I was very kindly asked by the lovely Ami if I’d like to share my story of living with multiple chronic illnesses for her ‘The Reality Of…’ series. She set out a couple of questions for me to answer & shared it on her fab blog, Undercover Superhero. I’m also sharing it on my blog here. You can find my post & check out Ami’s blog here.
I tried to keep my answers somewhat concise, so I’ve not covered every aspect of my illnesses or what they’re like to live with as I didn’t want to send people to sleep. I’m sure some of you will be able to relate to the reality of multiple chronic illnesses because some of us are too greedy to just have the one..!
Who Are You?
I’m Carol, but I go by Caz. It causes problems when cashing cheques and signing forms. I’m from a little corner of the grey and rainy UK in Gloucestershire.
What Chronic Illnesses Do You Deal With?
In no particular order, the prizes I’ve won so far are : A stoma bag (ileostomy, large bowel removed), chronic pain, osteopenia (thin bones), suspected undifferentiated connective tissue disease, bronchiectasis with lung inflammation and scarring (long term damage from recurrent chest infections the other year), anxiety, ME/CFS, fibromyalgia, chronic migraines, Raynaud’s & erythromelelgia, pernicious anaemia.
Chronic pain is a chronic problem. Some is more generalised and what you’d class as fibromyalgia pain, but most is from nerve damage and related pain following my first surgery in 2015. Back and hip pain can be particularly debilitating, with my hips feeling like they’re on fire. Chronic migraines are no picnic either when you get 5 days in a row and it feels never-ending because they’re so ridiculously immobilising. I’m cold, all the time. The palm of my left hand is always either blue, bright red or purple. So-called ‘brain fog’ makes thinking and logical processing or writing like trudging through mud. And exhaustion. Bone-deep and smothering exhaustion.
How Do These Chronic Illnesses Affect You?
Well, I lost the job I loved as a community advice and support worker because of ongoing surgeries. I’d hoped to train as a Clinical Psychologist, to have a family and all that jazz, but that went in the blink of an eye.
On a day to day basis, my illnesses and pain slow me down. Stoma problems have landed me in A&E far too many times and you never know when problems will strike. Similarly, other symptoms can flare up randomly and throw you off course, and there are many days where I feel less able to manage everything all at once. You have to know when to give in a little and rest, and when to keep fighting through, which isn’t an easy balance to strike.
Nonetheless, I know I’m luckier than many, and that many have far worse problems than I do. But comparing yourself to others isn’t a good idea either; you feel how you feel, we all cope differently, and one person’s problems can’t fairly be compared to any else.
Pain and nerve issues that affect my back and hips make walking difficult. Migraines make anything almost impossible. Fibro fog makes thinking and writing a challenge, where work takes far longer than it should to complete. I don’t regulate temps well so I’m always cold, but I can overheat without realising it given the goosebumps on my arms under 5 layers of jumpers.
Sleeping isn’t great thanks to breathing issues, pain and my stoma. Because of my coccyx, hips and other areas, I can’t sit normally in a regular chair anymore, so I spend my days propped up in bed.
This is just a snapshot because symptoms are varied and they impact life in so many ways, I couldn’t cover it all adequately here, but you get the picture.
How Have You Learned To Adapt?
There are various ways I’ve had to adapt; some I do okay at, others are still a struggle. I’ve had to adapt my perspective and expectations in life, and I try to find the positives in a situation. You’ll often find some good to come from a situation or some lesson to learn, some way an event or your illness/pain has challenged you to grow. Sometimes you just have to squint to see that good stuff.
I struggle with trying to be more flexible sometimes and with not getting disheartened. But my main issue is with stress. I have anxiety and that gets under your skin, but since losing my job and trying to work on a self-employed basis doing online surveys and freelance writing, earning not enough to even cover groceries, I find I’m constantly trying to be busy when I’m not well.
I’m continually stressy and overwhelmed. When it comes down to it, I’m a hypocrite: I encourage others to prioritise self-care and reduce their stress levels, but I fail to do those things for myself.
In adapting to some symptoms, I’ve found certain medications beneficial. It took me a long, long time to accept the need for medications, whether that’s Citalopram for anxiety, Sumatriptan for migraines, or Tramadol for chronic pain. Now I’m more able to work with these guys, integrating them into my life as required to give me some semblance of a life.
Nothing takes away chronic pain, but some medications and lifestyle adaptions can help take the edge off to make things that little bit more manageable. Coping strategies for physical aspects include the likes of pacing, hot/cold pads, orthopaedic pillows and pain relief gel. To balance me mentally, things like practicing gratitude, trying to be more mindful, taking regular time outs and prioritising self-care are all important. Dealing with chronic illness and chronic pain can certainly take a toll mentally.
I’ve also found the online world to be such a blessing. It’s helped me educate myself around my health so I can advocate more effectively for myself. I’ve also found such a welcoming, compassionate community. When your social life is extinct, online friends are to be cherished. I’ve additionally found my blog gives me a sense of purpose, a way to give back a little and connect with others. It’s good to know you, I, we are not as alone as we may sometimes feel.
I’ll leave it here as I feel these sorts of lists could go on and on and I’ve probably bored you all into a deep sleep by now.
How Have I Changed As A Person?
Empathy – I think I’ve always been quite emphatic but having gone through what I have, I feel that’s been heightened. I’m far more aware and knowledgable around chronic illness and mental health, far quicker to jump to someone’s defence because you truly never know what’s going on in someone else’s life or what conditions they may be coping with.
Contentment & adapting my perspective – I’ve learned to slow down and find a greater sense of contentment without feeling I ‘should’ be doing other things. When possibilities are closed off to you and the playing field changes, you start to realise many things aren’t things you want, they’re things society tells you to want, things you feel you ‘should’ want in order to be an independent and interesting adult.
Of course, there are also things that I do want. I’d like my social life back, I’d like to go out more, to have a partner, to have my own place and have children and a successful job and various things I used to take for granted as being part of my future. I feel a lot of loss.
It’s harder to accept those aren’t on the cards and that life isn’t as easy-going as it could/should be physically, so it’s a case of adjusting your perspective; maybe you can aim for something outside the box, change your expectations or find other paths to reaching your goals. Chronic illness has made me challenge and adapt my expectations and perspectives time and time again.
Joy in the small things – Adjusting my perspective and slowing down has made me far more appreciative of the small things. The simple, small joys in daily life. I’m also super appreciative, for example, of coming home after I’ve had to go out and lying propped up in my bed with a blankie and a cuppa tea to work or to read a good book. Heavenly!
One of the not so good things, along with stress, comes guilt. This has been a huge factor, and I’m not sure where it came from. Guilt for being ill, for losing my job, for not being where I ‘should’ be in life; guilt for being miserable, guilt for smiling, guilt for not doing more or being more… there’s just guilt everywhere.
The last one I’ll note here is a positive, in that I’ve become more confident in some areas. Having to fight, over and over again for years of being fobbed off by various doctors and specialists, has honed my assertiveness. I’m more confident in dealing with the medical ‘professionals’, and that’s spread to other areas of my life.
Never forget that your health is worth fighting for; be your own advocate, trust that you know your own body, and never give up.
My Favourite Superhero?
Iron Man. And not just because I have thing for Mr Downey Jr. Or because Iron Man just looks so damn cool. Inside the suit he’s a normal guy, as normal as you can be when you’re Tony Stark, rich genius inventor extraordinaire.
The suit gives him the ability to do amazing things where he’s not confined to human limits. When something breaks, it can be replaced. When something’s damaged, it’s can be repaired. If only we could do that with the parts of our bodies that don’t work as they should!
InvisiblyMe has now been very kindly nominated for 8 Wego Health Awards! A huge thank you to all that have nominated & voted, it means a lot to me. Voting is open until 31st July. You can find out more here & cast your votes for the nominees here.
Further Reading :