I no longer live alone. In fact, the period of my life where I was alone has dwindled to a tiny slice in the pie of my life. I have been married two and a half times longer, for one. Looking at how I approach things in my life, I often still feel as if I am alone, as if I am the only person who cares about my priorities, as if only I know how difficult my life often is and the worst one of all, feeling as if loved ones have it easier than I do.
I know none of these are true, but in a migraine month with seizures, a couple of nasty falls, chronic icky sore throat chesty colds, a flare up of my asthma, an allergic reaction the flu jab and a to do list higher than mount Everest, I feel those familiar sentiments worming their way deeper and deeper in as resentment, fear, anxiety, sleep deprivation and the neurological storm clouds of migraine brings chaos to my thoughts, feelings and life in general. I need help and I have help, but I am not utilizing the help I’ve got. Here is the best plan I have to stop shooting myself in the foot:
1. Accept that I need help
It often feels as if by now I should start to feel entitled to help. After so many assessments over so many years, 95% of them conclude that I need a ton of support and that I am severely impaired and cannot sustainably carry out tasks of every day living without assistance. I live in my bubble where my reality is the only reality I know. The things that raise eyebrows and result in gasps and shoulder pats of pity are quite often things I do not even give my full attention to. I will fiddle with a finger or a wrist or a knee cap to try and slide it back a bit more as I carry on a conversation. I keep working on the site whilst I am having an asthma attack severe enough to prevent me from being able to say more than a word at a time, if that. I am resilient. I know that. And my symptoms, in the greater scheme of things, are not that bad either. Except on the rare occasion where they become life threatening and I don’t mean the twice a week asthma attack that drops my oxygen saturation level below 90%, I mean the really tough ones that drops them below 80%. It doesn’t occur to me that medical guidelines define a life-threatening asthma attack as below 92% and that others follow a different set of rules than I do. The rules they follow are much more lenient for mine.
2. Be patient, wait for help and don’t do it yourself
Yesterday I dragged a dining room chair from the kitchen to the lounge. It hurt my knees, back, wrists and shoulders for hours afterwards and I knew at the time as I lugged it along that I was hurting myself doing this and that there would be consequences. I did it anyway. Last week I picked up a paint brush to help out with the decorating. It feels awful sitting in a chair to all appearances lounging whilst everyone else works. I didn’t tell anyone that standing up made me faint and that’s how I got paint and floor dust all over me. Also that is why I am limping quite badly and hitting my head on the bare concrete floor on landing as my other arms were too sore and wobbly from trying to paint to put them out to prevent that hasn’t helped my migraine. The most persistent, exasperated comment I receive from loved ones is “Please, please stop. Just sit down. You are creating more work and now everyone is watching you terrified of what may happen if we don’t and nothing is getting done.” It’s a statement that makes me feel awful. I do not want to be a burden, that is why I am helping. It takes courage to realise that sometimes the best way to help is to do nothing and just take care of yourself so others can do something other than monitor you.
3. Give others room to do it their way, but don’t withdraw advice and guidelines.
Never ever micromanage. It is one of the biggest mistakes I make. Also, never supervise anyone too closely. Another mistake that I easily make. I hover. It is hard to let people get on with things when I know they will do it their way which may not be the right way. Thankfully, I am not the type of person to obsess about procedures, I really do not mind how anything is done, so it could be worse, but I want a particular end-result. I want food to turn out the way I like it. A bit too crunchy and I get mouth sores or worse dislocate my jaw chewing, a bit too rich and I have heartburn all night. I look at a dusty spot and wonder if this is going to lead to a night of breathing problems. My life is filled with triggers, so many I cannot avoid them all, but I try to avoid as many as I can without becoming neurotic. That seems to be almost impossible as well as I have an obsessive compulsive nature, but I work at it as much as I can. I know that tasks seem easier when someone else do them. I made a list, follow the list and it should lead to perfection. I also know that it does not work like that in practice. Problems crop up, time constraints kick in and everyone has to pick their priorities and their top priorities will not necessarily be the same as mine.
It is very easy to spot flaws and things that haven’t been done or done badly. If I follow this path of least resistance, it tends to lead to a glass half empty view of life. I see flaws, errors, mistakes, half-finished projects and not only do I get depressed, I start treating the people trying to help with some resentment. Once I begin to focus on the positive and particularly on the initiative taken – a hot water bottle ready in bed to warm my feet, laundry done because the basket was full, a cat forgotten outside brought in – life gets a positively rosy tint. It is easy to feel as if nobody understands and nobody cares. It is quite often an incorrect assumption and noticing the things that are done makes it easier to feel grateful for the help and support provided than it would be to feel resentful for overlooked details.
4. Sharing is unavoidable, it’s never too late to learn how to do it well
I meddle and interfere. I know that and so it is that I have an on off switch when it comes to working with others. I ask for help and then I leave. I am absolutely terrible at sharing. I do think sharing is one of the most difficult things to master and as I try to teach my almost three year old the difference between sharing and taking turns, I realise that it is a skill I have not mastered. We share the herb garden. This means that we have to agree on which herbs we get, where we plant them and what we do with them. I want to use them in recipes, nothing livens up a potato salad, pizza or boring sandwich like fresh parsley, oregano or mint. She likes picking the leaves and smelling them, that’s what her garden is for. I think that’s a waste and she is mortified when I want to chop or boil them. “NOOOOOO, you can’t do that!”, she says and then grabs them and straightens them out carefully, “they are for smelling, like this, I will teach you.”
I think the secret of sharing is having an abundance. It is harder to share one biscuit than it is to share a plate of biscuits. It was very difficult to share one small pot of parsley, but it is becoming increasingly simpler to share the thriving huge bushes as we can both have as much as we want without affecting the other. Sharing, in a lot of ways, are letting go of things and embracing people. I am all for that sentiment. I love having a clean, neat, tidy house, it makes my life just that much easier. I can’t always see or hear very well and when I stick my hand into the spoons and I am cut by a knife hiding there, my first reaction is one of annoyance. Then I take a deep breath and think how much worse I would be off if someone else hadn’t stepped up and washed the dishes and packed them away. Sharing is very difficult, but the more I do it, the more I realise that the benefits of sharing well far outweighs any consequences. People are more important than things. And when it comes to people, the whole is bigger than the sum of its parts.
5. Set long term goals and create timeless guidelines
I am a keen list maker. This helps tremendously. I am very bad at consistency, this really doesn’t help me work well with others. I make lists, I organise tasks and then as life unfolds, all my lists and organisation falls apart under the pressure of time. There is an outdated meal plan tacked up in the kitchen. There is a weekly task list with last centuries’ date on it. I never got around to updating it. A migraine happened. I forgot. The little one got sick. We had a slew of doctors appointments that for some odd reason always come in clumps. My to do list slowly fades and it leaves everyone else wanting to help, but not sure what they can do.
The best solution I have been able to come up with is to create timeless lists that do not require regular updates. For regular tasks, I am starting to use a Google calendar more and more to schedule these at regular intervals. I try to let general low priority tasks slide and to focus on safety first. For example, a sharp knife in the drawer instead of the knife rack is a potential injury waiting to happen, a mixing spoon put away with the dessert spoons is not. My personal priorities are safety (tripping hazards, sharp stuff, hot stuff) and access (keep passages clear and clutter free and the loo seat down without the little one’s training seat left on it). If I start focusing on filing books alphabetically and tuck sheets in with hospital corners, I take a deep breath and find something else to invest my energy in.
Living with a limiting condition is complex and personal. It isn’t fun having to ask for help with intimate tasks and it is hard to admit that I often use the stairs, which is why I have had three stair related falls this month, instead of the stair lift because holding down the button to lower the ramp dislocates joints in my hands and I would rather play the odds, after all I do not fall every time, than summon someone to come and push a button for me. I am impatient and spending my life waiting for other people and then waiting for the lower ramp to ever so slowly drop down before I can even start going down the stairs is hard for me to do and keep doing repeatedly. It is often easier, quicker and more to anyone’s liking to do something themselves and do it just the way that they want it. In the long term, it is counter productive and when you can only do a small number of things each day, life turns into the dredge of every day things that never ends and does not really matter.
It is difficult to plan wisely when your brain is in chaos due to lack of sleep, chronic pain or some neurological issues, but it is important to take a step back and sit down and plan anyway. Even if planning never makes it as far as meal plans, at least think 12 hours ahead. Spend time wisely. I try to choose one thing to do every day that makes me feel as if I am contributing to society. I also read the bedtime stories every night to my almost three year old even if I have to be carried to her room or can’t hold the book. I have one weekly lunch that I only miss on extremely bad weeks. I would not be able to do these things unless I allowed other people to help with the every day things.
Asking for help is difficult, but it is worth it. Things that wouldn’t get done otherwise do get done, unreliable households like mine become more stable and reliable and most importantly, if you get it right, the people who help become more than just people who help and it turns out that sometimes they help in subtle ways that I am not sure they even realise. The gardener who brings his friendly dog along that has the little one running from window to window, impatiently waiting to be let outside to stroke him whilst the cat hisses and claws at the glass door makes me smile. Hearing about other people’s lives and families makes me forget about The Headache I’ve had for much too long just for a bit. Having people around helps. I still need quiet time and breaks and a room to retreat to, but being able to ask for the help that I need rather than having to just accept what help is on offer is nice. And once people learn just how you like your tea and when to talk and when to leave you be, that’s when you know that the helping hands you have surrounded yourself with are invaluable.