To The Man On The Train

An open letter. 

This time last week I was gearing myself up for a long (& inevitably painful) journey. It'd been months since I'd been up north to see my mum & dad; I missed them so much. Travelling with this condition is a big deal and it severely aggravates my pain, so making the trek from Birmingham to Durham is always a lot for me to even think about. Man, sometimes just going to water my plants in the garden is all too much. Unfortunately, going anywhere is made yet more difficult when the general public perceive me as being 'normal'. 

What you did the day I met you though - I do not ever want anyone else to experience.

After recently finding out that I require multiple, major surgeries on my hips, I'd had a long, sleepless week. Desperation had set in & the urge to visit my parents was overwhelming. I was trying my best to stay strong, to act as if this whole situation wasn't terrifying me as much as it really was, but at a time like this, all I wanted was that warm, loving embrace & to be told that everything was going to be alright. 

Consequently, last Tuesday I decided to pack my bag, put on an extra thick layer of ibuprofen gel, wrapped myself up with my back & knee supports and set off on my way. That walk to the station was almost too much itself. The extra weight of my backpack, the sharp burning sensation in my lower back & hip, and the added nuisance of clicking and cracking with every step, was almost enough for me to turn around and head home after the first 100m. I didn't. As much as I understood how awful the next few hours were going to be, I needed to see my parents. I just wish you hadn't been there to turn this testing journey into a nightmare.

I made it to town on one train and just before I boarded the 4.30 train from Birmingham for a 3.15hr journey north, I spoke to the conductor. I had walked the length of the train & noticed people standing in each carriage (other than first class), due to it being so busy. As pained as I am with sitting, standing in the same spot for me is also impossible. I explained my problems to the conductor clarifying that I needed a double seat to be able to move around a lot, because of chronic pain. Her only option was for me to pay to sit in first class (even though the guy who sold me my tickets assured me I'd get the help I needed from the conductor - & I'm presuming he meant for free!) 

After already spending £70 on my ticket, the idea of paying anymore was really off-putting and not really possible for me. "It's not my fault I'm like this," I thought to myself as she was midway through her checking the price of the upgrade, "Why should I have to pay extra to be able to sit in semi-comfort for a journey I've already paid too much for?" Before she'd finished, I told her I'd leave it and would just sit on the floor until a double seat became available. She told me that the next stop, Derby, usually empties out, so I was hopeful I wouldn't be down there for too long. Looking back now, I really wish I had paid, if it meant I was able to avoid your outraged, diminishing presence.  

I set myself up on the filthy carpet, exhausted and in agony just from getting to this spot.  I tucked an old pillow that I’d brought along behind my back and stocked up on painkillers. Derby came & went, with little change in busyness. Separate single seats were here & there, but with my condition I need the space and to able to switch position in an instant - I can't stretch my legs across a stranger, or sit cross- legged with my knees prodding into someone. So I stayed on the floor; moving & stretching when necessary. Aware that every time I touched the floor to support myself and then scratched my face, I was spreading a delightful array of germs all over myself… Lovely.

Sheffield was up next. To my relief, this seemed to be a popular destination for many & I could see the seats beginning to empty out a bit. I was so excited when I saw an empty double seat right on the other side of the door! I picked up my belongings and got the space that I needed. The padded cushioning of the seat was such a welcoming change for my sore joints. I even began to feel positive and at ease about the rest of the journey (probably the codeine kicking in, ha), but not for long... 

You boarded the train in Sheffield. A mere 20-30 seconds for me in that spot and you immediately stopped by me on your way onto the train. Which is okay, I guess, just very unlucky for me. There were plenty of other empty seats right by us & you chose the one right next to me! With three bags, you asked me to move my stuff so you could sit down. I calmly explained, stupidly thinking you would easily understand, that I have a disability that prevents me from sitting properly so I needed the extra space, that I'd just got to these seats after spending over an hour on the floor, and that there were lots of other empty seats up ahead. 

Little did you care, bellowing down to me shamelessly, in a tone I can't forget, "You can not dictate where I sit!" 

Those few words have rung with me quite a lot since. Questioning & analysing just how I would have to look, in order for me to actually be able to dictate where you sat. 

How about if I had a cane or crutches by my side, would I have been able to dictate where you sat then? What if I was heavily pregnant, would that have made a difference? If I was double my age, would you have put up the front you did, or would you have quietly moved on? 

It is one thing living with a disability that happens to be invisible, but it's a whole different story when you have to open up to a stranger about it and they either couldn't give a shit, or don't believe you. Just because their perception of a disabled person is far from what is in front of them.

Attempting to hide my hurt by this comment, I tried to explain to you that I have something called Ehlers- Danlos Syndrome, which affects my joints; 3 slipped discs in my back and that I was awaiting surgery for my hips. I told you that if you were to sit down, I would need to move back to the floor because of the restricted space. Your twisted response? "Go and sit on the floor then."

What a joker. At this point, I'd had enough. I picked up my stuff and wanted to get out of the situation as quickly as possible. Flight mode had rapidly kicked in and I needed to get out of that carriage, quick time. With a tear in my eye, angry & confused as to how someone can treat a stranger in this way, I made my way through 3 sliding doors to get away from you.

Just when I thought I'd escaped your toxic ignorance, you decided to get up out of your newly found seat, open back up the door of your carriage and shout down at me (now quite a distance away) in an incredibly belittling manner, "If you had just one slipped disc, you wouldn't be able to walk!"

The stray tear turned into a flood and I struggled to catch my breath. I have been living with degenerative disc disease for almost 8 years now and the amount of pain I have suffered because of it is indescribable. Your obliviousness and harsh attitude was met with huge bewilderment. Why would anyone lie about having the problems I have? Did you really believe I was making it up, just so I could keep the seat? Why did you feel the need to end our already awful encounter (in which you ended up better off), with such a bitterly cruel and disloyal taunt?

Your hostility that afternoon was unfathomable and I sincerely hope that you never treat anybody in that way again. Living with such a crippling condition is difficult enough, without judgmental strangers like you passing purely ignorant and hurtful comments in our direction. I think I can speak for others in my position when I say that all we want is for our invisible disabilities and pain to be accepted & acknowledged, that is all. As an alternative, you decided to use what I told you against me, purely because I have the ability to walk.

Therefore, the next time you see someone who ‘doesn’t look sick’, drive into a disabled parking space and hop out like nothing is wrong, hold back the judgement. This could be a day out for them they haven’t had for months.

The next time someone who ‘looks strong’, asks you for help with their bags, do not just dismiss them because you can’t see past the ideology of someone in need. Your help could really mean the world to an individual.

And the next time somebody tells you that they have a disability, but you can not see it, do not belittle them. Believe them and accept it. Do unto others as you would have done to you. Manners maketh man…

Asshole. 

Halfway To A Plan Of Action

So I had my appointment with Mr Politis this morning. Hurting so bad after all of that sitting down. Apparently they had booked 4 people in for the same 10am slot, which meant I had over an hour of waiting to do. Not great for someone who struggles to sit properly for 10 mins! (I'm sure there's irony in there somewhere) I had a little mooch around the hospital & grabbed a coffee, all of the time getting more and more nervous for the serious conversation that was about to come. It really didn't help seeing loads of people hobbling about on their crutches, knowing it will be my turn soon.

 
I decided to pop into hydrotherapy to see if I could quickly have a word with my old PT - she knows a lot about my condition so I wanted to give her a quick update & ask her about Mr Politis, I can't seem to find much about him on the internet. She kindly spared a few minutes and reassured me by telling me that my consultant is a good one & he regularly works with Mr McBryde, whom I have heard great things about.

Before the appointment I was given a questionnaire to fill out on my hips. 

"In the past 48 hours how have you found sitting?"

After torturing me with your hour and a quarter wait, I would say 'Extreme'! Now let me get off my ass and go and see the doctor... 

I was finally called to his office. I slumped myself cross-legged on the bed, pleased I managed to avoid another chair. It's nice having someone who totally gets my 'not being able to sit down properly' problem! He asked about the steroid injection & I told him it didn't do half as good as I was expecting, that I only had one day of good relief & even walked around the park twice, but after that it has pretty much been its usual, painful self. 

He wasn't concerned about the lack of effect & said as long as I felt at least a tiny bit of relief, that is a sign that my pain is very much hip related. Oh, how I wish the last 6 weeks had been the bliss I had heard about with steroid injections, but it's good to know it wasn't completely pointless.

He then started showing me my scans & this is where it all started to get rather complicated. There were all sorts of angles he was measuring and showing to me (I can't remember any of them now!) Some were pretty far off 'normal' and some were worse on my right side compared to my left, which he explained might be why I am having more of a problematic time with my right side - I am starting to feel more aggravation in my left side which is certainly getting stronger, but compared to the screaming right hip pain it's manageable at the moment. 

Apparently my case is quite complex, which is not the best news. He is still unsure which exact route to take from here, but he did explain a couple of options and stated that I will perhaps need 3 different types of surgery... Oh my.

My femur is retroverted (the ball part of my hip joint is facing in the wrong direction), so I was told that I 100% need a femoral osteotomy (FO). Cue the biting of fingernails and tight curl of the toes as he began to explain the cutting, maneuvering & plating of my femur- a whole lot to take in after only recently learning about all of this - and not the only thing that needs doing either. This is going to be a really long journey and that makes me scared.

An arthroscopy is also on the cards as I have bone spurs growing on the side of my acetabulum that need shaving off (the hip socket has extra growth which isn't supposed to be there, this causes friction in the joint) I believe this is called pincer impingement. He mentioned perhaps reusing the bone for the FO, economic! I also need the labral tear (cartilage damage) and the cam impingement (femur head deformity) to be repaired.

Then he spoke of the possibility of doing a Triple Pelvic Osteotomy (TPO), which is from what I gather, kinda like my hospitals version of the Periacetabular Osteotomy (PAO). All I know about that is that they cut the pelvis in three different places and then adjust the position of the acetabular, using screws to keep it in place. He said he was unsure if this is what I need at the moment, and that he can't know for sure, but perhaps doing the first two options together might fix my problem. A little confused by this, because from my (brief) research, the gist I get is that the acetabular needs correcting in order for alignment to be right. He also mentioned that preforming all three at the same time would make it a significantly long surgical procedure.

I'm in for a tough couple of years. Urgh.

I also got into the discussion about whether this is classed as hip dysplasia or not. He is adamant that this is not, but UCLH told me last week that my x-rays show hip dysplasia. So the confusion on that front continues. I queried if any of my hip problems could be posture related. I've had back problems since I was 17, so my posture can't be too great with the 3 slipped discs that I now have. He told me that this is entirely bone related and is either something I was born with or have developed as a child. He did say that maybe my hips could have been causing my back problems all along, but it's not definite.

He will now discuss my case with other consultants on Friday and get back to me in a couple of weeks. I really hope the wait isn't too long.

I now feel like a have a little bit of a plan coming together, even if it is just in pencil atm. There are steps that can be taken to give me a normal life in the future & for that I am grateful. The thought of battling with this forever is a nightmare.

I have a hell of a lot to prepare myself for, both mentally & physically, but this will not beat me!

How Good It Feels To Be Believed

Along with my back problem and the other random aches & pains that come along with EDS, I've been suffering with serious & 'mysterious' hip & groin pain for the past 2-3 years. It has only got worse & worse, so it came as very bittersweet news to find out that I actually have some pretty serious problems going on with both of my hips. Whether it is anything to do with my EDS or related to my back problem I am yet to find out, but hopefully I will know more soon. 

The agonising wait has been a long & painful journey. I've been unable to walk very far, stand up for long, sit down comfortably (any longer than 10 minutes is too much!), lie on my right hand side or do many other 'normal' things for far too long now & it is very frustrating. Something just really doesn't feel right in my hips. It was even more frustrating when it felt like nobody was taking my hip problems very seriously and I was constantly being dismissed. 

I know those close to me found it difficult to understand just how much pain I've been in. Invisible disabilities suck. I had a physio telling me it was psychological, a specialist saying he thought I was traumatised - and trying to get me to think back to the day when my back problem started (he believed that all of my pain could be stemming from some sort of stress back then). To be told that something so painful and limiting is all in your head is so confusing and petrifying! 

When my podiatrist wanted to take an MRI to examine the arthritis in my big toe, I finally got round to convincing somebody into taking an MRI of my hip. Although the appointment had nothing to do with my hip, I think he must have been able to see the pain in my eyes and gave in to my pleas!

The MRI came back that I have an extended labral tear. I've since seen a hip specialist at the Royal Orthopedic in Birmingham who requested x-rays & a CT scan. I am yet to receive the CT results, but from the x-ray results I've been told that I have all the signs of acetabular retroversion and possible femoral retroversion, pincer over-coverage of the femoral head and some small cam deformity. Needless to say all of these terms are very new to me and I've just had to look them up myself for the minute until I have my next appointment on the 7th. Unfortunately, it appears most of these are slightly uncommon as there's not a lot of info out there.

Six weeks ago I had an x-ray guided right hip injection as a diagnostic tool. I was expecting to be walking on clouds, but the results were pretty dim. I had around one day of good relief a week later and then a few weeks with very slightly reduced pain, but it's still been really uncomfortable!

I'm also slightly confused as UCLH took their own x-rays when I was there for my EDS diagnosis. The lady I saw back in Feb rang me last week & told me that I have hip dysplasia & that Mr Witt would like to see my CT's - upon doing a little research this appears to be different to the retroversion? It seems I still have a lot to learn about what is actually going on with my hips!

After discussing in detail what it all meant, it has become very clear that I am going to be undergoing some sort of hip surgery in the near future & she did mention possible PAO which I have had to get my head around. 

I was linked to this video which is a pretty good explanation of what that's all about and it's fair to say that it's a daunting prospect! Especially when I can feel my other hip starting to go...

I now at least feel that I am on the right track with my hip and hopefully from here I can move forward towards getting my mobility back!

I go back to my hip specialist on Tues, so will give an update of what he has to say. 

It would be great to hear from you if you have knowledge of, or can relate to anything I'm talking about. Drop me a comment :)