ΟstǝøʍyƜhat?: My nest

Chronic osteomyelitis has been a big part of my life over the last nine years, from to compound tib/fib fracture in early 2006, being dismissed by doctors over the years as worrying too much about pain and swelling, finally getting a diagnosis in summer 2011, surgery and the dreaded PICC line in 2012, receiving the all clear at the start of 2013, and the eventual relapse at the start of this year. Over the years, I have had numerous surgeries, tones of x rays and various scans, countless courses of antibiotics, flareups, and symptoms like bone pain, night sweats, and endless chills/always feeling cold. These are the hard facts of osteomyelitis; these things can be looked up in any pathology book or easily found in a search engine like Google.

There is, however, a different side to living with a chronic illness - one that does not appear in the massive textbooks used in the nursing program I am. It is the side that people do not like to talk about - it is the worry, uncertainty, and fear that I, and many other people who are chronically ill, live with. These feeling do not go away even though I have been dealing with this infection for almost a decade. No matter how many scans I go for and days I have to wait in until follow-up appointments, I still worry about results. Despite taking antibiotics, I am afraid of the pain in my bones, afraid of hurting, afraid of pain, afraid of not being able to stop it, and when the pain does come, I am afraid what it means - is it healing pain or pain from the infection and bone dying? And no matter how much people reassure me that I will be o.k and get better, I am uncertain about the future - after all, the infection relapsed. I relapsed. I hate writing those words. Hate hate hate. Hate is a strong word. I do not like to use it. it is not dislike or indifference. It is to despise, loath, abhor. But I think that it is appropriate here. I hate the worry, fear, and uncertainty more than the infection itself. I could cope better if I new that this infection could go away forever with treatment. Instead, the best I can hope for is remission (there is now way of knowing if the infection is really gone or not. I can only hope, after treatment, that it is gone). That is what I did last time. Now the infection is back. I am tired. My brain is tired from dealing with this. Some days, I am so tired that I don't feel like I care about the infection anymore... just let it do what it wants too... this makes me very sad.

People do not like to talk about these things - medical problems, hospitals, taking pills, surgery, remission and relapse. Illness and doctors scare people; it reminds them of their own mortality. It is easier for them to ignore these topics. As a result, I have lost many friends. They did not understand my health problems; some thought I would get better if my attitude was positive enough; others would ask me how I was doing but clearly did not want to hear my answer; people were my friends when I was first diagnosed and had surgery, but I guess the novelty of my health problem wore off for them after a while.

I deal with the physical aspect of my illness - the doctors, scans, surgeries, etc.
I must live with the fear, uncertainty, and worry.
I have to cope with the emotions surrounding my illness and questions of "why has this happened again?"
and I am lonely.
As a result, I am tired and discouraged. Sometimes, I even feel like none of it matters anymore - that the infection will be here forever and that I should just give up and let the nasty in me win.

And thus we get to the main purpose of this post - being kind to your self and creating a loving and comfortable environment that will help support you through the hard times. This space is made up of many things, including the people you surround yourself with, the activities you do, like meditation and breathing exercises to help relieve stress, the food the gives you energy, the food and activities that comfort you when you receive bad news, that help you celebrate positive results, that get you through appointments, and the physical space you live in or call home. I am going to focus on the last of these right now.

My home is my haven - it is there through both the good and the bad moments. When it is stormy outside and I have a bad day, I can curl up in a blanket, cocooning myself from everything outside, lying in my cozy bed in the dim light listening to the rain thinking that it won't only wash away the grim outside but also my troubled feelings - it is cathartic. Early morning, a weak sun shining through the leaves, slowly gaining strength, warms my skin as I sit by a window or outside on the porch, reading a book, sipping tea, just sitting quietly listening to the birds. It is invigorating, and healing - it make me feel strong and alive.

My home is my domain - in 2012, when I had a home care nurse visit me daily, my house was my space - I was in control, unlike when I am at the hospital. When I have my next surgery, I will likely have a home nurse for wound care again. When she visits, she will come into me world, where I create order and a welcoming cozy environment.

My home is a retreat from the medical world - no doctors, surgeons, operating rooms, MRI machines - inside my home everything is o.k. - stash of tea by the kettle, fruit on the table, flowers throughout the rooms - nothing to remind me that I am ill. Most of the time, when I return from a doctors appointment, the first thing I do when I get home it to make a cup of tea. It is one of the only things I know with certainty - not matter what happens, I can come home and have that cup of tea!

My bedroom - my bedroom is purely my space, and it is magically, with fairy lights, fluffy pillows, and tones of books. It is my nest! When I have surgery, it is the one space I will spend the majority of my time in, and I have therefore made it special to me. There is nothing like your own bed to sleep in =).

First thing I see when I enter my room. I got the fairy lights from value village for 2.99$
The blankets and pillows are greatly appreciated because of the coldness/chills I always have thanks to the bone infection. They where one of the first symptoms I had that confirmed to me that the infection was probably back.
Lots of books on the shelves to keep me busy when I have surgery.

The letter box came from Value Village as well (2.99$). It was originally brown (really ugly), so I painted it white. I made the heart garland myself using instructions from a magazine (Romantic Homes). The picture frame contains embroidery I completed last fall. Embroidery is one thing that keeps my busy when I do not feel well/have surgery.