I know this may sound trivial but it is a side effect of ESLD that I hope to manage better.
I eat healthily and exercise as much as I can and maintain the best sleep possible. I have booked a blood test tomorrow to see if I have any deficiencies. I like to keep occupied but I have days like today where I feel like a lead weight and really struggle. Its debilitating and just wonder if its something I just need to accept.
I have improved a lot since my discharge from hospital in February and I am no longer Decompensated but find myself hitting 'bricks walls' with my energy.
I just want to get on with life and not be defined by my condition. I have achievable aspirations but its just days like this!...
Its not all bad btw. I have positive elements in my life but today I am struggling to get out of bed.
Thanks for listening .🙏As always!
Mark
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Sadly it is just something you have to learn to live with, that's been the pattern of hubbies life since diagnosis. He is always tired - he has two types of days really and these go:-
(1) Merely exhausted but he can push through it and do his exercise and makes the most of the day.
(2) Absolutely, knackered when he is physically and mentally too tired to do much and will sometimes need bed rest. Cognitive function all to bits and just not well.
Ironically the better nights sleep he has the worse his fatigue levels during the day so number 2 type days follow good nights sleep and on nights where he's been intermittently wakened or awake from about 4 am he tends to have a better - type 1 type day.
It means we struggle to plan stuff but when he is merely feeling 'tired' we make the most of those days.
He fuels properly as per dietician instructions, listens to his body re. rest and just gets on with it, it's all you can do and you seem to have a great attitude towards it just like him.
Hi Katie, Thanks for your response. Your knowledge and understanding is always really helpful.
Your explanation of the (1) and (2) days is bang on! I am having a (2) day.
Dealing with frustration and acceptence is new for me and sounds like your husband and yourself are doing great with it.
Another new thing is telling people that I physically can't do things which has a mixed response??...I have always been a 'yes' man. I do challenge myself to extremes sometimes and feel physically and mentally beaten but I guess it is a marathon and not a sprint!
It takes a while, getting through that initial mourning/adjustment stage when you are coming to terms with the new you as compared to the previous you and it never really goes away 100%. My hubby used to be a long distance walker regularly taking part in endurance walking events - 100 mile in two days, 56 milers in under 10 hours etc. Adjusting to being the guy who on some days can manage a mile at most takes a lot of doing. But, on good days (type 1 days) he can really push himself and this year he's gotten upto about 16 miles.
In a couple of weeks time we are heading to Teesdale and Yorkshire Dales so he fully intends on re-aquainting himself with some of his old favourite stomping grounds in the North Pennines and the Dales and it'll be me with my arthritic knees that will no doubt suffer more. I am being threatened with a trek up Cross Fell - Englands highest top outside the Lake District.
You'll get there, just don't let the thing beat you. 7 years ago my hubby was just being put on the transplant list and he's been 6 years delisted - he's determined it isn't going to beat him, a lot of living with a long term condition is adjustment to the new you.
Best wishes,
Katie
This is hubby and I atop Ayrshire's highest hill/mountain Shalloch on Minnoch on 7th May this year. In 2016 (the year after he was delisted we did the hill you can see behind us which is the Merrick - highest hill in Southern Scotland (2,766 ft). Determination to keep on keeping on!!
Living with cirrhosis - hubby and I atop Shalloch on Minnoch (2520ft) Galloway Hills
Hi Katie,Love the picture btw.😊 It gives me encouragement to know you can live with this nasty thing! 100 miles in two days!
I am very impressed but 16 miles with Cirrhosis even more so!
The mourning and adjustment stage is a good description. The coming to terms with the new me is fluctuating but work in practice. I think my old self wasn't 'much cop' anyway!..😁
Silly Billy 😸 I am sure that the other you was great, may be slightly lost.
It doesn't stop amazing me the support from this site. I'm also going through this process and it breaks my heart that I am not able to move the way I could.
I was a Classical ballet dancer and teacher. I'm still in show business 🙂 as Attila the Hut's stand in. I'm hating it 🥸🦎
Hi Charlie-legs,lol ..I have always been slightly lost!😉Sorry to hear of your mobility issues and hope they will improve in time!
Wow...a Classical Ballet dancer... hence the Charlie-legs title?. Try not to be despondent with your current role. Who knows what is ahead? You have an obvious talent which you need to hold onto!!.
I struggle with being an artist but I am gradually getting back into it. I stopped a few years back and have 'lost' myself in the process. Keep going..🙏
Lol...Love the name!..An artist?...Yeh I would say that I am. Even 'leaving' my practice, my art never leaves my consciousness, it can drive you mad sometimes. I need to put my madness onto canvas!..😊
As AyrshireK has suggested, fatigue is very real, and learning of ways to cope is the best plan.
I have attached a link which may be useful to NHS inform (NHS Scotland) information regarding fatigue. It comes under the sub context of palliative care, but it is generic advice for any chronic condtion,
Hi it is unfortunately something you have to adapt to, getting your bloods checked is a good idea I have iron tablets, I still have days like yourself though, but as I'm reminded of my stay in hospital my family remind me of how very far I have come, I'm sure it's the same for yourself, You take care xx
Hi Tia2021. Thanks for getting back to me.Truthfully, I very nearly passed away in February. So I do need to ground myself sometimesand accept the rough days. Because I look better and the transplant team said I don't need to be on the list 'now', it is difficult for other people, especially my son who yearns for the old me back. We are close and we do chat but its a matter of doing the right thing for him and for my health. Getting a 13 year old to understand is tough because I don't want to worry him about it. All he knows is dad looks better but still 'gets wonky sometimes'. 😁
Hi Mark, it's a real struggle on the days when you just can't move.... I think as long as you are maintaining a healthy diet and getting exercise that this is completely understandable... I wish you all the best on your journey, the best advice I can give is simply to keep progressing and moving forward taking the good stuff with you
Hi Cate71, thanks for your reply. I so want to progress and take the good stuff with me. Somedays I think wow I am getting myself back and feel a huge release and sense of well-being....then bosh!..the next day I feel rough and not managing even simple tasks?!.. Anyway, I wish you all the best back on your journey.Mark 🙏
Hi Mark, the fatigue is a **** that’s for sure. Ive found ‘spoons theory’ helpful for dealing with it. I make the most of the days I’m not knackered and don’t beat myself up on days when I am. I’ve found meditation really recharges my batteries, even more than sleep. I hope this helps.
Hi Readlots, fatigue is definitely a ****. Thanks for the 'spoons theory' I will look into it.🙏.I do beat myself up and its not productive. I have a 13 year old son that I adore and I don't want him to see my struggle. I also have a mum who has a terminal condition whom I care for when I can. Life is tough and Cirrhosis makes it so hard. But I am still learning and really appreciate the feedback on this forum.
It’s really hard caring for someone at the end of life, particularly your Mum. I’m in that situation too but without a 13 year old as well. It’s emotionally as well as physically exhausting, no wonder your fatigue is flaring up. People keep telling me to look after myself, as I’m sure they are telling you, but when exactly? If I stop I’m asleep!
I would say that showing your 13 year old your vulnerability won’t do him any harm, it may even make him a very compassionate and empathetic young man. I’d suggest letting his school know what’s going on in the family so that they can offer support. I’m not an expert just a Mum.
Thanks so much for that. Ironically, I spoke to a close friend this evening who suggested telling my son. I will be chatting to him over the weekend. He is very grounded for his age and would benefit from the truth. This is all new to me as I was brought up very differently where 'you just got on with it!'. But I will break that chain. Sorry to hear your mum is poorly. It is definitely draining, emotionally and physically. Remember to look after yourself too 'Readlots'!
I don’t know if this will help. nhsinform.scot/care-support.... Good luck, I’ve a feeling that your son will amaze you, after all I can tell that he’s got an amazing Mum Just from your posts.
My partner was diagnosed with cirrhosis in October 2017 and they didn't think he'd make it when he was admitted. He got through the very ill phase, thankfully, but he was unable to walk very far for at least 6 months. Now, nearly 4 years on, he doesn't have any symptoms or tiredness and can walk 4 or 5 miles every day with no problem.
You may need to have a bit more patience with yourself and not worry about the fatigue. You've come a long way in 4 months and your body might just need a little longer.
Thanks Kyia. I am so pleased for you and your partner! That is amazing!..there is hope yet.!😉 I sometimes feel 'is this as good as it gets?' and to be honest, I am my own worst enemy!. I find myself hiding my struggle from others and burn myself out.
You are right about patience, I need to find some. 🙏I think it is a case of learning what I can and can't do. Thanks for your reply!
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