Each month I like to spend a little time talking about how I am coping with my chronic illness with the help of writing prompts from Sheryl of A Chronic Voice. Sheryl is having a really difficult time at the moment after suffering a bilateral patella tendon rupture, so do pop over and give her some love.
The Prompts for March are Processing, Relying, Retreating, Cancelling and Reframing.
I’m trying to process a lot at the moment. Moving away from my chronic illness I’m having to process the fact that my youngest is now diagnosed as Autistic. We have been in meetings and started the process of getting him in the right place at school. He is coping a little better, I just hope it continues.
There is also processing the information pushed on us all day every day about the situation in Ukraine. I hate that war brings out the best and worst in people. We can’t possible be getting all the correct information, it is a war after all, but it’s hard to process what is fact and what is there to evoke emotions.
Back to me, I am struggling to process that I am not making any progress. I saw a program on television that said most progress with my type of illness happens within the first year. And I noticed that. It’s a shame it didn’t continue, despite my consultants efforts in trying to make me better. As he always reminds me, I do have a progressive illness, so does that mean I can’t expect, wish, hope to ever get better. Do I really have to live the rest of my life in this broken body.
Sometimes I feel guilty because some people have it worse, and some people have been ill for a lot longer. Some people have never known being well, fit and healthy. I had 50 years of relatively good health. There were the good times and the bad, but I had a life and produced a family and made a home. I just feel so useless now.
When Sheryl wrote about this prompt she mentioned being sick of relying on others and that’s what I relate to most. I have to rely on the National Health Service (NHS) to give me treatment and they do well. But my consultant doesn’t really know how to treat me and what will actually make me better. Is there anything that can make me better? When I get really poorly I have to rely on the hospital to know what to do, but they never really do. When you have a chronic illness, unless you are presenting with life threatening symptoms, then they just blame your condition and send you home to deal with it. I had this with my last hospital visit. I didn’t want to go but my GP insisted I get checked out because of my symptoms, stiff neck, chronic headache. They checked I didn’t have meningitis and that my brain wasn’t bleeding (again) and when they were assured it wasn’t that they sent me home saying to speak to my consultant. I see him every six months and my next date is early April. Will he be able to tell me why I can’t move my neck without pain and I have had a constant headache for four months? I’ll be relying on him for the answers, but I doubt he’ll have anything to offer.
I also have to rely on my husband to take me anywhere outside of the house. After 50 years of going where I wanted and doing what I wanted, not being able to do go anywhere without help stings really bad. I’m really not coping with relying on others and long for my independence back. I rely on delivery services when I used to enjoy a browse around the shops by myself. I can’t even get to the local shops because if someone has parked on a dropped kerb I can’t cross the road in my wheelchair. I used to be able to go to the GP alone, that was a real treat. The surgery is at the end of my very small street and it’s easy to get to in my chair. The door was a little difficult, but it was mostly left open anyway. Guess what! They’ve just told us they are closing the surgery down and moving to a new and better building which is only 1.1 miles away. (All uphill and with very busy roads to cross!) I will have to rely on my husband to take me to the GP now.
I have planned a holiday for us in August. I usually feel excited about this but this year I just worry about it will go. Will I be too sick to do anything? Will the kids even want to go? I love the seaside and our little retreats away from the daily slog (which for me is doing very little every day within the same four walls.)
I miss the retreats I used to go on with some friendly bloggers. As I got more disabled it became difficult, but I had lots of help and just enjoyed getting away. I’d love another little retreat with friends, maybe a spa weekend or something.
Or I might just start retreating even more into my own shell as the world outside is such a scary place.
I had to cancel my IVIG treatment in January thanks to the family getting Covid. I was lucky as I didn’t get it myself despite three of my children getting sick. This meant that by the time my next treatment came around at the end of February I was really ready for it. Unfortunately, it made me quite sick and even when the side effects wore off I still feel pretty rubbish, like it hasn’t helped at all. I did cancel the treatment altogether a few years ago when I felt like this, but I got worse very quickly. So even if it doesn’t seem to be helping I know it does stop me from getting worse.
I have actually been reframing, or trying to reframe, the way I live my life. I’ve had enough of the stress that is constantly placed on me so I’m building boundaries and accepting less. I’ve reframed my way of dealing with life and stopped saying sorry for things which really are not my fault. I have had to come to terms with being sick and disabled and trying to deal with everything else on top is proving too much pressure. I’ve tried so many things in the past which have helped, like mindfulness and journal keeping, but I’ve also added Reiki and crystals to the mix.
I’m trying to reframe the way I earn my money. I don’t sell much of my crochet, but then I make things mostly for pleasure anyway. If they don’t sell soon I’ll offer them up to a charity raffle or something. I earn most my money from my blogs, 50% affiliate linking, 50% hosting posts. I’m getting a bit fed up of it all now and even though people prefer ‘influencers’ to use social media sites, I just don’t really get along with that side of things. Maybe I’m too old.
I have some other money making ideas in the mix and I’m hoping I can make them work. Reframing your life when you are in your 50s isn’t easy, but it’s not impossible. I’m inspired by my brother who is 15 years older than me and has reframed his life so many times. This year he is moving into a new house! I’m glad he will have some outside space again after living in a high rise building for the past few years.
Sending love and light to all my readers, especially those that are suffering from a chronic illness.