CFS and associated guilt

Brain and nerves
1

Hi there

Im a new poster on here.  

I finally got diagnosed as having CFS about 3 years ago now, having suffered with the symptoms off and on since about the age of 19.

So I guess Im lucky to some in having an official diagnosis with a letter to prove what I already knew! 

My problem now is that I live on my own, have no real support from anyone, and find I am really struggling, mentally, with the condition.

At the moment, I seem to be having a one reasonable day, ie; I can do some things, to one 'pay back' day, where I feel totally shattered, and can do no other than 'give in' to my desire and need for sleep.  Typically I can turn my alarm off at say, 8am and sleep pretty much straight through to gone 6pm or after.  

And then, although I have had little choice but to sleep, the guilt kicks in having had yet another comparatively wasted day (to me anyway sad wink

Plus dealing with appointments which I try to explain I may not necessarily be able to make it, only to be met with, "well it is important you attend" and me worrying about possibly sleeping through, thus not being able to let whoever know I will not be attending and why, and then them thinking that I just can't be bothered to turn up or let them know which is not the case.  

Its like I say to people I have CFS, and they nod their heads, but then only bother when it impacts on them, as in me 'letting them down' when I have tried to explain and let them know in advance that possibly I may not be able to make appointments.  

I can beat myself up about it (and I do) without others doing it!

I know I shouldn't and its irrational, but I guess Im anticipating what others will say (and do) when I am unable to do things, despite trying to explain its not my fault.  If I cant walk around my flat, I cant get dressed, do my hair, and walk or get the bus somewhere, I just arent able to do it.

Are there ways of explaining to people so I dont have to face their wrath!! 

 

2

Hi there,

Are you in the UK? If so asked to be referred to cfs/me service. They have a set of booklets that explain the condition etc and one is for friends etc that is helpful also, there is the me association and they also have leaflets to explain the condition.

I know it's hard to not feel guilty sometimes but, it really doesn't help. You didn't ask to be dealt this card and no one would want It ifthey knew how debilitating it is.

All you can do is be gentle with yourself, rest and pace things and do things that you enjoy when you can

Hope this helps

Beverley

3

Hive  There, I also used to feel guilty, but realised that made me worse, so now I refuse to feel guilty, after all some people have sugar diabities, which people will sympathise with, but with cfs  it is difficult, i suggested my family reathid up on the internet and this they did and are now great,

i also live on my own, but have learned to manage the illness, i do what i can when i can and do nothing when that is the only option, this works for me,

One of Beverely's pieces of advice i took which was 'be gentle with yourself' that helped me so much , so tha nt you Beverely, 

My only advicce would be try and manage il lness as opposed to it managin you.

good luck and is a great forum to learn from

4

Hi tomkitten,

I resonate so much with what you say about other people not understanding.  I have definitely felt alone in this.  That is why it helps to be on this site and to find out about others who are struggling with the same thing.  So thanks for sharing.

I have a couple of comments.  One of them is that I have found that those who are in life for an extended amount of time start to understand better over time. Eventually.  This illness is so crazy that when I have tried to imagine if I had never been struck with it and I had had a friend who had had it, I think I would have had a terribly hard time understanding the illness.  

  

Something else.  Has your doctor told you that you have to stop pushing yourself?  Tor rest when you need to.  I have found that since my doc told me that, it helps for me to pass that info on to the people in my life who are not understanding.

Also, I just about two week s ago stopped using the chronic fatigue syndrome term when I talk to people.  Instead I use Myalgic Encephalomyelitis.  It seems to make a huge difference.  I think that chronic fatigue syndrome sounds like your just a little fatigued all of the time!

Best wishes!  And you are not alone!

5

I can totally realte to your story as I was in the same boat. The problem is that because people can't see what is wrong with you many don't understand and never will. I gave up trying to explain to people and learnt to say NO. 

The best way for you to deal with issues at work is to contact the Occupational Health dept who will then explain to your manager what they can and cannot expect you to do. 

If you have 1 good day and 1 bad day then you are doing too much on your good day. Scale back what you are doing on the good day (I didn't do this for years) until you can have 2 good days. Then work from there. 

I compare it to someone learning to run a marathon when they can't even walk. Does this method work, well for me, I cycled 42 miles the other day. Just over 2 years  ago  a tiny bit of cycling would put me in bed for days. 

best of luck, pace and learn to say No and there is a light at the end of the tunnel 

6

Hi and welcome,

Beautifully put Beverley. 'Be gentle with yourself'. I couldn't agree more.

This is a demon I know well. You have to stop beating yourself up. Don't set goals for yourself for a while because when you miss them - and it will be when, not if - you'll feel bad. Instead, at the end of the day, appreciate what you have achieved, even if it's as simple as getting up, rather than what you have not.

I agree with the other posters as well, you are doing too much on your 'good day ' and suffering for it afterwards. Be patient. The temptation is to attack everything on your To Do list when you feel you have a bit of energy but it's not worth it.

If you have been diagnosed with ME. use the term ME. Even some of the doctors who coined the term CFS now regret it. It's a catch-all which muddies the waters.

I find that simplicity is key for people. They need an idea they can grasp. Explaining ME. is not simple but The Spoon Theory is an excellent metaphor. Ask your friends and family to look it up online. It may help them on their way to understanding and supporting you and your health.

All the very best,

xXx

7

Hi again

Firstly thank you so much for your quick and helpful responses to my post   It does so help when you are discussing such things with people who just 'get it'!

I was referred to the CFS/ME service by my GP, after my initial diagnoisis. Because it was quite far away from me, I had to have phone appointments.  They advised me about pacing, and also I got sent a relaxation CD to listen to.  

At first I didn't say anything to people, then I thought I would try the approach of little mentions about it, so they were aware that I wasn't just being awkward.  But I do find that people often seem to forget, and I don't like to keep going on about it like a cracked record.  My view is, if they consider it important, they will bear it in mind, not that Im expecting them to understand the whole thing of CFS/ME, just try to remember I have a valid, medical reason to stop me doing things, even though its not visible.

I've always been quite hard on myself, and self critical, so find it hard to be gentle on myself, I feel a bit self indulgent!  Silly I guess, but will have to try to be bit more understanding with myself.

As you say, I guess looking from the other side of the coin, it would be easy to forget without obvious signs, and to properly understand the total, overwhelming fatigue which envelops you, and you can't always fight against it.

And the amount of times I get comments like "ooh I feel shattered too" having explained that they were up at 7am, went round Meadowhall for several hours, came back, saw to family meal, did housework, etc etc ......!!  I wouldnt just be shattered, I'd be on the floor!!

Im also aware that all my negative 'self talk' I do to myself is both unproductive and tiring in itself, so I do try to stop myself in my tracks when I start to do this!

And I do use the Spoon theory sometimes - only thing is Im wondering if theres a good general number of spoons to start off with (if that doesn't sound daft!)

I don't have a computer at home, so have to access the one at my library which is about 5-10 min walk from where I live, so if I post again, please bear with me, I will reply when I get chance (and energy!) to do so 

Many thanks again for all your replies, as others have said, it does help to know you are not the only one, as I do feel quite isolated with this a lot of the time.

best wishes for now xx 

8

Hi wknight,

I was just reading your response and wanted to say that I'm glad I read it. I am just learning about this condition and thought I would jump on forum to see what others are experiencing. I've been dealing with this all of my life with no idea what was wrong with me. Now that I've sort of come to realize it's not something I can change, but only manage, I'm starting to experiment with what I can and can't do and pace myself around that. Whereas before I was in denial I guess, and would just go as much as possible until I couldn't. How did you work up to riding 42 miles? That's great and inspiring. 

Thanks,

Steph

9

Hi again,

I too find it difficult when people tell me they're tired too. I'd happily swop this for being genuinely shattered from a long and eventful day rather than being flat out exhausted with something others take for granted.

I don't know if it helps but my local bus company has a set of free cards you can use-I have one that states I have an invisible condition. I think it's great and have considered using it to just show to strangers when they don't get it.

Before I was given the yes to cfs, my friends were telling me that getting back to work was the best thing for me and I'd sit there feeling so awfully ill and guilty for not being ok. Hey presto-when I told them I have cfs/me they stopped saying this but, some still don't 100% get it.

Glad you recognize your tendency to be hard on yourself and can challenge it. We live in a society where it's frowned upon to think about ourselves I feel and with this condition we have to or end up being much much worse.

Beverley

10

Hi wknight,

I'm shocked that you cycled 42miles! Congratulations!  I am lots better than the bedridden person I use to be, but wow!  More advice please!