Swollen feet

My feet are so filled with water that this is what happens when I lean on my foot for a few seconds! How insane! I look like an alien! (Compare the huge dent in the middle of my left foot with the fully swollen right foot)  

Invisible illness week

28th September – 4th October 2015

Credit to http://www.invisibleillnessweek.com for the picture

Living with a chronic illness 

Found this lovely article that I thought I would share. All credit to the author:
Living through your teens and your 20s can be a particularly difficult experience when you’re chronically ill. There are so many things that you want to be able to do and experience, but your body simply won’t cooperate. I know this only too well. My body and I have been in a constant struggle for supremacy for as long as I can remember.
I’ve written a lot about my experiences on my blog, and I’m still very much working things out. That being said I have found that in addition to working on myself, having people around you that really understand and support you is so incredibly important.
When you have illnesses that mean you don’t look sick, people generally disregard you and think that you’re at least making some of it up. I have spent a huge amount of time trying to justify myself to so many people. At the end of the day, this is counter-productive, and I’m seeing myself through the eyes of someone else’s ignorance. I know what is happening to my body, and I also know what I’m capable of, and I’m doing everything I can to heal.
So, today, I’d like to take the opportunity to share some quick things that millennials (ugh) living through their teens and twenties with chronic illnesses will know. I hope that this will serve to help people be more understanding and awareness of what they can do to support their friends and loved ones who fight every day for their health.
1) “But you don’t look sick” is kind of the worst thing you’ll hear all day
2) Sometimes the desire to feel ‘normal’ can be overwhelming
3) Learning to appreciate the small victories is a small victory in itself
4) Even though it comes from a place of love, overprotective friends and parents can leave you feeling like you’re still 12 years old
5) Finding employers who understand that you might have to disappear for periods of time while you recover, and will do everything they can to support you, is one of the best feelings ever
6) Cutting out negative people from your life helps you heal
7) You know your body better than anyone, even your doctors
8) The internet is a godsend
9) Spoon theory makes total sense
10) The realisation that maybe all those doctors you see aren’t actually helping as much as you thought is a frightening and enlightening experience all at the same time
11) Taking control of your life in the best way you can and trying to help yourself is always better than laying in bed feeling defeated
12) Self-sabotage, flair-ups and bad days are always going to happen, it’s how you deal with them and move forward that counts
13) Finding positive role models who have been through what you’re going through and can share their stories and tips really, really helps
14) You don’t need reminding that you are not your illness, but sometimes changing ingrained thinking patterns is hard
15) You know what’s really and truly important in life because you cut through the bullshit
16) You and your spoonie friends are some of the strongest people you know

A small step…

I washed my hair on my own today! I know it is such a small step but for me it means the world. Ever since I had my line put in, the movement of my right shoulder has been slightly limited so for the last two weeks, at the age of twenty five, my fifty four year old mother has been washing my hair! As well as the limited movement, the nurses have scared me by warning me not to get my stitches caught and to ensure I keep all my dressings dry. My mum doesn’t mind at all but needing a second person just to be able to wash your hair kills your confidence. Today I ensured that the dialysis nurse who has my plasma exchange for me wrapped up my stitches and line properly and decided to try. I was extra careful to ensure that i kept the flowing water after from any dressings. It wasn’t a particularly nice shower but it was so nice to get a little bit of independence back. It is a small step towards learning to live with this line so I am feeling positive!

My tesio line

  So this is my infamous tesio line. The annoying stitches in my neck and then my lovely bruise from sleeping last night, followed by the two tubes wrapped up under. This photo is definitely a result of sitting here bored while waiting for my plasma to start lol. 

Day 18

After last night’s bruise and problem’s with the tesio line, I was very weary of how I slept. But my god, I had the worst night’s sleep! I think I may have been overly cautiously and so hardly moved during the night. I woke up with the worst back and neck pain and feel so unrested! At least my bruise doesn’t seem to be any bigger and there doesn’t seem to be any bleeding coming from the wound (which there was a bit yesterday).

Over the last two days, with the aid of the water tablets, my weight has gone down 4 kilograms! I am peeing every few hours but four kilograms seems ridiculous! Don’t get me wrong, I am grateful for any weight loss! Annoyingly my feet are still pretty swollen, but thankfully they aren’t too painful in the mornings. I am going to attempt to take photos of my feet through the day to see if I can tell the difference. I will post if I am successful!

My blood pressure is finally coming down a bit – 150/85 last reading I think. Still high but definitely better than what it has been in the last week or so. The doctor has decided that I am going to continue with my plasma exchange indefinitely for now. He wants to continue doing them as long as they are still working. I can’t really argue with it. It’s just annoying because I was hoping to be released mid week but that’s out of the window. Fingers crossed for the weekend but I am not getting my hopes up.

Help, I love someone with chronic illness…

Came across this great article…

Ever increasing…

Please just work! Just been told that I will be having some more plasma exchanges this week as my protein isn’t going down like it was previously. Had my mind somewhat set on being discharged mid-week so it’s a bit of a set back but I’m staying positive. I would rather stay in and get treated properly than discharged and have to return. Happy thoughts!