I have three children, all affected differently with elements of Hypermobility Spectrum disorder (HSD), Hypermobile Ehlers-Danlos syndrome (hEDS) and Charcot Marie Tooth disease (CMT) and new to the ever-growing list this year is Chronic Fatigue syndrome (CFS/ME). As well as having hEDS and CMT myself.
We would describe ourselves as a happy family, we laugh a lot, we always make the best of everything life throws at us… a first glance I look like any other parent standing in the playground to collect their children at the end of the day. What you don’t see is that managing our lives takes effort, immense effort. On the surface I hold it all together, I smile, make small talk with friends, make appointments, organise tutors, go for coffee, I’m a good wife, a good mum, a good friend but underneath the facade the cracks are there.
This last 12 months have seen our son decline dramatically with his health, particularly fatigue. To the point that we have had no choice but to initiate home education for him. It has been a bloody slog and although he has improved over the last six months when he wakes every morning I still do not know how he will be. Will he wake? Will he function today? Will he cope with his tutor session? When he is awake I’m constantly checking that he hasn’t fallen asleep, has taken his meds? Is moving enough? Is he overdoing things? Has he done any strengthening work? Has he eaten? Has he drunk enough water?
I must admit I’ve been running at a heightened state of anxiety surrounding the kids for months. My flight-or-flight response programmed constantly to on. I second guess every decision that I make for our family? How can I best care for them? Am I getting it right, Am I asking to see the right doctors? Making the right decisions about school? Pushing them enough? Too little?
But I smile.
Quite honestly it’s like having a toddler at home again, that’s how much thought, time and effort goes into managing my son day-to-day. It is constant and you can’t relax for a minute but it has to be like this if we are going to continue to see the baby steps he is taking in the right direction.
I have two more children. To ferry to clubs, to take to and from school (one still part-time because we are always managing her fatigue so that she doesn’t tip over the edge into the realms of tiredness and meltdowns) plus their hospital appointments, school meetings, phone calls, cooking, cleaning. Life.
My smile shows cracks.
This week I’m tired, it’s the end of a long-term and it’s showing in our house, my dad has just had major stomach surgery so we’ve had two weeks of extra worry and hospital visiting. My son has a bad week, like his illness is throwing all our hard work to get him well straight back in our faces. We’ve also had school reports, teacher meetings, swimming, dancing, Choi Kwan Do grading, birthday parties and god forbid a night in at a friend’s house. My pain is way up. To the point that relaxing my feet at night makes we want to sob and I prop them on pillows in an attempt to sleep. Every time I roll over in bed I wake as something partially dislocates. I’ve also subluxated a bone in my spine for the first time, and it bloody hurts.
The constant drip fed worry makes you feel like you are forever under attack and the long-term activation of the stress-response system and the subsequent overexposure to cortisol and other stress hormones is disrupting all my bodies processes.
The make up is not working.
A few weeks ago I had a conversation with a friend, she has a son with Type One Diabetes. On the one hand our experiences are totally different, diabetes looks completely different on a daily basis to what we deal with. But on the other hand we can relate to each other because caring for our kids, the fights, the worries, the sleepless nights, definitely stir the same emotions in us as humans, no matter what the illness. When her son was diagnosed she remembers being warned about burnout. The professionals taking to her were referring to a patient with diabetes getting burnout, having to care for themselves every day, day in and day out. To be alert, to watch for it.
Then it hits me, these cracks are the first signs of burnout but not because I’m the patient (although I kind of am too) but the caregiver. Everything rests firmly on my shoulders and just lately it’s all been a bit much. When I look closer the signs that I’m not coping have been there for quite a while, I’ve been painting over the cracks each day as usual and pretending that they are not there. Push through, push through. This is my pattern, I should actually know better.
Always, the first step to change is recognising what’s wrong, step one complete. Now I have I have to take the steps to put it right.
My husband often tells to me to stop putting myself last because if I don’t look after me who will look after everyone else.
He’s right… as always.
My 8 Steps To Recognising Burnout and How To Make It Better
Problem: Tiredness and fatigue
I am so tired I can barely put one foot in front of the other this last couple of weeks. I just need everyone to do the normal household things that they are expected to do. The fact that they are not managing to put
their plates in the dishwasher or hang their towels up after a bath makes me want to cry, I just havent got any extra energy left for these things.
Fix: First rest, it’s the start of the summer holidays so no timetables, no tutors, no school runs. I don’t have to set the alarm clock each morning. This will most likely fix itself over the summer but I will need to watch out carefully when we get back to the grind in September so that it doesn’t happen again. I’m going to get the kids involved in little chores like putting their own washing away, clearing the table after dinner etc…
Problem: Lack of sleep or irregular sleep
I’m either shattered and I can’t get to sleep or I get off to sleep then wake in pain as I roll over in bed. Then when the alarm goes off at 6:30 I’m exhausted and my eyes are barely open as I drag myself downstairs to make sandwiches.
Fix: Regular betimes, no tea after 8pm, to massage my legs before bed to limit the cramp that wakes me all – night – long. Slowly strengthen, strengthen, strengthen.
I’m not hungry, my appetite is way down. For lunch I’m forcing myself to eat toast and jam (which I know will not stabilise my blood sugar) but it is the only thing I can choke down. I’m craving carbs. I’m not drinking enough water or having enough salt. I’m also no taking my bowel meds regularly enough and that is affecting my urinary system.
Fix: Put in an online shopping order straight away. Salty snacks a plenty. I am now cooking nice home cooked meals for me as well as the kids, no take aways when I feel rubbish just because they are easy. Every morning I’m filling a large water bottle with a litre of water so that I can clearly see how much I am drinking and aim for two each day. Take my meds, every day.
For months I’ve known that I should exercise more, but I just don’t have the time, the energy or the inclination. I haven’t been to my pilates class since my son got really sick in January. I’ve being trying to keep up with everything at home, really trying, but the last two weeks I haven’t even managed that. Just the thought of walking the poor dog makes me want to sob.
Fix: In September when the new term starts I am going to plan in my pilates sessions before my sons tutors, cleaning or ironing. As of Monday the home exercise programme starts again.
This week I feel furious one minute, sad and helpless the next. I don’t actually know whether to laugh or cry sometimes. I’m finding myself turn up and later at the end of the school day to collect the children so that I don’t have to talk to anyone, or listen to everyone else lives and worries (they havent got a clue). I’m snapping at the kids and I never snap at the kids.
Fix: Take a breath, take some time. Read a book (for the first time in about a year) because it takes my mind somewhere else for a while. Talk (to my husband) just saying how I feel even if I can’t suddenly magic everything better it always makes me feel ten times better, keeping everything to myself so that I don’t worry or burden him is not the answer.
Problem: I am the go-to caregiver. Always.
For my kids I am always the first port of call as my husband works super long hours to support us. Caring for my son lately has been 24/7 and getting him well is even more hard work than when he was super sick, literally planning his day and thinking for him. Finding the balance between helping him to get well and doing too much for him is tough and changes daily. I like to be in control, to have a plan and you can’t be in control of an illness like CFS, it kills me. I’m also the go to for my parents. Mum stayed here while dad was in hospital to visit more easily but I found that I took on extra visiting to lighten the load from her. My door is always open, always, to friends, family, the world and his wife really. While the distraction is often welcomed over time I think it has added to everything.
Fix: First to say out loud that this is tough. I may not be able to change everything but talking helps. Most of all to stop beating myself up about everything, I can’t change everything and I’m doing my best. To say no sometimes, you can’t do everything for everyone all of the time and doing everything for the kids is often counterproductive in the long run, they have to be their own confident, independent selves.
Pain is at an all time high, my autonomic system is way out of whack and then the migraines start coming. This always happens. When the migraines come I have no choice but to stop. I think that it’s my body’s way of telling me enough already.
Fix: Simple, rest and then pace. The summer will be laid back with lots of easy things like the movies or the theatre with the kids. Plus more time for the simple things.
Problem: Social Life
Apart from a night in at a friend’s house I can’t remember the last time I met a friend for dinner or a movie or had a date night with my hubby. I often go to the local Italian restaurant with the kids but that is in an attempt to get my son out of the house for an hour without exhausting him too much, and that is still a work in progress.
Fix: Babysitters are a problem, as always when you have three children and everyone has busy lives. So this week we will take them all with us for an anniversary meal at a lovely restaurant. Fifteen years, where did that time go?!? Date night might look a little different but dressing up and going our will do us all good and if my son can manage three courses without falling asleep it will be a huge step forward and well worth celebrating.
What are the signs that tell you you’re overdoing it? have you found any little things that help? Please share your ideas in the comments below… they may just help 😉