Accepting my Life

After seeing my psychiatrist today and speaking about how i am feeling. Several months ago my psychiatrist wanted me to drop my Pristiq from 200ml to 150ml because i was having terrible nightmares which are a side effect of the drug and i am 50mg less and i have noticed an increase with my depression, frustration, lack of patience. While i try to keep as active as i can with this injury, i find my mind travels back 3 yrs ago to the things i use to be able to do without any issue unfortunately now any little task is hard and painful and i am getting frustrated with my surroundings and i look for things to do that i can control as i am unable to control my pain or what i am feeling. He was saying how i need to try and accept that this is now my life and i won’t have what i had before. I wish i appreciated what i had and what i could do. I find it hard to leave the past in the past as i want it so bad and I’m not happy with my current one, i just don’t know how to letgo and make peace. Instead of improving with my health i keep deteriorating. It was bad enough with the pain in my left knee and i am having issues with my right. 

I have seen my surgeon, had the MRI and now i wait until i can see her to get the results. Walking has become harder to do, i have spent 3 yrs limp because of the left knee and now i walk stranger because of the right knee. It feels like a rubber band is snapping in my knee and it’s very painful and causes me to stop in my tracks. I feel like Im in purgatory waiting for an answer to an endless problem. 

I take our Pug out for a walk and struggle with just 500 meters when i use to be able to do 1 to 2 km and then i come home sore and all i can do is to elevate my legs and wait until the pain subsides, i do housework little bit at a time, just vacuum one room and mop uses a lot of energy and then i need to rest again or if i am in such a frustrating mood i will over do and i pay later on with my legs just throbbing and it’s like a live wire is running up and down from my knees to my toes and back up again and i don’t have an off button which i would love to have. I don’t even feel like the medication i am on is helping me. Lyrica is to help with nerve pain i’m on 300mg a day it should make it feel less and Palexia which i’m on 200mg a day is meant to help with chronic pain well it’s not working as the pain is always there no relief, no break, no time out. I struggle with sleeping trying to be comfortable and should i roll over and lay on my knee well then i’m up, Even with taking 2mg of Circadin to help me sleep, it helps me to fall sleep but then im up an hour or so later then again at 3 or so, then sometimes 6am and i wake up any where between 8 and 9.30. If i have a few days like this then by day 3 or 4 my mood is poor, concentration poor, patience really poor, anger med to high and i don’t feel like being around people and i would love to stay in bed and no nothing but i can’t as it’s not good for my health. 

He recommend I should try and eat better more vegetables and fruit and less fried food and take away which i have been trying to do expect for the fruit not a fan. I have stopped drinking Coke Cola which i use to love and enjoy and all i drink is water and i try to drink at least 2 litres a day. The only thing i can’t seem to eat less is chocolate, it’s my comfort food. Its there to make me feel better when i’m feeling like shit. It’s hard to lose weight when the medication i take add weights so it’s an inner battle i am losing. Before the injury i had lost 20kgs and was feeling great and now those 20kgs have return over the 3yrs and don’t seem to want to leave.

So it comes back to the original statement i don’t know how to accept my life as it is now and stop feeling the loss of what my life was like before the injury.

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There is no Win when injured

I’ve been injured now for 3yrs and counting, my life hasn’t improved, my life has been changed forever and not in a positive way.

After WorkCover decided it was time to cut my payments once I reached its 130 week mark after their Independent medical examiner said I had some ability to work my pre injury job at some point starting part time and as long as the environment was suitable. One Doctor had more impact in my claim than my GP who sees me regularly and knows what i struggle with day in and day out. Trying to find a suitable environment is not only stressful it’s trying to find a needle in a haystack.

Payments got terminated and legal claims take time, my only option was to apply for Centrelink which i never wanted to be back on. I was approved for new start and i received a letter informing me any compensation i receive i will have to pay Centrelink back. I don’t get what is wrong with our system one hand gives while another hand takes. How on earth does our government expect people to live and survive? It’s not like any compensation is going take away my injury or change what I have been through these past 3yrs nor is it going to payout enough for my life time. As any injured person should be compensated for the injury, pain and suffering because injured people do suffer.
1st it’s loss of income whether workplace makes you redundant or your injury keeps you from being able to return back to pre-injury duties. Then the insurance stop the weekly payments and have no income.

2nd It’s the loss of the life you once had compared to the life you are currently living, I miss the things i use to be able to do. Today just cleaning the basin and bench in the bathroom took so much energy and caused pain I’m still feeling it 5 hours later, it’s like a live wire running from my toes all the way to my head and i can’t turn it off so it’s unsettling feeling.

3rd it’s the loss of a social life, for me there are a lot of places i can’t go to now because the environment isn’t suitable for my injury and some places are too far now for me to drive. I use to love going for drives and it never bothered me how far it was. After an old boss drove to QLD from Melbourne i wanted to do that trip one day, now I’d need to have heaps of breaks, not be the one driving a lot and it would take twice as long as it would’ve before my injury. I’ve become isolate, alone, scare and don’t forget the anxiety i get when i do go out, none of these bothered me before or impacted me so much.
4th My mental Health is a lot worse than it used to be. I don’t like crowds, i don’t cope if an elevator is full i will wait for the next one but if I’m on one and people push in and it’s cramped i feel claustrophobic where it never bothered me before, i find little things bother me more and i can only concentration at one thing at a time, my memory is bad and sometimes when I’m talking i can forget what I’m saying or i can’t articulate the word i want to use, i know it’s in their but for the life of me it won’t come out. Most of which doesn’t help with the medication I’m on.
So it’s unfair for Centrelink to make injured people to repay money given to us from our compensation because no injured work wants to be in this position in the first place.

 

 

 

Those who think they know better

Today my old boss rang to talk and share his experience with anxiety and depression and how he hates his old business partners for making him experience these debilitating diseases. He has only suffered for a year or so and i know he see’s these as a sign of weakness especially for him. I remember when i was working for him and i would have an anxiety attack and he would tell me to breath and it’s not really real just all in my head and if i was strong of mind i wouldn’t let this affect me so, he always thought he has the answer to solving my depression and anxiety. i didn’t suffer from anxiety until i started working for the company he was running. he was talking about how he wants to get into a good place so the anxiety and depression will be no more. i understand where he is coming from as i would like to be the same for me for some it’s not that easy. I said to him once you hit rock bottom the only way is up on the journey up you can still linger or roller coast from one side the to the other depending on the day and how you may feel.

when he first called me after a year of not speaking as i was made redundant and he left he called and apologised for the way he treated me with regards to my depression and anxiety now he has some understanding on how i was suffering. Now i struggle with day to day living i have good days and bad days. i’m having 3 bad days in a row not being able to sleep, my pain is higher than usual and my mind won’t stop with thoughts.

Listening to him tell me how i need to work harder in my recovery and how i can be the person i was before the injury and if a quadriplegic i think he meant paraplegic can do things and over come their injury’s there should be no stopping me as i still have both my legs and i can move. He doesn’t know or understand what i have been through how much i have tried over and over. I have been through pain management, I’ve changed my pain medications and that has it’s own affect to how much i can do. Some days i feel like i am walking in a cloud where i struggle to remember things people have said or concentrate on tasks.

It’s easy for him to tell me how i should be living but to be in my shoes, to feel the way i do, to feel deflated all the time, to pray my pain would go away and stop affecting other parts of my body. I would give anything to be the person i was 3 yrs ago i miss her but it’s hard to see if i will be her again at lease now i would like to be pain free id love to go to the gym and work out like i use to, id love to be able to eat health and not let my emotions affect the kind of food i have but i’m an emotional eater, which i wish i wasn’t then i wouldn’t have to worry about my weight all the time and i know when i’m eating chocolate or junk food that it’s not helping my situation but at the time even if it’s for a minute it helps. no one will understand what i am going through unless you are going through the same thing.

After a while of listening to him going on about how i should eat health and how he spends all day in a truck for work and doesn’t eat junk food and drinks water or he would be the size of a house and how god is helping him that is great as that is working for him but it’s not going to work for me as much as i could pray to god his not going to give me a new body.

I now see the toxicness the conversation was heading to and i’m stronger now to say good bye as i don’t need to have the negativeness of his words to linger in my mind. i know he thinks he is trying to be helpful but his way of making a person feel good is pointing out what is wrong with them. when he was my boss he once said he likes to break a person down and then build them up, he managed to break me down and lose so much confidence in my self as i was never good at my job or my weight was an issues i always said he could hired a barbie if that helped.

This is my journey, i have no idea where i am going or if i will ever leave this crazy roller coaster i’m on. I need to how to accept this life and try and live instead of just feeling like i am existing.

 

Living with an Injury.

It all began in the spring of 2015, The Company I worked for just moved onto a new premise’s that wasn’t in the best condition and needed a lot of work. My boss new office was now upstairs. After a long day of unpacking boxes and going up and down stairs on numerous occasions I was done for the day leaving at 5pm walking normally down the stairs when I turned the corner and felt this sharp pain through my knee and I knew something was wrong. My co-worker saw me and asked if I was ok, I said “my knee is really sore”. I hobbled to my car which is an SUV and as i lifted my left leg up to get in, i couldn’t the pain brought tears to my eyes, I rang my mum explained what had happened and i had no idea how i was going to get into the car as the pain was unbearable. Mum offered to pick me up but i just didn’t want to leave my new car at work. I finally worked out how to get into the vehicle by straightening out my leg and sliding in. As I drove home still in pain with a million thoughts racing through my head to what the hell have i done? Once i got home i wasn’t able to out of the car without help from my 14yr old son and my mum helping me hop inside. Mum took me to the local GP as my usual GP was closed. After checking my knee and leg she was concerned i had an infection in my knee as it was warm, and swollen. The GP recommend going to the hospital.

So off we go to the Austin emergency where we wait for 4 hrs. and during that time i had rang my boss to inform him of where i was, what had happened and that i would not be in on the Friday. The doctor at the hospital said i had just done some damage to the soft tissue and gave me pain tablets and sent me home. On the Friday i went to my GP who ordered an ultrasound, MRI and X-rays. Finally after a week home from work it turns out i had torn my meniscus in my left knee. Unlike lot of people who tear their meniscus and have 4 to 8 weeks rest i went back to full time work. My doctor said i would most likely need surgery; she gave me a referral to an Orthopaedic surgeon. I rang to make an appointment but like most appointment to see a specialist i had to wait 7 weeks for a time. During the 7 weeks I was still in pain, i was on a walking cane and going to the Physio to help try and repair the meniscus through ultrasound waves to help bring blood supply to the meniscus.

I reflect back now my doctor said I should have some time off work. I wanted to save my sick leave for when I thought I would have surgery as at the time I had my boss informing me if I was away for more than 6 weeks I would be fired, he couldn’t afford to have me at home that long. I wish i took the time off instead of being scared to lose my job as I’ve now realised my health is more important than any job and me being me I didn’t want to let the people I worked with down. It’s not like my employers really believed I had a serious injury. Which was really hurtful as I didn’t take much time off only when I really sick.

After speaking with my GP she highly recommended putting in a claim for WorkCover to protect myself for the future and at first I wasn’t going to but after the way I was being treated from my bosses I knew I had to think of me and my son.

The first orthopaedic surgeon i saw didn’t seem to see much for concern, he said lose weight and exercise and it will repair itself. It’s hard to exercise when it hurts and i couldn’t move. I was going to see a physio who was trying to help me but i just wasn’t getting any better. My Physio recommends getting another referral to see another orthopaedic surgeon and i did just that. In that time i had put a claim in with work cover which made me unpopular at work. Work needed to pay for the work cover excess before anything could be approved which caused a delay until December if i remember correctly. Something’s i will never forget about that day and what happened soon after.

I went and saw Orthopedic Surgeon Dr Anna Manolopoulos in late November. She knew there was something more seriously wrong and i had another MRI and she booked me in for surgery. Monday April the 18th was the day of my arthroscopic surgery. i felt nervous, scared, hopeful, and i just want to get it over with. I wanted to be pain free and back at the gym working out and losing weight.

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I wake up in recovery feeling like i need to sleep more and disorientated Dr Anna finally comes to visit and explains that in 7mths from just having a meniscus tear she found my meniscus was shredded, so instead of 3 key holes i had 5 key holes in my knee. I was on crutches for 8 weeks knee was swollen for months.

While I was still recovering from surgery I had a meeting at work and the Occupational therapist WorkCover assigned me to discuss my back to work plan. In June 2016 I went back to work like my back to work plan was agreed on starting slowing an hour 3 days a week, 2 hours 3 days a week and so forth until i was able to get back to work full time. However my bosses had other plans and at the end of June 2016 i was made redundant. How do you think i felt? Yep pissed off after being with the company for 3yrs and being a loyal employee i was let go and i didn’t know what my future was going to be like. Would i be able to get another job?

In January I had enrolled to do my cert VI in Business Administration to help me with my job so i could be a more efficient worker. After surgery then losing my job and realising my recovery is taking long it was hard to be in the mood to do my course luckily had 18mths to complete it.

In March 2017 I went to a Pain management clinic to find out why i was still in pain and didn’t still have full use of my knee. Why I was feeling so depressed more and my anxiety was higher. I saw a Pain Doctor, Physiotherapist, Psychologist and Psychiatrist. If you’re wondering what the difference is the Psychologist and Psychiatrist is a Psychiatrist can prescribe medication and psychologist can’t. The doctors at the pain management clinic were amazing and so helpful to understand what was wrong why i wasn’t getting better and why i was feeling the way i was. How an injury affects you as a whole not just the area where the original injury happened. It was explained to me that my pain is chronic pain and it’s like a loop. How I understood it my knee feels sore so the nerves near the injury is more sensitive and sending signals through my spinal cord to my brain which perceives the pain at a higher level that what the knee is actually feeling. It was explained to me that my pain is chronic pain and it’s like a loop. How I understood it my knee feels sore so the nerves near the injury is more sensitive and sending signals through my spinal cord to my brain which perceives the pain at a higher level that what the knee is actually feeling.

The below diagram is how I feel on a daily basis. I worry more about how I am going to support my family, if I will get hired when I have numerous restrictions, I do get angry and very frustrated at what I am unable to do and what I really want to do and unfair as it sound I have taken it out on my family. I didn’t ask for this injury or to be in pain all the time and just feeling numb. I know where isn’t any magic wand that will fix this (where is Hermione when you need her :)) or (the time stone Dr strange has, I could really use that). I need to learn how to live with my injury and everything that comes and even though I can’t yet get positive about my future I know it won’t stay like this. That is what I can be positive about.

 

ChronicPain2-1024x1024

 

So here i am it’s been 2yrs since surgery and 2 and half years since i got injured. The above diagram is how i feel every day of my life. No one tells you this can happen at the beginning. I was just hoping surgery was going to fix the problem and even though my knee is structurally good i am however not.

Medications:

One of the worst aspects to having an injury is trying to find the right dose of medication that can help you physically and emotionally. For me it’s been a hit and miss and I have yet to find one that works for me without any issues.

I’ve been on Norspan patch starting at 5mg and going up to 20mg for over a year which contains Burprenorphine. While on it I did have days where I felt some of the side effects below at different stages of usage.

  • mild abdominal problems such as feeling sick (nausea), loss of appetite, constipation or diarrhoea (I would have days where I was just nausea all day and the only thing that help was having junk food or just eating to take the feeling away.)
  • weight loss (that was in the first few months of using and then I gained)
  • dry mouth or changes in taste
  • sweating ( I would find at night I would feel hot and cold)
  • feeling anxious or nervous or having trouble sleeping (this is was really bad for me as I just found it hard to sleep at night and once I did sleep I would sleep all day)
  • fatigue, feeling of tiredness, drowsiness, or lack of energy ( I felt this one a lot made it hard to leave the house)
  • trouble with your balance (found this when I was walking or working out at pain managements gym, I had to do exercises to help my balance and it made me nervous to drive at times depends on how I felt)
  • itching at the patch site or other areas of your body (after nearly a year of using the patch I started to get itchy and found out I had become allergic to it)
  • redness or rash at the patch site ( When this started I had to come off the patch)
  • Swelling, including but not only, of the legs or ankles. ( I thought I had been on my feet to long or it was from the heat)

While the patch did help with my pain and I start getting back to living, going to the gym, I went on a holiday with my son which we hadn’t been since I got injured I felt like I was heading in the right direction until I became allergic to the patch. I did try and come off the patch when I finish pain management (it runs for 12 weeks) as I was itchy a lot more, and the doctor put me on durogesic 12mg and I went through withdrawals from it and I felt like crap for days. I felt like was a junky I had the sweats, shakiness, nausea, unable to sleep, heart palpitations. Then I went downhill in more pain, was hard to get to the gym and I became isolated. I finally was back on norspan then the itchiness got worst and I had a rash and it didn’t matter where I placed the patch.

The Psychiatrist put me on (Desvenlafaxine) Pristiq (Serotonin and norepinephrine are chemicals) 50mg and I went to 200mg and now I’m back to 150mg.  It would help with chronic neuropathic pain as well as my depression/Anxiety. My depression and anxiety are like a rollercoaster I have days where I feel happy and great and days where I feel sad and just yuck. My doctor put me on Lyrica (pregabalin) 25mg to 175mg (LYRICA is believed to work on damaged nerves for specific conditions, reduces “extra” electrical signals sent out by damaged nerves in the body.) I’m now on 125mg, I have noticed that I’m not as sensitive in my knee as I was before. If anyone was to lightly touch my knee it could literally feel the nerve running through my body to my head. I have been others like tramadol (which I had the worst side effects off) One of the medications I did love was Circadin (Melatonin) 2mg it was great to help me fall asleep and stay asleep longer than a few hours. Now that I am on lyrica I have stopped taking circadin because for me using both made me drowsier.

Once I was unable to use norspan any more my gp put me on durogesic (Fentanyl)12mg all the way to 20mg. Side effects I had were the following:

  • Nausea, constipation, diarrhoea, uncomfortable feeling in stomach.
  • confusion, hallucinations, trouble sleeping, agitation, loss of memory, pins and needles, numbness;

It didn’t help with my pain at all, I had an appointment with the doctor from pain management and he decided to have to come off durogesic which was fine with me as it wasn’t helping me. I did have withdrawal from it lucky he gave me a script for endone to help take the edge off until I see him in a couple of weeks to decide what is next.

Another thing about trying different medications i have found is for me i’m always tired. I struggle every day to wake up especially if i have had a really bad night. If i have an appointment early in the morning it’s a huge effort to get up and go and if i do manage to get up and go i find i come home and have a nanna nap (which was something i never did before the injury unless i was really unwell).

I often look back and expected my life to be different, better, fuller. I don’t feel like I’m living any more I’m only exiting, I’m limited to what i can physically do, it has affected me emotionally. I have days where i feel good and then the next i feel like crap and all i want to do is hide in my room in bed and let the day go by.

It’s hard living with an injury especially for those who have never suffered an injury, how much it impacts your life from not working being on work cover, to have to think if i get invited to go anywhere i now think does that place have stairs, is the seats to close together, how far will parking be am i able to walk the distance, how much pain will this simple outing going to cause and it’s not like i will be fine once i get home and rest no! It lingers for several days. Knowing this makes it hard to want to go out and be social or enjoy the activities i used. I use to love going on Ghost tours but how can i go now. To be able to go on a Ghost Tour there is travel usually driving for hours which i can’t do as it hurt sitting in a car for long periods of time, all ghost tours are at night and that causes even more stress and i worry about the ground is it uneven? Is it grass? It is Concrete? It’s at night with just a flash light it’s hard to see your surroundings. Most are in old mansions or asylums with narrow corridors, stairs (again i can’t manage stairs well and it was cause pain going up and down) if the stairs and short even worst. Then it going to be cold and that rips right through my knee in a very sharp pain. Will i enjoy myself that answer is NO! Will i suffer for it later HELL YEAH! So am i going to go simple answer at this time NO.?

I do feel a loss of life for me for the person i was before the injury to the person i am now. I know i can’t change the last 3 yrs. but god i wish i had a genie to grant me the wish to go back in time and not take that job and then i wouldn’t have gotten injured.

I could be somewhere different in my life. I know i just miss her and its weird talking about myself as if there are two people but for me there is. The girl who was going to the gym, losing weight, eating well, (for anyone who knows me that was huge) feeling confident, who (even though afraid of heights) still climbed the Sydney Harbour Bridge

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On top of the Sydney Habour Bridge

with my son and felt so proud of that moment and having my son be proud of his mum was an awesome feeling. It was a big achievement for me. Now the girl i am today feels broken, lost, sad, sore, unsure, anti-social, gain the weight back, suffers chronic pain, heighten depression and anxiety is a hermit and just want to feel safe and my safe place is home where i have more control of my pain and my environment. If i do go out i stay in my local area as i know what i can expect and i’m not far from home.

I am very surprised by how much I have written as I don’t consider myself to be a writer. For one I’m a shocking speller and my grammar is terrible (thank god for office and spell check). But I’ve managed to get my thoughts written down not just for my own benefit as this has been really freeing, I wanted it to be out there if anyone else was to read it and feels the same way. It can be very lonely and as much as family and friends will sympathize with you they still just can’t understand. It’s not until you meet other people who are in the same boat with different injures and we all have the same concerns that you start to feel like I’m finally not alone and that is a very powerful feeling as you start talking about how each other’s life is you soon realise that is me too.

The unknown is a very scary thing and as I come to the end of my 130 weeks on WorkCover it’s even more frightening. What will happen if I haven’t found suitable employment by then it’s not like I could cope with working full time. I have been approved for part time work, as long as I work 6hrs every 2nd day. I have yet to see a job on seek that offers those hours. I need to be able to have regular breaks as I find it hard to sit for long periods (I’ve noticed it has a lot to do with the time of chairs I find I get pins and needles through my legs and numbness) I am unable to stand for long periods, I can’t squat, carry more than 5 kg, walk up and down stairs, depending on how I feel I can sometimes walk 500 meters and then the pain sets in. My OT brought up how would I cope if I got a job on a leveled building and there was a fire, well I can honestly say I would be screwed while everyone else is hurrying down the stairs to safety I would be slowly walking down with a death grip on the handrail praying to god I don’t fall or have someone rushing past knock me down. (Things I didn’t think about before) Then I could get up dead or with another injury. I really don’t have a lot of options.

Where do i go from here. I have no idea, i’m going to try and improve my quality of life one way or another as i really don’t want to continue living this way.

If this has been read i would like to thank you for reading and hopefully it was helpful.

Reference:

http://www.mydr.com.au/medicines/cmis/norspan

https://dynamicbalance.com/chronic-pain-beyond-the-individual/

https://orthoinfo.aaos.org/en/diseases–conditions/meniscus-tears/

https://www.pristiq.com/what-is-pristiq

https://www.lyrica.com/

https://www.nps.org.au/medical-info/medicine-finder/circadin-tablets#what-circadin-is-used-for

https://www.nps.org.au/medical-info/medicine-finder/durogesic-patches