Sometimes you wonder what if ?

Sometimes you wonder what life would be like if…..

Do you ever daydream about “what if” ?

What if things had been different and you weren’t in your current condition. If you had realised sooner what your symptoms where indicating too, began the medication earlier or rested more? For me it’s what if I didn’t have my first operation what would my life be like now. What if I hadn’t fully believed my surgeon when he told me at my 6 month post op appointment I would be able to try for another baby to be 5 years down the track on schedule 8 medications and with permanent nerve damage.

Who would I be?

Would I be working again and pursuing a career in the cosmetic nursing industry. Would I be a mum to 4 kids not the beautiful 3 that I have now? Living in Indonesia  would that have even happened or could we be somewhere else pursuing further dreams and my biggest unknown would I still be married?

Effect

Friends and family hear me talk about my pain, medication and the endless surgeries. I’ve gotten to a point that I actually hate talking about it and answering honestly because to be frank I’m sick of hearing it myself.

Pain is not the only struggle that chronic suffers have to face. When your in pain 24/7 it affects every facet of your life. It’s like a slow domino effect edging in on everything and bowling it over. Important aspects as my kids happiness, social life and intimate relationships and bizarrely my decision making ability or lack thereof!

Pain however has had a positive impact on my life too. I feel now that I really know myself better and that I have a tremendous inner strength and courage. Maybe you are reading this now thinking “positive impact” what the hell is she going  on about how could any of what I am going through now be positive but you will if you allow it. (Whole other blog post). It took me 5 years of surgeries and my husband leaving for me to realise my capacity to overcome adversity. I discover how strong I have been and will continue to be and I know it will happen to you too! Be patience and kind and I know not always easy.

So what are your what if’s? I’d love to know.

Gael x

How chronic pain affects my children

My kids have been so resilient it amazes me. I’m learning through their strength to continue the fight for a pain free life.

We decided as a family that we would be honest with our kids about my medical journey. Obviously we are careful with how it is worded and filter out the gory bits. For us, it was important for them to feel part of the process to be given a voice when it came to big decisions. Recently we are noticing more fighting and tears and the realisation we were living in a highly emotional household was very confronting for me.

The three loves of my life. Zahra, Callum and Ebhan.

For the last 3.5 years though it’s been an intense roller-coaster of chronic, debilitating pain due to almost 15 surgeries and procedures. I went for surgery under the belief I would come out a “new woman,” but I came out a nerve damaged mess.

I have the most amazing, supportive ex- husband, Simon, who is trying to hold our family of five together. He does this all while working full-time and learning a new culture and language. We relocated to Indonesia in 2014 after my first round of operations. He had recently started a  business there and with access to more affordable help in the home, it seemed like a no brainer. Simon has had to take on the role of both mum and dad, at times when I’m either physically or mentally wiped out from the pain. I have missed drop off at school, birthday parties, play-dates and even half of Christmas day this year and last. I take my hat off to him as he certainly has a lot of balls up in the air.

My eldest (10) follows me around with a small hand towel to wipe away my perfuse sweats (thanks, side effects). The middle child (8)  asks me if I’m OK every five minutes in a tearful voice and wakes up every night to come and check on me. My wee 4-year-old peanut runs to find my walking stick if he seen me get up, along with waking up in the night in tears, depressive looks, silent responses and separation anxiety. This is when I knew that not only were my ex husband and I going through the trauma of it all, the kids were feeling it too.

So, I talked to each of them individually and try to answer honestly any of their questions. Over a period of time i began to slowly ease some of their anxiety and emotions began to be released. Individually, they handle it differently.

My 10 year-old has taken some of my MRI scans into school for show-and-tell. It was quite amazing listening to him rehearse his perspective of my pain. If you have a young family ask them about your pain as it may seem straight forward to you but to them its layers and layers of complexity.

My daughter suffers the most, or is more vocal and emotional about my daily pain. I feel her watching me. She actually got stomach pains and began to lose weight over a two-month period. I brought her to the doctors and after examinations and cameras into her tummy, it was all clear. About four nights later she confided in me that she felt they were worry pains related to my issues. Total punch in the face. How could i have not known this was stress? How could i let this happen to one of my babies? Since that night and several deep and meaningful conversations, she’s has had no more cramps or stomach pains.

Pain is crap, chronic pain is crappier, but crappiest of all is that it doesn’t just affect the person suffering it. It affects the loved ones who try to make our world just a bit better. The friends who help to pick up the slack, my parents and sisters who worry endlessly because i chose to live on the other side of the world. It sucks!

Simon, Ebhan, Zahra and Callum, Im so sorry. Sorry that you guys have been affected by my pain. I love you all madly and am so blessed to have you all. Thank you.

How starting a blog is helping me achieve my goals

Positive thoughts will help me achieve positive steps

My Story

I’ve known pain for a large portion of my life! It seems I can’t remember what it feels like to not have pain of some sort. I suffer from chronic pain, endometriosis and polycystic ovaries although the two latter are now thankfully under control. An invisible illness for those of you who don’t know, though im assuming you are reading this because you are on the same journey, is one that others can’t readily see. We don’t outwardly have signs that show our conditions for example mental health disorders, fibromyalgia and chronic pain.

At this stage I’ve had 16 spinal surgeries and procedures all trying to “fix’ or’ alleviate’ my spinal back pain and nerve pain without success. My pain is on most days intense 6-8/10 and that’s on a cocktail of medication!! The last 4 years have been the toughest of my life both physically and mentally

Why start a blog?

Good question, guess I thought I had a lot to say about a lot of things and what’s a better way to share opinions with others than a blog? Really it’s a way for me to download rather than hold it in. the ultimate plan is to share stories with others so we don’t feel like we are alone.

Who am I ?

My name is Gael. I’m from oh this is a hard one! I was born in Toronto, Canada, grew up in a small town called Downpatrick, Northern Ireland, moved to Perth, Australia 16 years ago and in between lived in Bali, Indonesia for 3 years. Phew !! I have 3 amazing children who teach me what true love and being unconditional is everyday. (And tiredness)  I had been married for 10 years but unfortunately the stress of dealing with a loved one with chronic pain everyday has taken it’s toil. I decided that 2018 was my year for change. I finally feel again, bizarre i know but with the 16 plus surgeries my brain became numb, this is blog my catalyst for openness, sharing my story with you!

                           Gael Ward xxx

Partner or patient?

I wasn’t aware that i had put my relationship of 17 years under such stress. It was a very difficult time for everyone in the family yet i didn’t see the shift of moving from loving partner to dependant patient!

Who is that woman looking back at me?

Now my own reflection is strange to me.
Partner or patient

 

I don’t know her though she looks strangely familiar. Standing still, holding her gaze as tears begin to run down her cheeks. She looks so lost, deep sadness in her eyes. Scars mark her body in an eerie way. I look away with total fear at who I see….. how did I get here?

How did my life get so taken away from me I don’t know my own naked reflection?

Right now I hate looking at myself, I am hoping that one day I won’t. A few years ago my life was all I had ever wanted . An amazing husband who I would have had 15 children with I was so in love with him, we had 3 beautiful children together, living in a home we had just finished renovating. My tears now are relentless I cant stop them coming. I loved my life it was my perfection, just one thing was off and that was I suffered back pain.

As a family we made the decision for me to have “straight forward” surgery and from that day I have regretted my choice.

Since then I’ve lost who I am in a world of surgeries, pain and medication. I can’t look after my children on my own. The tiredness comes on so quickly. The roles being somewhat reversed as they follow me around our home incase I fall, cuddling me and telling me its going to be ok when I have a sad day. It kills me inside, gnaws away at me that I can’t be the mummy that they used to have. It actually burns the hurt at how devastated my life has become. this may seem dramatic to some of you but i have become lost in my own self and thats a scary place to be.

My husband is amazing but im not quite sure if he still is my husband anymore. I do not know how he held it together, the kids, his business and me. I can see now the constant demands of attention have worn him down. His sparkle he always had when he looks at me has diminished. Our intimacy was based on whether I’m was having a low pain day but even then I know he feels like he’s making my pain worse.

We recently just had a talk about whether his life would be easier if I wasn’t living with them. It was a hard conversation that I had to have but we had to have it. I need to allow him to have an out! He is the love of my life. We had fun in the 10 years we had before the surgeries a started to get to double figures. The last thing I want is him resenting by becoming a burden. He shouldn’t have to help me put my underwear on he should be trying to take it off!!! He shouldn’t have to worry that his meetings are running overtime because I’m at home with the kids. This was my domain. All i ever wanted was a home and kids and I loved being a full time mum.

Now standing in front of this mirror I’ve lost who I am to the pain.

Scars that mark the outside of the body which reflect the scars on the inside too.
Battle scars

 

Asking for help!

Asking for help is not an easy task for me. I get told all of the time that i should ask more.

I’ve just had my first heated words with my new GP. I totally feckin lost it.

Asking for help is not easy

I’ll bring you up to speed. Last year my Gp of 12 years told me he was retiring. The last 8 years have been very difficult but he was my constant support and help. Dr M would always have time to listen. he would let me talk or on many occasion allowed me to cry when there where no words. There was never a timer in place that if we ran over time would alert us. He was a true legend as far as GP’s go and a wonderful human and i greatly miss his medical knowledge and advice. Now I have been dealt with a replacement who I think I’ve seen her 5 times and today was definitely the last.

I am on a lot of prescription medication. Im on Methadone, Palexia and Lyrica to name a few but there is a valid reason. It is not a state of choice. Today I simply asked for break through pain medication as I had run out. The last box lasted me 4 months!! I had tried to get an appointment to see my specialist but have to wait 3 weeks. My flair up’s happen quite often and when i they do my current medication just doesn’t cover it.

Now I understand that there needs to be caution around certain medication(i’m a nurse or was) but my history of 16 spinal surgeries is pretty evident that there is a need. The scars that mark my body is not self induced art but tell tale signs of the trauma my body has been through.

Her response floored me. I sat there as she proceeded to tell me her opinion on my current medications. How I was too young to be taking such doses. I shouldn’t be trying to get more out of her than i would my Specialist. That I shouldn’t be shopping around for new drugs (which consequently aren’t new drugs). She told me that my make up and  outfit made me look too well, to be in such expressed pain. I was mortified. I could feel tears building but tried to fight them back.  Her look of distain was painful.

Little did she know I had already changed 3 times that morning as i couldn’t get comfortable. How the material of the dress was necessary to my condition, as i suffer severe hot flushes as a lovely side effect. She didn’t know that I have only newly found make so I can hide my insomnia stained eyes. That i had only woken up to get to the appointment as i hadn’t slept the night before. How when you constantly feel sore, lethargic and nauseated that applying mascara makes me feel like i’m looking at someone else and fleetingly pretending I am. She has got me so angry, really, really angry. I can’t listen to this anymore,  i’m not doing anything wrong. Yes i’m addicted to my medication but i’m not an addict. There’s a huge difference.

Even though I am so angry I still say thank you through gritted teeth and walked out. By the time I got to the reception desk I was shaking with anger. Why had that been necessary? Why did she deserve to get her personal view point. So I though f*&k you and headed back to her office and I let rip.

Now most people that know me, know I don’t like confrontation or upsetting people but this doctor had fired something inside of me. I didn’t want to take that back to my family so I told her how she had made me feel. I told her that her opinion had offended me greatly. That her personal opinions had bugger all to do with my medical condition or treatment.  I told her i understood that there where perimeters around controlled medication and that she had me wrong. How all i was doing was asking for help. Then I said a few things i won’t repeat and  left her office shaking even more and crying too but feeling proud i stood up for myself.

No-one has the right to make me feel like she did. I was reaching out and asking for assistance. Its now time to find a new GP!

 

Medication Merry go round & around & around & upside down!!

If you or someone you love is living on medication with a chronic illness or disability… I’m sure they rattle with pills and it sucks!

Medication,chronic pain
Medication merry go round

I’ve been under the vigilant care of a Pain Specialist for several years now. He assesses me regularly (and my pain levels ) and titrates my medication as required or trials me on something new. My medicine cabinet has been extended twice and now I have a 4-drawer cabinet to keep my prescriptions in. Rewind 6 years and I was working out 4 days a week at the local gym and walked whenever I could instead of taking the car. I loved to exercise. My medicine cabinet comprised of a strip of paracetamol and its shelves were filled with nail polish instead.

From the beginning of my chronic pain journey I have tried a multitude of pain medication . Most of the medication I am on are scheduled 8, which means you can only get a set amount of tablets or lozenges at once due to there potency and addiction potential.

When you take medication for pain you very rarely care about the unwanted side effects, in the beginning, I just wanted relief in whatever shape that came and if it meant I couldn’t poop for a week well I was ok with that. I started to supplement my medications with vitamin rich smoothies and herbal laxatives to get some realm of normal in the bowel department

Unfortunately there remains a lot of negative attention regarding pain medication (opiates ) and there misuse .but there are legitimate reasons why people like myself who suffer from chronic pain take them. I don’t get a rush or a high when I take my meds. My body processes it and sends it to the area of my body in pain. When I first got prescribed methadone I had my first anxiety attack. It completely overwhelmed me. There was the fear that my medical journey was taking me down a road of drugs, drugs that addicts take. Little did I know that two days later I would be hugging the doctor who had given me my first glimpse of relief in nearly 2 years.

I am still on methadone along with other medication and its been keeping me so what comfortable since. Like most Chronic pain patients I suffer with sleeping at night but then after 4 days of no sleep ill sleep for 36 hrs straight! Is that too high a price to pay for the days I have with my pain score reduced?

So now I am at a mental cross-road. Do I look for another medication that will help with my pain and sleep? Or do I continue on this path?

My world of Chronic pain – a horrible invisible illness

I’ve had pain for as long as i can remember…………………………………………

It doesn’t feel like i was ever pain-free though i know those days existed. My journey started out with a diagnosis of Spondylotic Spondylothesis- basically slippage of my spine of the natural track. It got worse with every pregnancy and i decided 5 years ago to have a Spinal Fusion in order to secure my spine.

Unfortunately this was the wrong choice. It did secure my spine but during the operation my nerves got damaged. Since then i’ve been in chronic relentless pain.

I’ve been wanting to start a blog about my battle with Chronic pain for a long time now but with over 16 spinal operations my head has been very foggy with drugs and increased pain. So today is the day.

I would love if you want to contribute your thoughts or opinions or your own personal stories. I know i’m not alone and that my daily struggles are others reality too. Let’s try then to get stronger together.

One day at a time.