Fork in the road

New path, new dawn, new chapter, new blog! Tada!


Here comes the fork in the road, there we were travelling along, eyes fixed firmly on the horizon and then, what do you know, BANG, suddenly, head spinning I have no idea where it is I'm going and how the heck I got here!


I guess I should probably share where 'Here' is. 'Here' is sitting in a Doctors office in London a long way from home being told that no, actually I don't have 'classic' Hip Dysplasia (which would be operable) I do have a deformity within the hip joints but he suspects what is causing the chronic pain I live with and all the semi dislocations I experience several times a day is Hypermobility Syndrome. Hypermobility Syndrome that can be 'managed' but there is no easy surgical solution. This is a new road now and not the road I was on half an hour ago before the appointment so please excuse me whilst I reach for the travel sickness bands but this journey is making me feel a bit queasy.


I have spent the last 6 months so focused on the idea of surgery and 'getting better' so although the consultant was one of the kindest Doctors I've ever seen I feel a little winded and utterly devastated. It takes me a little over a week to compose myself and discover that 'here' is actually an ok place to be.




Fortunately I have the most supportive husband on the face of the planet and the more we read about Hypermobility syndrome the more everything falls into place. We might as well be reading my medical history.


So for a crash course in Hypermobility syndrome hold on to your hat...here we go.


Hypermobility is perhaps best described as having excessive movement in any joint, thus making it move above and beyond what would be considered normal. Hypermobility Syndrome however is 'symptomatic' and frequently causes pain. For a gymnast Hypermobility would be a bit of  perk however Hypermobility syndrome would almost definitely be problematic. Hypermobility Syndrome is a connective tissue disorder caused by faulty collagen and causes the sufferer a whole host of other complications.


The list of symptoms is enormous so I've been slightly selective in what I'll share however for further reading I would point you in the direction of the Hypermobility Syndrome Association  which can be found here http://hypermobility.org/ One thing I am fascinated by are the more abstract symptoms, the things that I thought were just 'me' but, so it seems, are not!


Recurrent joint dislocations or semi dislocations (along with shallow joints)
Chronic pain
Fatigue (One thing I've learned about Fatigue is that it is not 'just' feeling tired, this is every part of your body, every fibre of your being, every cell feeling exhausted!)
Stretchy fragile skin that takes longer then 'normal' (there's that word again) to heal
Stretch marks
Clicky joints
Hip dysplasia
Early onset arthritis
Growing pains
Cramps
Tendonitis
Strained ligaments
Muscle fatigue
Clumsiness
Over-sensitivity (of nerves)
Poor reflexes
Mental clouding (or brain fog! Some might call them senior moments, just, not so senior when you're in your 20's!)
Changes in temperature
Difficulties swallowing
Indigestion
Bowel 'issues', symptoms associated with IBS
Asthma
Increased need to pee
Menstrual pain (think, 'I would rather be in labour then going through this' and yes, I am a mother, and yes, she was a BIG baby! Oh and did I mention I only had gas and air for the last hour of bringing her into the world?!)
Difficulties conceiving
Increased chance of having endometriosis
Anxiety
Depression
Insomnia
Memory loss
Patients don't respond to general or local anathestics as well and often need a higher dose, sedations also aren't as effective if effective at all.
The body doesn't respond 'normally' to pain medication meaning whilst they bring the pain down to a more manageable level the person is not left with complete pain relief.
A tendency to 'talk with your hands'


There are so many more symptoms but it would take me hours to list them all so I thought for now I would stick to the ones that I experience. Yup. That's me. All of the above.


Life hasn't always been this way. I remember the days B.P (before pain) I loved the life my husband and I had created. I was a content stay at home mother, I adored spending every day with our beautiful daughter. We would spend our days baking, crafting, playing, going on long nature walks, cooking, growing, digging, running, spinning, splashing, shopping and dancing. I adored motherhood and I was blessed enough to have a husband who worked so hard to enable me to stay at home so our daughter didn't have to go into childcare.


Everyday we would go into our wonderful town centre, we'd visit the butchers, the grocers, the bakers and off we went, home again. Living this spectacular traditional life that worked for us. I took great pride in our life. I really felt like we had it 'right'. The main thing was that our daughter was happy.


Then 18 months ago I started to experience pain in my right hip. After a few weeks of this niggling pain turning into a hot poker kind of pain I went to see the nurse at my local medical centre. I was put on crutches and given antibiotics told that it was likely an infection within my hip socket. After a week of semi bed rest it did feel as if things had improved. I came off the crutches and went back to life. The hot poker pain had calmed back to the niggle. Sadly that didn't last long and I was back at the Drs, back on the crutches and this time having an xray and being referred to consultants. It felt like everyday the pain was getting worse and it really knocked me for 6.


Countless x-rays, 2 MRI scans and weekly hospital appointments for the entire summer of 2012 left me being told I had a 'significant labral tear' and would need to be referred to Reading hospital (3 hours from home) as my local hospital had the Dr to do the surgery but not the funding for the equipment that they needed.


I'm not going to dwell too much on the next four months because they were some of the hardest of my life. The pain by this point was off the chart and I was on a cocktail of really heavy really nasty pain killers that had horrendous effects on my state of mind. Along with the horrible side effects of the pain relief I was also beginning to mourn the life I had lost touch with.


In October 2012 I had surgery on my right hip, along with the labral tear I also had a mass of bone removed and my soft tissue reattached. If anything else it explained why I had been in so much agony. The surgeon was fantastic, the hospital was not and I left traumatised. Literally traumatised.


I was told I had Hip dysplasia in both hips. During my recovery period the 'clicks' within my hip increased to a frequency that actually excelled what they were before my operation and Reading told me they could do no more and I would need to go to London for an operation called a 'Periacetabular Osteotomy'. It's a major operation that takes a lot of consideration but it would eventually give me my life back!


After waiting months for the referral to come through, all the time living with this pain and missing being the woman I use to be my husband and I decided to book a private appointment to see the Dr we were told I needed to see. It was a huge decision for us because of the financial implications but over the past 18 months I hadn't had the best experiences in hospitals and I needed for my own sanity to see this Dr quickly and ask all the questions I needed to ask without feeling like I only had a 10 minute appointment and that was my lot. (I still haven't had that NHS referral come through...5 months on!)


And that's it. Here we are. New path, new dawn, new chapter, new blog.


Be blessed.


x x