Thursday 28 January 2016

"I'm not qualified for this" -A tale of a fragmented and centralised health system

Chapter 1.

The Clicky Hip That The Doctor Missed 

Once upon a time, there was a girl, and this girl lived in a land of infrequent and inconsistent health care. As the girl grew, she slipped through the gaps -Being told treatment was too late, there were other issues at play, she was "wonky" and they weren't qualified to help... Just beyond this place, in various reaches of the further land, many children with similar issues, and many adults too, were receiving regular health care. Surgeries, rehab facilities and specialists galore. They lived quite a different life because of this... It was only at the age of 30 that the girl finally realised the truth. The truth being: National healthcare was a lie; her circumstances had resulted from her address.

I have always had hip dysplasia. Always. Doctors may have thought I was a dumb child, so referred to it as being "wonky", or being "slanted". Many hear of it and comment "Oh yeah, clicky hip I think it used to be called?" and generally follow that up with how it's no big deal, loads of babies get it... etc., etc., and this can be the case. When found at birth or shortly after, a harness is usually fitted. Annoying for the parents and child, but extremely vital for the child's correct growth. The issue is that the hip, usually either in the womb or at some stage during the birth, comes loose of it's socket. Generally treatment begins straight away -with a harness, regular check ups and x-rays and possibly surgery starting around 2 years of age, sometimes before, depending on the patient. Some don't need any surgery or just one surgery, others need several surgeries, throughout their life spam. These surgeries are to help the hip be more stable, to save the hip from replacement for as long as possible. This can include strengthening the joint and deepening the socket so the hip will sit better in place. Now, without this treatment -as in my case (as the doctors refused to even look at me until I was older and walking funny/ limping)- the body creates
its own sort of new, shallow socket for the dislocated hip to sit in... sounds absolutely shit crazy to me, and I am amazed at how our bodies can adapt. Sometimes I read in doctor notes: "untreated and UN-DIAGNOSED hip dysplasia". I hate seeing that! I was untreated, yes, but certainly NOT un-diagnosed. I have always had hip dysplasia.

As I said, when older and walking, they started to take notice. Unfortunately, from what I gather, surgery works best when occurring by 2 years of age. This didn't happen. I had some very painful physio instead and continued with my life, being reassured that the pain was being made worse by added growing pains and that my hip, back and legs would feel better once I stopped growing. Once I was an adult, I would be in less pain, I would have better mobility... I remember mentioning this to a doctor when I eventually went as an adult (of course by now, disliking doctors and avoiding them as much as possible for years) and he just looked at me... feeling bad that I had been told this and I had mostly believed it.

It was only the start of pain and injury. The issue being (of course, through common sense when you actually think about, like I hadn't at the time) that when you are "wonky", you walk wonky, thus putting strain on all areas of the body. The new socket my own body had created obviously wasn't inline with the other hip, resulting in a (unnoticeable most of the time, I think) leg length discrepancy. Over time, this caused strain on the longer leg and I am now knock kneed. My feet have also taken a beaten, as years of placing pressure on them incorrectly have made them extremely flat and achy. I since have received (only couple years ago) shoe insoles to aid both the flat feet and lift the shorter leg. I had these as a child, but as I said -was not aware that I would still have issues as an adult. Unfortunately, these insoles are too little too late in a lot of respects.

Twice in my adult life I have been sent to physio by concerned doctors who didn't know what else to do, and twice I have been told (after strength and balance tests) that not only is physio not a treatment for hip dyplasia, but I simply do not have the strength for it. I have no balance, core strength or centre of gravity. They would be afraid to ask me to do any of the exercises... Both said that of course, if I ever get surgery that I would need physio afterwards. But surgery is the only thing that can help. First sign on a fragmented health system -One specialist not realising how their colleagues work within another field. Why suggest surgery to someone, unless you don't realise that it isn't generally done for adults in Ireland. Or at least, in this part of Ireland... I kind of wish I had turned around and said something at the time. It was an unintentional sting on the physiotherapists' part, but don't dangle the idea of surgery in front of me, in my grasp, like it's a probable possibility.

By the time I was a teenager, my mobility was declining and I couldn't run very well. Fell often. Began noticing quite a lot of dizziness and sometimes actual fainting (which I know now is caused by low BP, dysautonomia). Gradually, in my early adulthood, I couldn't run anymore at all. I missed running. I still really do. I didn't think it could be worse, but as the last few years have shown, now my walking is slowing. My body becomes stiff, my muscles spasm and become tight, my limbs can be numb. Sometimes with pain, sometimes not, I have to pace myself, can't walk for long or when I can, I pay for it in pain and restriction of movement later... I pine for the days in which I was only missing the ability to run. There are many days now that I wish I could walk.

...When I completed my cancer treatment, I was of course delighted. Not because of the obvious, but because I could get back to being on the orthopedic waiting list, in the hope that I may finally make progress towards having the hip surgery that I have needed since birth. With everything happening during chemotherapy and radiotherapy, I had been taken off the list and so had to begin the process again. During treatment, in order to acquire a medical card, I had to change doctors. So it was off to my new doctor to request my referral back to the orthopedic waiting list. I barely knew this man but he was frank with me -He told me he had done a placement in orthopedics himself and was pretty certain that they would never give me surgery. I was taken aback. I knew that some people had went privately themselves to England (from talking on online groups), but I honestly thought they had just got sick of waiting... I thought I would eventually get at least one of the necessary surgeries to save the hip, if not a hip replacement (realistically this is what I actually need, but any surgery would prevent further damage).

I was a bit thrown back by this, naturally upset... he said they would give me pain injections but probably wouldn't do much else. It's not treated much in Ireland and "especially not this part of the country, Lourdes definitely won't do that". He wasn't trying to be cruel, he really felt bad for me, and in the long run I am glad of his honesty. I would still like to meet with the ortho and inquire about how much I need to save to go to England for surgery, and so I am currently now back on the list. Still no appointment date, it could be another couple of years before I hear anything.

Before anyone asks, yes there is a policy by the Irish government that the HSE must provide medical care to an Irish citizen somewhere within the EU, and pay for this, if the required medical treatment is not available in Ireland -However, I gather this is near impossible to obtain, like, you have to literally be dying. The way they look at me is sure, I could just use a wheelchair for days I can't walk. Not a great solution, especially when I hear of people in my situation having hip replacements at 30 and running marathons a year later. That's the story I hear a lot from English people on online forums. If it wasn't for knowing that I could possibly be somewhat, possibly even a lot-lot better, then I probably would just get a chair and let it be.

Now, of course there is a massive question on whether or not all my issues are from the hip/ birth defects, or have I developed a further disease or condition over the years. However, I still believe if I fix the hip it would be a massive change in how my body works. Maybe I'm wrong in this, but I'm prepared to put my money on it.

From chatting with my GP I was reminded of a previous occasion -when I got my PICC line fitted in Dublin. My treatment was in Drogheda but the surgeon there broke his arm. When they asked me what hospital I was getting treated at, and I said Drogheda, the nurse went off and came back with a bag of goodies -bandages, syringes to flush out the line, etc. because they, quote: "won't have these quality of items, if at all, in Lourdes". I felt the nurses back at home would feel a bit put down by this gesture but they were honestly delighted to get this bag of treats... It was a very bizarre thing to witness. I really felt for them. As hard as it might be knowing that I get less health care because of where I live, they are less able to do the work they want to do than their colleagues in other hospitals. Can't be easy working in conditions like that.

But this time, with my new GP, was the first time I had really noticed a doctor commenting on the fragmented state of Irish healthcare. Obviously, England is a completely different story, but I did also notice from online groups that some people with the same issues as me were having a completely different experience where they lived in Ireland, a better story had unfolded for them. But this was the first time that I had really thought about it. The accident of my address, in a relatively tiny country, had influenced how healthy I am at 30 years of age and ultimately my quality of life.

Chapter 2.

Like a Fish Outa Water

Muscle spasms have always been troublesome. In my adulthood particularly, they became the norm for me. The worst part is when the spasms cause the muscle to lock -tighten and tighten. The first couple of times this happened to my calf was scary, I thought my leg was going to burst.

An MRI of my C spine showed a "loss of cervical lordosis", which is basically just a fancy way of saying that the natural curve in my neck has straightened. The doctor said this can happen from violent muscle spams near the area. Caused from being slanted and putting strain on certain parts of my body, or by onset of a different disease? Who knows. Diagnosis's become less and less important to me with age. words don't change the fact of what is happening to my body.

I can just about handle small spams, on one limb or one side of my body, but the last couple of years they have taken quite a sinister turn. I've experienced a few occasions where my whole body begins spasming, muscles tightening, actually all over the body. the sensation comes in waves and can last hours. It's exhausting and for the next few days my muscles ache and are tight, like I have been at the gym for a few days in a row. Bicky describes it as looking like "a fish out of water" -Flailing about, uncontrollably. 

A few months ago I ended up in A&E because of these spasms. As usual, they were affecting the whole of my body, but this time I was finding it hard to breathe (the movement of muscles around my lungs were making them tighten). Bicky rushed me to A&E and had to actually pull over and ring 999 half way there, as I began to become worse in the car. Long story short, I ended up in the resuscitation room as my heart monitor was going crazy, just as a precaution. I was conscious the whole time, although from lack of oxygen do have a couple of memory blanks. The nurses and doctor didn't know what to do. They stared at me in horror, looking at each other then to the monitor. Eventually they gave me a muscle relaxant, but a few hours had passed and the tightness was beginning to subside anyway. 

Repeatedly the doctor and nurses apologised, said they "weren't qualified" (story of my life) and that I needed a neurologist -which they do not have in Drogheda hospital unfortunately. Another doctor (apparently, in his own words, A&E doctor's are not real doctors... seriously, the A&E doc actually said that about himself. Talk about insecurity issues) was called for. She did the usual neuro strength and balance tests and reiterated that I needed a neuro, and equipment, which Drogheda hospital simply did not have. By this stage I was in the corridor of the A&E, wedged on a tiny trolley. She wanted me to stay -even though she said they couldn't help. They "borrow" a neuro sometimes from Dublin, but he/ she would not be there for a few days. There was no beds and nothing they can do but she was afraid to let me leave. Eventually I won, made her see common sense. The nurses made me promise to return next time it happened, flabbergasted that I hadn't sought medical attention at the hospital when the spasms had been that bad before... I half agreed, not wanting to lie. We all knew it would be silly going back if they couldn't help, but I truly felt awful for the nurses. They wanted to help me but couldn't -simply didn't have the specialists or the equipment. I can't imagine what it'd be like to work in those conditions and my heart goes out to all the staff at Lourdes hospital.

If only I had lived nearer a different A&E, things would be different. But I don't, and so they aren't. There is an unsettling inequality within our health system based on geography alone. 

I went to my GP and finally gave in to taking muscle relaxants. 

Chapter 3.

Sleeping Kitty wakes up From Martyrdom

With pain comes fatigue. They go hand-in-hand. I may know sweet f-all about my own conditions, about medicine in general, but I do know that. So I never overly questioned it or discussed it much with my GP's or the neurologist. It goes without saying, I guess I thought. During bad days I can be exhausted, have to nap, can't do much at all. This has increased over time as the pain has increased, and the long-term effects of chemotherapy haven't helped I'm sure -fatigue being massively debilitating to some cancer survivors for years after finishing treatment. 

Recently however, the fatigue became so immense I could not stay awake. I was sleeping for the best part of 20 hours at a time, half waking up but unable to move, before falling back into what felt like a complete coma. Sometimes I could hear Bicky trying to wake me, his voice in the distance, but couldn't reply. I was trying to shout but nothing was coming out. Sometimes I could mumble a noise -A mumble is what came out but is was a struggle, I really felt like I was screaming. Still when I could eventually awake I was exhausted -no actual rest came from this passing out. 

I had been in more pain than usual -my "good hip" had been causing me some pain and I had extra spinal pain too. As I hate taking pain killers (and only take meds at bedtime to control muscles and nervous system) I realised that I was possibly doing this to myself -my body had had enough and was shutting down in protest. I gathered the physical strength to go to my GP (a lovely lady, they seemed to have got rid of the last guy but this one is very sweet and smart, so very happy with her) and ask for pain killers. She completely agreed with me and gave me a prescription for two strong pain killers. 

At first it seemed to work, they definitely helped the pain anyway and some of the fatigue subsided. I felt a bit dumb -being so staunchly against taking pain killers or medications was harming my body. There is no reward for being a martyr and just grinning and bearing it. My ideals are doing nothing but making my life harder, thus making me a complete jackass. I should be trying to stay mobile and embrace my abilities as they are now -even if that means taking pain killers to do so. I once dreamed of running, now I dream of being able to walk in a year or two -and I should dam well bloody remember that and stop being a jackass. I have a good head on my shoulders and a GP who knows what she is doing... besides, the whole point was not wanting to "feel outa it" -if I'm passing out from pain, or from whatever, then what is the difference?

Skip ahead a few days later and boom -back to where I started. Pain under control but fatigue back with a bang. I eventually managed, in one of my unconscious hazes, to ask Bicky to ring my doctor and see what to do. With a letter from her we went to A&E -but this time, under her advice (before we even got a chance to suggest it ourselves) we went to Beaumont (where they have specialists and equipment). 

A few hours later (the usual waiting time in Ireland) I was brought in to meet... lets call him Dr. Paul (made up name, I don't feel comfortable using real names, but he referred to himself by his first name when introducing. So, awesome already). He did bloods, urine, the usual shiz. Even a chest x ray -Just in case any swollen nodes were hiding in there. You can't be too careful about re-occurrence, especially before the golden five year mark. 

Couple of notes: During my visit, the place was very busy. I was sleeping in a chair, but so were elderly people. There wasn't the room for trolleys like in Drogheda (as little room as there even is there). With that said, the whole experience was just... better. The place was a bit cleaner, they had more staff, they literally were able to do some of my bloods (like iron levels) there in the A&E on the spot. Myself and Bicky actually oooowed and awwwed at this hi-tech wizardry.

The end results were that the bloods and co. were fine. Good news, but didn't help all the same. Dr. Paul had really been amazing -treating me like a human, acting like a human and also just adding a comical element to my adventure. 

He asked about the fatigue, when did it start. I told him a few years ago and he asked "from the chemotherapy?", oh no I replied -years before that... It was then that I realised I had been quite vague in our previous conversations. I had been quite vague about my fatigue in general to doctors for years. I guess I thought it went without saying. He had realised that this is what I had assumed too. He suggested that maybe I look at my illness from another angle, that the fatigue could be the main symptom and the pain the secondary symptom. Stumped. I was stumped. No one else had ever suggested this and I had never copped on. It's apparently very possible that I have something like M.E., but this will be something for the neurologist to decide on my next appointment in March. 

He also asked if it had ever been suggested I see a pain management consultant and seemed surprised when I said I hadn't. He's going to work with my GP to organise this and gave me advice for my next neuro appointment. He said definitely go to their A&E when my spasms are bad again instead of going to Drogheda. He couldn't apologise more for not being able to cure me, he could see how sleepy and fed up I was, but he really did help. 

I left there with an actual sense of moving forward rather than backwards, with a new sense of knowledge. If nothing else, knowledge will do... It might not seem like a lot, but my story is a slow story and I'm hoping this helps to open a better chapter :)

...And they all lived HIPily  ever after. 


  1. Wow thank you for writing all of this. I only got through Chapter 2 but I will definitely come back and read the rest. I remember when I had to go on muscle relaxants. I was not a fan at all. They gave me very strange side effects and I honestly preferred the feeling of not being on the pills.

    Natasha Shelton @ CCOE

  2. Mobilisation:Joint mobilisation is a passive hands-on movement technique applied to a stiff spinal or peripheral joint. It aims to restore full range of motion to the joint by activating mechanoreceptors within the capsule of the joints. It also has the effect of altering the neuromuscular (nerve) firing within muscles to cause a reflex relaxation of the surrounding tight musculature. Simply, it helps to restore normal pain free motion. Mobilisation is particularly effective when combined with other treatments such as soft tissue and muscle stabilising techniques, along with exercise. Joint manipulation: This technique is an advanced form of mobilisation, and those who respond well to mobilisation will usually respond to manipulation. Joint manipulation is the sudden movement or thrust of small amplitude performed at a high speed at the end of joint range.It is performed primarily to the joints of the neck and back, but can also be performed on other joints if needed. Patient’s will usually feel and hear a click. Manipulation can be a very effective method of treatment, but must be performed by a fully qualified Musculoskeletal Physiotherapist with experience in manipulation.

    Physio Drogheda