Welcome back to another instalment of Chronic Confessions! If you’re not too sure what this series is, have a read of my introduction post here. Today we have the lovely Cara Mccall who lives with M.E./C.F.S. and has bravely and kindly agreed to share her story with us. Without further ado…
I’m 21 from Scotland and I love illustration and art. I am extremely creative and love finding new ways to express my creativity. A lot of the hobbies that I love, I can’t do much of because of my disability; like screen printing and drawing but I enjoy every minute when I feel well enough to do them!
I was diagnosed first by a doctor then a neurologist. I had lots of blood tests to rule out any other nasty diseases but as M.E/C.F.S isn’t diagnosable through blood samples they came back clear. It got to the point where I had to beg the doctors for some extra help as I was getting very ill so they sent me off to neurology who diagnosed me and set me up with a local Occupational Therapy team who have been a blessing yet a burden at the same time.
Diagnosis took 6/7 years. I was ill from age 11 or 12 but didn’t get a formal diagnosis until I was 18.
I had done a lot of research prior to my diagnosis so it wasn’t a surprise but as M.E is incurable I was angry that it wasn’t something with an easy fix.
I do yes. M.E seems to be a diagnosis for when doctors do not know what is wrong with someone’s body. Doctors don’t know what M.E itself is so that frustrates me, it’s more a description of symptoms rather than “this is what’s wrong with you”.
I suffer from extreme fatigue, mobility issues (I occasionally use a walking stick), sore joints and muscles, dizziness/nausea, headaches, sore throats, brain fog which causes me to stutter at times and forget what I’m saying and temperature sensitivity to name a few. I currently am unable to work or be in education but hopefully can get back to college or uni in the future.
The cause for M.E can be trauma, a sickness, an operation, basically anything that causes your body a lot of stress and your body is just unable to recover from it. For me it was Swine Flu when I was 11.
I tried Graded Exercise Therapy and it was a big fat no! It’s a therapy that health officials are ruling out as a treatment to M.E/C.F.S because of the damage it can cause.
I am on an antidepressant called Duloxetine. It helps with nerve pain and also helps lift my mood as I do tend to get down when my symptoms flare up. I take very strong painkillers called cocodomol, which make me very drowsy and very constipated, great fun.
Excessive activity seems to be the worst or even a reaction to something. For instance my most recent flare up was a reaction to caffeine. Flare ups can be caused by anything, I’ve had flare ups from having a shower or making myself toast.
I have an amazing support network in my friends, family and boyfriend. I am receiving outside help from Occupational Therapists but I feel as they introduced Graded Exercise Therapy that they done more harm than good.
I have lost a lot of friends being ill which sucks but it does weed out the “fake friends” I suppose. Romantically it affects my ability to do things with my boyfriend and it affects our sex life at times but he is the most understanding and caring person ever!
Yes, I had to drop out of college so that set me back in gaining a degree. I will graduate one day!
Most days it does affect my MH, I am such a high achiever so not being physically able to achieve high really gets me down. My occupational Therapist has referred me to a Psychologist so I can gain a more positive outlook on my life with limitations.
My family home has had to be adapted to accommodate a shower and shower stool. My mum helps me out so much around the house and makes sure I’ve been fed. My boyfriend helps me too, getting me food on bad days, giving me massages when I’m extra sore and taking things at my pace so I don’t burn out.
M.E isn’t just being tired; it’s a debilitating condition that really does steal many people away from regular life. M.E lacks so much funding and receives less funding for research than hayfever.
It’s okay not to be productive all the time. I don’t have to be achieving 100% of the time and I can take life at my own pace.
Don’t be so hard on yourself, take extra care of yourself and be nice to your body!
A quote that keeps me going is “Be still”, it reminds me not to push myself too much.
Til ‘Next Time,