the continual acceptance of chronic illness

Things have changed for me recently, and it has been difficult for me to accept, so today lets have a chat about the continual acceptance of chronic illness.

I have had chronic illnesses all my life, but they really started to affect me when I was in my early twenties. At the time I lived alone in Birmingham, England in nurses accommodation and I had a job as a nurse that I really enjoyed. I loved walking and having some independence in life for the first time, then one day everything changed.  

Me and my then best friend was at a folk festival, we were having a wonderful time, then my lower left leg became really painful, swollen and numb. At first the doctor thought it was an infected insect bite, but when antibiotics did not work I was referred on for more tests.

The next few months were a blur of hospital appointments, and I lost my job at the hospital because I could not walk easily. I couldn’t afford the place I lived and no longer qualified to live there because I was no longer a nurse and so I had to move back in with my parents.

The grief I felt at losing everything was incredible, and I had no idea how I was going to cope, I fell into a deep depression. Now, my story is my own, but I am sure many people who have chronic illnesses can understand that grief and know what I am taking about.

However, that grief does not just happen when you first get sick, most illnesses gradually worsen meaning that over and over again you have to readjust to a new normal. The continual acceptance of chronic illness is real, it is something that has to be accommodated and acclimatised to day after day, week after week and year after year.

Most people assume when you get ill like this that you will get better, but the truth is that chronic means chronic! Many of these illnesses have no cure and most of the time their treatment is not something that gets much money or research put into it. Many of us get gaslit or ignored by the medical profession meaning that we are left with no help or guidance in improving.

I know for me personally, when I had the diagnosis of Multiple Sclerosis I had physiotherapy, a specialist nurse, a specialist in my illness… and now I have nothing no input at all. I remember when they told me it was not M.S. and took those things away I felt that grief again so overwhelming and I did not know how to cope.

Last November I had covid, now it is April and all of my symptoms are worse, especially my fatigue. I do hope that will have more research now, but it is hard to tell for sure, but honestly I hate that symptom so much!

Once again I am trying to cope with grief, the plans I had for my YouTube channel have had to be scaled back and I have just announced that I will be dropping down to one video a week instead of two.

I feel that old familiar grief once again, the sadness that comes with the dreams I had needing to be readjusted or changed. Letting go of the ideas I had for myself and my channel are difficult, it makes me feel like a failure and though logically I know that is not true, my heart hurts because of it.

That adjustment of dreams had to happen, trying to bring out two videos a week was using up the few usable hours I had. I was ignoring self care, my diet had changed and I was too tired to do any housework or exercise.

I knew my plans needed to change, I knew I needed to take a small step back from my channel, but announcing it really hurt me. Once again grief left me feeling raw and lost, chronic illness had once again called the shots and I hated them for it!

But after dealing with chronic illnesses for over twenty years now, I know there is a lot I can learn about myself by the process of grief that illness brings. I would not be the person I am today without them taking away that nursing career all those years ago, and I quite like who I am now…I was not a big fan of her though!

So, instead of trying to push through it, ignore it, or rush through it, this time I am sitting with my grief and seeing what it can show me. My faith is incredibly important to me, and mindfulness is something that literally saved my life!

That is not an overstatement, I have had chronic depression since I was fourteen and have been on the edge many times in my life. Being mindful of my thoughts and paying attention to the moment allows me to catch negative thoughts early…but then by the title of my blog you know I love it!

As I once again slow my life so my increased pain and fatigue can find a new normal, I find myself taking deep breaths to relax my body. I listen to my inner voice more, I slow down and take the time to pay attention as my body teaches me something my deities, angels, guides and ancestors need me to know.

Witchcraft is a big part of my life, and I want to learn new routines and ways of bringing it into how I  care for my body. But that is something that will come with time, for  right now I am going to listen to what my body needs and hope I can see my GP.

I have needed to go to the doctor since January, but now it is April and I have put it off as long as I can. Medical trauma, and gaslighting has left me afraid to see them, afraid to say how I feel just for them to tell me all tests are negative and discharge me. I need to push through that fear though, as I listen to my body I know I need to go and it helps to know I am not alone.

So many of us have been lied to, fobbed off and denied care because society likes to think chronic sickness is just lazy people not wanting to work. But I hate sitting on the sofa watching TV, and I am not alone in that. We all still have dreams and hopes, maybe that is why the continual acceptance of chronic illness is so hard?

Thank you xx