We were never big holiday people but we loved our weeks away in the uk and some long weekends.I find myself really grieving over not being able to go away again.
I suffer with constipation and I have to take an hour out in the afternoon to deal with it via suppositories.
That will severely curtail any holidays for me.
I have tried to speak to my husband about this but he doesn't get it - constipation for me is very painful.
My son is going away for a month to Vietnam and I find myself in tears about that.
I very rarely go out now because I can't bear to meet 'normal' people.
My treat for this week is a trip to MK hospital to have my numbers interpreted for me as they haven't been read properly for 9 months now so I don't know if I am good bad or indifferent.
I am scared about this as I know my creatinine and urea numbers are high but I can't interpret the finer points myself.
Wish me luck.
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fartikins
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Unfortunately life is ever changing and that you are disappointed that you and your husband cannot get away this year.
Coping is being grateful for what you have and not what you don't. It's making new rituals to enjoy the holidays.
Right now you have the constipation and the health issues that you do,that's this year.
Work around them and set new rituals and things that you and your husband love, at home.
Like you, my husband and I made our own ritual of spending the holidays in a hotel after my parents passed among other things.
Since the pandemic and now with my brother being immunosuppressed, we aren't able to get away yet.
We have made our flat our hotel with lovely candles, a selection of great holiday DVD"s and favourites to watch, prepare good foods, get take- away that we enjoy and we have each other. Maybe next year we will be in a hotel, even for 3 days.
Speak to your husband and put together this year's plan; even if it's music cooking a special dinner in advance. Asking close friends /loved ones for tea or high tea. Say a prayer.
Oh Bet. It’s always a joy reading your posts! You are so wise. Much like fartikins, I too sometimes wish for the old days when everyone was still around us, and we were all in pretty much, good health. But I agree that, as much as we miss our healthier days, we must do try to count our blessings. I adore the plans you made with your husband. It sounds very warm, loving and cosy! A very Blessed, and Happy Holiday to you and yours! 😊👍💕🎄
You are so kind and loving. I consider myself blessed to have you as my friend.
Thank you for your beautiful words; they have touched my heart.
I can understand your wishing that you had the old days back with the big Christmas' and people around; remember that they are alive in your heart and no one can ever take that away from you. Write about them.
Unfortunately we all are living in an ever changing world where life has changed.
Focus on those things that are the same, make new rituals and reach out to someone in need.
Happiness is about the small things and not the big.
You have my love, support and friendship.
Know that I am on your shoulder as you celebrate the holidays and thinking of you.
Focus on the good and you'll survive this. Holidays are hard for so many. You have a lot to deal with but are clearly strong, even in your weakest, most vulnerable moments. It will go well (even if the news is not what you want) because the universe is looking out for you.
I'm having one of these days too. Im off to dialysis in the next hour. I can really see it far enough. Been running around like a mad thing this morning trying to get last minute xmas things. Between work and dialysis, I just don't seem to have a moment to myself. My sister isn't pleased as I have refused an invitation to xmas at theirs. However between working and dialysis, I only have 2 days off. Everyone I know is off for 2 weeks. I know dialysis is keeping me alive but sometimes I just yearn for life before, this illness. I was told by someone on this site, we go through a grieving experience for the life, we used to have. I really believe this is true. I believe its best to take life one day at a time. Its not easy but you just have to get on with it. Good luck with the hospital. Maybe try and do something you enjoy today. Even if its just something small. Sending you a big hug xx
Thanks for your wonderful reply - even driving to the hospital yesterday was awful - I shut my eyes because I can't bear to see the xmas decorations - I used to love xmas but I don't want to know now. This depression isn't lifting really.
We do go through a grieving process, and unline when someone dies, the grief that comes with ckd, it almost feels perpetual. Once we’ve learned to cope with one thing, the next hits us.
It’s ok, not to be ok right now. And your husband, family, and friends may not understand you. It’s not worth your energy trying to prove it, they just won’t get it.
I am mot on dialysis, but I’ve had to rethink this holiday season, even last year, I had plans to go to NH and snow shoe etc, and this year, I’m home with a rheumatology appt scheduled over my break.
I have found affirmations, finding supportive community, and talking to someone like a pastor or therapist is helpful.
Your reply was just right. Replies that say to "buck up" and stop complaining are not helpful, in my opinion. I found your acknowledgement of grieving kidney disease and the "next (thing) hits us " right on the money. It's affirming to have our feeling acknowledged . You didn't stop there. Your last paragraph tells us what works for you, just suggestions, not directives. Thanks.I'm a lifelong kidney patient who is on peritoneal dialysis. I didn't start til my gfr was 7 because I felt good. It's working well.
I wish I could visit my 85 year old mom but she lives 1500 miles east of me so no hoping in the car. I wish I could visit my daughter and 6 year old granddaughter but they live1500 miles to the west and I don’t have enough vacation days cause i have to save them for when I get surgery for a PD catheter probably early next year.
This is to say we all have something but I have some good books to read and when my eye finally fail I have Audiobooks.
Life is what you make of it, yes you have some challenges but one step forward every day helps. Have you had a colonoscopy for the constipation? My daughter went through something like that when she was in high school and had to have one and it found a blockage that they cleared out.
You have my thoughts and a hug for your depression that’s a hard row to hoe.
nope neither just having a tough time right now. When I did ultramarathons sometimes it was hard to keep going so I had Relentless Forward Progress tattooed on my arm to remind myself that no matter how hard things got to just move forward.
Everything is always changing. I too have had to change things I can no longer do.. embrace what you can still do, and be creative. If you really want to travel, figure out if there is a way to do it around the constipation. Let others do their thing while you take an afternoon to yourself, but maybe you could still do things with them in the morning. My thoughts are with you.
Did you try the flax oil I recommended? A teaspoon in the morning with my coffee helps. If you cant find the oil, they sell it in gelcaps also. They also sell it in a chopped up form that you can add to cereal, but I didnt really like it like that. I understand the depression at this time of year! Just try to be glad that at least you're not on dialysis. Best wishes to you!
The holidays are so hard for so many people. I've had a rough year dealing with this CKD and reoccurring cancer, so this Christmas is going to be very pared down for my little family.
I've never travelled for the holidays, so I guess I don't have anything to miss!
But you know, I feel that jealousy is such a soul-sucking emotion, I refuse to even entertain it.
I am so very grateful for what we have and what I/we can do! Our family traditions have changed over the years but the most important part is being together.
This may be hard to hear, but as a Mother, you should be happy for your son being able to travel to Vietnam! I loved that my daughter was able to go to France and Italy and I was so very happy for her! My youngest is going to Japan on a school excursion in the new year and I am so excited for him!
Sure you miss them, but they have lives to live, and experiences to gain, that's a sign that you did a good job raising an independent child!
Readjust your expectations and try to be grateful for what you CAN do this year. Don't let constipation stop you from doing things, hell I have to wear a catheter bag right now, not happy about it, but it is what it is for the moment. I'm not going to let it rule my life!
Whenever I'm feeling hard done by I do a volunteer shift at the Food Bank or the soup kitchen; I find helping others takes my mind off my troubles and makes them seem small by comparison.
You can get through this and maybe have a really nice holiday; make new traditions, it's all up to you.
Such words of wisdom. You’re absolutely right. We always view our children leaving us as a bad thing, but your words are so true. It is a high compliment and proof that an individual is a great parent who raised strong, independent children. 😊👍
I know how you’re feeling. I tend to withdraw from social gatherings when I’m unwell. My issues were the opposite to yours, but I completely understand how it makes you feel like not even leaving the house. As a type 2 diabetic since the age of 14, I too felt uncomfortable being around those (friends and family members) who were able to consume all the sweets and high carb treats they desired at our gatherings, without a care in the world (seemingly). I feel for you in your situation. Thoughts and blessings. 🙏
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UPDATE: Should I be concerned about a 23 (or 10 ) point drop in gfr in a year?
BEWARE MIRALAX (propylene glycol) : it may cause CKD
