Reality

I'm pretty sure everyone reaches a point where they feel like they have no choice but to be upfront, honest and real with themselves, and to everyone else. Whatever it is, and whoever you are, there must have been a time in life when you've had to stop the "brave face" and just acknowledge and face a situation.

For me, I think that time is now, or is about to be upon me. I haven't written a personal update post for quite a while, and I think this post will be one of those.

As far as my osteomyelitis goes, the surgery I had in June seems to have worked - or at least stopped any infection from spreading. I still have pain, and it still burns, but it radiates less and the joint is more stable. However, it's gone wrong in a way that I never thought nor expected it would.

Because of the debridement, there was less bone remaining on the right side of the bone than the left side. And because of infection, my wires had to be removed earlier than the time that bone fusion took place (and they were removed sans prior X-ray). Post-wire-removal, the distal fragment has moved, towards the right side, and subsequently fused, leaving the joint at a 30* angle. Now, it needs to be fused again because of the poor result. I won't go much into my surgeon and what exactly happened, but I'm left feeling disappointed and deflated at how things have gone. How many more "last time" surgeries will I have? How many more people will I have to seek out before finding one who can really do this?

I'm hoping that my old surgeons can rescue this, now that the osteomyelitis is at bay. They were unwilling to do the surgery as it wasn't their super-specialty to deal with osteomyelitis. Now, I need a "simple" fusion. It just sucks so much to feel like this. I've dropped my coping mechanisms and am a combination of upset, frustrated and disappointed that I'm in this situation. I'm facing the situation with a real mindset and I can't deny that I feel really rubbish about what's going on, because surgery for me is a big deal because of my bleeding. Not to mention that I'm losing weight again and my GI tract has been giving me real trouble lately.

I hate feeling so down about things, because I'm not that kind of person. I'm sure this is a phase I'll get through, but for now, these are my raw feelings. It's just one of those "why me?" moments, when I feel just a bit more negative than normal.

Fear

For me, and I'm sure for many people with chronic illnesses, fear exists in almost everything that we do, everything we come across. One of the things I've found most difficult to deal with is fear of coping. Not about pain, not about how I feel or what I look like but whether I'll be able to do what I want to do at the end of the day.

I meet lots of old friends, who ask me in passing whether I'll go to university. Most, if not all, are shocked when I say that I've been at uni full time this year, because apparently it seems as if I'm far too ill or far too busy with hospitals to attend.

When I look back, I do wonder how I did it. How I managed to pass with merit, attend all my anatomy sessions, lectures, clinical skill sessions and placements, whilst having at least one hospital "commitment" a week. I'm afraid that I won't be able to pull it off again this year, and that I'll totally buckle under the pressure and everything will fall apart before my eyes.

I also have fear that this is a never-ending journey, a journey I'm taking to an unknown destination and I won't know where I'll end up, or if I'll ever be somewhere I can consider "the end". It's a fear of not knowing, and being afraid of walking through somewhere unfamiliar, towards a place that I won't know about until I get there.

Similarly, it scares me to know that my health and wellbeing is in other people's hands as much as mine. Many people may think otherwise and say that things are in my command and are my responsibility. However, it's hard, when some professionals are overbearing and opinionated, more than I'll ever be able to handle. It's difficult to trust someone to do things right when you're asleep, or when you're medicated so much that you are hardly conscious.

The feeling just before being put to sleep is the hardest to fight and deal with every time. Going through it once makes me never want to face it again, and the more times I have to face it, the more afraid I am. The panic of knowing that there's no turning back, and knowing that there's no more time for questions or reassurances feels horrible. It's commitment like no other; committing to letting someone perform surgery and submitting yourself to whatever might happen while you're asleep. I don't like not knowing who will see me, who will move me and have their hands on me.

Since going into anaphylactic shock twice from platelet transfusions, the prospect of any more transfusions fills me with dread, and indeed with fear. Watching those cells enter my body will never be the same again, and I will never be able to have a transfusion without being paranoid, and without someone with me to make sure everything's alright. For me, bad experiences shape my attitudes as much as positive experiences, if not more.

It is more beneficial than anything else to be reassured by people who can gain your trust. Not necessarily family and friends, but also professionals with that air of calm, who do best at allaying your fears and worry. I've found it to be a fact that fear plays a big part in making illness such a negative experience, and for me, nothing makes it better than sharing it, and letting other people in.

A Fine Line: Prejudice in Chronic Illness

For many people living with chronic illness, medications and medical treatments only account for half the battle we fight, if that. The rest of the struggles we face are from people's misconceptions and misunderstandings, sometimes even from the people who are supposed to care for us.

Fatigue and tiredness play a bigger part in chronic illness than the lay public may first think, and affect us a lot more than anybody could anticipate. In my case, I live a full life, no different from the life I would be living without Ehlers-Danlos, AVM or any of my other conditions. I went to school, had lots of friends and passed my first year of medical school with a merit. Most of the time, my friends are great about my conditions and don't treat me any differently for that. 

The problem I have, however, is with doctors who don't know and don't seem to want to know about anything less common than your common cold. Unbeknown to them, I am fully aware that they judge me for what I say and how I feel, and apparently it's not okay to be anything other than the average patient. It seems grossly unreasonable to think that I am being judged for feeling the way I do, physically, due to my conditions. I'm not sure how many of these said doctors have ever thought about it that way.

I know that sometimes, there are people who perhaps don't make the best of their time and spend it making a fuss or dwelling on the unhappy things. However, it's frustrating and is a shame that doctors take that image in, and apply it to nearly every patient that walks through their clinic door.

These doctors have no idea what damage they can do to people, and are blind to the effects they have on people's confidence (or lack thereof) and wellbeing. They make it difficult for patients to trust doctors as a whole, especially new doctors, and make patients feel judged or paranoid when that's not the way it should be. I'm not denying the existence of mental illness and the likes of hypochondria, but I just wish doctors would consider things more carefully before saying the first thing that comes to their minds.

I was diagnosed with Ehlers-Danlos Syndrome by the most well-known EDS doctor in the country, and have a letter detailing the tests and results that led to the diagnosis. Yet, a lot of my doctors treat it as a provisional diagnosis of a disease that barely exists, by addressing it as the "possibility that [you] may have some sort of collagen disorder". Things like this still happen to me, although slowly, I'm disengaging from those who refuse to believe in me and in EDS. I don't need that kind of attitude, and neither do my other doctors who fully believe in EDS and actually want to help.