Absolute nightmare. The pain I was experiencing was agonising and could not go through with the session. Only half an hour. I actually broke down in the loo π±
My mental state is in turmoil I'm desperate and I'm having to wait all the way til Tuesday for a urologist appointment then what?! Another follow up with no treatment in meantime again!!
I'm at my lowest today
Sorry for such depressive post but this is the only place I can vent freely with those who can relate. My partner tries but he just deosnt get it. As a male he is reluctant and finds it diff to express physical and verbal comfort and just puts his foot in it with the things he comes out with?!
I'm alone in my illness deep down even tho I have grown up kids they are no where to be seen. Personally I'm a burden to them in their eyes and too much trouble to deal with just like my own mother rejected me and resented me cos I was a sick child.
I'm trying to stay strong but some days are just too much for me and have no one to really talk to everyone too busy in. Their own lives.
So I just escape into Netflix or on this site.
Sakinah πΉ
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sakinah111
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Have you ever thought about writing a book of your experiences? If you do show your frustration...it's real. The way I figure it, everyone has a boss, except for God and Santa Claus. If you think it will help go right to the Dialysis Center administration and unload on them the angst you feel over repeated visits there. If you write the book, I volunteer to proof it for you.
Sakinah and Mr. Kidney -- Just to expand on Mr. Kidney's description of proofing, here are a few comments. The person who proofreads is called a proofreader. The proofreader checks the text to be sure the spelling and punctuation are correct. An editor does this, as well as checking facts, making sure that credit is given for information, and that sources of facts are given. If the writer states that the moon is made of green cheese, a proofreader will only make sure the words are spelled and punctuated correctly. An editor may ask the writer whether the writer has verified that "The moon is made of green cheese," whether the writer wishes to credit another person for having stated that information, or whether those words are part of a copyrighted song. Don't concern yourself with these details, Sakinah, and do consider Mr. Kidney's kind offer of assistance in preparing your book for publication,
I'm retired now but I was a Special Ed Teacher for 20 years (2nd career). I taught middle and high school students with all types of challenges. Editing their work for grades or publishing was always a challenge but one I do miss.
so sorry to hear about your troubles. It's important to have family support around us. I understand what you are going through and you feel all alone. Sometimes loved ones are ill equipped to deal with such situations and we may in turn think that they don't care. I started dialysis when i was 17 and my family rallied around me and i have no doubt they wanted to trade places with me. What i am trying to say is that they have their own coping mechanisms. All you can do is forgive them and try to understand them too. This is your battle, you are a strong woman within, dig deep. I hope that will help a bit and thank you for sharing.
You know I am on this site so much but since I don't have a job anymore, not by my choosing, that's another story. What I am trying to say is this is a good place after leaving work you do find out who your friends are and Arnt. People hear MS and they really don't know what it is so they don't know what to say. Guess what your not going to catch it. We don't mind if you ask us any questions about it.
This is a good site for all the new people to ask and listen to us all.
Have a good weekend and pray for us but say an extra prayer for the people who are in the path of hurricane Harvey.
I am the wife of someone on dialysis - and we have our very bad days too. We have just succeeded in a long train journey across country from East to West, doing dialysis on the way. We heated the bag by putting it in a home made pouch with a hot water bottle between the two halves of the bag - and then putting a second hot water bottle on top (i.e. it was well padded all round and in a sturdy leather bag) - it was nicely warm still a few hours later. The train company gave us seats near the toilet and with a wall behind so that we could tuck the "drain in" bag between the seats at the top. It felt very empowering to do this. The journey took 12 hours on the outward journey as we went via Preston to see a relative for an hour. The journey home was 9 hours. We are both pretty shattered today. But we managed it. We had dialysis supplies delivered to the guest house (Beechwood Court) in Conwy, Wales. They are a Christian guest house and were very helpful throughout. I recommend them to you as a place to stay where you will get any help you might need. I even left my own meds at home (I forgot my own suitcase!!!) as I was so keen on making sure my husband had all he needed. They arranged with the local doctor for me to pick up a prescription at the local pharmacy the next day. There are people out there who can help!
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