Just a few steps more each day. What's your plan to get a bit fitter? 'm going to walk twice a day, [starting tomorrow]. What's your plan? It helps to know we are all in it together
Why do people wait for New Year to get... - British Liver Trust
Why do people wait for New Year to get fitter when we can start now?
Dog tired already. Love the stockings.
3 mile a day. Two shops left or right both 1.5 miles away. Got to get off this feckn phone 1st. Not everyday weather permitting. Would have been no issues back in the day as they both sell pois in.๐
I hope you are nearly home for a rest!
Did you have specific concerns around tiredness/blood tests? Nearly everyone's got less Vit D than they need. How's yours?
Is that for me or u. Shady?
I take a small d tab now & again.
Sleep ok coffee keeps me from dosie afternoons.
Bloods ain't bin done since April for liver., However were taken for chest pain complaint Aug & were fine. Blood pressure, sats ๐ฏ. Don't know I'm living. ๐
4 you, thanks for reply. Nothing keeps me awake during the day if I feel dozy. Coffee after 1pm would keep me awake at night tho. I'm asleep usually at 10pm and awake at 0545. Seldom off that schedule.
I maybe drink too much coffee (caff & heart) & one decaff b4 bed normally 3 - 11 ๐ค
Should add I dodged blood tests when I was bad.
0300?
Flipping heck filly - can I swap with your sleep pattern please!
yes - be my guest! I'll take yours and send it to bootcamp for sleep disorder then give it back to you!
Youโre too kind filly ๐๐
Just reviewing my vitamin D. Contributes to immune system + bones, teeth & muscle. 1000 take 1-5 daily with GP approval.
I remember now why I take one occasionally because A & D are already in my Cod liver oil, whilst
researching the difference between Cod oil v Omega 3. ๐ค
Can't quite work out that picture Fili, I mean I don't shave my legs in the winter but that's going a bit far!!!
I have to walk Monty, which gets me out, but 90%of the time I have a funny turn whilst I'm out and have to get home before I collapse. I'm trying to keep moving, but some days I just can't. Maybe once I've had my TP ill be a new woman!!
That's so frustrating. We're like onions in a way. Peel off one layer obstacles and there's another, and another, and another. I find that. It takes me hours to be fit to step out with the dog. Then when I get back I'm tired and need a rest. It's hard to get out again without the dog. There's few missions I can do with her, very few shops allow dogs in. Even if I have strength to start a household job I forget what I'm doing soon after I start! You will be the same woman after the TP, the same only stronger. I hope it's soon Wassy. x
Thank you so much Fili, you are very kind!! X
Aww bless you Wass, your time will come, soon I hope๐๐๐๐ค๐ค๐ค
David
You will be Wass - almost guaranteed ๐ค of course. Please let it be soon now for you ๐ค๐ค๐ค๐ค
Milesxx
Hi Wass, hope it's soon!
I'm still trying to figure out this disease. Do you feel as though your muscles just don't get the message from you? That is how l feel after 15 minutes, tops, l can't push myself more and need to rest. If l get to the grocery store and the bank, then I am wiped out and need a nap. Wondering if this is just due to muscles needing re-conditioning?
l am totally compensated, all liver functions are normal despite cirrhosis.
In my case with PBC it's because the compromised liver isn't storing glycogen so has no reserve to release for energy after 2 hours. My blood pressure drops to where it struggles to beat my heart. A little sweet something and water revives, but I do need to rest. It's a beast.
I haven't shaved mine for 50 years!
Yip or 02:00-10:00 if I'm up early. ๐๐ฆ
That's a good number of hours. I can't imagine how bad it is to not be able to sleep at night. And Lynne lives with that all the time.
50 / 50 4hrs deep sleep / 4 light according to my Fitbit app.
Well I can't really sit on me laurels it's set for Sedentary warning every 15mins. ๐
My alarm's set for 0545. I get up and often back to bed after a cup of tea now that it's dark. In the summer I don't need to sleep so much. I haven't managed to get my fitbit to work>>>not enough tech know-how.
My fitbit Blaze went back to Amazon PDQ - hardly anything worked properly on it and sleep recording was an absolute farce!
How can even a fit bit record what you never even do tho? Isn't it like milking chocolate? Impossible
Hehe filly but it said I was asleep when I wasnโt- and it did that every night so I stopped wearing it at night. Then it would record steps when I drove. Then it wouldnโt record coming up stairs. Then it wouldnโt come โaliveโ when it was meant to, then.... see the Amazon reviews โ not a fan me. Doesnโt mean that I wonโt try again though when theyโve improved things. Or I might just have had a bum device....
I'm still asking myself why would anyone want to know! Recently my son went for a run while I walked on the shore. When he showed me how far he'd run the area included a circle round me (he didn't) and a long run into the sea. (he didn't). And he's someone who spends all day at work examining the facts of matters !
Brilliant. Some of these small devices still need a bit of development methinks!
Maybe that's why it's got 'bit' in the name - it only is a bit accurate!!
Love it!! Absolutely love it ๐
๐๐
Miles, I had a Fitbit and it was useless, sov like you took it back, but the health police complained that she couldn't keep an eye on my exercise. I then bought a cheapo one on Ebay for ยฃ6, and guess what, it actually works. Their all made in Ping Pong Land anyway, so why pay Fitbit prices.
The blood pressure reading are a little low compared to our proper one, and the best thing is you can sit on the nice comfy sofa, and just raise your arm up and down, and every one is a step ๐คฃ๐คฃ๐คฃ. Never tried the sleep function, although when setting it up on the app, it did ask for my normal sleep period. The only downside to it, is it needs charging every 36 hours.
David
I bought three cheapo ones too. One was so heavy I have never worn it, one would not charge and guess what nor would the third one! I have given up measuring for now! I do use an app called mapmywalk for the very rare occasions these days when I can walk. Before back op I got up to 0.9 of a mile and now I can do about 0.4 of a mile on a good day - three out of 21 so far ๐.
Ah well - cโest la vie, eh!
Milo
๐ง๐ง
I was wearing one the only day I ever went to Lidl's. Swatting off bugs going for my yellow top while waiting for a bus clocked up more steps while I stood still for an hour than it ever did on a good walk.
but even your shortest walks are helping you get stronger Miles?
Mais oui! I walk whenever things are ๐
Give it time - surely early days?
๐ Buy an ios apple Fitgit. ๐
My generic Fitgit was ยฃ18 from the rain forest. Works fine. ๐
I can top that Phyllis, I haven't shaved mine ever๐คฃ๐คฃ๐คฃ
David
Don't start now VainDane ... rivers o' blood...
You could wax! No blood, rips out hairs from the roots. ๐ฒ
Whoops! That was meant for David.
I have about enough to deal with without grooming myself for no good reaso. If I did so, I'd have to iron my clothes as well! No way!
What causes you to collapse? Is it tiredness or a dizzy brain thing from the struggling liver? I have the staggers a bit at times and I wonder if it is a progression of PBC collateral damage.
I think it's a blood sugar thing. That's why at this stage I should eat carbs every 2 hours. I think the sudden increase in activity shocks my body!! It's a very unpleasant feeling though, dizzy, nausea, feeling like I might collapse, no strength. Think it's part of cirrhosis, but the fatigue sudden feeling like battery has gone dead is part of PBC, I get that too!! What a combo that is!!
Hi Wass,
I get low blood sugars......I call then the weak and wobblies. I have passed out a few times. I always have toast with lots of marmalade, which stops it pretty quick. I think, along with constant tiredness and joint pain is just part of cirrhosis unfortunately.
David
I've started to take screw-capped packs of baby pureed fruits with me when I go out. I drink some from the pack so I don't go over 2 hours. (that's since I wound up in hosp thinking I'd had a heart attack.) I think it was you who told me to take sugar and water with me? I feel safer now with that in my bag!
I feel better for going out though, inspite of the difficulty. I had a shower today. I haven't had one for three days!!! That's how tired I can get. Walk or shower...
I used to eat a whole pack of glucose tablets when I got hypos before my TP. All gone now thank you - you know who!
TP is a miracle isn't it? It's not one that I'll ever have though, and there is no stopping PBC so I just gotta deal with it. I have so many aids for it now I feel like a walking one-man-band sometimes, and sometimes I clash the cymbals when I meant to tap the drum . A bit of a racket.
I would like to ask you a question but Iโd better PM you!
I think people shower too much. It's not good for the skin. Natural oils are important, and unless you actually get dirty or very sweaty I think daily showers aren't necessary. When I was young we had one bath a week, and a sink wash (pits and bits) daily.
I'm very similar to you Fili, it's such an ordeal. It takes ages to wash my hair and it never feels properly rinsed. When I worked I had a daily shower and washed my hair every other day. My head was always itchy, now I wash my hair once a week it doesn't itch the same. Just PBC itch which feels different.
X
I love showers and it stops me feeling itchy! I'd have one night and morning if Ihad energy. Isn't it just the soaps that are bad for us, the lathery ones that dry our skin. I use oat oil shower stuff and often just water. Mostly use a shower cap so I don't get wet hair, like you, no longer was hair daily! If I want to get into house-cleaning i have a shower first to waken and clean myself and limber=up! :-)Though I have to stay mindful or I go to lie down after a shower and forget I wanted to clean the house! So not having a shower is a problem for me. x
Hi Phyllis,
I walk my wee dog Teddy for an hour most days, weather permitting of course.
I am always tired, so on my bad days I give it a miss.
It's better in the summer with all the mowing of my 2 large lawns, and the rest of the gardening.
It looks like you have borrowed my Teddy's leg for your photo๐๐๐.
David
These legs are just like Teddy's. I bought her the trainers in case the snow and frost hurt her. She said she rather I throw them in the bin... along with the dogger-buggy she didn't want to ride in... Does Teddy eat other dog's poohs?
No Phyllis, fortunately he doesn't. In fact all the dogs i've owned over the years, and that's a lot 'cause i used to breed and show), have never done it, except bitches cleaning puppies bums.
Teddy is a Lakeland Terrier, and would be mortified if I made him wear boots or coats. I did have plastic onesies, for the Old English sheepdogs to keep them clean on the way to the show ring though.
To stop the poo munching, try a loose fitting muzzle, or if at home you can use bitter apple liquid to train her not to. it also works on furniture.
David
Thanks for those suggestions David
Hi Fili. Difficult for me at the moment with back and joint problems but I always push myself to do a bit more than I probably should
Alf
Alfred - you are our star walker! I wanted to get a sense of how difficult it is to move, and how people here just keep doing it anyway. Difficult to know where to draw the line before it's too late, walking wise? I'm more at risk on a good day than on a brainfogged slow day. It's very annoying trying to get the balance...
P.S. Just love those legs!!
Thank you very much. I'm pretty much in love with them myself! It's lovely to hear from you, I have missed you lately and hope very much that you are ok.
I had a really good holiday and did some good walks. Got home to discover a leaking toilet cistern ( one of these concealed ones that involves removing cupboard fronts to get at) and had to do all sorts of contortions to fix a new one in. That set me back a bit joint and back wise.
Since then we have been revamping the bathroom involving electrical work and wife holding me steady on step ladders etc. All quite a big job but finished now
Thank goodness it's finished. Your wife must have been clenching everything in case you injured yourself... Good for the pelivic floor muscles anyway, that clenching.
Sometimes your flush & sometimes your bust. ๐ฐ๐
Sometimes ya don't know if you've been punched, bored or counter-sunk...
Lmao filly! N1.
Whaaaaas that? Or in Milesese, "sorry, that's gone right over my head! You've lost me! Not that that's difficult! + appropriate iphone emojis"
๐ hahaha
N1 = Nice One
Lmao still over my head.
Google it!๐คฌ๐๐
Thanks Boot, I've been meaning to for a couple of days. It must be very rude if no one would spell it out?
Ha! I did. Reminds me what my dad would say - he who said I had a rear-end like a Brixham trawler., "that'll be a heck of a lot of laughing"
Oh! a complement, thank you.
oops. posted before I finished.
Was going to say that I'm the wrong person to ask about how much to push yourself because I know that I do a bit much sometimes! Wife always tells me that I'm my own worst enemy
It's rest up time now though
LOL Fili @ pelvic floor.
When I'm ok I try to do a little more than yesterday. Just a little each day makes a big difference after a couple of weeks. Of course there are days when it's not possible, that's when I try to take up where I left off. Some times a bit too much and that can set me back for a while.
With me it's just mainly joint problems and tiredness but I remember well the feeling of sheer exhaustion and weakness before transplant
It must be great to feel that improvement over time.
After being ill for so long and also on chemo for 3 years I was very weak by the time I got to transplant. After transplant I was too weak to be able to get in and out of the bath and I literally couldn't get myself up from the floor if I knelt down. I'm a lot stronger now and it's lovely to be able to have a soak in the bath.
It really is important to try to stay as strong as you possibly can at any stage of this illness.
Alf , can I please ask how long were you debilitated for post tp? My husband is 20 days post tp, he was very ill before only able to walk very very short distances as depleted of muscle. He is exhausted post op, just wants to sleep the whole time. He wasn't like this before they discharged him. I assume he was running on adrenalin. Coming home seems to have had a negative effect. I'm expecting a long recovery, but just wondered does this sound like your pathway ?
Hi Robbie.
I was very weak and muscle wasted by the time I received a transplant. I had been classed as terminal with no hope of transplant for well over 4 years before. I had HCC (2 tumours) and cirrhosis.
I went on a trial called TACE 2 with the hopes of extending my life by 18 months, or possibly longer, if I responded to the treatment. The trial involved chemo embolization and daily tablet chemotherapy.
The Chemotherapy (Sorafenib) had a lot of unpleasant side effects which made it difficult for me to be active.
The trial ended suddenly after I had been on it for 3 years as there was no conclusive proof that sorafenib was any benefit when used alongside TACE.
I then went into liver failure and this was the first time that I was actually considered for transplant.
I was only on the list for 10 weeks and I got my transplant 1st call.
After transplant I was very weak and wasted as I've previously said, I also had the problem that my bones and joints had suffered through all of this (been diagnosed since with osteopenia, osteoporosis, osteoarthritis and sclerosis of the lower spine.) I also had problems with the operational wound healing (it took 13 weeks).
Despite all that and accidents through being weak after transplant (2 spinal fractures that were healing and then fell opening up the fractures and causing one more big one) once the op wound had healed and I could get about I started to get stronger, slowly, bit by bit, day by day.
I'm now 15 months post transplant and I am way stronger than I was in the early days post transplant.
As far as my liver is concerned I am very well and am now only on 3mg of TAC a day (started out on 12mg). My problems now are just joint and bone issues.
Your hubby has been through a huge operation and he will feel very tired as his body is using it's energy to repair itself. If it's tiredness and general muscle wastage that are the issue then I can assure you in a few months he will be feeling a new man. He just has to remember to be patient and take things slowly while he is in recovery.
Sorry if my reply has been long winded but I just wanted to get across the fact that if I can recover and feel great with all the problems that I've had to face then your hubby should be feeling fantastic when he gets to the point that I am at now.
Wishing your hubby a full and uneventful recovery and sending my very best wishes for your 'new life' together.
Alf.
Hi Alf,
Thank you for taking the time to answer. I know in my heart that it will take a long time to build up again as he has no reserve. He was so ill, he was refused listing by one trust and after a second opinion got listed and then transplanted after 5 days.
Its reassuring that you recovered from such a debilitating situation. I suppose it's lack of confidence as once you are back at home, the hospital support network is not immediately surrounding you.
We are both very grateful for this chance of a new life and I think both incredibly shellshocked by the last few months.
Onwards and upwards.
Marie
Hi Marie. I know what you are saying about once you are back home and going it alone so to speak.
It's great to have this wonderful site and other transplantees and the Liver Trust admin to talk to help allay and worries or fears.
I discovered this site about a month after transplant and it's been invaluable for me!
Eating plenty of protein to aid healing is good for your hubby at this stage and plenty of water is good too for so many reasons. No lifting anything of course is a golden rule.
You look after yourself too whilst you're busy looking after hubby. The worst is all behind you now. Make sure you get your own feet up and cuppa time!
Alf.
I feel like I'm force feeding my husband protein via snacks and protein supplements as he has no appetite. He's says he's making the no lifting rule last a lifetime when it comes to housework. ๐๐๐
I hope you give youself protein snacks as well to cope with the work. I know a young man who didn't do hoovering and his girlfriend refused as well. They got a robotic one. (That didn't do a lot either). Who's the (man) who said if you don't do aany housework for 6 months you never have to again because it doesn't get worse? That's not true either. MEN!
Actually like the idea of a robotic hoover, did pass through my mind, Decided against it as my patience for sorting IT issues if it didn't work is not good at the best of times, never mind now. ๐
LOL. Spoken like a true fella!!
Just keep sticking the snacks next to him whether he's hungry or not. It's amazing how many snacks that I managed to eat when I had said "No thanks, I'm not hungry"
Alf,
I've just been explaining your history to my husband and then showed him the picture of your steep hill climb. Hopefully it'll give him inspiration.
How long did it take to get your appetite back? I think thats a majot issue and he says food tastes 'odd'. Before TP everything tasted metallic, (I put it down to the ascities). I suppose it takes time for the taste bugs to readjust.
It took me a few months to get anything like my old appetite back. It was like the recovery, a very gradual thing.
I suppose when you are not expending much energy the body isn't crying out for calories.
Is your hubby still having the energy drinks? I had those on prescription for a couple more months after transplant .
Please robbie let him get away with that no lifting rule as long as you can. I was just an obstinate know it all. Well I didnโt know it all - at all! Still paying the penalty - +15 months post TP..
Warning taken.
I'll be the packhorse for now, don't want to risk herniation of the wound. Poor husband had a large umbilical hernia from the ascities preop which they've fixed during the transplant. So he's got extra risks. We don't want a repeat of that, he was really self conscious of the 'alien'. It was defiantely an entity of its own.
I haven't had transplant, but I have had major abdominal surgery. Aside from the nervy feeling of being away from the hospital after many weeks, my body took a longer time to recover from the shock of surgery. My head could understand it as an idea, but my body had to acclimatise at its own pace. That's how I understood it, anyway. It took 18months to feel a new normal again. It must be harder for the one standing close to the patient in recovery. Best wishes with it Marie.
Thanks for the reassurance. The body and mind must be shellshocked. Your right about each body finding it's own pace.of recovery.
Even a little exercise like rotating risks or ankles is a good start. I used to exercise with small rotations like this in bed. I found 10 minutes of some gentle stretching and clenching muscle could wake up my co-ordination and desire to get up and get on. Starting small is my best plan
So that 10k at the end of the month is off ๐๐
I'll readjust the target downwards.
definitely, amputation isn't to be done at home... even with an adult being present and consenting
Re the 10k adjustment - Maybe just a tad down Robbie ๐
One step @ a time. 10k steps = 5 miles ISH, depending on the size of your ๐ฃ๐ถ
Flipping heck I canโt do 10,000 steps!! Thatโs cloud cuckoo land for me atm. Maybe in about a year or soโs time - with luck ๐๐
Oh it was a generic comment was it oโfeck? Shall keep my mouth shut next time ๐.
Regarding the 10k, My tongue was firmly in my cheek at this point in time.
Goal for now is corner of the road and back & we are the end house !!! ๐ ๐.
Hi Marie
Phew! Thatโs a relief! I think I am snap with you (two?) then! Alfredthegreat and I had our liver TPs within 3 days of each other last August (2018) and when we met up on this forum a couple of months afterwards we set ourselves the challenge of running some sort of race this year. Unfortunately both of us have since suffered unrelated to liver back problems. He broke his spine and I had to have a back op. We havenโt joked much about that race since!
Ah well, cโest la vie, nโest pas.
I hope you will be able to get hubbie out and about soon - it just does take time as everyone on here has said. But it really should get better! ๐ค๐ค๐ค for both of you.
Waffling on a bit as I do, we got a robot hoover - it is the best thing since sliced bread, but then our floors are all stone tiled (ex cow shed) and we donโt have any rugs ๐. So I donโt know how good it would be on carpets and rugs. I sit there like Lord Muck and set it going almost every day ๐. My excuse is a rather large incisional hernia ( another review of options at QEHB next week - boo hoo - I know whatโs coming! He said wait till after the back op! ) So here we go, here we go, here we go-ohh, or some such rubbish... Hence why I always go on about being careful about lifting, carrying etc.....
Good luck to you both Marie.
Miles
,
I thought you meant he must lose 10 kilos!!! That's why I warned not to amputate a limb to hit the target!!!
I thought there was crossed wires!
He needs to put weight on, not lose it
I used to envy people who couldn't put on weight- I'm wiser now - that is a tricky one. Do you like bone broths? They take too long to make but there are some v good beef ones you can get on line in powder form that are organic . I think they are great for nourishment in themselves but also for helping stimulate appetite. They are very good for our bones too. Quite a big outlay but value for money if it's what you like.
Thanks for the interesting Info. I'll have to read up on the appetite stimulation aspect. Never tried bone broth. It'll have to be gluten free just to add to the mix !!
I am doing zumba on Sundays, Tues days and Wednesdays. I am also doing tap dancing on Thursdays. I've got my first physio session on Thursday so I'll see what she has to say then I'll be doing her exercises daily as well. Hopefully my back will stop hurting then.
Thank you for your reply! That sounds like a great mix of fun exercise Janty! I hope the physio session goes well and complements what you are already doing to make it even more helpful for your back.
Thanks. It's tough at times as my stomach muscles are really aching today as well. I've checked with Addenbrookes and it's all normal as they are just starting to get stronger with the exercise.
That's good news! When my muscles used to ache after exercise I felt it was a happy-ache! They can ache now just if I lift my arm to hang up a coat. That's because of a lactic acid release that doesn't correspond with the usual amount of exercise it takes to get that sting! That comes with PBC and liver issues. You've put them behind you now. I'm really pleased for you that you are making such progress.
Hiya Fili, you read my mind. I'm back to yoga and Pilates tomorrow after a few weeks off. Although we went to Cornwall end of October and walked or cycled 10-20km a day. Didn't feel like exercise.
Keep up the good work, why put off til tomorrow what you can do today?!!
๐ค๐ค๐ค
Hi mattymoo, ya know, when I say exercise, it can mean clenching my fists and stretching out my fingers repeatedly while sitting in an armchair, right? Or balancing on one leg during the commercial break on a xmas movie...
Well done on yours, I hope you enjoyed how you felt after it even if you didn't want to do it? And I hope all is well for you still. x
Yes honey, standing on one leg counts as yoga...go for it ๐ง๐ง๐ง
I'm good. Seeing Liver team on Tuesday for them to decide yay or nay for my place on TP list. Hoping for a nay๐ด๐ด!
Keep on keeping on!! ๐ค๐ค๐๐
What what what mattymoo?? Hoping for a nay! Why is that? Iโm intrigued and mystified!
Miles
๐ง๐ง
Nay ๐ด๐ด cos I don't want to be on the list. I'm doing really well and that list messed with my head ๐คฏ. Having no control scares the bejesus out of me!! Too much to do.
Get with the team Miles. Love ya!! ๐ค๐ค
What control will you have if you need it and don't get it Matty? Nn my life I've thought I was in control and events beyond my control proved that I was mistaken.... go gently with deciding...
Yes of course I understand. But I took control over the demon drink and like to feel I have a good chance. If not, then of course I'll take it on the chin, still fighting!!
Is northern lasses don't give up!!
๐ค๐ค๐ค๐ค
I agree with filly tbh matty but - if you are happier not to be on the list that , of course, is your choice. For me I nearly danced a jig when I got on the list but wasnโt fit enough and that is probably why we have such different views ๐.
And thanks for the love ๐๐ returned of course!!
Milo
Hiya. I completely understand and I too was delighted to be accepted on the list. I did everything to the letter and on my 2nd call up was told that I was much too well and fit. So yes, I hope I have managed to conquer the bas***d and have a semblance of normality, not just for me, but my lovely family.
Sorry if I seem not to take it
seriously I absolutely do!!
Hope not to have caused offence ๐ค
Mattyyyyyy! Absolutely no offence - what made you think that? My bad! Of course you are taking it seriously- I can tell and you have explained your rationale well - so indeed letโs hope you can maintain that โtoo well and fitโ status! Bet they didnโt use those exact words did they ๐.....
Only positive is I might meet Alf!! He's promised to wear a massive flower behind his ear. I'll bring photographic evidence! xx
I would like to do more, but by the time I get home from work, sit down, then next thing 2 or 3 hours have gone by, I've been asleep LOL
Sleep when you need it is great! I'm pleased for you that you can sleep. We have people here who just can't. Yawning is a good exercise, and stretching....