Tag Archives: chronic pain

Counting Steps

Counting Steps
  • Life with Chronic Pain 

Dealing with chronic pain, on a daily basis, with three small children, is obviously very challenging. I can’t remember having a day without pain. Fortunately, I have adorable kids that make it so much easier. The combination of the pain and kids is all part of a daily game of coping, one that we all experience, for different reasons. My daily challenge is chronic pain, and the only time it really gets me down is when I miss out on something that I was really excited about doing, but I’ll save that for another post.

Today I just want to try and explain to you about the masks I think that we all wear while we try and get on with our day, and my ‘counting steps’ method, that helps me get through mine. Getting the kiddes to and from school without too many hassles (incuding crazy Miss 4 attempts at making us late) and managing my pain throughout it all is hard, but it’s hard for all of us. As my husband likes to say, ‘we all have our own shit to deal with…’, and it’s true. You start talking to anybody, really talk to them – and there is something stressing them out.

My daughter has knee pain, and sometimes she gets really upset that her knee is hurting her again, and keeping her awake late. She will roll around from side to side on the bed crying, saying, ‘it’s not fair…why do I get knee pain?’ I try and explain to her, that we all have something. Mummy has her pain, my sister has her terrible Thyroid condition, Pa has a bad back. Daddy has a bad back. There are children at your school` with nut allergies. I ask her ‘how would you feel if you always had to worry about what you ate? And needed injections if you had the wrong food?’ This strikes a chord with my daughter, as my kiddles are obsessed with peanut butter. In the school holidays, they go crazy, and want peanut butter sandwiches every single day (because they can’t take these to school). We talk about how some people have lost their Mummy or Daddy, or some children get very sick and spend a lot of time in hospital. It’s really hard to talk to a six year old about sick children, because then they start to ask you about death, and kids….and it makes you feel scared and vulnerable about your child, and you don’t want them to be thinking about it themselves. I still haven’t worked this one out, and I’m getting off topic again.

What I try and do is to make her feel grateful that she only has knee pain. It may sound crazy, but I am also grateful for my chronic pain. It may be hideous, and may mean that I spend a lot of my evenings resting on the couch, unable to move, but it’s not fatal. My husband probably isn’t thrilled when he comes home tired to a kitchen as yet unfinished and pots yet unwashed, left because my pain has got so bad that I just can’t do it anymore. There may be mess, but if I’m in pain he is very strict about me not overdoing it. He has repeatedly said he would rather deal with the kitchen mess, or do the washing himself, then have me having to go off in an ambulance for a few nights. Which does happen a few times a year when my pain levels get too far out of control.

On a daily level, I tend to push it to the side and just get on with it. I have a method at home, I call ‘counting steps’, in my head, but it is essentially about picking up things off the floor in the least amount of steps possible. It’s about limiting reaching up and down, which adds to my pain, or walking down the two stairs in our kitchen which can really inflame my condition. So, I’ll bend down to get the dustpan and broom out of the cupboard as I pick up the spoons that Atty dumped out of the drawer, then, staying down low, I’ll sweep up and pick up the few toys that are scattered on the floor. Once I’ve tidied the floor. Then I’ll get the handful of things off the table and walk down the two stairs where I stay kneeling and crawling around putting everything away on that level, counting steps ahead, ‘two more blocks, two more steps, then I’ done.’ I have to plan things out but once I have, I will get some books and get my heat packs and get ready to collapse. Maybe rewarding myself with a cuppa and I might leave some snacks out for the kids if I’ve had them prepared earlier (otherwise that’s too much work in one block for me), leaving some cut up carrots or grapes out so they can self serve when they are hungry. Once I’ve done the kitchen, that’s all I can manage for awhile and the kids and I snuggle and read books. I really struggle to get back up once I’ve finally laid down, so I need to have enough set up for them to be happy to sit with me for awhile. They might ask for something I haven’t got out, a sandwich, cut up apple, but they have to wait. When MJ, our eldest is home she is amazing, and will make the sandwiches for the little ones, and understands that she has to wait. Miss 4 is not so patient, and will whinge at me, but she still has to wait. The baby never fusses. I just have to watch he doesn’t climb anywhere out of sight by bribing him with more ‘Thomas’ books. So, yes, it’s tough, but, it’s not cancer, and I’m not dying. I feel as though my last two surgeries in the past year have both made a more than 50% improvement each time, which is huge progress to say the proceeding five years (having my babies), left me with my condition so debilitating I could barely walk or get out of bed.

I don’t mean to sound too ‘new agey’ about my pain, but the cause of my main pain is a long history of Endometriosis, which often has more complex issues then what I’ve experienced. Most people with Endo as bad as I’ve had, with over eight laparoscopes each excising more Endomeitriosis that had grown back, have problems with fertility. My husband and I didn’t have that. We were actually fortunate enough to fall pregnant without even trying. The first time was completely unplanned and unexpected, but, sadly, ended in miscarriage. Most of my friends probably don’t know this, and miscarriage still isn’t talked about enough, but I don’t have the answers on that today. Losing our first baby, was also a sad way for us to demonstrate to our families our commitment to each other. Instead of celebrating, we found ourselves tearfully informing our parents over the phone about the urgent surgery I required. We only had one week to enjoy our pregnancy before it was over.

We grieved, and got busy choosing our first apartment together, and I was drowning in coursework from my postgraduate teaching degree I had already recently started. Before we realised it, we were pregnant again, this time with our darling daughter, who is now almost seven. We went on to have two more healthy babies; the third was merely a thought before he became a reality. And after two gorgeous girls, we were thrilled to have our lives graced with a cheeky, beautiful little boy.

My body suffered through the pregnancies, and I know my Mum wishes I’d waited longer between having our three babies, as my body was still in severe pain two years after my second, with me barely able to take a step or get out of bed. Yet, this was the life I was given, and my kids are amazingly gorgeous and fun, and even with all my ‘counting steps’, it’s still a bloody beautiful life.

 

 

Side note – thanks to my Mum and husband for doing everything they could to be there as much as they could through my pain, and for allowing me as much hospital rest I need when I need it. I love you both so much. Thanks, and thanks to my team of mum helpers – you are all amazing! Love xxxxx

‘Making castles in the air….here, there and everywhere!’ Lesson Nine

‘Making castles in the air….here, there and everywhere!’ Lesson Nine

 

Lesson Nine: ‘Patience and Creativity’

Matilda’s new favourite past time is to make castles. To build them here….to build them there…to build them everywhere!

This means finding all the blankets and cushions in sight and fashioning them into some type of cavern. She begins her task by busily dragging every toy from around the house towards the construction site. She fossicks about picking up toys, blanets, cushions, shoes, jewellery. until every crevice and crack of the castle is blocked with anything from Dora figurines, teddies and hair ties as mortar for the space.

I am patient. I watch her pulling toys from her room out to the lounge.

I watch her pulling cushions and blocks from the lounge down the hall to her room.

Once, she even blocked our hall with a construction that was mainly scaffolded from a hat box and a stool…..it was hard to get to the bathroom or bedroom that night as every movement of a tutu or shoe in the way was ‘destroying her castle’!

I watch her and marvel at her creativity and ponder her future career choices, possibly in Architecture. I don’t mind the mess, I enjoy the process…and I sit and admire. Although I know that later when she goes to bed, we will have a big task ahead as we dismantle the structure and unpack the clutter remaining.

I allow her this indulgence as she is continuously confronted with my complicated health problems, which often means we spend a lot of time at home. I worry about the effects of having an ill Mum on such a vivacious child – I don’t want to deflate her happiness.

Most of the time I get by with heat packs and rest, and going to bed early. Although, when I have a flare up of pain or other intrusive symptoms, I cannot just take myself to the closest emergency. My history is so convoluted that I need to wait to see my specialists in a hospital almost an hour away, who will need to formulate a new plan. That is the best, although often painful approach.

A few weekends ago I had a bad episode of chronic pain. I should have gone to hospital, but the thought of waiting eight hours to be seen and ‘wasting’ that time away from my girls, when I can just wait to see my doctors and have a clear plan organized with an admittance planned meant I suffered at home with the pain relief on hand. Patiently.

Sometimes my determination to wait it out, means that I am often not the easiest person to live with and can be a bit short with my hubby, and easily overwhelmed.

Being patient as you watch your house being converted into a castle helps me to be patient in other areas of my life.

Although this past month, I just couldn’t wait it out any longer and I needed to take myself off to emergency. There was a plan outlined for the following friday but I had an acute problem arise over the weekend and by wednesday I was a walking zombie barely managing to speak or sit down.

Having children means also accepting when you can no longer be the Mum or wife you want to be. It sometimes means taking yourself out of the picture to get some rest and recover – rather than drag everyone into your web of pain and tears.

Knowing that my girls are so well looked after by my Mum and my darling hubby when I’m sick helps me to give into that decision much easier, but I feel that I am less a person when I have to admit defeat to pain, and voluntarily take myself away from them. I feel such a useless Mum and wife, but this is who I am as a result of the ravages on my body by having my beautiful children.

Having castles in your house shows you the beautiful potential of empty baskets and boxes as they can bear the weight of your castle. Being stuck indoors doesn’t become boring, but rather a way to redo our play area to make it ‘cosy and rosy’ for ‘bubba and Mama’. I have no idea where Matilda picked up this expression, but she loves using it, and puts on a bit of a Yorkshire accent when she does. I don’t know if the voice is an affectation picked up by my (Yorkshire) grandparents, or our Yorkshire cousins who we infrequently skype and stayed with for a few weeks last year. Then again, it could have emerged from something more meaningless via the television through ‘Peppa Pig or ‘Little Princess’ – adored shows in our house.

I am beginning to think that I am writing less about lessons for my girls but rather lessons from them. Matilda sometimes seems three going on fifteen with the kindness and patience she shows towards us. Then there will suddenly be the tornado of a three year old tantrum. At other times, she is my little baby who cuddles into my arms with her ‘num’ (dummy) and ‘Percy’ (Miffy comforter) and falls asleep against my head. I cradle her and kiss her on my favourite part of her which is that little chubby, delicate, soft bit of skin under her neck….and I breathe her in.

As a girl, I used to stretch out on my trampoline and search the clouds for castles in the sky…now I watch my girls building theirs and feel a love in my soul I never knew possible.

‘It Ain’t Easy Bein’ Green……or Bein’ Me’ Lesson Eight: Accept Yourself

‘It Ain’t Easy Bein’ Green……or Bein’ Me’ Lesson Eight: Accept Yourself

 

Lesson Eight –  ‘It Ain’t Easy Bein’ Green……or Bein’ Me’

Accept Yourself

My life is pulled in two directions – between my chronic pelvic pain and my two beautiful young girls. Often the pain devours all other demands and sends me to the couch, or bed, and sometimes even to hospital. Through my role as a Mother, I am learning to accept myself.

I may distress people with this diatribe.  For those out there suffering with diseases, or being burdened by life in other ways – my heart goes out to you and I apologise if in anyway I am offending you. This post is part of a blog of  lessons for my girls from my experiences and musings, although I do hope to teach others about chronic pain in the process.

I have had eight surgeries over the past fourteen years. I have suffered with endometriosis – a much maligned disease, since I was fifteen when I started passing out at school in pain with my periods. Although it wasn’t formally diagnosed until I was nineteen. I have had one miscarriage, two beautiful babies, one postpartum haemorrhage and four D&Cs.

I have a lot of scar tissue and a lot of nerve pain.

Although I am very lucky, yes lucky is a hard word to use in this sentence, but lucky that I’ve only been affected by pain with my endometriosis, my girls came to me easily (we didn’t have the fertility issues often associated with this disease).

I have to depend on my Mum a lot of the time to takeover with my girls. As some regular readers of my posts will know, I am a fiercely independent woman who has travelled the world by herself and been through a lot of tough experiences.

I do not like depending on people – but my health has forced me to.

Letting yourself depend on an army of friends/helpers opens you up to getting used to them being there, so that when they are not, or when they stop understanding – it hurts more than if they were never around.

This week, I was in and out of hospital twice. For once, it was not connected to my chronic pain. It was due to a painful infection. I am not relieved…or content…or anything. I am just frustrated. And I hate feeling frustrated almost as much as I hate being in pain. This is where I am trying to change, and where my lesson comes in. Firstly, I should be extremely incredibly grateful that my issues are not terminal.

I do have pain. I do have issues. But doesn’t everybody have some kind of shit to deal with?

If I wasn’t the woman the doctors scratched their head at and rolled their eyes over as they scanned over my long history and many medications. I wouldn’t be me.

If I wasn’t the woman who has had to fight for many years for nurses to believe I am truly in excruciating pain when I am not crying or screaming. That is just not me. I sit quietly, in agony. The biggest clue to my pain is my difficulty to stand, or those many days when I don’t leave the house. This is me.

If I wasn’t the woman who has changed specialists every few years as their sympathy and understanding grew thin, I’d be in bed permanently. With patience and re-newed purpose, I would  re-tell my long medical history again. I never gave up or accepted when they said there was nothing more that could be done. That is just not me.

If I wasn’t the woman who has been in three motor vehicle accidents, and had a painfully slow recovery from one in a fancy Croatian Hotel room (thanks to a loan from my parents) with no pain relief and no assistance. I couldn’t get the hospital to admit me – the language barrier was insurmountable. I didn’t complain. That is just not me.

If I wasn’t the woman who has had to continuously cancel on friends, family and events at the last minute…repetitively..losing friendships…for many years. I never sat at home all night crying with disappointment or frustration, (okay…maybe for just a few minutes…but then no longer). That is just not me.

I have been able to fall blessedly pregnant with two beautiful girls. I am writing this blog for you girls to learn from as you get older. I struggled with being me, but because of you two – I came to accept myself.

I have to accept myself because my chronic pain, my endometriosis, my miscarriage, my arthritis – is all part of the woman I am. I have the best life in the world. I am a Mum.

I am turning 32 and I am accepting myself. I am often in pain, but that doesn’t define me. I am a Mum to two amazingly wonderful gems. My girls. My daughters. I am the luckiest woman in the world.

To finish with a literary genuis:

“Never be bullied into silence. Never allow yourself to be made a victim. Accept no one’s definition of your life; define yourself.”
― Robert Frost

I hope my readers have never felt silenced or defined by others.

How do you define yourself today?

Do you truly accept yourself? Or are you struggling with “‘bein’ me

 

Update – I’ve now got a beautiful almost two year old boy, and yes, my body was completely broken by the pregnancy. I’ve gone on to have two more surgeries and now have a Neurostimulator in (but more on that later).