I am extremely competent and one of the strongest people I know emotionally so there is a tendency for the people around me to think I never need help. But we all have times in our lives where we need support, whether that’s practical, emotional or otherwise, and I am currently at one of those times. I have looked after my parents during the pandemic for 15 months without a single day off and I am on my knees in every conceivable way, but actually finding the practical help I need is proving elusive.
My sister-in-law rang me the other day to say that she would sleep at my parents house one night to give me a break. Which was really kind of her, but when you have M.E. one good night’s sleep (not that I would manage that as my hip pain is currently keeping me awake much of the night) is next to useless. In the last 7 weeks I have used up my energy reserves for the next 4 months and what I really need is 4 months in the Bahamas doing nothing but swinging in a hammock just to get back to the level of illness I had in February, but when I tried to explain to my s-i-l that one night’s kip wouldn’t make even a tiny dent in my fatigue I was met with exasperation and the insinuation was that I was a martyr and making my life harder than it needs to be.
It is familiar territory. I have been blamed for the complex, unusual symptoms of my illnesses from the get go. I don’t fit neatly into most healthy people’s image of an ill person because “I don’t look sick” and their only experience of “fatigue” is the healthy tiredness experienced after a 15 mile trek up the fells or a busy week at work. A couple of lie-ins on the weekend and they’re raring to go again. There is simply no comprehension of the complex nature of the fatigue and illness symptoms of M.E. or the unrelenting pain of hEDS.
For example, when I’ve been in an M.E. relapse a couple of my neighbours have offered to walk my dog for me but it’s been on their terms. Even though they are at home all day they’ve wanted to take him out at 5pm, smack in the middle of my worst time of the day when I am usually in bed. I would then have to get up out of bed to hand him over and get up again at 5.30pm to dry him off and accept him back, meaning I’d had less rest that day not more! To me, if you’re offering to help someone you should ask them what they need and fulfil that need. You shouldn’t ask the person what they need, then say you can’t meet that need because it interferes with your own life. Most ill people struggle to ask for or accept help at the best of times, so when they do it should be made a priority or not offered at all.
When I was severely affected and bedridden, the (very) occasional old friend would request to come and see me………….then stay for hours, when I realistically only had the energy for a 10-15 minute chat. In the end, I refused to see anyone because these visits always made me ill for days if not weeks afterwards. My needs were ignored, in favour of the wishes of the visitor.
If you want to help a friend or family member I think there are some points to bare in mind:
- Ask what help is needed. Listen and don’t judge or super-impose your own needs or wishes on the other person. If you are helping in someone else’s home, ask them how they want a job done or how they want a meal cooking – don’t do it your way, it’s not your life it’s theirs.
- If you’re visiting someone who is sick, ask beforehand how long the visit should last then LEAVE when the time is up, even if the sick person is enjoying the company. Offer to come back another day and keep the appointment.
- Be realistic about what help you can offer. Is this a one off or more regular? Can you only help at certain times of day, or days of the week? Will there be times you are unavailable, eg school holidays?
- If you offer to help, follow through. The person needing the help is relying on you.
- Be compassionate. Put yourself in the other person’s shoes and ask how you would feel in their position. There is often much guilt about asking for or needing help, with the sick person feeling like they are a burden. Reassure them that is not the case and that you are glad to be able to assist.
I have been, and still am, on both sides of the helping coin. I have/do need help myself (not that I receive it often) but also offer help not only to my parents but to my elderly friends and neighbours particularly during the pandemic. Despite all my offloading here on my blog, my Mum has never once been shown any of my anger, frustration or exhaustion and has only ever been shown patience, kindness and loving care, alongside constant reassurance that she is not a burden. I feel we’ve become hugely selfish as a society and have lost the art of true empathy and compassion.
Helping someone doesn’t have to be some huge committent or time stealing event. It often doesn’t take much to make someone feel loved and cared for. My Mum’s cleaner made them some soup for their lunch last week, but made a point to say that she’d made enough for three and to make sure Jak had some as well. I bawled for an hour after hearing that because she was the first person in all of these months who had shown me some practical care and I was hugely grateful for that.
We are all going to need help at some stage in our lives. Treat others how you hope to be treated when it’s your turn to be vulnerable.