Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Today the NHS celebrates its 70th birthday, and with this milestone it is important to acknowledge what a valuable asset it is. With a government that seems to care very little about it, it is more vital than ever before that we shout from the rooftops about the wonders it performs day and night 365 days a year, and make our opinions known when it comes to ensuring that the NHS receives the funds it needs to continue you the amazing work it currently performs.

I am lucky to have experienced both sides of our NHS, as a student midwife I witnessed the strain in staff numbers and how overworked they are; as a patient I honestly doubt whether I would still be alive without them. I’ve had more ambulance trips than I care to count, and spent many months over the years being cared for as an inpatient. Without my neurologist I know that I would have little quality of life; I would not be able to eat, drink, talk, see, or move my limbs. He enables me to live a life that is fulfilling.

To the NHS I say thank you. Without you many lives would be extinguished, and many more would be experiencing incredible suffering. Thank-you for doing your all every day and night all year long. Thank-you for continuing to provide outstanding care despite your own government failing to supply you adequately. Thank-you.

 

 Image result for happy birthday nhs

Advertisements

CRPS & Dystonia

I first heard the words Complex Regional Pain Syndrome and Fixed Dystonia back in 2009; I had just been admitted to hospital with unbearable pain, colour changes, temperature fluctuations and a hypersensitivity to touch in my right leg. I would spend the following six months confined to a hospital bed learning to retrain the damaged nerves. It was a hell I would not wish on anyone. I am one of the lucky few, whilst I never achieved full remission, the pain eventually reduced to a tolerable level which only flares up if I lie down on that side of my leg for too long or bash it. Unfortunately I was rediagnosed with CRPS in summer 2015, this time it had manifested in my left shoulder blade and arm. Once again it had been caused by repeated injections to the same site which resulted in damage to the nerves.

CRPS has been a condition I have fought for many years, generally I have a good handle over it. I know what to avoid and how to help myself as much as possible. Yet every now and then I have days and nights like the last 24 hours. It is hard to describe the agony in which I have spent it in. The night before last I simply bumped my thigh whilst getting out of bed. The pain at the time seemed excessive for such a little bump, but I presumed if I lay down and rested for a few minutes it would die down to its usual level of simple discomfort. Instead with each minute that went by the pain intensified as did the spasms.

I made the decision yesterday not to leave the house, I knew I would be fully reliant on my wheelchair and that even the lightest breeze would reduce me to tears. Instead I kept myself fully medicated on Tramadol which dulled the pain slightly but nowhere enough. I needed both my walking sticks to hobble the few steps to the toilet. Each accidental brush from the cat as it went past left me biting back screams and in yet another wave of tears.

The spasms and pain kept me up for the majority of the night. I managed just over three hours sleep in the end.  The spasms twisted my leg into positions that resulted in multiple subluxations, and my nerves flaring meant that I could not bare the touch of clothing, the mattress beneath me, or a duvet. It’s hard to explain to someone this type of pain, at the point of time I would have jumped at the opportunity to have the nerves severed. To be honest, even right now at this time of writing when the pain is slightly reduced but still horrific I would beg for it to be done. Let me put in perspective for you,  full blown labour is easier to deal with.

Image result for mcgill pain index

Whilst the pain is improved today I am still struggling. I feel as if someone has sliced my leg open multiple times from my thigh down to my soles and has rubbed vinegar into the wounds. The constant spasm in my thigh has left me exhausted and desperate for a relief that seems as if it will never appear.

I know that in a few days time in all likelihood I will be back down to my usual levels of pain and spasms, but there is a niggling fear at the back of my mind that it won’t reduce further. That fear is more terrifying to me than anything.

What Next?

Three years ago I announced to you all that I was off to Oxford Brookes University to commence my studies in BA Publishing Media. It was an unexpected decision.  I had attended an open day as a prospective student with the mindset of applying for the 2016 intake; a chat with one of the lecturers about my writing and editing experience and I had a place for the 2015 intake. It was out of the blue, a whirlwind of excitement and fear, yet exactly what I needed.

The past three years have been full of highs and lows. I’ve had multiple conditions diagnosed and added to my ever growing list, I spent the better part of my second year studying from my hospital bed, my debut novel was published in the middle of my studies, and whilst in my third year my wonderful son accompanied me to the majority of my lectures. I had the support of the uni through every moment, they celebrated my successes and they raised me up in my lowest moments. I can’t quite wrap my head around the fact that it has now come to a close.

Yesterday, 19th June 2018, I graduated with a 2:1 with honours in BA Publishing Media. Receiving my degree was a moment that at many points over the last three years I doubted very much that I would ever reach. Yet I did it. I conquered every challenge thrown my way.

So what’s next for me? Well my first children’s book, Cheeky Dragons, is currently in the editing process after being signed to Nightingale, I’m working on the prequel and Sequel to Regan Snatcher of Souls, and finally several months ago I opened my own publishing house Little Goblin’s Books focusing on children’s picture books and young adult titles. My company, and my writing projects are keeping me busy and I’m thoroughly enjoying  them. The idea of pursuing my Masters’ degree in Publishing is one that very much appeals to me, but for now a little break from essays is very much welcome.

 

New Beginnings

At the start of May my degree came to its close. After three years living in Oxfordshire it was time to start making new plans for the future; which is why on the 11th of May we packed up and moved to St. Helens, Merseyside. It’s a long way from my family which is hard but we are surrounded by my in-laws who I love dearly.

33097324_1562904053835368_8220910331912781824_o

Happy in our new home

Getting to know a new area and work out the most disability friendly routes to places is tiring but so far I am feeling very settled and happy in my new environment. I’m now several hours away from my neurologist which is less than ideal but he has agreed that I can remain on his treatment lists. Whilst moving to a new neuro more local would be easier I don’t feel comfortable leaving his care as he has been my rock for the last six years.

I’m having a couple issues with my jaw spasms and the osteoarthritis at the minute but overall I’m coping well. I’ve introduced a new herbal supplement to see if it helps with pain relief and will be reviewing this soon.

Wonky But Happy

“Hmmm that’ a nasty dislocation to have long term, take some morphine.”

“When you next see your neurologist, if I were you I would discuss having your botox more regularly. This degree of deviation, pain and dislocation on a regular basis is not good for you.”

“Wow. Ehlers-Danlos, and Dystonia. You couldn’t have asked for a worse combination of conditions there.”

“Are you sure you don’t want to go the hospital? I’m sure the A&E department will listen to you this time. I’ll even write you a note.”

These four word-for-word quotes from different health professionals give you an insight into the last week and a half of my life. My botox has worn off a couple of weeks ahead of schedule around my jaw, the rest is still working well, so overall I’m pretty happy. However this does mean I’ve been experiencing regular extreme spasms and dislocations in my jaw again, which in turn has an impact on my ability to talk, eat and drink.

Whilst my ability to communicate using British Sign Language is steadily improving, I took a trip to the doctors to get a prescription for some painkillers and muscle relaxants, as I’d like to eat, drink and talk in as little pain as possible. Whilst I have access to oramorph this is my last resort medication, and not something I am willing to take around my son unless it is an emergency. The doctor couldn’t quite believe the predicament I was in, let alone get his head around the fact that I did not fancy sitting for a couple of hours in my local A&E at a hospital that has repeatedly provided the wrong treatment despite direct instruction from my neurologist. I stated to him that as I don’t respond to local anaesthetic I would much rather take the painkillers and muscle relaxants at home and relocate my jaw myself when the spasm eased off. At this point I think he would have dragged me to the hospital if he could have.

We discussed at length (well I scribbled out for him what I was attempting to convey) my botox arrangement with my neurologist. It stunned him that I was willing to put up with these spasms for a further two and a half weeks. The moment was an odd one, with me not really in a great place with my distorted face, twisted neck and dislocated jaw to protest that actually I was doing great, but then he didn’t know me six years ago when I was bed bound, he didn’t even know me a week beforehand when my botox was working well, so I can see where his concern comes from.

At the time the above four quotes drove me nutty. But I know I’m easily wound up when in pain, so I can’t say that I am surprised. In reflection, whilst my jaw still is causing me significant pain from my current dislocation I can see my progress in pain management and self-care; which is an element I am proud to have improved on.

ips.jpg

February Update

I’m truly ashamed of how long it’s been since I last posted on here, that one blog post a week goal went out the window! But I’m still here ticking along desperately trying to find a moment in the day to sit down and share with you all where I’m at. The joy of being in my final 9 weeks of university, along with having a 9 month old baby & another book to write however means I really don’t seem to have enough hours in the day anymore and unfortunately regular updates have had to be postponed. I do intended to get back to a weekly format asap.

So what’s going on with me?

My Dystonia alien is being regularly forced into submission thanks to good old Dysport injections. I’m currently exploring how different exercises can be used to help in the management of the condition so please feel free to contact me with any articles you recommend or if you want to share what’s worked for you.

My optic neuritis has finally improved and I am waiting to see my lovely neurologist in April to discuss the results of a new MRI and Evoked Visual Potential tests. I’m hoping for the usual “nothing obvious to see, but we expect that with Dystonia” response.

My Tourette’s like symptoms have been slightly more prominent lately and I would love to hear from any spoonies with this/symptoms similar to this. The word ‘lemons’ escapes me far more often than I care for in a day and whilst this is manageable I’d still like to hear from others about any ways of calming it. Naturally this will be another little chat with the neurologist in april.

I’d like to take a quick moment to thank the many people who emailed me their thoughts/prayers etc after I shared my diagnosis of postnatal depression the other month. My PND I feel was the result of extremely poor and traumatic antenatal care*, after several hard months I feel like I am turning a corner. I cannot express enough how much hearing from so many of you who wished to share with me how you navigated PND helped me to feel less alone during a time where my emotions and anxiety where crippling me. Thank-you.

*Some elements of my antenatal care were perfectly fine however overall without going into detail it was a traumatic experience which need not of been so. Complaints were logged with the trust at the time.

Here we go again

I don’t even know where to begin. My head is all over the place and honestly I feel more than a little bit miffed with my body. Here we are at the start of another year and I’m already waiting tests results for yet another diagnosis. Yup you read that right ANOTHER diagnosis, not an alternative or differential diagnosis but another brand spanking in all its inconvenient glory. In 4 to 8 weeks I’ll have my answer and until then I am meant to carry on as normal.

Usually that’s doable but right now I feel pretty defeated. I know this feeling will pass and that I will cope just like I always do however what I am currently experiencing is consuming, depressing and suffocating.

So here we go again. Distraction techniques in full swing and disney soundtrack blasting.

Body Meet Osteoarthritis

This week I found myself sitting in the preop clinic of a knee replacement clinic. On my arrival it didn’t take long to piece together where I was, and even less time to start panicking as to why I was there considering I was expecting to see the Orthotic department not the surgical team.

The Dr I’d been assigned was lovely and surprisingly familiar with the majority of my conditions. I was pleasantly taken aback to discover that they had scheduled all the xrays and scans into the appointment time slot, so I was carted off down to X Ray where my knees, hips and ankles were x-rayed from multiple angles (so far I’ve just had the results for my knees). Having these pictures taken took quite awhile as trying to get my knees and and toes all pointing in the right direction is a rather impossible task. I got the impression the radiographers were not used to my host of conditions as my uncompromising feet proved quite the problem, and by manipulating them into a forewards position my knees subluxed!

So far the x-rays have revealed that I have Osteoarthritis in my knees and that really I need new knees, however due to my EDS that surgery is extremely unlikely to provide any long term relief so my surgeon wants to delay it for as long as possible. So for now the plan is to try to shift as much weight as I can to ease the pressure on my joints and delay the surgery. Whilst the diagnosis is disappointing it explains the pain I’ve been in for the last few years. I’m just keeping my finger crossed the x-rays won’t show it in my hips and ankles too.

Before I sign off, Spoonies it’s cold outside! Please if you find you are affected by the cold spend that extra spoon wrapping up warm or having a longer bath. Practice self care. This time of year can be hard, I know I’m suffering, so be kind to yourselves.

Image result for spoonies its cold outside

Brief Update

I’ve been appalling at keeping up to date with my blog recently, a big apology to you all, posts will be back to normal soon. The last month or so has been crazy busy between flare ups, coursework and the launch of my debut novel. I feel like I haven’t stopped but I am enjoying the whirlwind.

I’ve been in and out of the hospital rather a lot over recent weeks to another bout of Optic Neuritis. As I have mentioned previously my local hospital is not ideal when it comes to dealing with complications. They have somehow managed to lose all my test results from last year, both paper and electronic copies, so I am waiting for my neuro to take over management of my investigations to see if anyone can shed some light on why I keep having repeated Optic Neuritis.

Coming up to 5 weeks ago now after watching a documentary called What The Health, my partner and I made the decision to switch to a vegan lifestyle. I was skeptial at first but am thrilled to find I am benefiting from it. I have more energy in the day, am taking almost half the amount of pain killers and overall feel more positive in my mental health. It’s been an amazing change and one we have decided to stick. I would love to hear from anyone else who has gone Vegan to improve their health!

Finally a huge thank you to all of you who emailed/commented/texted querying when my novel would be available to purchase, it meant a lot. Currently it is available through Amazon, Waterstones, Browns Books For Students, Foyles, and  Barnes & Noble. I hope you enjoy reading it.

I will be going back to blogging once a week so please keep your eyes peeled.

 

Mental Health awareness day was last week and I wanted to write this blog post then but honestly it was too hard. My mental health right now is not great. I’m by no means awful but it’s not where I’d like it to be. It’s been an accumulation of being chronically ill for numerous years and stressful life events adding on top of that.

Image result for mental health

A major part of the problem right now is my medication. One of the many side effects that many of my medications can cause is anxiety and depression. Whilst I wouldn’t class myself as depressed, I am aware that my anxiety and amount of pain attacks have increased recently and I’m defiantly on the weepy side. However life events haven’t helped either, Just last week I went to collect my little boys prescription from the chemist and found myself being motioned to sit silently on the floor with him due to a lady with a knife ransacking the place; this understandably has made me anxious about leaving the flat on my own, even though I know that I am being irrational as I know that the chances of being in that situation again are very small.

Yesterday I attended the emergency eye clinic at my local hospital and was informed that I have my fourth bout of optic neuritis is a year and a half. Due to this and some more symptoms they have made the decision to refer me to a specialist neuro and carry out testing again for multiple sclerosis; another spanner in the works.

Between my physical & mental health plus the stress of uni work, I feel like I need to let myself have a good cry, pick myself up and carry on except there isn’t time to cry. Don’t get me wrong I love my life but I’m finding it hard to know what to do to help myself. I force myself to do what scares me like leave the flat but it’s draining working up the courage to do so. I would talk to the doctor about it but I daren’t risk it as I know they will stop my painkillers if they start worrying about depression which I need for my seizures. I have ordered myself a mindful mediation manual and CD and hoping that a holistic attitude will help.

Tag Cloud