Today is the last day of Invisible illness week 2016. I had had good intentions all week to blog daily, however readjusting to uni life meant that I was coming home from lectures and going straight to sleep. For this week I had planned to blog about achieving despite illness, and general spoonie hacks for coping with day to day life. Instead I’ve decided to leave these topics for another day and address the reality of what happens to someone with chronic illness when they catch an ‘ordinary’ bug.
I have spent the majority of today curled up under my duvet feeling frankly rather pathetic. Having caught a sicky bug and then developing a kidney infection I’m not feeling overly fantastic. Instead all my joints have been in a constant state of flare up pain, I have struggled to remain sitting upright for any length of time because my back feels like I have Snow White’s 7 dwarfs performing an irish jig on it; to walk the measly few steps from my bed to the bathroom has involved me gripping on to my walking sticks as I don’t trust my dodgy joints not to slip out of place and add to my already elevated pain levels. This is my reality every single time I catch some sort of acute bug. It sucks. Whenever my partner or my housemate has asked me what they can do to help, I’ve asked for a new body. It’s a silly retort and a bittersweet one at that. For a brief moment I’ll smile, as I know how unattainable that is, and then comes the downwards spiral because there are nowhere near enough words in existence for me to express how much I wish I could just have a new glitch free body.
credit: Pinterest – Spoonie Awareness
My mental well-being always takes a blow when I feel ‘iller’ than normal. So finding positives in each moment helps. Today I’m celebrating the fact that I recognized I needed a time out from life, I’m thrilled that I actually managed to change into a fresh set of pyjamas, that hell yeah I managed to walk through the pain with my stick, and sure I only managed a wee while but I still managed to accomplish some revision.
Sure I may be moaning and feeling rather sorry for myself, but I’m over the moon that I still managed all these positive moments. Tomorrow I’ll wake up to a new sunrise, and hopefully experience far less pain.
Independence has been a big issue for me ever since Dystonia hit me. I went from living at uni and being very independent to moving back into my family home and relying on my family to do everything for me. Simple things like just going to get a drink or going to talk to a member of my family in the other room became impossible tasks. To get around my house I relied on my parents to put me in a wheelchair and wheel me round. I often found and sometimes still do, that I push myself too far in my attempts to do things for myself and end up causing more spasms, however this never bothered me as I still get that sense of achievement by accomplishing the task.
In the beginning simple things like that fact I could dress myself and do my own hair and makeup were enough for me, as even though they were hard I managed to do them without any help. Sometimes this meant it took hours but I loved it. Over the months though my desire for more independance built up. I managed to fulfill this desire once a week by riding, where I was in complete control of both body and horse.
Recently though I have been trying to explore ways where I could expand my independance without risking setting off more spasms. At first I was drawing blanks, then it hit me! I could bum shuffle! For those of you who are unfamiliar with bum shuffling it is when you sit on the floor and move using your legs and hips to pull you along, it takes awhile but it gets the job done.
This simple technique has left me thrilled. There are still moments where I need to be in a wheelchair as my spasms are bad and I am simply not well enough to do it, but the majority of the time I am able to. Things like going into the living to watch TV with my family or have a gossip are now so much easier.
Last year I felt like it was the end on the world and that Dystonia was consuming every aspect of my life. Now I am an empowered determined fighter, craftly finding ways to get around the Dystonia. One day I shall be completely free!
There is currently an advert on the T.V (I can’t remember which one it is, it looks like a Christmas one) that has a line in it that I love, ‘Take the good with the bad’. This is so true, everyone goes through good and bad experiences in life, and at the end of the day, it is up to them what they choose to take from that experience.
Dystonia is not what I would call a good experience, to be rather honest it sucks and I would rather not have it, however this does not mean that I won’t take something positive from the experience. For example, because of Dystonia I did a charity run and raised £715 for the Dystonia society. Instead of focusing on all the negatives that Dystonia causes, I make myself think about the positives, such as I managed to wrap all the Christmas presents I had brought one-handed and they looked better than normal, I even wrote my Christmas cards with my left hand!
I understand that sometimes it can be hard to focus on the positives when you are in the midst of a bad time. However I think that forcing yourself to focus on the positives is the best thing you can do, it gives you a distraction from the negative. There is no point in sitting around wallowing, when you can be thinking of the positives; such as your personal achievements, and trying to figure out how you can make something good out of the experience.
My quote of the day has to be ‘Pain is inevitable. Suffering is optional’. I find this quote rather fitting. Having dystonia means that every day and every night in full of pain, some days worse than others. However just because I am in pain does not mean I should stop and give up. If anything I embrace the pain, I accept that it is part of me but it does not define me.
Dystonia makes many daily activities like cooking, washing my hair, going for a walk etc. rather hard, but that is no excuse for me to lie in bed all day feeling sorry for myself. Instead it inspires me to get up and go, to think what can I do and then go and do it. I love horse riding, its going to be difficult to do, but I am not going to let pain stop me from giving it a go!
Dystonia causes a hell of a lot of pain. I am going to achieve everyone of my goals despite it!