Category Archives: Chronic Pain

‘To Lose Time’

‘To Lose Time’

To Lose Time

 

What happens when you realise you have suddenly lost a whole month…..or, worse, a term.

You find yourself on the couch, crying, because no matter how desperately you want to get out for a walk. To breathe some air, fresh air, you know that you are unable to reach the end of the street. Your body will just not allow you to move how you want.

At the end of our flat, easy to walk along street lies a bus stop. All I have to do is get out the back door, walk along the road, get on a bus, and I’d have some freedom, some conversation, some socialisation.

But between that, I have three children to cajole and convince out the door. I have a pram that is not unfolded waiting for use, it is packed up in the boot. People would not believe how many times that pram unfolded has led to me being unable to venture outdoors. You see, it’s just too many challenges. And for a woman like me, burdened with chronic pain, you have to calculate the risk benefits. We spend our lives looking at the steps, working out what we need before we go up or down them. We have two annoying steps in our kitchen, and I beg my husband to put a ramp in, because as stupid as this sounds, by the end of the day, I have to step over them in two steps just to avoid the pain. I have to plan what I need on one half of the kitchen, and put off using those steps as long as possible. Then, once I’ve gone up the steps, I’m aware of the pain I’ve now caused myself. It doesn’t happen later, it is immediate. As soon as I gone up those two stupid steps I feel it in my pelvis, and it is all part of the toll that sends me to bed with my heat pack early each night.

To leave the house, I have to dress the kids (pain), bending down to put on shoes (pain), bending over to help with toileting (pain). Packing bag (extra steps to get stuff, pain), strapping into pram (pain), packing spare things under pram (pain, unless I can convince the girls to do it).

Then the actual walking (pain). I can only walk so far before I need to sit down. You won’t see me in pain, you will only see us having a drink of water and a chat. Getting the water bottle out of the bag (pain), bending down to give baby a drink (pain).

Lifting pram onto bus (pain). Putting bags under pram in place for the bus (pram). Sitting down on the bus (pain). Getting up (pain).

So today, my pelvic pain has been complicated with a bladder infection. Only, there is never an infection. My body just goes all crazy and the nerve endings are on fire, sending me to the bathroom every five minutes, minimum. No exaggeration, I wish it was. I get up to use the bathroom, get the kids some food out, pass them the food, then use the bathroom again, then sit. It’s a delightful way to spend the day. All I can tell myself to get through the banality and the urge to scream at my stupid bladder telling me to ‘go’….is that I get a day at home with my kids, to cuddle and enjoy some quality movies with. Only, then I accidentally look on fb, or Instagram, (please, hold the hate, I’m actually a huge fan of both, thanks to the ‘connectedness’ we have with family and friends on the other side of the world) and see the awesome, amazing day out other mums have had with their kids…I would desperately love to take my kiddies somewhere special, or even just a playground with them (we did that Monday…hence the overdoing it, again)…..but, today, as nice as it is has been cuddling inside in the rain, and I know I should be grateful for having three gorgeous kids……I can’t help but feel really disappointed with my failings, and annoyed at how much my body imprisons me. It also imprisons my kids because not only are they stuck inside staring out at the world, but they are excluded from group activities that I’m just not up to (thank goodness they aren’t aware yet of how much they miss out on).

Another day…..lost at home with my Endo, and my stupid sore leg (post on leg later). I know, my kids are beautiful, and they are healthy . I need to breathe them in and just be happy with that. I’ll try, hold back the tears, then get back to you.

 

Post – Please don’t feel sorry for me, I know I’m lucky. I do. I just want people to know a) what chronic pain looks like {you don’t see us because we are home when we can’t move, and when you do see us, it’s hidden in our ‘coping’ ways such as sitting down and ‘resting’. I know I’m lucky, it’s not terminal. One day I will walk, and run and be the active sporty girl I used to be. Just not yet…..

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

Taking it slow….with a new baby and pain

Taking it slow….with a new baby and pain

Take it Slow

I haven’t posted for awhile as my stamina was suddenly disabled by the time Christmas Day hit.

Nothing serious happened, it was likely due to the busyness the week before Christmas. I was trying to get everything done, and this hectic activity, combined with an excarbation of my chronic pain issue, led to a trying festive week.

I really struggle with slowing down and often form little lists in my head of must do things before a certain date. Before Christmas. Before the baby is born. Before we go on holidays.

I like to be organised. I like to get appointments done before special events. I like to maintain some type of order in my house and in my life, but you can never be truly organised. You can never be all things to all people and have all things sorted at all times. I honestly didn’t think I was taking on too much, I thought I was just doing what needed to be done. But, I’ve had to ask myself – did I really need to do all of those things?

I even filled my week with appointments in an attempt to find some non-medical solutions to my chronic pain. The physical exertion of taking a baby in and out of the house added to my distress, and added to my frustration!

My body woke up so weak on Christmas morning that I nearly had to stay home and miss Christmas lunch. I felt so guilty being so burdensome to my poor husband, home for his holidays. I wasn’t filled with much cheeriness as my tiredness drained it out of me. But my girls filled my days with joy, as they always do.

My favourite Czech writer, and author of the sublime ‘The Unbearable Lightness of Being’Milan Kundera, is quoted as saying:

‘To sit with a dog on a hillside on a glorious afternoon is to be back in Eden, where doing nothing was not boring – it was peace.’

Due to my ill health and my wonderful husband taking over, I spent a few hours each day in bed. So I started resting with my baby. This was pure bliss, and a definite upside to my pain and weakness.

I am very aware that this lesson isn’t filled with the usual lightness and anecdotal style that I’ve been injecting my posts with.  I needed to start back somewhere with something after my unexpected hiatus, but apologise for it’s prosaic nature. I will do better next time.