Each month I join in with Sheryl’s Chronic Illness writing prompts. She has built a lovely community of people who understand what it’s like to be constantly ill. For those that don’t, she gives us a voice to help spread awareness. These are Sheryl’s prompts for January, Summarising, Crossing, Moving, Rebuilding and Expecting.
The New Year makes you think of what you achieved in the previous year and I have already made a summarising post of 2022. A lot of it is health related but mostly because of my daughter Star and her deteriorating health. We can only hope that 2023 will be a better year for her. It seems strange to say, but now that she’s become really poorly we are finally getting the help we’ve been asking for for years and have been brushed off. It’s sad that she had to get so bad first, but it seems the way things are done here with our wonderful NHS under so much pressure.
Summarising
Summarising my health condition I would say I am gradually getting worse. I wanted so much for it to be different, I hoped that I had a chance of finding a new treatment or improving in some way. But, the truth is, the treatment I have keep me stable and that’s it. Unless I get much sicker then there is nothing more that can be done for me. Even if I did get worse there are really very few choices of treatment for my condition. Last month, Celine Dion announced on her Instagram that she had the same condition as me, Stiff Person Syndrome. I guess at least now people (and in particular, those in the medical profession) can see that it’s not just a made-up condition because someone famous has it! Or maybe, it won’t make any difference at all.
Crossing
This was a difficult prompt for me but I guess I could use crossing as a way of crossing over to a new way of living. I need to do something, this life is proving to difficult for me and I need to find some way of crossing over the barriers that are holding me back from being happy.
I haven’t decided how I’m going to do this yet, but I’ll be giving it a lot more thought now that we’ve crossed over to a new year.
January 1st is not just the beginning of a new year it’s anniversary of when I got sick. It’s been seven years this year. I remember when I first got sick I was told it would take me around eight weeks to recover and that felt like an awfully long time. But here I am seven years later and improvement was very minimal. I was aware from the start that if I didn’t recover in eight weeks then future recovery would be difficult. The first year I didn’t give up and I strove to recover so hard. Then exactly a year later I was given a new diagnosis and I learnt that my illness was progressive. This has stopped me in my tracks, and although I’ve tried to keep my positivity I think I’ve lost a lot in the last six years. I want to go back to that first year and go back to believing I can recover.
Moving
When we moved into this house (ten years this year) I’d lived in my old house for twenty four years! It felt like a lifetime and I had to leave it all behind. But we needed a bigger house and we were really lucky to have this house, no, incredibly lucky. It’s not perfect but it suits us, it’s big enough for us to keep out of each others way when needed and comfortable enough for us all to share spaces like the kitchen and living room. I just wish the walls were thicker so we didn’t have to put up with noise, inside and out. BUT, I don’t have any more plans on moving house, packing up and moving is like my biggest nightmare. I still have nightmares about the move here ten years ago! I really don’t understand people who love moving so much.
But, moving house is only one way of moving. I keep saying that I’d like to be able to move more and this year I plan on trying to make that happen. I don’t know for sure that I will never walk again, I can sure try and improve on the skills I have. I get pain if I push too hard, but what if I only push a little but often? There is always something new to try and I’d love to be able to move more.
I’m also planning on replacing my wheelchair this year. My current one has served me well for the past three years but I am looking for something else. This will aid my movement outside, so I need to find the right one. It’s never an easy task and wheelchairs are so expensive so there is lots to think about.
Rebuilding
My way of life is currently going through a lot of changes, my children are growing up and changes are being made. But, after rebuilding my life so many times in the past it doesn’t feel the same.
I had to rebuild from scratch when my first husband left me, and again when my family let me down. I was at my lowest when I met my current husband and at the time I didn’t think it would be a permanent relationship. I was rebuilding my life, I was a single parent, I’d just given up my job because of pressures at home and my life was a mess. I didn’t think that he would stick around but he did and he’s still here some twenty one years later!
So, I’m not thinking of this chapter as rebuilding but it is growing further.
I will be focusing on rebuilding my self esteem and finding that strong woman inside who has dealt with so much in the past. The future is to be built, but I won’t be rebuilding.
If you are a blogger and are thinking of rebuilding your blog then Sheryl offers services on her blogging business website, Blogging Bread.
Expecting
I love Sheryl’s quote:
I approach life without expectations, but rather, ask life what it expects from me, instead. I find this a peaceful thought that grants me strength, as I live with the unpredictability of chronic illness and disability.
I don’t think that people understand chronic illness unless they have one. Even my closest family and friends seem to wonder why I still can’t be well again. It can become tiring expecting someone to get better and a lot of people give up and disappear from your life.
Life always throws you curve balls and now I find I am only expecting things to get worse instead of better. This is a mindset that I need to work on. So what if I don’t get better, I can still live my life to my own expectations.
Expecting things to be different or waiting for change can be exhausting. Living your own life and seeing what life expects from you is definitely a more peaceful way of thinking.
Thanks for sharing so openly Anne – you sound an incredibly strong woman. I think you’re so right in saying that unless you live with a chronic illness, people generally don’t get it and also the mental aspect of knowing that you’re not going to get any better is so hard to live with. I also loved Sheryl’s quote about living life without expectations. For me, the biggest barrier to acceptance and being happy living with chronic illness was the constant comparison between how life is now and how it used to be – but it’s much easier said than done to change that view and takes a lot of work.
Sending best wishes you to and your family
Sarah
I’m so with you Sarah, I still don’t think I’m quite there with accepting that this is my life now, I mourn for how I was before. But, I am better at accepting my limitations. Best wishes to you too.
Thank you, Anne, for always being the first to contribute to the monthly linkups. I really appreciate the participation, and enjoy reading about what you and your family have been up to! Although am sad to hear about your deteriorating health, as well as your daughter’s 🙁 Thank you for quoting me and also the shoutout to my business blog! (So far, no business haha.) Sending love for the New Year!
I am always happy to join in Sheryl. I hope some business comes your way soon, it takes time for new ventures to take off but it’s good to have a focus.
It is a shame that Star has had to get as poorly as she is for get to get the help that she needs. It is so sad that there is little treatment for you if you get sicker. It sounds awful to say it but now that Celine Dion has been diagnosed hopefully more awareness can be raised and research done. x
For so many years they blamed Star’s illness on bad behaviour and poor parenting because she was a child and they could get away with. She’s classed as an adult now so they treat her differently, but she has got so much sicker it’s scary. I just hope they sort it out for her sooner rather than any later. x
It’s good that Star is finally getting the help that she needs but it makes me sad to hear that it has taken so long and that she wasn’t taken seriously as a child. A friend of mine has a daughter who was told she was a drama queen because she was constantly doubled over in pain, experienced heart palpitations and couldn’t breathe properly. After seeing many doctors over many years she was finally diagnosed with celiac disease. I think that you are very strong Anne and I really hope and pray that 2023 is much kinder to you. Sending love and big hugs xx
Hi Anne! Happy New Year! I’m glad that your daughter is getting help and I’m so sorry to hear that your health is not improving. It’s incredible how the years go by. I’m hitting my 15 year mark this February. Each year is so hard. I get quite depressed over the holiday season and my mom told me to stop being bitter, but honestly, I think it’s really hard for healthy people to understand that we’re crossing the finish line for a year of illness and then get no rest as we move into a new year with more illness. We’re allowed to feel that way. I just wish I could explain it better to loved ones who don’t think of things that way. I wish you all the best for 2023 and I’ll try to do better at stopping by your site. I really appreciate you taking time last year to stop by and say hi. It meant a lot to me! Take good care, as always!
Happy New Year Anne! I do hope that it is all good news for Star going forwards, and that you stay on an even keel as long as possible. As you say, it is good when a celebrity brings chronic illness to the fore, but living with chronic illness day to day is a struggle. May your 2023 bring you some respite.
Thank you Jo, I’m hoping for some respite too as well as some answers. Happy New Year!
Thank you for sharing so vulnerably and openly. This was such a treasure for me to have read today. I have fibromyalgia and several other chronic illnesses and I get where you’re coming from.
Visiting today from PoCoLo #17
Thank you Paula, I will return your visit
Thanks for sharing so openly and honestly, Anne. I pray that 2023 is a year of you finding hope and joy in the midst of so many challenges. I also like what Sheryl said about expectations.
Thank you so much Lauren x
My chronic condition has made it difficult for me to live a normal life. It has been a struggle to try to understand my condition and the impact it has had on my life. As I write this blog, I am trying to come to terms with the things I have been through. The following is a list of things I want to remember about my condition….
I’m right there with you at rebuilding self-esteem. Chronic illness, especially when it continues to go downhill, really gives our self-esteem a beating.
Hi Anne,
Happy New Year! I’m so sorry to hear that your health is not improving. Thanks for sharing so openly.