It’s been strange and very eventful here for nearly two years now. Many changes have been taking place and so many ups and downs. A typical life with chronic illness? I guess so.

In an attempt to put my mind and time to good use while I am bed bound and in pain I have started several projects and they have become a real mixed blessing.

During some of the worst pain and emotionally challenging times to date I have felt my hopes and will to go beginning to failing. I had no idea what to do to get me through. I tried all the things that have helped in the past but they no longer work anymore.

My darling husband has been pushed beyond anything I could imagine and now his health has started to suffer too.

Having very little sleep we survive by napping if and when we can. It is not unusual for us to be finally getting off to sleep at 6am and then rising at midday. We sleep when my body allows us to and I hate that it impacts on my husband. I have told him many times to sleep in another room but he refuses, he is a generous and caring man.

This has all been mentally exhausting on both of us. Our minds are like over wound clocks and fatigue is a constant companion as the weeks have turned to months and years. Yet we have pressed on as best we can. We both look back on our busy working lives and I think how much easier they seem than now! I quietly laugh as I reflect on how we managed it all.

I dearly wanted to let my husband rest so I started to think of things to do to keep my mind off the pain and other symptoms while he could catch up on much needed sleep from time to time, for that I needed something to occupy me and that didn’t disturb him. I needed projects!

I decided to use my project management skills from my previous life and career and renovate the house to become more accessible and make some comfortable changes so that we could have a change from the way we have been living everyday, for over a decade. I needed something to change as we no longer can go on holidays.

So I have thrown myself into renovating mode and started this project, with the help of my husband, and it has taken every bit of will and effort to make things happen. I had no idea how hard it was going to be to work with tradesmen and contractors at this time, things have definitely changed since I was project managing! These days it is chaos management in the extreme! We have made baby steps though and it has started to feel rewarding, at last.

Not satisfied with this I decided to double down and take on another fur child into our lives. Yes, another one! It’s been exhausting, agonizing and delightful all at once. She is our furry little trouble maker and her rambunctious ways have both entertained us and physically destroyed us; even more than we already are.

On any given day we will be up almost all night applying heat packs and meds. Rising to take care of a large family of dogs and cats, and then having a constant stream of human traffic through the house, building, hammering, drilling and nailing. It’s a chaotic circus to say the least.

Each night we can barley speak from exhaustion and I have had to defer several scans due to a) puppy antics b) tradesman issues and c) debilitating pain.

Has it been worth it? Yes. It certainly think it has.

I never predicted how much it could make me look forward to the coming days, even if only to organize people, draw plans, call suppliers and be a Fur mother, even if it has all got to be done from my bed. I can’t afford to stop or look back at this time. Tomorrow’s demands mean I can’t think about what will happen to my health and challenges… I am just holding on and doing my best.

Tonight I have had the idea of an art project to help raise awareness of invisible illnesses and autoimmune diseases and have started putting together planning and submissions for how to tackle it all (even though I can’t raise my legs and I need help to shower and move).

Perhaps I am my own worst enemy. Perhaps I am irretrievably naive and even possibly insane. Whatever it is it has helped me look at tomorrow with new feelings other than worry and dread.

I am currently in a bad flare and it’s all I can do to write this piece, but the joy I get from connecting with you wonderful people and knowing you are all trying to make your lives as best you can encourages me to share these little revelations. Sometimes having a project helps focus and nourish the mind even when our bodies are fighting the hardest battles of all.

As autoimmune sufferers we can become split into two people, one with physical pain and health challenges and the other who lives inside our hearts, spirits and minds. A physical presence and an inner one. When the body shuts down we may have to make the most of our inner world and life.

… and now I shall try to rest as morning approaches once again.

Gentle hugs,

Trish