What Happened?

I think it’s time that I was more specific about my injuries, this way some of you may feel an affinity towards my issues and others for the pure sake of understanding.  I was in a car accident, T-boned by a very heavy and strong Panel Van which was speeding one rainy night.  At impact, several things occurred; the steering wheel dropped, trapping my legs, my body continued to travel in the same direction as the car (sideways), causing my pelvis to split almost in two and my right hip to be snapped from my thigh bone, hitting my pelvis, creating more damage.  Simultaneously, my seat belt, used to front or back end impact, stuck and tightened across my chest in such a way that it broke all of my ribs, which in turn, ruptured my lungs. I cracked my skull which then created brain swelling, as my pelvis was disrupted, so too was my spine.  My coccyx was completely turned 180 degrees.  The impact was so severe that I tore my femoral artery.  Unfortunately I was not able to be removed from the car, so the ambulance crew had to attend to me as the Jaws of Life were being used.  At this point in time, I had died twice; once from the lack of oxygen and then from the blood loss (I eventually lost my entire circulatory system). Once I was able to be freed, I had to be resuscitated again and considering I am typing this, I presume it’s obvious that it was successful.

19554771_10156412943628378_4895305149426048427_n

I know none of this for myself, I have no memory of these things I have described, this is purely from what I was told after the event.  I am not going to discuss my hospital stay, it was long, I had given birth to a Son a few months before the accident and did not see him, I had surgeries, I had counselling to help me accept the kind of life I was now forced to live and then I went home to see my Son again.

 

 

 

 

 

 

 

 

 

 

 

 

 

Advertisements

My Diary to an Inmate

Many counsellors and Psychologists over the years have told me to “write a journal/diary”.  I have always stated that I never wrote one as a teenager, I didn’t feel it would help, and I had tried numerous times to write one, but I felt that some days I had nothing to write and others, I wasn’t sure what to write.  About 18+ months ago, I decided to go onto a site called “WriteAPrisoner”; this was after talking to a very good friend of mine who had a prison penpal herself.  She was telling me how it’s quite a shared experience, where she feels a satisfaction in that she is there for her “friend” and that gives her some solace.  She reminded me of the sense of making a difference that I had when I was teaching my students, and that one thing was what I had missed the most.

It took me a while after the conversation and also many “do I?” and “should I?”s, before I eventually got the courage to go online and pick a penpal; I spent hours going through people who were in prison, I saw many pleading innocence, some who just wanted to “hook up” and others who just wanted someone to talk to.  Each one had a picture of the inmate and a small introductory type “This is who I am”. I ended up choosing to write to one person and I had 4 reasons: 1)  He owned up to his actions that lead him to be in prison and accepted the consequences of those actions [he was there from the age of 15 for felony murder].  He stated his regret and desire to be forgiven. 2)  In his picture he was holding a dog and I am a big dog lover 3) Unlike many of the others I had read, he didn’t want anything but to have a friend with whom he could talk to.  He stated that he wanted someone to converse with, that he was more interested in the conversation and therefore he would welcome emails from people ages 18 – 100. Finally, 4)  He was the same age as my son.

Over the past 18+ months, he has become a wonderful friend and confidante, he does not judge and I would go so far as to say that he is a part of my family.  Our correspondence is as daily as possible, although since my pneumonia/glucose intolerance problems, I have emailed him very little of late.  He has written to me here and there with loving words and wise statements, just to remind me that he knows I am going through some ‘things’ and that he is praying for my recovery; he has even stated that he thinks I am the strongest person he knows, that I am his Wonder Woman LOL.  He has never asked for a single thing, I have offered to get him things, and he has told me over and over again that he needs nothing but our friendship.

Below are excerpts from the past year of emails; having chosen them, I realised that in fact, I have been writing a diary, just not in a book! The sentences I have chosen have been placed from the oldest to newest… I have chosen excerpts from some emails, those of which I feel are the most appropriate to the topic at hand (apart from the last two paragraphs wherein they were so important for me to show you, that I took them both from the one correspondence; my inmate penpal had asked me to make one final attempt at a diary and to send it to him, in order for him to read and [I think] show me that writing a diary was an important thing).

I implore you to take the time to read these entries, I warn you that this is a very long and deep blog; I have opened myself up completely, these are the exact words and feelings I expressed to him at that time.  As you read, you will see the progression in some situations and the regression in others.  Because this is a large blog, I would suggest a big mug of tea/coffee and possibly a few sittings!  I am giving you some of my most deepest thoughts and sincerest feelings.  My one mission in doing this is for you to see your own feelings within my words and simply put, realise that you are not alone.

Power of Words

I think my pain cycle is easy to explain to you.  My base pain is like a migraine that never ends, but over the years I have learnt to dull the messages to the brain from my nerve cells, telling my brain that I am in pain – the brain is a bit like a phone, once it is in use, it is difficult for someone else (another message) to come through; it doesn’t stop the messages of pain, it stops ALL the messages from getting through, ergo I feel less pain that I would normally.  I meditate, do jigsaws, puzzles, crochet, etc. and I do things that require immense concentration. After a period of around 1 – 2 weeks, my brain gets tired of being in concentration mode constantly, so it blows a fuse and yesterday were the fireworks of that fuse being blown. Because I had the “outage” yesterday, today I am in recovery mode, the fuses are well and truly blown but my brain has taken a holiday so my pain is present and I feel it, but not to the degree that it will start to become in the next few days, it will build up to completely unbearable and off we go again! I find that today I feel almost like I am in the aftermath of a Tsunami and walking aimlessly, unaware of what I should do, how I should feel and where I am going – this day of all the days is like the eye of a hurricane, where things seem so silent and so different yet as I know from basic routine of this, at some point I will have to prepare to weather the other half of the hurricane.

“So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” Corinthians 4:16-18

Because of and due to my car accident, certain situations have been quite traumatic (surgeries, infections etc.) and I have used a system where I have compartmentalized everything and neatly stored them in a box that’s so far back in my brain that I couldn’t find it (not that I want to) or deal with what is inside it. I had to do it that way because I had my son, (he was 5 months old when I had the accident) and I was trying to make a life for us and I didn’t have the time nor the money to grieve, get counselling and do all the things you are supposed to.

Okay so the Physiotherapist, as I am sure I have mentioned many a time, has been acclaimed as the “future” of physiotherapy and I went in with little expectation because I didn’t want to feel even worse about my ‘stuff’ as I did before. The first thing he asked me was to explain my ‘situation’ from the beginning; this took a while! But both he and his Partner/Director kept eye contact and at times I made them laugh and at others they commented about how surprised they were at the lack of interest from so-called Professionals (ie. my Pain Specialist and obviously my other Physiotherapists I have had over the years). The main guy said “what do you want from us?” and I was as clear as I could and said “I want to know why I have so much pain and once I know why, maybe I will understand and deal with it better and maybe then, I can try to change/lessen the pain”. They then asked me if I could do certain actions and I said I was unsure but I would give it a go and so I did. They were both very polite and asked if they could touch me whilst I moved – something no other professional has done, I am pretty sure I have told you I have had my Pain Specialist for over 10 years and he’s not once looked at an x-ray or ever put his hands one me. Anyway, within about 30 seconds they both asked me to stop and they looked at each other and said “Wow, okay!” and I was a bit afraid but I wanted answers so was ready for whatever they threw at me. They spoke “medical” speak for a bit and from there it was almost like a dream of incredible wonder and success after success, followed by some incredible words from them about my character and how they don’t know anyone else who has dealt with my “problem” for as long as I have and the ones they know of, have lasted about 5 years and have seriously and literally gone crazy!. They told me that when I had my car accident 26 years ago, I had so many injuries to my body and head, everything got muddled up and when I walked, I wasn’t walking properly, in fact, I was doing everything the wrong way, using the wrong muscles. They said that I use my bum muscles for practically everything, including just sitting relaxed, but they said that possibly half the bum and back muscles in my body have been permanently tense for the whole 26 years. My bottom and other certain muscles were always tensed that way because of the “wiring” problems from my brain to my body, and how it’s been on overdrive for such a long time. Basically, everyday things people do, like getting up and walking, are things that the brain tells our body to do.  My brain has also learnt to tell the wrong muscles to do the wrong things especially with my back and legs, walking, sitting.  Because I do it unknowingly, they told me that I have to rewire my brain to send the right messages to the right muscles.  cropped-original_vintage-book-secret-diary-20141.jpgThis means that I have to try to tap into something that’s like “riding a bike” and actually change it, which they informed me is not an easy thing to do. They did tell me that I was not “damaged”, I have “damage”, that I should have had a couple of years of intensive physiotherapy (daily) to wire my brain properly after I left the hospital. I did tell them that at that time I had a 1-year-old who I hadn’t seen since he was 5 months old and I was 20, so it was possibly just as much my fault as the Hospital’s, I just wanted to get on with my life as I had responsibilities. They saw me as much more than a “patient” and they told me repeatedly how I was an incredibly strong woman to have survived this long without one answer and without one hope. When I opened up to them about my suicidal ‘moment’, they weren’t surprised at all, in fact one of them said that they were surprised it only happened in the last 2 years. So…. they got me to do my breathing that I do when I meditated and they asked me to lie on the bed and attempt to move my legs and after they’d said I was tensing certain muscles, I could actually feel it, I was doing it and I kept saying “sorry” and one of them told me that some people take 4-5 sessions just to learn how to breathe properly so I was a perfect “patient”. He was so enthralled in my story, he said that he could only imagine what these past 26 years have been like; both of them acknowledged that the pain my problem would have caused is something they could only describe as unbearable… I cried and cried; for the first time I was being acknowledged and believed.  He did point out to me that he cannot remove my pain completely, he is quite positive that he can lessen it some; he may be able to drop my base pain a digit or two!  He admitted that it won’t be easy, but he already believes that I am going to be a great student who truly wants this (and I do!). I may never get back to being able to go to work etc. but to be honest, I went in with no expectations at all, so I truly felt that meeting these men was a miracle, as they not only took the time to listen but they heard what I was saying.  They gave an example of Mr Universe flexing his muscles for 26 years straight and that even Mr. Universe would be in horrendous pain. We were supposed to be there for an hour and we ended up there for 3.5 hours and I was apologetic that I had taken so much of their time up, but as one of them said, “When you have a great student, you get a lot of satisfaction in helping them – you should know what I mean, after all you loved teaching!”… He even remembered that little snippet I gave them and that says a lot to me. I have to see them weekly and I have to try to remember how to sit, stand and get out of bed the correct way, not my way lol. This means that I have to make myself aware, like “Ok I am going to sit down” and then I need to slow breathe and I have to do it the way they have shown me – they said the fact my “actual” pain was so intense at the time of the car accident, my brain protected me by doing things differently to avoid the severe pain. It may mean that while I start this journey, I will end up with more pain, if I stick with it, they can give me lots of techniques on how to deal with my pain – as they are quite aware that I am doing everything else possible.

I woke up this morning and I felt like a robot that hadn’t seen a good lube job for a year. I was STIFF and I looked like someone who got off a horse after a ride across the country, oh my word. Poor Hubby had to help me get out of bed by moving each of my legs bit by bit and I was like “ugh” and he said “What’s with the noises?” (as I don’t usually make any noise when my pain is severe) and I said “I know, but this is more a moan at how long it’s taking me to just get out of bed!” I am so used to pain that is sharp and pain that burns and pain that aches but this stiffness isn’t nice when you actually go to move, you may now refer to me as “Tortoise”.

Went to Physio again today and went through some techniques I can use so that I can start showering again.  I have to lean against the wall and put all my weight on my legs – sounds silly but without this sort of help, I am unable to do a lot of things by myself; with the shower I have to sit down and I don’t feel like I am getting certain things very clean and then Hubby has to help me. It sounds simple enough, but I have to make sure that my back is straight against the wall and my bottom is not on the wall and that I don’t have an “arch” in my back at all. It messes with my head a lot and it tires me.  JP (that’s what he wants me to call him) tells me that it’s going to take a long time and that it’s hard work, but he thinks my biggest problem is me! He says that I am my worst critic and that I want to get things right so much that I disappoint myself because I can’t get it right all the time; he’s not wrong, I hate it! I used to be a perfectionist and my house was spotlessly clean and I wouldn’t have a thing out-of-place, even when I was on crutches with a baby, I made sure of it.

So Hubby’s still leaving me in bed.  I know he thinks he’s doing the right thing; I need sleep, I’m tired with the pain and so he leaves me there…and I had to have a chat with him last night and more or less tell him not to do it anymore as it depresses me that I can’t even have the routine of having a day awake; I’m awake some of the night-time and then asleep all day, I am in the midst of trying to work out when I should take my medications as I have tried to stop taking them in case they’re the things making me sleep so much and then I walked into the dog’s back leg the other day with my really bad leg (my right one) and I could just feel my ligament snap in my groin.  So I just get to a point where I think “ya know what I think things are looking up” and then “POW!” something happens and I can almost hear fate or God or whoever say “ya think wrong missy”.

Because the car was going so fast when it hit me, and it hit my door where I was sitting, the car door actually moulded around my leg; at the same time, the steering wheel dropped and pinned my legs down.  So my body, as you would imagine, went in the same direction as the car hitting me, it went sideways. My pelvis split in half, my spine twisted and took half my pelvis in the same direction and destroyed my coccyx. The impact was so severe that the seatbelt malfunctioned and stuck!  The seatbelt had no other option than to not ease up, so it squashed my chest and crushed my ribs which in turn, pierced my lungs multiple times. I also ended up hitting the other side of the car  with my head and fractured my skull. I died a few times and in some ways I know I should be grateful I am just here and alive, and for some years after I had spent so long in hospital, I was like a hippie on speed! I got up every morning thanking God I was alive and doing everything and anything.  As all this happened in say 1 second, because the guy never saw me and hadn’t even put his breaks on and he was driving a solid made car (something similar to a 60s/70s car in America) and I was in a more modern car which wasn’t so strong, the impact was a biggun. Anyway, I have been reminded by JP that I need to realise that I am now 26 almost 27 years further on in my life, and all that impact, the problems, the many surgeries etc. are way beyond my “brain rewiring” problems, he has once again assured me that they can help my pain but has felt the need to remind me that it will only be a small drop in the ocean.

I HAVE TO HAVE ROUTINE! No-one made me be this way, I like it that way – ironic really because at the same time, I allow myself to be spontaneous also, I would just make up for it in some way the day after.  I would do the cloth nappies as soon as I woke and then the last thing at night, routines at that point were good because I had my son who was 5 or 6 and I was on crutches and couldn’t put any weight on my right leg for 2 years, so I don’t think I would have coped without a routine – I guess in a way, now that my pain is neverending and so chronic, that it makes me fragile mentally.  I am unable to cope so I cannot make my routines or even attempt to stick to them. cropped-imagesu7eaj7gi.jpgI don’t know… I think I am still doing a bit of over analysing again! Mind you, I do look back and I have to remind myself that I would do this for weeks on end before and I didn’t even recognise what I was doing. It’s a small step, but at least now I can quickly and easily recognise when my mental health starts to decline.

I acknowledge that me doing stuff in the kitchen is progress, because the preparation and cooking needs me to be standing there for more than a few minutes, my back pain is like a hot rod being rammed through my entire pelvis from left to right; it isn’t fun… I tried to do some of the “techniques” that JP has given me, so I loosened my bum cheeks (still doing that) and then bent my knees a little and tried to relax all other muscles apart from my legs… it does help for a few minutes but then it has no effect so I think I need to try to cook intermittently rather than trying to do it every day.

Because I choose to not take my pain medication on a regular basis, and this time it has been quite a while since taking them, I have ensured that I will be capable of relieving my pain by 25% AND it may break the never-ending stress on me mentally as well. Not sure at this point, it’s been an hour and I am starting to feel a little more ‘comfortable’ and my pain hasn’t done a dramatic drop or anything, but it is definitely noticeable!

My Saturday night plan of steak dinner and catch-up on shows went skew whiff almost immediately! I had not slept very well with my pain and I didn’t want to take my Oxycodone then, because I hadn’t taken them in so long, I wasn’t sure if they would make me sleepy or if they would make me a little non compos mentis, so Friday night/Saturday morning was spent trying to appropriately deal with my pain – basically I didn’t sleep and in the end I got to a point where my pain was so severe (my mental tiredness meant that I wasn’t dealing with my pain as well as I may normally have done) that I couldn’t even concentrate on doing anything like crochet, reading, computer games etc. I was sleepless and finding it harder and harder by the minute to deal with, which ended up in me getting so  down with it all that I became a bit zombie like. I didn’t want to move at all and when I did it was in a step by step movement which was overflowing with pain and I didn’t know what to do… my brain on the other hand was going into hyper speeds, thinking about life and questioning why I am even bothering to live at all (Sunday evening was unfortunately a moment of weakness where I considered my diazepam and the option of sleeping and never waking up).

I have been sleeping non-stop for the past 2 days again, not sure what is going on with me at all but I am trying to ride the storm and am back to a normal routine today; just not sure how long it will last! I am hoping a lot longer than the last one, I think I was only ‘normal’ for a day or two. My eating is all over the place and I am swelling up like that little girl on Willy Wonka.  OMG what was her name?  Veronica?  Violet?  It was a “V” name, I’m pretty sure.

I have been sleeping too much again, I think it’s when I take the diazepam for my muscle spasms and cramps, it seems like I tend to sleep for ages aaaaages and aaaaaaaaaaaages within the next 24 hours. Will have to stop taking them; Hubby’s one and only day off today and I managed to sleep through last night and all of today so I missed him!

I have to speak to someone soon because I am concerned about things I’ve been thinking about and some occasions where I’ve felt so helpless and hopeless again. I don’t like feeling that way. I should really be doing therapy with a specialised Psychologist once or twice a week, but my Psychologist changed jobs and I have a massive trust issue with people, I am not about to talk about my problems with someone I don’t know… so after I took the leap of faith with this Psychologist and then he ups and leaves on me just as he decides on a good therapy and tells me that he will support me all the way!  I couldn’t believe it, literally the session where I was going to start to get help and he says “Oh by the way I am moving to another facility so someone else will come in and help you”.  Ummm no, not good enough, I just thought “F you!” and I refused to go back unless they gave me a Psychiatrist to help me, which of course they said they wouldn’t, AND I was “reprimanded” because I had missed 3 out of the 8 sessions (have these people gone mad!?  I have chronic pain and can’t move some days, I can’t help it!).  The system is so disorganised that they didn’t bother following up on me or anything, they didn’t even suggest I saw someone else, I think they were more like “Oh well, one less person to worry about and use resources on”.  Oh 2 years on and am still waiting to see a Psychiatrist at stupid bloody Fiona Stanley Hospital; I still can’t believe they got rid of Royal Perth Rehab because we had Fiona Stanley now… they don’t even compare!  One is for long-term patients and the other one is for individual surgeries, and from people’s experiences so far, they’re disorganised AND it doesn’t look like they were too concerned about the quality of the work when building the ruddy thing!  So mad!

I have to do something because I have this habit that when my pain becomes unbearable and then I get a toothache or an ingrown toenail, I will sit there with pliers and pull the tooth out or ask hubby to pull out my ingrown toenail – weird I know, but another pain is sometimes so nice to feel! I am surprised I am not a cutter to be honest, but I haven’t had those thoughts.

I just have to keep telling myself that I need to listen to my body but I also need to make sure that if I do fall asleep early or I can’t sleep for a couple of days, that I don’t get depressed about how I am not living a ‘normal’ life and can’t seem to exist at all. I need to just go with the flow, which although isn’t a cure-all for me, has made my getting back to a somewhat normal life a lot quicker, with a faster turnaround. My problem at the moment is that it feels that just as I start to get back to something of a normal routine, my pain starts to arc itself and exponentially get worse and worse and I just don’t have the correct resources (pain relief, specialists… especially now Royal Perth Rehab is gone!) for getting the best help at these times.

“Nothing you become will disappoint me; I have no preconception that I’d like to see you be or do. I have no desire to foresee you, only to discover you. You can’t disappoint me” – Mary Haskell

“Finish each day and be done with it. You have done what you could. Some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is a new day. You shall begin it serenely and with too high a spirit to be encumbered with your old nonsense.” – Ralph Waldo Emerson

I might be worse, my brain is mush… I wonder if I am Schizophrenic? I wonder if I am sane? Am I normal? What is normal? If so many people struggle with mental health, then surely having mental health problems means I am normal? Ponder that my BFF *doing love heart with my two hands* I did it by the way… right at the monitor… did the heart thing.

“If everyone was similar how boring life would be. The things that make me different are the things that make me ME.” – A.A. Milne, Piglet

*****************************************************************************************************

This is the start of 6 months of Pneumonia, followed by the discovery that I have been glucose intolerant for quite some time; so looking back, I can see why my general health and well-being was low from hereon in until only a few weeks ago, when my diagnosis came through and the Dr put me on more antibiotics and steroids.

*****************************************************************************************************

82ca90af09dad1fee1571133c1866d1e

I cannot deal with my self-esteem issues, I can’t continue with my pain as it is and I need to accept these things and embrace them, before I can change them.  I am in the midst of endless coughing (especially at nights) where I think my head may just explode.  I am having multiple dizzy spells, aching all over and obviously have that little problem of not being able to breathe properly. My Dr. said my right lung is collapsed some (no shock there, after the accident nearly every surgery I have had sees me with my right lung taking a break haha)   Anyway, enough of my miserable existence!

I reminded my mum that Hubby has wiped my backside, bathed me, cut my toenails, shaved my legs and done many other things which I felt were too personal to share with her, and that as my mum, she should be happy that he’s still around and still loves me, I don’t know many men who could do all that and would continue to be with someone with such specific needs.

You would think it so simple, I know that I felt ‘better’ when I did those things, ergo I would start doing them again…. NOPE! I remember when one of my earliest Psychiatrists asked me why I got so flustered and upset and I said “I saw a cobweb in the corner of the room and I just cried because I used to be such a clean freak” so she said “Well did you get up and remove it?” and I said “No, I just sat there and felt shit because there was a cobweb in the corner of the room”, and she said “It’s called depression”. So I am thinking that I have hit a really rough patch of a road which is on the path that is my life, I can’t think of anything specific that’s made me feel this way, but that’s my whole problem with this ‘depression’ theory, they say that I have to stop thinking that way and I reply with “Well you tell me how and I will, but the way I think is the way I think, I can’t change that surely?” I mean how do I do that? Do I just keep telling myself to stop thinking that way? It’s like when you have an opinion, how do you change that opinion? Or when you love someone, how do you stop loving them?

I feel like a walking contradiction… I give others the okay to feel how they feel but I am my own biggest critic and silencer. I understand the ‘mind over matter’ sentiment that you mentioned, I truly do, many people have said it to me… for some reason I feel that it insinuates that I can just ‘change’ because I tell my mind to change. I cannot change what’s happened to me though, and I cannot deal with it all at the same time. I don’t know where to begin, it’s like someone hasn’t done their clothes washing for 2 weeks and the laundry is just full of piles of laundry and they stand there and look at it and go “Where the hell do I start?” Well that’s what my head is like and I don’t know where to start. The only solution the Health Services gave me the last time this happened, was a Psychologist who wanted me to talk about my childhood and didn’t really want to know about my car accident, he just wanted to know about how my mummy and daddy treated me… and because they were strict (I was no angel though lol), he presumed that I was never loved for who I was, but for who they wanted me to be and he stayed in that lane and didn’t seem to think  my car accident had anything to do with the way I felt (my mental problems).

It makes me worry that the mentality I had with most of my situations, of “get back up again and carry on” was a stupid one and maybe all the situations have piled on top of each other to create this mountain of ‘laundry’ (I do like the laundry analogy LOL) and I have no idea how to start. I have my excuse ready, I know that at the time of all of the situations I am struggling with (apart from the move from the UK to here) I had my son, so I always had to get up each morning and be ‘Mum’ for him, that’s why I got up again like one of those weeble thingies, you can push it over but it springs back… I had to! He was a baby when I had my accident and has lived through all of these surgeries and problems with me, so I couldn’t let him know there was anything wrong, I had to keep the smile on my face and move on with life for him. I’ll never blame him, I have told you this before, he never asked for any of this shit to happen to me so why would I blame him? I don’t blame him for this all collecting in my head and causing me to prefer my dream state than my living state… I made the choice to carry on and let it all build up, he didn’t.

I am defeated, I have allowed myself to get caught up in my own head and it’s like a cage and I don’t know the combo for the lock. I have felt this way a few times now, I ended up in a Psych ward for a period of time (about a month), so I can predict where my head will probably go from here and I don’t like where it’s going to go, so I am trying to stop it. I am trying to pick up a book and read, trying to get into a TV show and escape, I am trying…. but now this flu has turned into something much more and I physically don’t have the strength to get up and read or the energy and concentration to watch TV shows. 0f818-tumblr_le9vxhfnno1qe0mf4o1_400_large1Even doing this email is hard and it’s becoming obvious that I am very weak right now. I have had to stop and just shut my eyes for a while here and there because it’s just too much. I am doing my breathing and trying really hard to incorporate the things I have learnt but even that is becoming too much and my sinus headaches just overtake everything. The only positive in all this is that my normal pain would probably feel like heaven right now, I just want a day when I have my pain back and I tell myself that if I can have that day back that I won’t complain ever again, that I will push through the pain and not let it get me down. I am making deals with myself and fate/destiny and God to just give me a chance to go back to when it was just my pain. All good and well, but I know that even when it’s just my pain I don’t cope, I haven’t coped before. Someone told me once that we ‘cope’ (to a degree) with everything that is thrown at us, that you think it can’t get any worse and it does but somehow we cope.

Hubby has been with me for a long time now, and he knows the two different “Versions of Me”. The Me that talks and talks and talks… that Me is in a lot of pain and is trying really hard to talk it away, to stop feeling it by filling her head full of thoughts and so talks about random stuff. He also knows the other Me, the Me that goes inwards, the Me that doesn’t speak at all and in Hubby’s words “becomes blank, distant and dark”, it’s like I begin to drown in my own thoughts of despair and I hate that Me especially.

In all honesty I did crash and burn after the days and days of not being able to sleep and then last night (as it is 5.33am here as I type) I fell asleep on the couch around 4.30pm (ish) and Hubby woke me up at 1.15am when he got home so then I couldn’t get back to sleep. I am not so concerned about my routine, or at least the attempts of getting a proper sleeping routine at the moment, I am taking hubby’s and the Doctor’s advice and just getting my sleep when I can, I know that when the Flu/Pneumonia hit, that it was about giving the body time to sleep and heal. I am glad that I am not reacting badly to the failed attempts of a routine at the moment, would be just one more stupid thing that’s on my mind which I don’t need right now.

I’ve had my cry, I’ve felt sorry for myself etc. and now I am just sitting in the ‘angry’ phase, I am angry that I got the Staph infection after my Fibula Bone Graft, angry that I had the car accident, angry that if God exists, why the hell is he doing this to me when I am a kind and loving person who wishes no-one harm no matter what they’ve done. I am angry!

My pain is especially bad today and was teetering on shite yesterday. I had an awful feeling that today was going to be one of my worse days so far and I am not wrong. I have now started to get boils again,  in places only my mother has seen! Hubby is forever a wonderful caregiver, but that’s not what he should have to be, he should be out doing his silly Pokemon game and laughing and smiling; instead of making sure I am fed, have had a drink, have taken my tablets, having a bath etc. It’s to the point now where I am unable to dry myself off properly and so I just sat there today and felt like something I haven’t felt in a long time and I don’t like it, I am forever tearing up, not crying per se, just tears roll down my cheeks… rather deflating to feel it building up.

Woman Writing in Diary in Bed

This will be my final attempt to put into words the many thoughts and feelings I have; this may be a positive thing and it may also be the worst thing I have done. As soon as I think about putting myself “out there”, I immediately begin to feel the insecurity and frailty of complete exposure of who I am and how I got here. I suppose I should start at the beginning, but I am not aware of the beginning, at least if I am talking about my depression. Am I talking about my depression? Am I talking about the impact that certain events have had on my wellbeing and behaviours? Or am I talking about how one event (the car accident) in itself changed who I was to become and left me with an added advantage to win “the best scars” competitions?  Who am I? Why am I? Who do I want to be? I suppose they are the 3 biggest questions I ask myself on a regular basis. I know that parts of me are proud of achievements I have had, but other thoughts always make me feel shame and guilt about my actions or things that I have done in my past. Life and death – the singular most contemplated things that I ponder.It’s not always about me, I think about others too, and start to feel emotional, pride, guilt and all the positive and negative thoughts that seem to rise up for consideration. I don’t think I am selfish, but sitting here writing/typing this, I am feeling self-obsessed and I don’t like it one bit. Why do I think about everything, always? Can something not happen and I just sit there and go “oh cool!” or “oh no!”…? Nope! I have to over analyse the past, the present and the future. For a while I considered I had control issues, possibly brought about by the number of times I have placed myself into situations that I had no control over. It’s one of the most debilitating feelings that I have ever come across, feeling that loss and lack of control, even over your own self. I am a controversy and a conundrum, gift wrapped with hypocrisy and hypersensitivity. I also have the biggest bow, it’s all the colours of the rainbow and it’s even got curly bits surrounding it that scream “I am strong” “I am brave” “I don’t take shit”. Okay, here’s my first question then: If I am going to write this, should I write it word for word from my mind, or should I edit out swear words and things? I mean what if I die and someone gets hold of this and thinks of me differently? There it is, welcome back my friend, I almost forgot you in my description of myself, how dare I! Please let me introduce to you one of my closest friends; insecurity (clothed in paranoia and over-thinking).

I have spent the last 10 years plus contemplating all of the above and I don’t seem to be any closer to a solution, nor do I feel any ‘better’ or healthier, in fact, it could be argued that I am un-healthier because of my struggle to find answers to questions that don’t have a solution. Simply put, life isn’t steadfast, it doesn’t come with a manual and sometimes having to experience in order to learn can come with a lifelong consequence. If I understand this, as I do, why can I not just accept this and move on? It is a little like my car accident, I wasn’t affected by the impact of the loss of my way of life, I wasn’t fazed at all; I just kept on living.  I don’t think it was until I hit 24 maybe 25, that the repercussions of the accident began to take a certain toll on me. I can’t even categorically say that my car accident is “where it all began”, not with certainty.  After all, a lot of things happened to me between the car accident and reaching the ripe old age of 25, possibly too many things. After the car accident revelation being rammed in my face with the consequences of pain and other such problems, I still carried on, I still attempted to live a ‘normal’ life. I don’t know why, but I have just had a wonderful memory of my childhood and my teenage years, gee I was a happy girl, carefree and spontaneous, how ridiculously opposite to my first paragraph are just those two words alone? I haven’t even thought about my life “before” the car accident and my life “after” and actually realised how contrary they are to each other. One thing I know for sure is that there are many more people in dire situations, places and head spaces that make my life look like a Rose Garden with a bench and a pond. I don’t have any illusions that I have experienced the worst of the worst, I wouldn’t dare to. I know of others that have been in horrific situations and they don’t sit around and moan about it, they become stronger and will sometimes say that without the bad experience, they wouldn’t appreciate things as they do today. I want to feel that, I want to feel free of it all. If others (much worse off than me) can do it, then I see myself as someone who must be narcissistic or something, why can’t I just realise that life is precious and that I should be grateful I am here. With my past experiences, I have a few things to compare to and should appreciate my presence today and say I am lucky to be here. I am going to stop here for now, I am getting emotional and I am unsure how to deal with this as I have no idea what is making me cry; maybe it is the plethora of things I have written, maybe it’s just that my inability to be positive where others have overcome fills me with self-disgust.

It can happen to anyone, anytime; no-one is immune.

the_pain_chronicles_the_science_of_pain

Pain is the one thing that we cannot measure in others.  We can measure our own pain, but we could be pain tolerant or not.  When asked to give a 1 – 10 at the hospital, I have sometimes wanted to punch the nurse, but I understand that for my 8/10, someone else may feel it as a 10/10 or a 6/10.  I know that after a cesarean, my son’s girlfriend said to me “Do you know what I’ve been through!?  I was in the worse pain EVER!”.  I could have reminded her of my 15 major surgeries and the years of not being able to walk etc. but what help would that be to her?  She felt the worse pain she’s ever felt, and to HER, it was worse than anything she could ever imagine; that was the day I realised that unbearable pain to one person is exactly that to another – it doesn’t matter that her pain was a walk in the park to me, it is what she felt that mattered [maybe this is where some specialists go wrong?].  I have spent decades now, learning to describe my different pains, they can be really inventive given practice; I once referred to a hip pain as to me being a Turkey at Christmas and someone just took the leg off it.  I am not sure the nurse knew what to do with that description, but that’s how I felt!

The title of this blog speaks for itself, as it does so, you don’t need to know if I have blonde hair, green eyes or I weigh 50kgs or 150kgs; it doesn’t matter to pain and it doesn’t matter to my reasoning behind my decision to start to blog.  My main goal in blogging about this, is the incredible discourse between medical specialists and mental health professionals.  A psychologist cannot understand the way I feel and the anger I have, because in all his education, he didn’t read a text book about how helpless, angry and completely lost people feel when their pain is ongoing and never-ending.  The same as my specialists for my physical health, have no idea what it feels like to wake up and within a split second realise that ‘you are you’ by the surge of pain messages being sent to your brain… “Oh that’s right, this is my life, there’s the pain” and the only thing you want to do is sleep again, at least there and in my dreams I feel no pain.  Along my “blogging” experience, I hope to hear from other people going through similar situations and I want this to become a community where we can say exactly what we want, share our stories and ultimately (and in my opinion) speak to other pain sufferers who ARE the experts and know this situation better than anyone else.  Pain can ostracize you from your family and friends; it doesn’t care that you just want to be normal and it doesn’t care that you have tried every non-conventional treatment, or that you are at the end of your tether.

I think the hardest thing I have been through on my long journey, is the lack of understanding by pain specialists.  It is as if they’ve been told that they need to get all their pain patients drug/pain relief free and set them off into the wilderness.  I cannot tell you the amount of times I have been in mental facilities because I just cannot stand it anymore and I feel that I have no support and at times have been told “you just want the pain relief because you’re addicted to them” [I am sure I will talk about that doozie as I continue].

As a first time blogger, I have no idea what is deemed appropriate in size, so I will leave my first real blog at this point.  It may take me some time to work out the pictures and such, but I am hoping you didn’t come for the pictures.  I will also be asking people to write in about their own journeys and will be doing some interviews with people I know who suffer from many different illnesses which have a pain aspect, how they cope, what they have found helps them and maybe we can also get enough followers to ultimately make a difference; get those Medical and Mental professionals to work together and understand that the correlation between chronic pain and mental health is not a possibility, it’s an absolute.  I am a quotes person, I love quotes!  Here’s my quote for today, hope you like it:

“You are braver than you believe, stronger than you seem, and smarter than you think,” said Christopher Robin to Pooh.

Introductory Blog

Sharing experiences, telling our stories, finding help through understanding.  My blogs will be filled with instances and experiences of my own, interviews with other pain sufferers and much more.  I am 47, have been dealing with the aftermath and effect to my health from a car accident at 19 which changed my life forever.  I have qualifications in Education, Mathematics and Psychology; none of which help my life now that I am where I am with my pain and lack of ability to even control and keep to a routine of getting up and going to bed at the right time.  Some days I do not eat; simply because I cannot move.  Some weeks I have trouble every single day and I feel guilt, shame, fear, hopelessness and helplessness.  I know I am not alone, remember… a problem shared is a problem halved.  cropped-383028_2126129561056_1480418030_31771941_994598341_n.jpgSo here is my opportunity to share my story but to also allow others to share theirs.  My first “true” blog is up and ready for reading.  Please feel free to comment, call me out, follow me or anything you want to do.  I have also left an email address if you do not feel comfortable speaking your story as yourself; I can make it an anonymous post for you.  My hope is that we can all come together under this blog and make a change in the disconnect called the Health System, share ideas and even those laughable moments we have when we’ve been dealing with Medical Staff, family etc.  I was once told by someone very important to me, that it isn’t the size of the steps I make, it’s the direction I am taking… so here’s to a positive step for me; would love to help you achieve yours!