Welcome to my monthly post where I talk about my chronic illness through writing prompts from Sheryl at A Chronic Voice. This month I’m looking at Ageing, Suffering, Transforming, Navigating and Visualising.
I remember feeling that I was getting so old when my 50th birthday approached. It just seemed like a major milestone and I wasn’t mentally ready for it. I wasn’t ready for ageing! But, then it happened and I had a wonderful day, I was thoroughly spoiled and at the end of it all, it was just another year older. I was fit and healthy and running around after my family, sometimes a bit too much.
Shortly after my 50th birthday is when I got sick and had my first stay in hospital. I didn’t realise at the time that it was going to be permanent and I strived to get well again. When I realised that I was going to spend the rest of my life sick I suddenly related it with age. For one month I relished in the feeling that 50 wasn’t old after all, then I was left feeling like a 70 year old.
I read about other’s in the chronic illness society who have suffered and are so much younger than me. I feel lucky that my illness didn’t strike until I was much older, but it still depressed me that I will spend the rest of my life like this.
My teenage daughter is also chronically ill but seems to be coping quite well at the moment. She is enjoying her teenage years and hasn’t been an in patient in hospital for six years. She still has hospital check ups, but apart from her stomach issues you wouldn’t know she was sick. She just gets on with it and feels she has so much to look forward to. I hope this continues for much longer.
I have an older brother, he just celebrated his 70th birthday. He has relatively good health and does a lot more than I can even with the age difference.
I’ve just spent a week having my IVIG treatment in hospital. The side effects were not so bad this time. I drink plenty of water and take pain relief, this means I generally just suffer with headaches and tiredness. I did have a couple of days feeling nauseous, but it wasn’t too much. Sometimes you have to suffer a little for your treatment that ultimately makes you feel better.
I have been suffering on and off lately. I have days when the pain is unbearable, and other days when I just want to do stuff and keep on going. Then there are the days were I want to do stuff and end up suffering because of it. I think suffering is just something a person with a chronic illness has to put up with.
There is no end to my suffering, no cure, no treatments that work. I can only hope to keep on going and ageing enough to see my children grow up.
I think I have always been transforming, I’ve had so many different stages in my life; a difficult childhood, an early marriage and motherhood, being a single parent for years, continuing my education at a later age, meeting a new partner, having children at a later age, then becoming disabled. I’ve had loads of different jobs, at one point I was working three jobs at the same time just to keep afloat while being a single parent (yes, I don’t know how I did it either, but I guess I was young and determined.) I have watched myself transform a lot.
The last six years have seen even more transformation, this time much more physical. I went from being an active and healthy person who one year was running for charity and the next confined to a wheelchair. I still can’t walk more than a couple of metres. Imagine walking on a really hot shingle beach where every step is painful. How far do you think you could go before giving up. Sometimes I push myself further but end up paying for it afterwards by not being able to move at all.
I have transformed into a much slower person, and forever ageing, but my brain is still as active as ever (Even it refuses to connect to my body sometimes!)
Navigating is a good one for me. As a child learn to walk and navigate around, I have found myself learning again. I often use furniture or objects to help me move from one place to another. Like a toddler will cruise around the furniture when learning to walk, I cruise around the kitchen cupboards so I can prepare a meal.
I have also had to learn to navigate in a wheelchair. I tried a self propelled chair but I honestly don’t know how people actually get anywhere like this. Maybe I am weak or too heavy, but I was so very slow. Not only that, my arms and hands just don’t work properly sometimes, so self propelling was not for me. I couldn’t get used to being pushed around so I invested in a power wheelchair. Now I can move along just using my one hand. It still requires some learning, especially navigating a crowd of people. Thankfully, this is something I’ve not had to endure since this pandemic began, but it’s also something I’m not looking forward too. A lot of people think you can swerve out of the way or stop instantly when you are in a wheelchair, but that’s not always the way. If you get in my way you could get hurt.
I love this prompt because visualising is what keeps me going. When I’m really sick, perhaps in a really painful spasm and I can’t move, then use breathing and visualisation to calm my mind and re-connect my body to make it calm down again.
I use visualisation techniques to help me sleep at night, especially when I am in pain. I practice self reiki, visualisation and meditation on a regular basis. I know it’s not for everyone but it’s something I’ve done for many years, even before I got sick. I used these techniques as pain relief while labouring my babies. I’ve also used them to help my mental health and to assist me in my life goals.
Visualisation is an extremely powerful tool, you only have to believe in it. I’d recommend anyone to give it a go, even if you are healthy.
I try to visualise my future as one where I am well again to continue my life normally. In reality, I have a progressive illness, but if I can stop the progression, maybe there is a way to reverse it too? I’ll never give up hoping just like I can’t stop ageing.