that I will bounce back a bit.  I am scared that I am getting sicker.  Hell, if I get any sicker, I'll end up in an electric wheelchair to maintain any level of pacing.  It is total crap. 

I really understand where you are coming from.  This disease seems to take away our lives and our ability to enjoy life.  I get so frustrated when I am so tired and in pain that I can't even read a book or watch TV without making things worse.  I want a CURE!!! 

18

Aw I'm so sorry you feel this bad just now. I don't know what to say, certainly won't bother you with platitudes. Just I really really hope you feel relatively better fairly soon. And keep talking to us when you can manage it.

19

Without a support system of any kind. The worst part of this illness for me right now is having a daughter who is 15 and missing out on a lot because of my fatigue. I refuse to really tell her the whole story, as she stresses enough over the fact that I am older, 53, and we have only each other. It terrifies me to read how debilitated some of us have become. I honestly did not know how severe it could get, and I was diagnosed with CFS 20 years ago. I am still mobile, but slower, and the fatigue is horrible, but in light of some of the stories I'm hearing I don't know if I should be feeling fortunate or scared to death.

20

I bet the flipping menopause doesn't help either. Sympathies on your daughter although you are NOT that old at all of course. My best friend has a JUST 16 year old daughter, like you they have only each other and like me she is coming up 57. The daughter gives her a hard enough time just for the menopausal symptoms she has (no ME) so I think I have an inkling what it's like for you.