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.
I often wonder what it would be like to consult a psychic about my future and have my fortune told. My sister-in-law was a great fan of fortune tellers and would visit regularly. These days you can call them from places like CARTOMANZIA.VIP and have your fortune told over the phone. I had a lovely friend who actually worked for a service like this and she took her job very seriously.
Last months Writing Prompts can be found here.
Thanks as always for joining us, Anne. You have lived an amazingly full life from the sounds of it! So impressive. I was chronically ill since I was 14 so I don’t know any different. But my childhood was filled with such energetic, happy memories, and I wondered what it was like to be ‘sick’. Well now I know haha.
I think it’s great for those who developed chronic illnesses later in life to share their experiences, too. It’s fascinating for me to read about how stark the differences are, and muse at your life. Sending love!
Thank you Sheryl. I always feel self conscious talking about by illness, especially as I was perfectly fit and well when I started this blog. Having your prompts gives me the opportunity to share a little of what my life is like now. I know I’ve had a full life, and if the rest of my life has to be battling this condition, so be it. I will live my life the best way possible. x
This is really insightful, thanks for sharing x #mmbc
I really do keep forgetting you are older than me. I think of you as a 40 odd year old. It is rubbish that your illness makes you feel much older. I am glad your girl is enjoying life and is well at the moment.
This was so interesting to read and I feel that I know more about you now x
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Yep, forever in my 40s, or perhaps even younger in my head…shame about my body, but you can’t stop getting older so it’s best just to get on with it.
Thanks for the great read! I’ve been managing minor disabilities since childhood, and my FND stepped in in college – so I’m with Sheryl in minor envy that you were able to be abled for so long before your condition stepped in.
Sharing the different perspectives is so very important for our community because our power often is our diversity – and the disabled community is one that anybody can enter at any time due to accident, symptoms, or diagnosis.
It seems sometimes like all we can do is minimize our own suffering and visualize a present and future where we have things as well-managed as possible. Love how much visualization has helped you! I do a fair amount of meditating, but visualization isn’t my strong suit!
I think it’s a double edged sword. Having lived a full life before disability hit, I still mourn for what I had. But I still appreciate having it, even though it’s gone now. I think a lot of people do not understand that disability can happen to anyone.
I enjoyed reading your thoughts this month. I feel it is so healthy for us to share like this and it encourages me.
Your post was really insightful, Anne, and made me think about my mum who is now disabled, in her 60s, but still feels much younger in her mind. She has fibromyalgia and related health challenges, but she still finds smiles and time for her grandchildren.
As for me, I am not disabled but I have always been ill, although it is only during adulthood that I recognised my condition made me different. It was normalised when I was a child so I didn’t know any better, and my family always supported me through surgeries and hospital visits.
I suppose we learn to live with what we have in life.
Thanks for such a great post! I can relate to being really active and working before illness, then having to mourn what is lost afterward. That transformation is something that just keeps happening over and over, and the way you described it and how you’ve adjusted really resonates with me. Thanks again for sharing!
So insightful. Every time I come here, I feel that I know you a little bit more. I can’t quite get my head around what it must be like but I must say that I admire you for not giving up, and for just getting on with life and doing your best to enjoy it too.
You and your daughter should take some strength and inspiration from each other .
Loving this post. Keep pushing. It’s inspiring, whether you believe it or not.