(This post is written by my Mum, as her point of view of my Chronic Illness journey.)
“What do you see when you look at my daughter Katie?
You see a beautiful young girl. You look at her and would think she has no worries, no cares, has her whole future ahead of her. But let me tell you about the Katie I see and I know.
Katie is a battler.
She has battled so much over the last 8 years or so, often without the belief of others. For most of this time she hasn’t known what she is battling.
More doctors appointments, blood tests, X-rays, scans and therapy sessions than most people have in their lifetime.
Has all this affected her ? For sure.
How did it all start?
Well, that’s hard to really pinpoint but for me, her Mother, the Katie I brought into this world started changing in front of my eyes from about the age of 13/14. It all started as the result of the actions others. Katie was physically attacked and assaulted by a couple of girls, they kicked and punched her to the ground. This attack may have only lasted less than a minute or two but the effects of it lasted so much longer and with subsequent results.
Katie lost her confidence, became very angry and would barely leave the house without me or her sister. It took me 18months to get her to even go shopping with me and even then she was always only one step away from me. She became very down and we sought professional help.
Over time her confidence picked up but, unbeknown to us, her immune system was not at its best. She started to complain of a sore throat and, me being me, just kept telling her it’s only a sore throat, take some painkillers and suck some lozenges. If only I knew where it all would lead 😞.
After months of feeling unwell I eventually took her to the doctors, she had blood tests which came back showing that she’d had Glandular Fever 😳.
THIS is the point when things really started to unravel.
Her immune system got to a point where she was constantly feeling unwell.
Months, years of tests and elimination of all other possible explanations we were left with the diagnosis of ME/CFS .
What is ME?
Myalgic encephalomyelitis (ME) is characterised by a range of neurological symptoms and signs, muscle pain with intense physical or mental exhaustion, relapses, and specific cognitive disabilities.
During the 1990s, the term Chronic Fatigue Syndrome (CFS) came into use.
Katie can identify with each and every one of the following symptoms :
difficulty with sleeping, such as insomnia, hypersomnia,
unrefreshing sleep, a disturbed sleep–wake cycle,
muscle and/or joint pain that is multi-site and without evidence of inflammation,
painful lymph nodes without pathological enlargement sore throat,
cognitive dysfunction, such as difficulty thinking, inability to concentrate, impairment of short-term memory, and difficulties with word-finding, planning/organising thoughts and information processing,
physical or mental exertion makes symptoms worse,
general malaise or ‘flu-like’ symptoms,
dizziness and/or nausea,
palpitations in the absence of identified cardiac pathology.
This can leave her practically bed bound and almost certainly housebound for varying lengths of times.
You may see her out and about and think ‘she looks ok’, ‘she looks well’, and you’re right; she does LOOK ok but that’s the point of ME/CFS, it’s invisible. What’s going on on the inside doesn’t show on the outside.
Katie has learnt how to put on an ‘act’; to force herself to still be part of life but the repercussions can take days, weeks and sometimes even months to recover. She never does recover fully; she recovers enough so she can cope.
Take her birthday in November as an example. Katie had been planning her 21st birthday since she was 19!! She knew exactly what she wanted and how her party should be, it became her focus and her drive. She achieved what she wanted but all this came at a cost. Her birthday party was 10th November and she knew, we all knew, that there would be consequences to the amount of energy all the planning and celebrating would take on her. The thing is, it doesn’t happen straight away. By early December she was getting to the point she could barely function. Her birthday took more of a toll on her than we ever imagined. She was the lowest I have ever seen her. You see, what Katie does is she shows the world she’s coping but I see she’s not. When she’s at home I miss her smiles, I miss her laughter, I miss her interactions because all her energy is taken up with just coping with being HER. It’s heartbreaking 💔. With me she can be her. No acting required, no make believe. With me I see KATIE.
She’s now been off work since beginning of December and she’s slowly making progress enough to hopefully return to work soon; returning to work with recommended adjustments.
So please, when you see Katie or anyone else who looks ok, think for a moment about what you don’t see. And it’s not just Katie this effects, it takes its toll on the whole family. There is no cure. There is management and we are still learning and there’s so much more to learn. This is a journey we will take together and together we will cope.”