You might have seen our new Kidneys Unfiltered campaign on social media. This campaign is all about being honest and real about life with kidney disease, including the parts people don’t always see or talk about.
We want to bring that same space here to Kidney Community.
What are your kidney truths?
Well. I am stage 4. My sleeping is pretty dreadful , about 4 hours a night. I itch like a swine , until I apply the cream which makes my clothes a bit yuk. I can pee for England , every 1/2 hour, probably the result of trying to stay hydrated. My diet is appalling . All the food I like is very restricted and all the food I do not like is recommended. I have paracetamol for breakfast lunch and dinner, trying to get rid of the bloody headache , (9 months and counting). My skin is like the surface of the moon, covered in lumps bumps and craters. I generally feel rather unwell and the general household chores are becoming that: real chores.My eyesight is deteriorating and the 6 monthly new prescription is tedious. My joints ache and I have pain in my lower back. Other than the aforementioned , life is great, I am still here. I am still bombing around in my Morris Minor Traveller, (1967). I still have my dogs, A Toller called Matilda and a Finnish Lapphund called Anouska, (love them to bits)., and most importantly I have a very supportive and very caring wife, who makes everything worthwhile. ‘Nuf said , there are others out there much worse off than me. Best wishes to them all. B
Hi it’s aura here.ive been living with ckd for 16 years and my journey has not been straightforward.i didn’t start with problems until I turned forty and they turned my life upside down . I woke up one morning and thought I was dying the amout of pain I was in put me on the floor continuously being sick and losing vast amounts of blood in my urine that was the start and it was a staghorn of 10cm .I had 3 consecutive ops and spent 4 months in hosputal.st the time I was a single mum of 2 daughters aged 11 and 15.leaving them with my parents and friends was sole destroying and felt like a failure as a mum.since then I’ve had over 200 kidneys infections taking me in and out of hospital and disrupting my family life all the time.also numerous more kidney stone which caused the worst pain ever feels like strong ache in your back and sharp twisting pain at times it can be sole destroying as its all you can concentrate on.the kidney stones have caused so much damage to the tubes I had to have a nephrectomy for 6 months this is a tube inserted in your back attached to kidney and drain urine straight in a bag to let your kidneys recover.having that bag attached to a carrier is bulky and everyone can see your urine and is embarrassing when having to leave the house or it can be strapped to your leg but finding clothes to fit is hard.sleeping became a problem for a good 8 years of insomnia being awake all night and so fatigued during the day.luckily my sleeping has improved but I still have to get up about 5 times in the night to pee. The itching isn’t too bad for me I have bouts of my skin itching but the cream usually helps.but was is bad is the itchy sore hard lumps you get that crack and flake I get them more when I’m having bad day and they usually appear on my face which is so embarrassing I look like the lurgy and people can be so cruel and stare and makeup doesn’t cover them up.as my ckd journey got worse it has now caused a thyroid problem called secondary hyoerparathyroidusm which causes me to have a really dry mouth and even causes sore red tongue sometimes . It also causes me to have muscle cramps and extremely sore and swollen joints and bone pain .on rare occasions it causes my hands to go numb which is so painful and can last anything from few minutes to half an hour.fatigue is the main thing I deal with it’s hard to explain to someone how tired and exhausted I can feel at times after doing very little.i also lost my hair after all the illness wigs are my best friends now. My appetite isn’t great it goes up and down I try to be good but the sickness I have makes it hard ti have 3 regular meals a day I do try and have my evening meal everyday.well that’s enough of the hard things we all go through.i have a notability car and try to go out everyday.i go swimming when I’m OK as it takes all the weight off my limbs and muscles.but the best thing is I have the 2 most amazing daughters who’ve had to grow up faster than I would have liked but they have supported and been on my journey every step of the way. They’ve even had to train how to clean my nephrostomy tube and also my hickman line .I couldn’t have done it without them and last bur most definitely not least are my grandchildren who are 2 and nearly 4 they keep me going and trying to stay well everyday .although I deal with alot their are many worse off than me so I keep going but wobbles do creep in now and then but I know I’ve got you’ve guys for support which I’m extremely grateful for .I hope my story shows you your not alone in the struggles you face x
Hi Aura, Sounds like you are really having a tough time. I think that wobbles are a common complaint , especially when tired, Cramps are something that I frequently suffered from ,in my legs, and always at night. Luckily ,they seem to have stopped the last few weeks, (touch wood), but it is nothing that I did or I would pass it on. Like me , it is the support that keeps me going , even the dogs seem to know when I feel rough and that means a lot. Getting out, even in the garden is a huge uplift for my spirits, and I guess, not being on dialysis probably helps. Although, I wonder if a decent flush through might getrid of some toxins. Chin up, wee are still here, and that is the main thing. Best wishes B
Hi, I really feel for you, I’m so pleased you have good support from your wife. I love the thought of you in your car and your dogs, we used to have a morris traveller. Keep smiling xxx
Nice thoughts ,Thanks . Best wishes B