I have dialysis at a clinic local to my house 3 times a week for 4 hours, it’s not painful but it’s very very boring and restricting in terms of going on holiday. I suspect the kidney failure is responsible for the majority of my fatigue but it’s keeping me alive so I just have to roll with it. It’s not so bad now that I am off treatment for my cancer as I had a hospital appointment everyday at one point which made it a full time job.
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Hello @MissP143,
Unfortunately we don’t have an app, but possibly in the future!
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I use Firefox and have it as one of my desktop bookmarks which I can then access on my phone. I don’t know if that helps. Again I am not techy, and just use what I know. Good luck
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That is a huge commitment Alfie and, as you say, there isn’t really an alternative, so you just have to go with it. Do you find that fatigue is worse or better on the days you are not having dialysis, and are you able to go for a day out on days away from dialysis?
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Yes dialysis is known for causing fatigue and you do feel better at the weekends when you haven’t done it for a couple of days. If I stopped doing it I wouldn’t last more than a few weeks so you have to except it as part of your life. The unit I attend is near my house and hubby drives me there and picks me up so it’s not to onerous. The nurses are kind and you get a free sandwich and some biscuits so it’s not all bad L.O.L
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Not many things in life are free, so make the most of it LOL
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Hi, doesn’t it make such a difference having kind nurses, a free sandwich and some biscuits. My haematology day unit staff and free biscuits are lovely, however I am not there long enough for the free sandwich. Take lots of special care, enjoy the days when you feel better and spoil yourself.
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I too am on dialysis but in my case I am on Peritoneal Dialysis. I dialyse for 8 hours every night and the machine does its work whilst I am sleeping. When I originally went in to kidney failure I was on haemodialysis but much prefer Peritoneal. I am free all day and have found it less tiring than haemodialysis. Indeed I am about to go to my Zumba class in a few minutes. I realise not everyone has the option of Peritoneal Dialysis but if you do, it is worth asking about it. The main down side is the amount of storage but having been on it for over 9 years I am used to one room being largely for storage.
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Hi Joan, I see you have been in long term remission from multiple myeloma which I am very happy to hear. I have primary plasma cell leukemia which is a very very rare form of myeloma. I suffer very badly from fatigue which is a combination of the cancer and the dialysis, it’s hard to separate out the two, I can barely make it up the stairs some days. I have excellent clearance rates and do not retain much fluid so it’s a mystery why I feel so tired, I had 5 percent kidney function on diagnosis so maybe that’s the reason. Keep fit classes are out of the question at the moment L.O.L
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Hi @jojo48 i also have a blood cancer and take chemo meds daily…i work for the NHS and do 13hr shifts…I have had my illness 14years now but recently I have put weight on and the fatigue is so hard…I’m a size 18/20…I have had good support from work since opening up about my condition a 4 months ago… I kept it to myself due to denial…and fear and acceptance…work have altered my shifts a little which has slightly helped…but the fatigue seems to be with me all day long…even on my days off I’m exhausted…I hate not having the motivation to do everyday things…I also work nights which then I’m snacking constantly also messing up my sleep pattern…I hate to feel a burden to anyone and try to live my life as normal as possible…I am also waiting for some counselling for anxiety which has increased recently and I dont know why but its horrible…i guess anxiety take your energy out of you too…
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Hi and Hi to @Jojo48, yes I think you are right that anxiety really takes the energy out of you and my fatigue can come on after I overdo it with what personally stresses me and when I overdo it emotionally and physically. I am so glad you have opened up to work as people cannot help if they don’t know what is going on for you. I have also found that that is the same for people around me. I know I can often sense if something is wrong with someone close to me but I usually get it wrong what it is. It must be very difficult working long night shifts and I realise there can often be financial implications cutting back on hours but I have found looking after ourselves is so important. This community forum is here for you. If you need to contact the Bloodwise Support Services, please call 0808 2080 888 (Mon-Fri 10am-4pm Weds 10am-1pm) or via email at support@bloodwise.org.uk. Please let us know how you are both doing?
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How are you doing since you started this thread @Jojo48? I hope you’re okay.
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