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…
You And Your Condition
Tell us a bit about yourself and interests!
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!
What is your diagnosis/condition(s) and what was the process of it?
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.
How long did the diagnosis take and at what age did you receive it?
Diagnosis took 6/7 years. I was ill from age 11 or 12 but didn’t get a formal diagnosis until I was 18.
What were your initial feelings following diagnosis?
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.
Do you believe you have any other undiagnosed conditions?
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”.
What are the symptoms of your condition(s) and to what extent do they affect your everyday life?
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.
Is there a cause for your condition(s) or is it currently unknown?
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.
Have you had to undergo any difficult procedures or surgery and has it helped?
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.
Life With Your Condition
Are you on medication for your condition(s) and do you get any side effects with it? How do they affect your life if so?
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.
Are there any known triggers that set off a flare or make your condition(s) worse?
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.
Would you say you have a good support network and a designated person/team to help you with your condition(s)?
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.
How would you say your condition(s) has affected the relationships in your life?
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!
Would you say it has affected your goals in life? If yes, in what way?
Yes, I had to drop out of college so that set me back in gaining a degree. I will graduate one day!
Would you say it has negatively affected your mental health? If yes, how has your experience been with that?
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.
What lifestyle changes have you and people around you had to make to accommodate your condition(s)?
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.
Last But Not Least
Is there anything else about yourself or your condition(s) that you want people to know?
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.
What are the main things you’ve learned through having your condition(s)?
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.
Do you have any advice for newly diagnosed people with your condition(s) or a long-term illness?
Don’t be so hard on yourself, take extra care of yourself and be nice to your body!
Lastly, tell us something positive that keeps you going. A quote, a song, anything!
A quote that keeps me going is “Be still”, it reminds me not to push myself too much.
Til ‘Next Time,