I can’t “do it mine own self” with CFS

bucketkidThis is me as a kid, an independent stubborn little tyke known to utter things like, “I do it mine own self” when confronted with something challenging and not wanting help from my parents. Not much has changed since then, I still want to do everything myself (group projects were an anathema to me!) and I find asking for help rather tricky, but, it’s a work in progress, and something I’ve been trying to work on since my life got upended by chronic fatigue syndrome.

When I first came home from Melbourne I completely lost my independence as not only was I too sick to drive myself anywhere and needed my parents’ help I was too sick to cook, to think about eating, to remember to shower and completely incapable of drying my long wet cold hair after being prompted to shower. So my parents helped me – thank god they helped me – but it wasn’t a big bit of acceptance for me, I was so out of it and fatigued and in pain that I just accepted the forced feeding and overflowing love. I relinquished command well and truly and allowed my Mum to go all mother bear defending her cub when the doctors fobbed me off and she used her medical connections to get me in to the right doctors who ruled out all the scary things and assured me it wasn’t all in my head.

beddogs

In my much-slept-upon bed, complete with two curly coated retrievers – we call this morning dog therapy 🙂

I started to recover slowly and wanted my independence back, I reacted with most probably rather shitty behaviour instead of communicating this to my parents and things were tense (sorry about that parentals). We’re at a good point now that I am well enough to go and stay with friends in Melbourne for a few days or go and stay down at the family beach house when I need space – this was huge for me to gain back a little bit of independence. However, just because I can now occasionally cook for myself and now remember to shower each day doesn’t mean I don’t still need help, and I still need to suck it up and ask for it.

I need to remember what The Beatles said, "Help me if you can I'm feeling down, but I do appreciate you coming round. Help me get my feet back on the ground, oh won't you please, please help me."

I need to remember what The Beatles said, “Help me if you can, I’m feeling down, and I do appreciate you being ’round. Help me get my feet back on the ground, won’t you please, please help me.”

Joining the CFS Health Centre has made me even more aware that I can’t “do it mine own self” as the support from the coaches and the online community helps so much more than the swirling harmful mess in my head. I sometimes think I don’t need to go and see Raeya so I go a month without an appointment and all hell breaks lose in my head and my routine goes out the window. Even getting to the centre involved me asking for help. I remember talking with a friend about how I wanted to do this program but needed my parents to a) pay for it and b) drive me the hour there. I waited for them to enthusiastically offer but they didn’t, there was a reticence to it and I suppose they were worried it was another option that wouldn’t work, and I hadn’t communicated how much I wanted to do this. Talking to my friend she said, why don’t you say this is really important to you and you think it will work, could you please help me. And I did and they helped me. Fancy that, clear communication working?

I was feeling sad and lost the other day after some strange interactions with some friends lately and decided to ask the CFS Health Centre’s brilliantly awesome Facebook group if they found their friendships changing when they got sick and how to cope with this… Wow! Best thing I could have done! All these CFS warriors leapt to their keyboards to assure me I’m not alone; your perspective on life does change when your health is threatened and you de-drama your life, and how it makes you notice the true friends and shed the not-so good ones. The discussion made me so thankful for the truly great friends I do have and for my stellar family. It also got me thinking about how I rarely solve problems on my own – getting stuck in the labyrinthine world that is my head is a scary and unproductive thing to do – and that I really should ask for help a whole lot more.

family

My awesome family (the Mackenzies not the Weasleys)

Seeking help from medical experts is a tricky thing with CFS but I am very glad I’ve found a doctor who gets it and who I can ask for help. Lots of CFS sufferers get fobbed off by doctors who tell them they’re depressed or it’s all in their head, but when you get the right doctor who explains why and how things are happening and how certain drugs can help then it is a huge help. I was very resistant to taking medication as it seemed like a bandaid to me but I finally agreed to, releasing that maybe I couldn’t fix this all on my own, and every little bit of help was going to help me recover.

The same goes for seeing a psychologist. I think to myself, I’m going ok, I don’t really need to see her again, I’m fine. No Susan, you overly analytical girl you do need to go to that appointment, being in your head is what gets you in trouble, get help from someone to get you back in the real world. Also, having your world turned upside down from CFS is freaking hard to deal with; help is needed.

What I do find interesting is that when you ask people directly for help they rarely turn you down; some people welcome the specific task you’re asking them to do as they want to help but don’t know how. Last year I really wanted to go up to snow, even though I wouldn’t be able to ski – skiing is one of my favourite activities and I just wanted to be in the mountains. I approached my big brothers and said, hey I want to go, but I can’t drive all that distance, would you be keen to come with me – I think I also offered to do the cooking 😉 They were very keen, we had a great weekend (I spent my lift ticket money on a massage and several coffees), I enjoyed the change of (dramatic) scenery and the transit and company was sorted – now I just have to get my legs strong enough to snow plough later this year…

snow

I didn’t ski but I did get to wake up to this view when we went to the snow!

Help is also really simple things like friends providing me with a bed upon which to nap when I’m at their house. Whether it’s for a 20-minute power nap or a whole night it is so so good to retreat to a safe space, recharge my batteries and know that no one minds me napping. My friends Sally and Chris now actually refer to their spare room as my room. Help is also sending me a book in the mail or a new tv series on a usb – thanks to the girls who’ve done that.

Entertainment I've received in the mail from friends :)

Entertainment I’ve received in the mail from friends 🙂

It’s when a friend drives an hour round trip out to have a cup of tea, because a cup of tea and a chat is the biggest gift I could receive on days I’m too tired to drive. It’s calling to say hey and treating me as the same person I always have been, just one who doesn’t party any more and only wants to spend time with true friends and isn’t interested in the “busy life” and all the drama that ensues. It’s asking me around for a cup of tea to play with your well behaved one-year-old – instant endorphin fix – or coming over to bake cakes with me. It’s the simple smile that true friends have on their faces when we catch up after a while apart, seeing that they’re just as happy to see me as I am to see them, chronic fatigue and all, that I’m still the same person.

bakingsal

So, while I am doing my best to ask for help and not soldier on on my own, that same determination that had me squirming out of my dad’s grip to run across the scary bridge “mine own self” as a five-year-old gets me up each morning, makes me do my exercises each day, insists on morning and afternoon rest, eating properly and on preparation for going out. Because if I do everything right then I don’t even need to ask for help, I can go to my friend’s house for dinner and appear fine and feel fine and just not enjoy the drive home, because the same stubborn five-year-old girl is inside telling me to keep my shit together, I’ll get there, but probably faster if I accept help along the way.

meclimbing

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