Each month I join up with Cheryl from A Chronic Voice, to use her writing prompts to tell my readers about how I am coping with my health issues. The June writing prompts are; Searching, Hoping, Traumatising, Honouring and Responding.
I have been searching online for gifts for my husband for Father’s Day, my brother for his birthday and my eldest daughter for her birthday…all in June. Then I have the kids birthdays in July and August. Searching often takes place online anyway as I don’t get the privilege of browsing shops like I used to. Now, I am even less keener on going out.
I’ve also been searching for some comfort and peace in this crazy world. It does sometimes feel like the world has gone mad and people just don’t seem to make sense to me. I know that my out look on life has become different since I became sick and disabled, but I always feel as though there is always a place for compassion. Sadly, this world often seems to be missing compassion and I feel as though I’m missing something. So, somewhere in this crazy world is my place, but I’m still searching for it.
I always try to live by hope. If you don’t have hope then things start to fade fast. I have lost hope in the past but deep down I still hope that there is a treatment for me that will actually work. I also hope that one day I’ll be able to move and walk again. When I first got sick I was told that I’d be walking again in around 8 weeks, it seemed like a lifetime to a generally fit person. 12 months later I was given a different diagnosis and although my consultant said I could get better, nothing we have tried so far has had any effect. Hope is easy to let go of in these situations. But I will keep trying, maybe my diagnosis is wrong, maybe the treatments aren’t working because the real cause isn’t being treated? I hope that I can find a way.
I also have to keep hoping that my children will be okay. My daughter is getting older and her physical problems are becoming even more of a problem. But I can see signs in my younger two children as well. They don’t complain much, but I still hope that when they have their genes tested that all will be okay and we can all hope for a brighter future.
Finally, I hope that there is healing for this world and the crazy situation we find ourselves in. There has to be an answer out there, surely this can’t be how it has to be from now on.
Last month was very traumatising. Luckily we have been untouched by the virus thanks to our carefulness in staying home and avoiding contact. As part of the Office of National Statistics testing we are also positive that we are not infected with the virus as we get tested regularly and will be tested for a year. But that doesn’t mean there hasn’t been trauma.
I’ve been traumatised by a couple of poorly episodes. One day when my pain was so bad I couldn’t move all day, but the pain seemed to be starting from the right side of my brain, right where my unwanted resident Walter resides. It was quite worrying for a while, my family were quite traumatised.
Then last week I had a spasm just as I was getting into bed but it worked in a different pattern affecting my right side when they are usually left sided. Also, the spasm affected my neck and caused me difficulty in breathing. Thankfully my husband was there and he was able to move me into a position where I could breathe properly and then the spasm in my neck eased quickly. The rest of me stayed in spasm all night which wasn’t much fun. But at least I didn’t feel like I was dying.
Also, Star, who has Elhers Danlos Syndrome and has had surgery on her cervical spine, had a day when her neck was hurting real bad. We decided she needed a better pillow and bought a special one to support her neck. The pain subsided after a few days, but I hate seeing her suffer and it brings back all the trauma of what she’s been through in the past.
Finally, and I did say it had been a traumatic month, Graham had a nasty accident while attempting to fix our washing machine. It should have been an easy fix but it involved stretching a wire and fixing it together, his hand slipped and hit the metal rim of the inside of the washing machine. It sliced right through his hand severing the tendon to his thumb by 50%. Had it been any more he would have lost the use of his thumb permanently. Now, he has his hand in plaster and won’t be able to use it for weeks.
Tough one this, but I’ll have a try. Can I go with honouring a promise? My entire life has been built around protecting my family. I’ve not done a brilliant job in some cases, especially in the early days, I got a lot of things wrong. But I promised that we would stay safe during this epidemic and we have done everything we can to honour that. We haven’t been out, Graham is the only one to have left the house, and then that has only been when necessary and he’s taken every precaution. Also we haven’t socialised, met up with friends and family, taken trips or been in crowded places.
We don’t have any plans to be going out any time in the near future. We are not safe yet, this epidemic is not over and I will do what I can to honour my promise to keep my family safe.
I have to admit that my personal response to the events of the past month have been quite intense. I’ve felt like shouting at the television and computer screen on many occasions, but I think I’ve reigned myself in quite a lot. Its not that I don’t want to have my say, get my views across or stand up for what I believe. But I do think that sometimes you are yelling into an echo chamber and it’s not good for your health.
I try to inform people when they have got things really wrong or are spreading things that are simply not true. But to be honest, I have almost given up completely on responding to anything. There is just no point, everyone has their own opinion and, well, they are entitled to it.
Click image for June’s Link up
See my last Chronic Illness Writing Prompt here.