I am grateful for all of the lovely words of encouragement and support. I receive a lot of praise for my positive outlook and how I am approaching this illness with courage and strength and grace.
But through all that, I am still super effing scared. I am scared of the unknown and the future and what my New Normal will be.
“New Normal” is a term I started using after my mom was ill and passed. It really represents how your life can change so significantly, that you need to create a New Normal for yourself, because you can never go back to your Old Normal. And through this latest of life’s challenges, I have learned that your New Normal is always evolving. As mine is right now. I still don’t know what my New Normal will be like yet, and that is what I fear. In my mind, I am setting myself up for complete success – which I consider to be gaining back all the physical strength I had before, and more. Dancing and being active without any limitations. Being a mother without worry of becoming sick again. But I don’t know if that will happen.
So instead, I think I need to look at my New Normal each week. And then have it evolve weekly, instead of thinking months ahead. I am asked a lot, “How are you feeling?” And so for this week, this is my New Normal.
New Normal – September 11
Breathing wise I have no major concerns. My oxygen levels have been really good since leaving the hospital. I still find things like walking up the stairs to cause me to pause at the top and catch my breath. Or needing to take a few slower, deep breaths to feel as though my lungs are full. And I am more *aware* of my breathing. But otherwise, I don’t feel that is what is limiting me. I am being held back by the medication side-effects and recovering from the surgery. But, a week ago I couldn’t do stairs without holding a handrail. Today I can. A week ago I couldn’t go to the the store without my walker. Today I could go on a shorter walk without it. I still don’t have the strength in my legs to squat down and stand back up without using my arms – that is my next goal. Which will take more time than maybe some of the other progressions, but it will happen.
I am also super sensitive to any new potential symptoms that would show the vasculitis is spreading. I fear seeing blood after I use the washroom, as that may be a sign of it affecting my kidneys. I am worried about the swelling I now get in my knees is another indicator, instead of it simply being my body moving again and its reaction to more walking and working on gaining the strength back. I am more aware of skin changes, again, another place where new smaller blood vessels symptoms would show. But, I will say that I am getting better with not focusing on these as much as I remember doing so while still in the hospital. So, there is mental progress with this fear too.
And my body image is being challenged. My puffy face. The muscle mass I have lost. The definition of my waist. All things that do not affect my autoimmune disease, but they do affect me mentally, and I need to have my mental strength to keep working through this. I just don’t feel like “me”. And I need to change that old idea of what I should feel like.
Otherwise, my New Normal consists of not being able to fall asleep at night, then waking early than I’d like. But this allows me to get up and enjoy my kitchen in the early day, siting at the table, drinking my hot water with lemon and honey. Then I just do stuff around the house. Kitchen work. Laundry. Emails. Going through the huge pile of papers I have. Doing errands. Then I mostly rest in the afternoon. Most times I can’t sleep, so I read. And then I get Arrine and we have a great evening and start the cycle all over again.
Still no dancing or what I would want to do for exercise, but I am walking so much more now, and that’s better than a week ago.
For someone who loves to be in control, this is the worst. Feeling lack of control over your own body is excruciating. So instead of focusing on what I cannot control at the moment, I am doing what I can to set myself up for success with those things I can control. Appointments galore!! I have been to my chiropractor twice since being discharged and he says he sees improvement after only two sessions. Once he gives me the approval, I can start on massage therapy. I see my therapist next week to help me through all the thoughts and fears and emotions and ensure my head is where it needs to be. I had two spa treatments earlier this week. Teeth cleaning next week. I am creating my own body’s support system. And I am working on weaning myself off of the High Calorie High Protein diet they had me on in the hospital. Well, not the protein. But I defo developed a sweet tooth I never had before with all the cookies and pudding and ice cream they were feeding me. I am working on getting back to eating more how I did before I became ill. I am meeting with my trainer next week, just to talk and set up a plan going forward. I hope to attend some dance rehearsals soon, just to watch and feel that in my life again.
I know I can’t live my life in fear of the unknown and my health. But at the same time, I am unsure if I can just wave aside the fear as if it doesn’t exist. So for now, I am using the fear to draw my strength from. I am transforming my fear into determination to stare down and stand tall against and think positively about the outcome. For the mind-body-soul connection to be working together for success.
And I may not know what my New Normal will be next week. And that’s ok. I will reassess in one week’s time.