Life Moving Forward At Last?

I haven’t updated the blog with a personal update in a long time, so after having some treatment, and having something to update you with now, I thought it would be a good time to do just that.

A quick recap for anyone who isn’t aware, or who may have forgotten because of the length of time that has passed, I live with the genetic condition Ehlers Danlos Syndrome which means that, amongst other things, I’m bendier than the general population. The main problem for me at the moment is that my neck is giving me problems. A lot of problems. There is so much pain to deal with that I struggle to manage on a day-to-day basis. It feels too heavy for my neck, I can’t sit up working at my laptop for more than two hours at a time without it being agony and my social life in nearly non-existent.

I’ve sought out help within the NHS and have been fobbed off by an orthopaedic surgeon and a neurosurgeon which then sent me flying off to the US in April, where I knew there was a neurosurgeon who understood the impact of EDS on the neck. How it makes it as unstable as the other joints in the body. It was there that I was finally validated and he diagnosed me with a real neck problem.

I flew home feeling better for the validation but knowing that I needed to find a neurosurgeon here to take me on and believe in me or I’d have to raise a lot of money to go back to the States for surgery to fuse some bones in my cervical spine.

Well, with a little investigative work I found a surgeon and asked my GP to put the referral in. I kept my fingers crossed. The consensus by many (typically) women in the country is that they are not being recognised as having a problem by any neurosurgeon they see.

I have been so lucky, the neurosurgeon is the loveliest man ever. He listened to me and he understood what I was saying. He has also operated on EDS patients with these head/cervical spine issues! And he was willing to help me.

On Monday I had injections in the area he believes is the problem. The point of these is twofold. They are to relieve the pain and if this happens, then it is diagnostic, it shows he has the correct area C1/2 and he ‘might’ go ahead and fuse them. I feel like I’m in safe hands. At last.

This journey, for my neck, has only been going on for about 4 + years.

Living with a chronic condition is tiring. But, I’m lucky in that I have my writing. It flexes my brain, keeps me ticking over when the rest of me is struggling. I also have great support at home and this is massively important. I couldn’t do what I do without it.

The great news, though, is, that I think the injection is working. I’m not feeling the pain I am used to feeling. I’m hopefully optimistic. I don’t want to start celebrating too soon and it all come crashing down around me, but yes, I am feeling some relief. My neck isn’t my only issue, I still have the rest of my body fighting against me, but it has been the largest and most debilitating issue of my life for the last 4 years. To get relief from it is absolutely indescribable.

Please do keep your fingers crossed for me.

Using Food In The Battle For My Health

My health is deteriorating, but I’ve found a new way to take charge and to help myself in this constant battle with my own body.

Food.

Yes, the food I am putting into my body, or more specifically, the food I am now no longer putting into my body, is helping in my day-to-day battle with pain.

Let me explain.

Back in June, I read a book called The 8 Week Blood Sugar Diet by a Dr Michael Mosley. The book is geared towards diabetics, specifically, type 2 diabetics. Dr Mosley claims that he can cure type 2 diabetes through diet alone. I’d also read a post on Facebook where a woman claimed she had lost a huge amount of weight in only a month after reading this book – and she had the photos to prove it. I was curious. I’m not diabetic. I have a family member (married into – not blood) who is, and I tend to put my weight straight to my stomach, so as I get older I am easily at risk of going into the prediabetes category anyway.

I loved the science behind the book. It was in simple speak and backed up by the evidence of people having followed Dr Mosley’s simple plan.

Basically, sugars and carbs are bad.

I then thought back to Ella Woodward, the young woman who had changed her diet to support her recovery back to health. (Though I have one caveat with saying diet can cure POTS – with what I’m saying in this post I completely believe her recovery was down to her diet, but there are two types of POTS. I have the secondary type, due to EDS, my veins are too loose to pump my blood around my body properly and you are never going to tighten them up with food. I just wish the fact that there were two types of POTS were made clear when she made the claims, as it is with Dr Mosley’s book with and diabetes. There’s no way he could cure type 1 diabetes.) Anyway, thinking back to Ella, I realised that food is important to our bodies and is in fact very impactive and does play a bigger role in things than maybe we understand.

I then got speaking to Pam, a friend of mine, who has a massive allergy problem, so much so that she needs an EpiPen, she is having to control her life through food because a lot of her allergies are food related. And they’re not the usual culprits. It’s bizarre. But she’s had to pare back to basics and it was interesting (sorry Pam) to watch the process of food and its impact on the human body.

So, between these three things, I decided I was going to do this for myself.

In mid-June, I cut out sugars and carbs. In 4 weeks I lost 10 lbs and I’d halved my painkiller intake. Halved it.  

I had also had a pain crisis from overdoing it during the book launch and needed to go to A&E, but changing my diet isn’t a magic cure for an unstable neck and head. It is, however, another weapon in my arsenal against the daily pain I live with and if it works then I’m taking it.

I’ve lots to learn about the diet yet. I haven’t been rigid – I ate too much in the way of sugars on holiday and am now losing the 5lb I put on (2lb off in 5 days). I haven’t touched bread, pasta or potatoes since I started in June, but my diet is very basic at the minute and I need to learn more about what I can eat. But, it’s a start and I’m enjoying the journey. I hope I can share it with you?

Who’s Looking After The Zebras?

When you hear hoofbeats think horses not zebras.

That’s what medical students are taught during training.

What does this mean?

That, when you have a patient with a list of symptoms, reach for the more common, more likely diagnosis, rather than the rare diagnosis.

Because the rarer diagnosis sticks in the mind more easily, students tend to reach for it, maybe more often than they should, so this phrase was started and has stuck. But the problem is, that is has stuck so hard that doctors don’t even consider that they could have a zebra in front of them. And even if that zebra is a real, genuinely diagnosed zebra, they can still be disbelieving.

This is difficult to get used to.

The Ehlers-Danlos charities and Hypermobility charities around the world have adopted the zebra as their mascot because of what it represents.

May is Ehlers-Danlos Awareness month. And because of that, it is in this month that I’m going to tell you what happened during my trip to the United States last month.

I visited a neurosurgeon over there because I’m a diagnosed zebra and over here, in the UK, I was invisible. I was, I am, in, unbearable pain in my neck and head and have many other symptoms to go along with that. But because doctors don’t take the EDS into account when asked to figure out what is causing my neck problem, it wasn’t investigated in the right way, causing me to seek help elsewhere, help in a place where I knew the doctor understood the zebras.

The reason it has taken me so long to update you on what happened over there is because I was left stunned and shocked. Yes, I went over there knowing something was seriously wrong with my neck and hoping to finally be told I was right. But knowing it and being told that, are two different things. I felt as though I’d been hit by a bus. I also couldn’t believe how shocked I was. I took me weeks to get my head around it. Days before I could even really talk about it.

I have two problems in my neck and a TMJ problem – which is my jaw. The jaw problem – my jaw isn’t stable and comes out of place – is causing some of my headaches.

The two issues in my neck – the main one, causing all the pain and symptoms is atlanto axial instability. Which is my C1/2 moving about where they shouldn’t, on rotation mostly. Causing some minor neurological issues. He said this can be stabilised with surgery and that it could probably be done in the UK because this surgery does get done in the UK. If I can’t find a surgeon to do it, then I can go back to the US and the diagnosing doctor will do it.

The other issue is instability at C4/5/6 with minor subluxation and some disc bulging with minor spinal cord impingement. There are no current symptoms from this but the train of thought from patients who have been stabilised in one place is that once done, the other less stable structures then struggle to maintain what stability they have.  So, I have that to look forward to.

Now, I have to find a neurosurgeon who will agree to see me and who will assess me as a zebra. A patient who is different to their other patients. A patient whose body works in an entirely different way. Gravity makes a difference and movement, and they need to believe me when I say how bad it is and how bad my quality of life is, because when I walk into their office, I am more than likely going to look fine. I can’t leave my house without having a shower first and drying my hair. This makes me look human. But because I can get clean, does not mean my body is functioning like it should do or that I am in less pain than I’m saying I’m in.

And even if I can get someone to assess me as a zebra, I then need them to agree with the diagnosis and then agree to surgery. Otherwise, I have to find a lot of money to go back to the States so I can have the back of my head cut open in a foreign country when I’d much rather be at home for something so drastic.

Going over to America has been the start of a journey, I still have some distance to go if I want my neck stabilising so that I can have some quality of life back. And that’s not too much to ask is it? Really?

You’d think it was though…

It’s about time the above phrase was phased out. It leaves the zebras out in the cold with no one to care for them.

Travelling Across The Atlantic For Medical Help

On Monday my other half and I flew out to Washington DC for the medical appointments I have been wanting to deal with for some time. This is where the neurosurgeon who has a real understanding of how the Ehlers Danlos Syndrome body can affect the neck and make it unstable, is based. This is where I hope to get some answers, support, and help. It’s just unfortunate and sad really that I have to travel halfway across the world to get that. Sad that we can’t access it in the UK. But, needs must, and I travelled.

We have rented a lovely little one bedroomed AirBnB apartment in the Capitol Hill area of Washington. If you’ve never heard of AirBnB, I’d highly recommend you look them up. For a lot less than the cost of a hotel, we have the run of an entire apartment and it’s clean and in a lovely location.

 

Tuesday we took it easy, walked to the local supermarket in the morning and did some shopping and in the afternoon we walked some more, taking in the local neighbourhood, which is so pretty. Though, it might be classed as a legal nightmare in the UK. The pavements are block paved and some of them are very uneven and wave-like. Some are even all uprooted where tree roots have pushed up. This would give the sue-everyone-for-everything people a field day as they walk around with their tape measures for lips in paving slabs back home.

One thing I found and loved was a tiny library in a garden!

Also, a number of squirrels running free along the gardens. Beautiful little animals all over the place.

Yesterday we took our first trip on the Metro as I went for my CT scan and MRI. The Metro is absolutely cavernous. It’s also really easy to use and a lot less hectic than the underground in London.

Today I take my CT and MRI discs to the neurosurgeon and have the all-important appointment. This is the part I am terrified about. I am absolutely terrified that he will tell me that though my symptoms are bad, I don’t fall into his criteria where he can help me, which means I will have to continue to live as I have been doing, which, to be honest, is no quality of life for any person at all. And if this is the case, then I’ve wasted a lot of money to get over here and a lot of hope in the process as well.

So, if you can spare any hope today, I’d really appreciate you sending some my way because you’re probably reading this before I get to my appointment.

You might have seen me on social media the past couple of days, but I will probably be quiet today and tomorrow as I digest what comes out of the appointment, be that good news or bad. Even good news, is bad news in itself.

When I’ve had time to take in the results and digest them myself, I will update you. And also keep the picture diary flowing of my time here.

Thank you in advance for any hope help. It’s much appreciated.

 

 

Falling Over The Pain Precipice And The Future

Some of you may have noticed I have been fairly quiet on social media of late. I haven’t been on Twitter, my Facebook use is limited and my blog is being pretty neglected.

The reason for this is that a couple of weeks ago I went right over that precipice, over the cliff edge of the pain barrier and I couldn’t cope anymore. Getting through each day was hard enough without picking up my phone or my laptop and being sociable. I didn’t want to talk. All I wanted, all I want, is for someone to take this constant pain away. I have even reverted to wearing my ugly hard cervical collar again, but it hasn’t resolved the issue straight away because I’ve fallen so far over the edge it’s taking some pulling myself back up. Getting back to a manageable place isn’t easy.

I haven’t updated the blog for a while on where things are in getting answers and help, so this is as good a time as any, while I’m making my apologies for my absence.

I have been seeing a physiotherapist in an attempt to strengthen the muscles in my neck so they can help support my head. When she examined me she found several things. She found that my ligament has virtually no end point when she applies pressure, so it continues to stretch and move and she found that I am mechanically unstable. This is the first time someone has actually physically felt the area I am concerned about and having someone confirm this stops me feeling like I am chasing ghosts.

Then, last week, I received an email from the neurosurgeon’s clinic in the United States where I have been on a waiting list, and I have an appointment with him in April. He is one of the top neurosurgeon’s in the world who has a good understanding of how the EDS body and the head and neck work together, or more importantly, how they don’t work. So, in April, I am flying over to America to finally get some answers. I was really shocked to get this email. I thought his waiting list was so much longer. This next step is exciting, because I’m finally going to see someone who really knows what they’re talking about and scary, because of the implications of what he could say, because I may not fall into the bad enough category for him to deal with – yet my life is so restricted – or I might and that in itself is scary.

(And I wouldn’t be posting this if my house was going to be left empty and unattended, it isn’t.) You can expect some photographic updates while I’m over there as well, because I’ll be doing a spot of sightseeing while over in Washington.

I’m going to try to get back on the social media train. The level of pain I’m in on certain days will dictate what I’m able to do, but I wanted to let you know, I didn’t want to look like I was just sliding away.

Do you think social media is something you can dip in and out of or is it something you have to keep at on a constant basis?

 

Going Backwards

It’s been a while since I updated you, or did a video diary entry, on the whole, neck issue thing that I’ve been living with. So, as things have taken a backwards turn this past week or so, I thought it was a perfect time to provide that update.

I’ve done a video entry and as it’s 8 minutes long, I think I’ll leave it all to the video, but let’s just say, things aren’t going well and I’ve now taken my collar off and my health is being affected by it. But, I’m still doing what I need to do. There are no other options available.

I will try not to leave it as long between entries in future, but I did need a bit of a rant this time…

1st Video Diary Entry For Ehlers-Danlos Syndrome Neck Issues

As I mentioned a couple of weeks ago in this post, I was going to start a video diary about my journey to get a surgical diagnosis and intervention to repair my medically damaged neck.

This is my first diary entry. I won’t post all entries on the blog, they will go onto the playlist on my YouTube channel so if you’re interested in seeing them you can subscribe to be informed when they are uploaded. It will be an open and honest account. Let’s see how this journey goes.

Ehlers Danlos Syndrome – Craniocervical Instability – A Diary

Some of you will know from following me on social media (Twitter and Facebook) that I went to an Ehlers Danlos Syndrome conference in London at the weekend. It was organised by the Ehlers Danlos Syndrome UK charity and was about craniocervical instability. Some top Dr’s from the United States came over to talk to us and included in those Dr’s was a top neurosurgeon who specialises in craniocervical instability in EDS patients.

 

It was an interesting talk, but – I knew everything they had to say because I’d googled it all to death anyway and I’d watched Dr Henderson (neurosurgeon) speak on the subject on YouTube video’s at other conferences that were recorded.

Dr Henderson giving his talk.

What I and many other people there wanted, was some one on one time with these people – not a medical appointment, but at least the chance to be heard or to ask a question. My question was about whether my MRI images had even made it over to the states yet. They were supposed to have been sent in November last year.

I managed to grab Dr H for a brief 1 minute between talks and ask him and I don’t think it has got to him, so while I’ve been patiently waiting, thin air has been wafting about. And while I’ve been patiently waiting, I feel I’ve been deteriorating.

So, my plan is this. I’m going to have my summer holiday then focus my efforts on finding a US Neurosurgeon to look at me and assess me and see what is happening. Before I go away I’m going to take my collar off for an entire weekend and I’m going to record all my symptoms as they will flare up massively without my collar to help support my head. I know I will be really ill. I’ll be in a lot of pain, probably vomiting, passing out and I’m wondering if any other neurological symptoms will show themselves as I allow my head to move around at its own will on my neck.

I’m also going to keep a diary now. From now through to feeling well… In the form of a written diary, in a notebook, on here and also a video diary which I will put up on my YouTube page under a specific link. It won’t always be pleasant, but it may be helpful to others who will be going through this. I’ve a long hard journey/battle ahead of me, but I have little quality of life, so I need to fight and resolve this part of my EDS trouble if I can.

I hope you won’t mind the occasional diary entries here.

A Life With Holes

You may or may not have noticed that the blog has been awfully quiet for about the past week. There have been no new posts and there has been no activity on Twitter. It was as though I was sucked into a large black social media hole.

It was also the same for me behind the keyboard and the reason for the social media absence. I get Ehlers Danlos flare-ups and it’s like my life is sucked into a void. It stops. I don’t get my laptop out. There are no words added to my manuscript. There are no blog posts, no tweets. My family don’t see me as I fester under a quilt of agony upstairs.

I have no interest in being sociable. I don’t care if that offends. All I’m interested in is the pain stopping and the gloom that comes with it and hovers over me, disappearing. It takes close to a week before I’m functioning again. A week lost in a hole of time.

This was the reason I ended up closing the crime book club. I miss it terribly, but I’m reminded yet again how unreliable I am.

I now have to catch up with my word count without pushing myself over the edge and into the pain-is-too-much area. I have to give some love and attention to my poor neglected blog and I need to feel as though I’m alive again!

I hate that I have to live this way. That my life has punctuations in it where everything stops but all around me carries on, as it should. I’m missing parts of my life. It’s like someone has a hole punch and randomly punches through my timeline and I fall into each hole and have to fight my way out. It’s funny, when I’m up and ok-ish, I want to fight and do everything with as much energy as I can muster, but when I’m down those holes I don’t care about anything. The pain and fatigue suck the life force out of me and all I care about is making it to the end of the day when everyone else is also in bed and I can sleep and feel normal because guilt is the one emotion that does creep in. Guilt that my family have to live with these holes as well.

A life with holes isn’t much fun, but for now, I’ve climbed back out. I’m me again.

At the weekend I’m attending an EDS conference in London where specialists from the US are speaking about craniocervical instability and I hope to learn a bit more and make some contact.

Tomorrow on the blog there will be a Recently Read post on Snowblind by Ragnar Jónasson.

Thanks for still being here. I look forward to catching up with you and filling another of the holes that appear in my life every so often.

From Detective Constable to Crime Writer

I’ve struggled to write this post for the past couple of weeks because of the emotions that are raging through me as I transition through the changes that are happening in my life. I feel as though I am slowly, but gradually losing parts of myself to a disorder that is taking over my body. Not only is it affecting how I live generally but it has now taken a massive part of my life that I suppose I identified myself by, that I loved to do and that I felt I made a real difference doing.

Rigid cuffs and asp before returning.

Two weeks ago I was medically retired  from the police where I was a detective  constable and had been for the past 8  years. It was a job I loved, but I’m no  longer able to do. Prior to that, I spent  many a year enjoying my role in uniform.  I’m telling you, that is such a great role to  do and yet, so under-valued. In total, I had  just over 15 years service. I have seen  many things you would believe and  wouldn’t want to see. I have to tell myself  that in that time I did make a difference, to people who will have noticed and will remember and those who won’t have.

Now though, now I have to move forward and take what I know into my writing and let myself focus on that, as I need to focus my mind somewhere. My body might be flaking away, but my mind is very much intact (well, most of the time!) so being a writer is the new career goal I have.

It has been hard though. There have been tears. Being a cop, is a strong identity to just leave behind. It’s something I’m still working through. You may have noticed less activity from me on social media some days and these are the days I struggle, but I do have something else and I’m holding onto it. I will keep writing, you can expect to see me continue to produce work. Life just has to be adapted to, no matter what it throws at you. I’m lucky I suppose. I already had my love of writing to fall back on. And I do love it.

This month is also Ehlers-Danlos Awareness month and I think losing a job to the disorder is awareness raising in itself. You can find more information about the disorder on the UK charity website Here.