How do your illnesses affect you?
I briefly covered this in the last post, so I’ll focus on my life before I was sick and after because the changes caused by them are by far the biggest effect from these diseases.
Before I got sick, really chronically, life changelingly sick I was outgoing, social, I loved sport, I loved reading and I loved studying. I held on to these as long as I possibly could, but now I can do none of them (hence my addiction to audiobooks). Now I possibly go out once or twice a year to socialise, where as I was out every single night before I was sick. When I do manage it it’s always very difficult, very over stimulating, very painful and I have to rest for days/weeks before and spend days/weeks afterwards bed bound because of the payback. Sometimes it’s worth it for that two hours of being “normal” most of the time it’s just not.
Even at the start of my illnesses I could still be me, I did a degree in Midwifery a job I loved and in order to pay for that degree I worked two jobs, one as a domestic (hospital cleaner) and one as bar maid (in a pub I loved and miss desperately). Come to think of it, working as a student midwife 7.30am – 3.30om, then a domestic 4-7.30pm and then working at the pub from 8-11.30pm most days probably had a hand in making me as ill as I got.
People saying that people with ME are “lazy” and that it’s “yuppie flu” drives me insane. If you look at the statistics the majority of people who develop ME are usually the opposite of lazy, they are normally people who often over work themselves, who push through things that others wouldn’t, people who just keep going. This was certainly the case for me.
After I officially withdrew from midwifery I was bed bound for 18 months, I literally worked myself into a wheelchair and then into being unable to even sit up without help. I don’t remember much about that time, just begging for help and being alone. Eating, drinking, sitting, everything was a struggle. Like having a bad bout of flu, with a hangover, after pulling every single one of your muscles the day before. I couldn’t deal with light or sound. It was incredibly lonely.
Eventually I came out the other side, with a diagnosis, a major life adjustment and a incredibly instense knowledge of pacing. Of course being me, I immediately wanted to pick up the pieces of my life and find a new career. I decided that social work would allow me to help people but would be less physicality demanding than midwifery. I knew it would be more emotionally demanding but I was naive at this point and didn’t realise how much emotions would affect me physically. Needless to say over working myself once more and dealing with the complex of emotions invested in social work practice soon led to a relapse. In order to prevent it becoming a major relapse I intermittent from social work to work on my health with the intention of returning within the year. However that didn’t work out the way I planned either (what does?)
Despite being told that the mix of medication I was on would stop me from being able to have children I got the scariest news of my life, yep, I was pregnant with Wildchild. It turned out to be the best thing that’s ever happened to me but at the time it felt like my world was crumbling. How did this happen? I was told this couldn’t happen. How would my body handle it? Would my illness harm the baby? Would my medication harm the baby? What would I do if something was wrong with the baby? I’m not ashamed to say I went into a complete and utter meltdown. Doctors informed me that I was in an “anxiety state” after having panic attacks for a solid 48 hours, this went on for over a week but urgent treatment was started after the first 48 hours. The thought of getting rid of the pregnancy didn’t enter my head though.
The pregnancy was okay, it had ups and downs, I was on bed rest from 34 weeks after a big bleed and was gestational diabetic. But at 39 +1 week Wildchild was born by planned section. She is the amazing and wonderful gift I’ve ever had. Amazingly after her birth my health improved dramatically for a short period of time, I could walk again and fell easily into caring for her and she gave me a reason to be happy and hopeful.
Being a spoonie parent is not all hearts and flowers (although my best guess is no parenting journey is). We are faced with challenges that normal parents are not faced with but we manage, we find our own ways. She’s amazing and she really keeps me going. My entire world revolves around her, my pacing and medication timed so that she has the highest amount of quality time with me that I can give her.
I don’t go out, but I manage the school run (with help). I find ways to do things with her and for her. I go to bed when she does. I rest the entire time she is at school so we can snuggle and have time together after school. I don’t take medication with side affects whilst she’s awake. She is fully away of my illnesses, what they are, what they mean and how they can affect me, whilst also being shielded for the really bad parts. Thanks to careful medication and pacing I’ve managed to stay out of hospital since she was born which is amazing!!
And now, I am shattered, this has taken me all day to write, in tiny stages. I’m sure that there is probably more I could say, should say. But my brain is so beyond fried now it probably wouldn’t make any sense.
Thanks for reading if you got this far! Here’s a picture a good friend made for me a few years ago for ME awareness.