The past 2 weeks have been some of the hardest I have had to face this year. I think in someways it's because I have had to face it on my own too because P can't be here and my sister is so far away and as for "him" well he's in his own lil world it seems bcos even tho he says he's there & cares, when crunch time comes it's silence :(
I have been dealing with pain in my back, hip & left leg for 21 weeks come Friday. This includes 2 trips to 2 different Emergency departments in 2 different cities, many physio appointments since August, a few doctors appointments and several 100 dollars spent on Travel & painkillers and other remedies in the hopes it would ease my pain. Unfortunately none really have eased the pain it's constantly there and when I walk it's worse in my left leg and brings me to tears quite alot.
It's caused me to be in bed somedays all day, to crawl like a toddler bcos I desperately needed the bathroom yet couldn't stand and even had me bawling on the side of the bath because all I wanted was the pain to go away so I could have a decent shower and wash my hair with some dignity.
I understand Chronic pain as I have a friend who has been dealing with chronic pain thru a different injury but it's taught me how it works and that generally people don't understand that you're on chronic excruciating pain because they can't see it. Most people don't understand injuries or illnesses that they can't see. The past 21wks I have been learning to hide how much pain I'm in because people don't understand. It's not till they see or you tell them you can't do certain things do they try understand why.
For me this has been hard because I live with routines I always have and I don't cope without them. Each morning I used to get up, head straight to the shower then i have breakfast and do dishes before I set washing machine off if need be then I'd settle down to study. The first few weeks in july I couldn't do the dishes every day but then I started feeling a little better and managed to do them. I was doing them right up until the day I ended up Wellington ED again :(
This is when the pain began affecting my hip, leg, ankle and foot on my left side. It hurt to stand and I barely could walk. For me this is not ok as I have always been very independent and always on the go since I was 18.
Wellington ED did xrays and asked lots of questions poked and prodded and decided it was still a back sprain and that it was just affecting my left side but would go away with a bit of physio. If it didn't come right in another 4wks see my gp for a referral. So we were sent home with codeine, panadol & ibuprofen Amd made an appointment for 5 days time to see physio. In the mean time a couple of times I ended up crawling to the bathroom etc bcos my left leg couldn't handle me standing on it at all... which upset me quite a lot as they told me it would be fine yet here I am crawling yet I used to go to the gym 5 x a wk....
I started physio and my physiotherapist Gale was great she could see i was struggling to stand & found it awkward to sit at times. She poked and prodded and did acupuncture and gave me exercises to do till I came back the next wk.
Unfortunately the pain was still bad and my walking was on and off as I struggled standing. Physio the nxt wk was the same with no real improvement in fact she said I needed to see my gp and try for an MRI as she wants to see what's going on. Then I was to see another physiotherapist there the following week as they were going to tag team my care to see if it would help. So i saw Kyla who tried different things and was still noticing my walking was slowly getting worse and my pain was becoming more excruciating with different things.
I finally got to see my GP 3wks ago who referred me to Dr Kanji and also changed my pain meds in the hopes that these new meds would dull the pain down considerably... unfortunately it's still constant excruciating pain, somedays they take the edge of a little other days not at all. We made an appointment for Dr Kanji which was supposed to be this past thurs but got bumped up. ..
I attended the first appointment with Dr Kanji and Dr Claire and another Dr. I had no idea what was happening at first. Was put on the bed and poked and prodded and pulled and injected and told they'd be back soon they needed to discuss and have lunch. I lay there frightened and scared because my pain was excruciating and would they be able to figure out why and why I hadn't come right when each visit to ED I was told it would come right on its on and to just keep doing what I always do in my life.
They came back and poked prodded pulled pushed and things some more and discussed among themselves. I heard Dr Kanji say I should already been in hospital if my pains bad... then they disappeared for a bit then came in again and had me lie down awkwardly on the bed with my legs hanging off. This made me feel extremely nauseous even tho it was 1 pm in the afternoon and I hadn't eaten since 8am. I was like that for 5 mins then he came back and got me to stand up which is fine bcos I wasn't moving just standing and he asked how pain was. How do u explain it's sore but bcos I haven't moved leg yet I can't really explain the pain level?
I had to lie down awkwardly again and he was going to contact ppl about getting me an MRI. Now I'll happily admit I am slightly claustrophobic due to things when I was younger so the thought of an MRI freaked me out so much. All I wanted right there and then was him to be there and give me one of those hugs that he used to give me that would seem to make everything better even for just a little bit.
I got the call from radiology in Lower Hutt to say I'd been booked in for an emergency MRI at 8.20 the next morning. Then Dr Kanji came back to see my pain levels again and give me a script for new meds to take at night along with the meds I'm already taking. He said they would help control the pain at night and help me sleep as the tramadol I'm on doesn't help with sleep for me like it does with other people.
He then sent me home with instructions that i was to come back to him after the MRI the next day so I could be told the diagnosis and see where to from there....
I was up at 5am the next morning after a restless crappy sleep to be in the hutt on time for my mri. I was scared and shakey and felt like there was butterflies in my tummy. He made it a lil better by texting and reminding me I'm brave but I didn't feel brave I was so scared. The nurse with me for my mri was lovely and tried to help keep me calm.
It's not an experience I want to endure again. I explained it to him as being squished in a can and not being able to see out and to me i felt like it must be what one would feel like if you were buried alive. I tried to picture my trip to the beach in Auckland with him and how he always reminds me I'm brave and can do anything and that he believed in me and was there. All the while silent tears rolled down my face bcos I had to try stay still. I was so grateful when it was all over even tho I felt disorientated.
I took my time getting back to the city as I felt I needed to just come to terms with the fact I just faced part of my fears. I think some of it was also bcos I dreaded knowing what was going to happen next bcos theres so many different stories on back surgeries back problems etc and how things go wrong that it was all messing with my thoughts and how i was feeling because no-one had actually asked me how i was feeling the past 24hrs in this whirlwind..
I got back to Dr Kanji's office and they showed me my MRI and explained what it meant and how lucky I am to be walking at all. Even tho my walking was excruciating and I had to stop alot and was slow as a snail. Dr Kanji said I would not be allowed to work or study for the next 6-8mnths. That it would be a painful slow recovery but I would recover albeit I'd never quite be the same again I could go back to being almost normal one day. That i was grateful for altho no work or study was something I was trying not to cry about. I had to be strong and just nod my head and not cry.
He stated there would be no surgery but that he could fix it with this slow process of me doing nothing apart from the traction exercise and a few others he wanted me to do. I'm not allowed to sit for long times no dishes and no standing for long periods of time. It was a lot to take in altho i felt relieved bcos he said no surgery as I don't like having surgery as I don't like hospitals too much and I don't want to go thru it alone...
I got to go home with an appointment to be back this past Monday to start treatment plan etc. So i had the weekend off to get my head around things and try get a handle on what was going to happen next.
I got there this past Monday and was asked my pain levels, they changed the night meds again to see if these new ones had less side affects. Claire did acupuncture on me which was slightly different to how kyla my physio was doing it. It felt slightly awkward to me lying there in silence.
Then it was time for the needles to Come out and she manipulated my back a little before it was all over. I had to come back Friday to be assessed again. As I was leaving apparently I looked really dodgey as at times I stopped to lean on the wall which is bcos I'm in that much pain it hurt to move my leg. But if I didn't i can't get home etc. So Claire and Nikki got me to try using crutches to help my walking without so much pain or pressure on my leg...
They help but it makes things harder to do and get around as bcos my walking is deteriorating it's putting a lot of pressure on my ankle when I walk. The crutches help keep me stable when I walk but it's still a lot of effort and it causes my leg to ache behind my knee. It's also hard to get from our mailbox to the front door as our house is on a hill.
I struggle to get to the bus stop which is about 6 houses down the hill on crutches because the ground is uneven so it's rather painful. The good thing is now the bus drivers don't need to be asked to lower the bus as the see crutches and do it straight away where beforehand without crutches they would give me a look when I asked bcos I looked "normal".
I think that's what frustrates me the most is because my injury isn't visible people think it doesn't exist that the pain doesn't exist and I can do everything I used to do. Even if they see me struggling to walk they don't understand that I'm in chronic excruciating pain because the prolapsed disc is pushing/sitting right up against my spinal cord which is affecting my left leg extremely badly. Heck the last few days my foot didn't like the sheet or even my sock touching yet! This is bcos all my nerves in my leg and foot are extremely sensitive due to what's going on in my back. My back is affecting so many things that I never knew it could till now.
On Friday just been I returned for the 2nd review with Dr Kanji who asked how my pain is right then, bcos I was sitting not moving it was a 6-7 from memory which he was pleased about even tho I said that it constantly changes one minute it could be a 3 next 5 mins I'm back to 9 or 10. Lately I'm btwn a 7 to 10. This depends on stress, what ive done and how much sleep and rest i get, altho I'm taking my pain meds as I'm supposed to the pain is always there.
He made some notes, said I still needed to see my gp to get paperwork for uni etc and to keep taking meds. He also said he wouldn't be surprised if I ended back up in ED with numbness or not being able to walk soon and gave me his card with cellph # in case that happens as they are to call him bcos he doesn't want me having surgery or needles anywhere near my back. I'm not sure why he's said no surgery etc but I'm supposed to just do as I'm told.
They did finally give me something to help with the constant nausea but I'm still not really eating bcos of it. I've had a few smoothies and crackers abd fruit but the nausea just makes me want to throw up so I try not to eat much when I do eat. I drink lots of water tho as my meds give me an extremely dry mouth so my drink bottle is my constant companion...
I then saw Nikki the physio there who did some stuff with my legs and back which hurt. I actually felt quite sore when I finally left. I don't see them now till the first week of Dec in the fri.
Im now feeling unsure on how this treatment plan is supposed to help me when we know the cause of My pain therefore shouldn't we eliminate it so I can recover and get back to normal a lot quicker than the 6-8mnths he's saying with this way?
I'm frustrated bcos I'm supposed to be positive all the time yet its hard when you're in excruciating pain all the time. I want to not be on such high levels of pain meds. I want to be showering normally, doing my every day routine and even going to the gym. I miss my life and being able to do things I used to take for granted like hanging out washing, doing dishes, running. It's hard bcos I don't know when I won't need crutches, no one can say when the pain will be gone... everything is a big question mark
When I spoke to ACC this week my caseworker was lovely and understanding. She said they would help anyway they can as they understood that i waited 21wks for them to finally help me. She said she would talk to Kyla my physio and they could possibly send me for a second opinion with a back specialist. Bcos she understood that I'm not coping doing nothing and that I'd rather be recovering faster now we have a diagnosis and know what's causing the pain why not fix it which would eliminate my constant excruciating pain. I admit I hate surgery but if it's going to help then i will go thru with surgery. So i hope I get a referral for the 2nd opinion soon as I'm curious to hear what they think is best!
I just wish people would understand that just because you can't see my injury doesn't mean it doesn't exist. I am in constant excruciating pain, somedays I'm lucky I can stand let alone walk a few steps.. so you should never judge a book by it's cover! Be supportive and try just listen to someone and treat them normally and just be a friend, because that's really what one needs to be understood and know that ppl understand that the constant pain doesn't just disappear even with meds and even tho we look normal there's a hell of a lot of things going on inside our bodies that you can't see and it's hard for us to explain so be patient and just be supportive and show you care if you know someone in a similar situation.
This has taken me most of the last 2 days to write due to the pain but I felt it i needed to write it down so others have a glimpse into what this is like but also so I have a written recollection of it in years to come. My bestfriend and my sister used to always tell me to write because it helps clear ones head.
So thank you for those whose support means I've had the courage to write this and been able to get thru the last 21wks even tho I'm scared and not sure what's going to happen at least I am able to try stay a lil positive thanks to you all...
also a big thank u to my sister & "him" for reminding me i can be brave while facing some of my biggest fears - I am truly grateful you both do that in ur own ways 💜 xx
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