What do you struggle with most day-to-day?
- Fatigue
- Sleep
- Hydration/Diet
- Appointments
- Mental wellbeing
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voters
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If you struggle with anything else, pop it down here 
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All of the above and at different times of the days.
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I would say a big struggle Is the lack of understanding from Others 
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Most days nausea is a huge problem along with a lack of enthusiasm for anything that I used to enjoy.
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What a fantastic point @dawn.maclean23!
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Have there been any hobbies or interests that you’ve missed recently?
I used to enjoy making components and parts for motorcycle restoration but as time goes on the fatigue and concentration elements of the disease make this less enjoyable. Watching full length films on tv have become less enjoyable as sleep seems to take over.
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My husband’s biggest problem was feeling cold all the time
- not now a problem after transplant.
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I totally understand and sympathise with you Stevie. At Stage 5 myself and often suffer with daily nausea- it is so draining and depressing feeling so ill all the time. I have been prescribed some tablets which do help and I don’t go anywhere without them as the nausea can creep up on you at any time I find. Have a chat to your nephrologist team or doctor about meds to help or changing your meds if they’re not working. Hoping for the best for you Stevie and that you get something to help soon.
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Hi Sara,
Thanks for your reply to my post. I also carry ant-sickness tablets with me, they are a great help. As you say the nausea creeps up on you and can at times be debilitating. It also becomes tiresome, especially when you are out with family and don’t want to be a killjoy. On occasion I tend to go off on my own so that I can spare family members from seeing how it affects me. Not ideal but it’s a coping mechanism of sorts.
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Know just what you mean. We all travelling the same journey or similar with ckd but sometimes it helps to know others are going through something similar. It can be a bit of a lonely place can’t it.
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It’s definitely a lonely place. I’ve just learned that I have Barrett’s Oesophagus as well. Not sure how that is going to affect things. Also my nephrologist has indicated that there’s a problem with my thyroid as well. Now here’s the kicker, my living Donner has discovered that she is no longer able to donate due to cysts on her kidneys.
I think I need to take some time out take stock of all this. Maybe I need to have some me time.
So sorry to hear the latest setback Stevie. My thoughts are with you. Take good care of yourself and know that there’s always a listening ear for you and so many others here. 
Really interesting seeing the way members have voted
Keep positive Stevie, I have had the chance of my 2 live donors delayed due to my cancer diagnosis, but I guess hopefully in 2-3 years I will be able to start that route again.
Something will come up for you, it’s a tough time I understand that, but keep looking forward
Sara, are you on dialysis yet? I am stage 5, thankfully don’t have the sickness but I am expecting that possibly once I start dialysis
I find tired as the biggest drain, but I do still walk 20-25 miles a week as part of my health focus and making sure my mental health is as good as it could be.
I started walking daily at least 2 miles, around 4 years ago, and it’s transformed my health.
It obviously depends on everyone’s other health issues, but I’ve lost over 12 kgs across the last 18 months which is all part of the long term goals
Hi Chalky, wow I’m amazed at what you do and what you’ve accomplished weight wise. I’m not on dialysis yet but they think it will be time in approximately 18 months at the rate my EGFR is dropping. As I’ve posted before the fatigue and nausea is what I find most frustrating. I’ve left the gym I used because I found if I went it left me so exhausted and sick I couldn’t do anything at all throughout the day once I’d been. I only did stretches, treadmill walking and some weight training all with advice from a trainer who knew my age and health issues. I love walking but I’m so limited to how far I go and have to go slow as I have hip and back issues too. I do still like gardening so if I have a good day I like to do as much of that as I can. I really envy your walking achievements and of course you’re absolutely right, it is so good for your physical and mental wellbeing. Go you!
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A little is better than none, so don’t be too harsh on yourself.
I used to really mentally berate myself if I missed a day or 2 a week walking, just by putting it off and saying to myself, I’ll do it tomorrow, 1 day won’t hurt.
Now I look at it, that if I miss a day, that’s fine, it gives me chance to recover and rest.
I can imagine that having hip / back issues restrict your walking, which is unfortunate. I’m expecting dialysis later this year, depending on when they think I need it. I’m at 13 now, dropping 1 every 4-6 weeks, but I’ve read dialysis can start anywhere between 12-7.
I also read that the consultant might only put you on dialysis if you feel ill enough to need it. Yes, I get tired easily, and have a fair bit of brain fog now, but all the time I can walk 5-6 miles ok, I hope I’ll be alright
But I do recognise that I am getting worse, as I was doing 30+ miles a week last year but I am sure I’d feel a lot worse now if I did that
I have noticed my muscle strength is getting worse too, despite trying to do resistance band work.
Maybe that would work for you, as the bands can be quite light to begin with if you need 
Keep positive, and keep that mind focused on moving forward, try not to let yourself get stuck doing nothing because your mind tells you to
Yes, you’re absolutely right. I do still do as much as possible on my good days and certainly don’t give up - that’s a road to nowhere for me! Great advice about the bands and actually my husband has some that he uses in the gym so he will give me the ones I need. Like you my EGFR had dropped much faster lately and is now 14 so as you say, we know dialysis will happen at some point. I am quite an optimistic person so although I feel my limitations I do try to ‘carry on as normal’. Thanks for your advice and wise words. Have a happy day
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