Hey, so as a disclaimer today’s post is a bit on the heavier side.
I mentioned in my last few posts that my depression has been a bit harder to deal with recently and my creativity was taking a hit because of it. I do want to get back into blogging though as it honestly brings me a lot of happiness.
Before I get back into regular posting though (although I might drop to twice a week – actually I’m not going to say that either. No pressure – no guilt) I wanted to do an update of what’s been going on.
I’ve been wanting to write this post for a while now but I’ve been worried about how it may come across. In the end though, this is my blog, I think writing it could help me, and I’m not forcing anyone to read it if they don’t want to.
Okay, so I’ve legitimately no idea how to write this post. I feel like I could very easily go off on a tangent, and whilst it would be relevant I don’t want this post to be a complete stream of consciousness. But then again I am writing this post more as a form of working through my own thoughts and feelings regarding the subject than for whoever may read it. I’m hoping that doing this will leave me feeling cathartic. I guess I’ll start at the beginning, and whilst I will try to keep my thoughts organised I apologise if I fail.
First hospital admission at 2 weeks old when my leg broke.
I don’t keep it a secret that I am physically disabled; I don’t mention it in every post, but if you have read any of my previous blog posts I’m sure you’ll have read it somewhere. I once did a ‘My Life In Pictures’ which explains my disability to a pretty good degree. The general gist of it is I was born with a condition called Congenial Pseudarthrosis, which is reasonably rare to-date, but more so back then in regards to the amount of medical knowledge on it. Not to blow my own trumpet or anything but a fair amount of medical studies regarding Pseudarthrosis back in the 90’s was written about me. – I know, I’m famous.
3rd Birthday in Hospital 1995
Most of my surgeries and treatments as a baby/child were experimental and I was a guinea-pig to figuring out what worked best. Which means that sometimes the Doctors and Surgeons made mistakes (unfortunately through incompetence) that left me in the sticky situation that I am in today. One major example of this is that at the age of two years old they attempted to place a rod down through my Tibia, however it failed and shattered and destroyed my ankle instead. To salvage this they had to put my first Ilizarov frame on my leg to hold the fragmented bones in the correct place. This will become important later.
Ilizarov Frame placed to save ankle 1994
From here I had multiple surgeries for my disability, including but not limited to; leg lengthening, bone grafts and an embolisation for a life threatening aneurysm in my leg. This will also become important later.
And then for a short period of time, from around the age of 16 to 20 I was in relatively good health. I still suffered with pain and I was still limited in the type of activities I could do (as a basic example, I could walk but not for hours on end the way a normal person would be able to do with only minimal tiredness/aching). I was finished with my surgeries and I was the closest I’ve ever been to a normal, healthy person.
Bone Graft 1997
What Is Arthritis?
Pain and inflammation in a joint caused by the thinning out of the cartilage between joints. This makes every movement very difficult and painful as instead of moving fluidly they are rubbing against each other. The thinning of the cartilage causes the tendons and ligaments to have to work harder.
“Severe loss of cartilage can lead to bone rubbing on bone, altering the shape of the joint and forcing the bones out of their normal position.”
Normal Ankle | My Ankle
Healthy ankle X-ray in comparison to my current ankle X-ray
However back in 2012 when I was 20 I began suffering with Osteoarthritis in my ankle. I always knew I was going to suffer from arthritis at a younger age; because of my disability it was inevitable. But I’d always assumed I’d maybe get into my late 30 before I’d start having real issues with it and as a result have to have more surgeries.
Unfortunately I didn’t get that lucky. Within the space of less than a year I was pretty crippled. I was in excruciating pain all the time, I could barely walk. Doctors where desperately prescribing me different types of pain medication in a hopes of finding one that would touch the pain. In the end they had to admit defeat and prescribed me with a pretty high dosage of morphine (which I am still on to-date) which as you may know is highly addictive. The addictiveness of morphine was one of the reasons they didn’t want to be giving a 20-year-old such a high dose. But nothing else was helping even slightly. Even morphine barely touches and minimises the pain but essentially it’s the best of a bad bunch.
From here I saw many professionals; I saw Physiotherapist’s who tried to help strengthen the muscles around the bones. I saw Pain Specialist who tried me on different medication. I saw Psychologist who tried to help me manage my pain mentally (ha! – sorry, I shouldn’t be such a b**** but I’ve never met anyone who actually found this type of pain treatment beneficial). I saw multiple Orthopedic specialists. I even saw someone for a while who used an ultrasound on my ankle as its “mechanical energy has anti‐inflammatory as well as analgesic properties.” However nothing was even remotely helping.
In the end they settled on giving me steroid injections every 4-6 months. Which provides me with a mild degree of pain relief for a short period of time. However, these types of injections are not suitable as an extended treatment plan for pain.
Hydrocortisone (Steroid) Injection
The thing about steroid injections is that they are not 100% reliable. Sometimes they work and other times they do absolutely nothing. And there is only a limited time in which they can be used successfully as eventually your body will stop responding to it, in a sense you become immune to them. So not only do they not work great on me, are not reliable in working, but there will come a time in which I can no longer have them as their effectiveness will fail completely. Because of this I was still meeting with Specialists in search of a longer term treatment plan.
Now anyone familiar with Arthritis will know that when it gets to a certain level you will become eligible for an ankle replacement. I was essentially suitable for this within that first year. However I couldn’t have it because of the above mentioned mess-up when I was two years old. The damage done to my ankle by the rod being placed was so severe that there is no way I could have an artificial ankle joint fixated. My bones are beyond use, I have very little viable tissue and I only have one working artery (remember that Aneurysm I said I had? Yeah, that shot one of my working arteries into smithereens and I only had two working arteries at that time anyways. You’re meant to have 3 by the way, I basically have ½ of a working artery).
Side note: The reason I only have a ½ of a working artery is because like everything else with my right leg, they are very underdeveloped. When I actually had my Embolisation at 15 years old the Surgeons were left scrambling as they realised that not only could they not use the adult sized guidewire and catheter tools on me, which at the age of 15 they normally would have been able to. But that the tools for children were also too big and in fact they had to find infant surgical tools to fit down into my artery. So the one working artery I do have is in very poor, underdeveloped condition.
So the best and most effective treatment was out of the question for me, which in itself was a major bummer. So the next, and only remaining option is an ankle fusion.
Which sounds pretty good right? I don’t have to have a metal joint placed into my body, they’ll just fuse the bones so that they don’t rub against each other. So I was like, “Okay, yeah, sounds good. Do it”. And here is where this post is going to start getting a bit hard for me because this is when I was told that whilst I could get the fusion done I had around an 80% that during the operation it would fail and, because of my shitty arteries, they would end up having to amputate my leg instead.
I think this next part will be easiest for me if I bullet point it:
Disclaimer: I am saying these things because people have said some incredibly insensitive things to me in which these have been my responses.
- Having a limb cut off is not like getting a haircut. If you don’t like it, it won’t grow back.
- Having a limb cut off doesn’t mean you will now be pain-free and your quality of life is tip-top.
- Having a limb cut off is not how you imagine it. You might see these words on a screen and think, “yeah, of course I wouldn’t want to lose my leg but if it had to happen I would be okay with it.” (I have legitimately had people say this to me). You reading this can have no idea what it actually feels like to have the possibility of having your leg taken from you. In the same way that I can have no idea what it’s actually like to lose a limb. Unless YOU are in the position you have no right to comment on it that way.
I don’t mean to come across angry but to have someone comment on you losing a leg with a shrug of the shoulders and a heartless “I’d be okay with that if it was me” is beyond infuriating. Even my Sister, who I love dearly and only said this because she wants the best for me, says “but if you’d be pain-free I don’t see why you wouldn’t do it”.
But it’s not that simple. If I do end up having my leg amputated there is no guarantee that I would be pain-free. You can suffer from severe stump pain, you can suffer from phantom limp syndrome and blisters just to name a few. It’s not uncommon for someone to lose a leg and not be able to have a prosthetic one fitted because of X-Y-Z and then become wheelchair bound. And this is all disregarding the very simple and basic fact that I don’t want to lose my leg. Even if I was pain-free, even if I was fitted with a great prosthetic, even if my quality of life improved.. – it is my leg. I’ve spent 26 years fighting for it. I’ve had over 30 operation on it. I missed out on so many experience and lost many friendships because of it. I don’t want all that to go to waste.
I also feel like a lot of people look at those with amputation as if they have no reason to complain. After all some amputees compete in the Olympics. To that I say, could you complete in the Olympics? Because in the same way that not every healthy person can do that, not everyone with a disability can do that either. Those participating are the anomaly, not the regular day-to-day of what a disabled person should look like.
Now this might not happen. There are actually 5 different possible outcomes from this operation which I am okay with to varied degrees:
- Good outcome: It works and my pain is lessened. Although fusion does cause stress on other joints within the ankle, but I won’t get into all that too!
- Not ideal, but at least I still have my leg: It doesn’t work, however my leg isn’t amputated. It just wasn’t an effective surgery.
- Not ideal, but at least I’m pain-free (kinda) and I could live with this with time: It fails and I lose my leg but I learn to live with a prosthetic leg and my pain is lessened.
- Unacceptable: It fails and I suffer the same amount or more pain from the amputation and all the issues that can arise from that.
- Unacceptable: The operation is a success, however because of my very poor arteries it is unable to heal and in the end they have to bring me back in and amputate my leg.
So basically what I have been doing over the last few months is really working on becoming as okay as I can be with all of these possible outcomes. I’ve definitely taken some good steps forwards as to begin with I out-and-out refused to even discuss the possibility of losing my leg. I’ve known this is a possible outcome for a couple of years now and it has actually taken me this long to even acknowledge that it could happen.
I also have to be okay with this operation going ahead as my quality of life currently is pretty rubbish. I know I share pictures or memories where things are pretty happy-go-lucky, but that’s because I’m not going to post a picture of me crying in pain multiple times a week. I’m not going to show pictures of my swollen ankle which leaves me lying in bed all day, ankle elevated and hot water bottles wrapped around it. I’m not going to tell you about my panic attacks. I’m not going to share how I’m, more often than not, unconscious as my Morphine knocks me out. I’m not going to list all the things I can’t do and all the things I miss out on in my day-to-day life because I’m in too much pain to even leave my bed. I’m not going to constantly talk about the guilt and shame I always feel about who I am as a person.
I choose not to do this mainly because I like the separation between real life me and internet me. Yes we are the same person but internet me is cleaner around the edges. It’s one of the reasons blogging brings me a lot of happiness. Because I choose how my life looks, I choose the parts I share, I choose to regale the positives more than the negatives. Internet me is closer to who I am rather than who my pain, disabilities and depression makes me.
So working towards accepting the different outcomes of this operation isn’t really an option anymore. I blatantly ignored it for a couple of years but now’s the time I need to face it head on. Basically pull on my big girl pants and deal with it.
Overall I feel like I’m dealing with this the same way you do grief:
Denial ✓ Did this for about 2 years, so I’d say I successfully ticked that one off.
Bargaining ✓ I considered trying to bribe the surgeons into ensure this wouldn’t happen.. as if I could pay them into not taking my leg. – so basically bargaining can also be labeled as insanity.
Anger ✓ You can bet your sweet little bum I had (sometimes still have) a lot of this.
Depression ✓ This is where I most currently reside. I’m slowly inclining towards acceptance. Sometimes I feel closer than other times, but it’s a work in progress.
And this is where I currently am. I’ve actually started the process for the surgery now, which is a big step forward for me. It’s a long process mind you; I need to have MRI Scans, I need to meet with Vascular Surgeons, I’ll have conversations with Prosthetists and I’ll even have to see a therapist so they can sign off that I am emotionally and mentally strong enough to undergo the surgery. All in all it may still be a year or longer before it actually happens.
Most of my posts have a round-up at the end and this one just doesn’t. There is no moral of the story or conclusive ending. I’m just still here, still processing and trying to remain as positive as I can about it all.
I feel like I’ve managed pretty well at coming across quite pulled together about what’s going on, and I don’t want people thinking that that has come easy to me. I have cried so hard and so much about this. And I undoubtedly will again.
I have so many fears that keep me up at night, stuff as simple as thinking about the operation – thinking about waking up afterwards and not knowing if my leg is there or not. What if I wake up and immediately feel it’s absent? What if they won’t tell me so I don’t get hysterical post-surgery? How am I suppose to even let them put me under anesthesia knowing that that might be the last time I feel my leg? It’s a whole emotional fuck-up. Those couple of thoughts alone make me have a panic attack. Every single time I say them aloud I begin hysterically crying.
I also want to say that I am fully aware that a lot of people have bigger, harder issues in their lives. I’m not ignorant to the fact that what I’m going through isn’t the worst thing in the world. And a lot of the time I feel guilty about feeling sorry for myself, but then I also know that that’s me being unfair to myself.
When you are emotionally stable it is easier to see how your situation is more desirable than others. It’s easier to see how your grass is actually greener. But when you aren’t feeling strong it can feel like you have the most unfair situation in life. That no one has ever cried as hard as you. That life is out to get solely you.
And yes, the logical part of your brain can still step back and say “no, you’re wrong”, but it’s very hard to feel grateful when you are in the dense mist of emotional, mental or physical pain.
So I know everyone has their own hardships in life and this post isn’t me saying I’m dealing with the worst situation ever, it’s just my thoughts and feelings on what is currently the hardest thing in my life. And I don’t think you should have to feel guilty about feeling sorry for yourself. As long as you can step back and still acknowledge there are many in much worse situations. I think the problem lies with people who are constantly moaning about insignificant things and not acknowledging that all in all, they have pretty cushy lives.
And to end this post on a slightly less depressing note, here is a photo of me which proves I’ve always been a trendsetter. Notice the platform trainer back before they became fashionable again. Granted it’s only on the one shoe.. but I’ve always lived on the wild side apparently.
(This wasn’t actually for fashion by the way lol. It was for the height discrepancy between my legs.)