Bed rest?.!..Really?...;)

[Hey___]

Hey everyone. I am and have been fighting the fact that I need to rest. I was decomp nearly 2 years ago and now compensated.

My problem is this....My days are filled with working from home (artist), looking after my son, exercise and hospital visits. Sometimes I just become so exhausted but resent bed rest. Is that weird? I have tried the sofa but it's not the comfiest. I have found myself laying in bed now in the daytime for first time in ages, but it's a new one for me. It's weird that with all the other stuff going on in my body this bothers me the most . A pride thing..or I am just a freak! 🙃

Best wishes you all.

Mark

[Millie09]

Hi Mark.. Well unfortunately I'm at the stage of fatigue each day now not just after work like I used to be .

I can very easily get up in the morning, shower , feed cats , have cofee and small breakfast as I can no longer eat big meals due to acid reflux or getting an upset tummy , tidy then I'm totally done in .. the only thing I want to do is rest but 9 times out of 10, I want to sleep.

Sadly it's something I am not proud of but it's one of those many symptoms we have to cope with.

Best wishes linda

[Hey___ in reply to Millie09]

Hey Linda...coffee? Yeh I love the stuff!! But I need to moderate my intake. For me I need to accept this constant fatigue but its also getting others to understand this. Most importantly my son. That is work in progress though and I guess its just adapting and acceptance.

And the coping thing. That also is work in progress. It was never going to be easy eh?!

Thank you...and keep going!!...Mark

[Millie09 in reply to Hey___]

Can't beat a good cup.of coffee 😋. Give yourself time,

I've been on this journey since 2008 ! 14 yrs now and yet I still can't get my two sons ( both grown up I may say aged 34 and 38 ) to grasp what living with cirrhosis is like , they still don't understand how I can get so tired doing very little...

Hard slog at times I must say, but I agree with the listen to your body scenario..that's exactly what I do .

You will get used to these changes...Well sort of ,we have no other choice..

Keep positive ✨️

Linda

[Hey___ in reply to Millie09]

Thank you Linda...14 years!...wow!My son is 14 going on 40!

Take care of yourself...Mark 🙏

[Cat-B]

Listen to your body and do what it says, I have been on this journey for 8 years and still need naps most days! Remember your body is working flat out to repair the damage! Good luck

[Hey___ in reply to Cat-B]

Hey Cat-B...8 years! Well done for getting through! For me sobriety is paramount but its all the other things that come with a wonky liver!

I will listen to my body more and tell my mind to do one!..take care, Mark

[Cat-B in reply to Hey___]

That’s great as least you have the hardest bit ( for me) mastered, I still get blooming cravings! Good luck

[Hey___ in reply to Cat-B]

Aww..Well the cravings do come...but they go too. For me it was one relapse way too far for my body to handle. It's a battle but we can do it!..keep going!!..Mark

[Cat-B in reply to Hey___]

Thank you, I’m good in a crisis it’s the little things in life lol, it makes it harder to explain when I have to put myself in lockdown until the shops are closed, it’s probably a very strange coping strategy but it’s worked so far!

[Hey___ in reply to Cat-B]

Lol...the little things. I know them! But whatever coping strategy is working keep it up but hey, it's hard doing it on your own right? Reach out whenever you feel the need!

Yeh, I am not fond of shopping...many bad memories!..You are going be alright! Mark

[Cat-B in reply to Hey___]

Thanks I have my dog to make me get out and walk every day and that’s really helping, my moto is the snail wins the race lol

[Readlots]

It is frustrating, your not a freak for wanting more energy to do things you enjoy. Sometimes life with liver disease feels like work, eat, sleep repeat. Sadly what others have said is true and you do just have to listen to your body but you do get resigned to it. Read up on Spoons Theory, I found it really helpful at managing fatigue.

[Hidden in reply to Readlots]

I tried to explain spoons theory to my Son and although he was nodding his head I could tell he was thinking WTH?)

[Readlots in reply to Hidden]

😂😂😂 Don’t worry, he’ll realise Mum wasn’t losing it eventually…

[Hey___ in reply to Readlots]

Hey Readlots...lol..I think his Mum wasn't losing it! But she still does though!🤣 And thanks so much for the 'Spoons Theory,' I will use that idea when talking to my son...who will probably think 'Dad, you are losing it'!! But hey, nothing new there!🙃

[Hey___ in reply to Readlots]

Hey Readlots....I am so sorry to hear about your son and daughter's battle with depression. And yes debilitating explains how it can manifest and hold you back and hope they are both getting the help needed. I too am a sufferer and it has at times and sometimes lengthy, debilitated me throughout my life. The good news is that my son who suffers with mood swings (he is 14!) 😁 does not suffer with depression. We too are a right lot!!I replied to you by an old reply because you was linked in on JackyAM's response. What can I say..I am a technophobe!!

Take care...Mark

[Hey___ in reply to Hidden]

Hey JackyAM....I am going to look at the Spoons Theory. Has it helped you? I have a too BTW. Take care...Mark

[Hey___ in reply to Hidden]

Hi JackyAM...My son is 14 and is back from his holiday next Wednesday. The thing is I have explained to him about my fatigue and that we can do stuff on 'better' days.We made it up to London and back 3 weeks ago. It took 4 trains and 2 cabs. It took me about 3 days to recover but had a wonderful time despite this exhaustion. I will have a go about explaining the 'Spoons Theory' to him but he will probably think I am losing the plot!🙃

[Hey___ in reply to Readlots]

Hey Readlots....Thanks for getting back to me about the 'Spoons Theory.' I will definitely give it a go! Yeh, life is a bit like Groundhog Day! ...All the best, Mark

[Hidden in reply to Hey___]

Hey Hey___ (lol) It HAS helped me - when I remember to use it. I know I mustn't overdo it but there are times, like when the family is over and they stay longer than I need them to and just watching the kids wears me out and I want to go for a nap but I want to stay, and I do - and spend the next day in bed!!!!! It is amazing that we can do loads one day then just getting up is a lot on another day.

Readlots I know my Daughter understands as she suffers from debilitating depression (and I suspect she may have long covid even though she the main symptoms weren't that bad) But my son is another thing altogether. He has depression (we're a right lot!!!) but seems to be able to fight through it, so I think he thinks we should too. But maybe that's just me being paranoid - he hasn't said as much. I just have a guilt complex (and that's another story, lol)

Take Care and spoon!!

[Hey___ in reply to Hidden]

Hey JackyAM...It is so good to hear advice from fellow sufferers about the day to day grind of suffering with this 'Liver Thing'! The medical side needs to stay with the doctor's as I am far from medically trained but understand the basic concept of looking after yourself but I do need to make a few changes. I need to chat with my son(who is here half the week) about going out spontaneously and I will mention the Spoon!😊 I need to also address my diet. I was 7 stone last year but now I am 11 which is a good step forward (although my face looks skinny!..😁) But in the process of looking after my son I have fallen into old cooking habits and too much salt. Not loads, but probably too much. It is the effort I guess to make everything from scratch!

Also Jacky, you linked Readlots into your reply and I would like to do the same when replying to him. Please could you let me know how as I am a chronic technophobe!..Have have a great day and good luck with the spoons!...Mark

[Hidden in reply to Hey___]

Hey Hey___ - all you do is put an @ sign in front of their name and hey presto! Soz, keep using Hey a lot.

Yes it is nice to speak to others so long as you don't take their advice over the doc's advice, at the end of the day they do know their stuff, mostly.

Oh the salt thing is a bother, I did start off well but some things tasted so bland, and it's started creeping back in. Every time I use a bit my head is saying 'no', I guess that's a start right?

😜

[pushthrough]

Yeah I take naps now and then. Not even close to how I was though. I sleep terrible to begin with. I’m laying in bed right now during my lunch break. It’s pretty normal with our condition.