Posted in Archive, January 2021

The Test Results Are In

After spending the last several months in and out of hospital, losing the sight in my eye for an extended period of time and only partially regaining it, losing all sensation in my right leg and experiencing sensory issues in my arms I was once again told it looked like I had MS. Yet the examinations didn’t agree. I was left battling for help as different hospitals and departments seemed to find it impossible to communicate with each other. Well the most recent test results are in! We finally have an answer.

If I am honest I had almost given up on a diagnosis other than unknown complex neurology condition with global sensory loss. None of my Drs were communicating with each other, no one could agree with each other and that was resulting in me receiving no treatment. It has been a period of high stress and extreme emotion.

Today I finally had my Emergency Video Consultation  with the local specialist in Neurology; this was requested back in October. Firstly they are agreed it isn’t MS which is great confirmation. What they are sure of is that is another part of my Ehlers-Danlos Syndrome. Apprerently when I’m dislocating my knees the nerves around it are being over stretched and damaged hence the loss in sensation/function. The same thing had happened to my elbows causing the sensation I was getting in my lower arms and hands. This surprised me greatly; mainly as I had in fact asked the doctors this very question when I was on the ward last year and they laughed at me for suggesting it. In regards to my eyes the nerves are not communicating with my brain effectively, but are not damaged like you get in MS.

He’s suggested we get me booked in with my EDS consultant for some advice in the meantime on how to cope with these symptoms as they can last a significant amount of time.

So whilst the EDS is generally on a slippery slope currently and it’s all about managing it, keeping on top of my pain and being proactive, I feel that overall it was a very positive chat.

Posted in Archive, January 2021

Improving Routine To Improve Pain Levels

Health conditions can have both a physical and emotional toll, for example chronic pain; this can impact your sleep, cause more fatigue and leaves you starting the day just as drained as when you went to bed. A routine can change all that.

Now I’m not suggesting you plan out every moment of your day!

However a well thought through routine can empower your day, lowering your pain levels over all as you’ve optimised the way you have used your body.

It’s worth asking yourself when is your pain worse in the day? What activities does that impact? Make a list. From here you can proactively look at your routine and adjust how you manage your day which in turn should lower your pain levels. An example of this is if you struggle more in the mornings, then lay out what you need (or ask someone to help you) in an accessible place. This will save you time and energy in the morning.

Make sure to include time for you in your routine and space out energy consuming tasks over the day. If there is a task you are particular struggling with think about how it can be altered. For example, when chopping vegetables does sitting on a stool help? Would buying pre-chopped vegetables be a more realistic option? Is there someone else who could do this task for you?

Doing to much will result in a Boom and Bust cycle. Pacing is your friend.

I’ll be live tomorrow night with more on the Boom Bust Cycle.

Posted in Archive, January 2021

Adjusting to The Impact of Lockdown on Pacing

I’m sat on my settee staring up at the stairs and I know there is no way I am making it up them tonight. Pacing. It wasn’t even a wild day in the McDowall Tunstall house, yet, here I am, fairly sure that I will not be trying to crawl, or bum bump my way up to bed; not when there’s a comfy alternative already made up here with a lot of blankets, courtesy of a kidney infection, why waste so much energy. Now I bet your thinking what crazy think has she done today to end up not knowing how to get to bed?!

Well for once I actually behaved! Instead I’m pinning the blame on good old lockdown number three. Previously when the UK went into National Lockdown’s Stefan hadn’t actually started school, so we weren’t affected by it, thankfully. This time however, he has to take part in Live Home Learning sessions, and most also get homework finished and emailed into school in between session one and two!

Now to make it an easier adjustment for the children (mainly Stefan) they’ve got a devised timetable for the week, all built around the school day, filled with Live learning, Joe Wicks, crafts, freeplay, our one hour allowed outside time, story time, music etc. This has gone down a hit with the kids, they are happier, calmer, listening better and over all it’s much a more positive day.

Here’s where I got it wrong.

You knew it was coming didn’t you?

I remembered to factor in breaks, such as snack time for them. What I didn’t think to was put blocks on their chart saying Mummy recovery time. Which I need. For example, after Joe Wicks, if they are spending 10 minutes watching AlphaBlocks or Magic hands while having a drink and cool down, I can sit with a heat pack behind my back, a pillow under my knees and just allow my body to breath, rest and recover enough for round two.

It is no surprise to me that readjustments needed to be made. Normality is a shadow of what it used to be, and providing a new normal whilst living within four walls is hard and exhausting. This is why we pace. Today I aimed for fun and hit the milky way galaxy, hence spasms, dislocations and extreme fatigue. Adjusting to pacing in lockdown is hard but it’s something that with time we will learn; hopefully sooner rather than later. I’ve learned a lot. I’ll tone it down tomorrow. This lockdown is a beast that throws unwelcome hurdles when we sort of expect it (thank-you newspaper leaks), and we just have to keep on adapting.

Posted in Archive, January 2021

Lockdown, Homeschooling and Work

With the introduction of the new lockdown I had had been planning on getting crafty with the kids again. That idea was snuffed out after an email landed in my email box confirming that nursery would be doing live home lessons followed by tasks to be completed, photographed and emailed to his teachers. All well and good except my partner works shifts and I have an 18 month old whose favourite word is no, also takes no as a yes and will most deffinently try to touch every key on my laptop.

So today was the first home school lesson. After half an hour of technical wrestleling we finally got on to Teams and were met by a chorus of STEFAN. The children were happily mucking around with each other, my daughter was desperately trying to join in and the teacher? Her laptop had the same issues mine had to start with and never made it to the lesson. Round two tomorrow!

Dystonia and Me Holistic Health Coaching is officially up and running which has added a lovely touch to my evenings. I have been thoroughly enjoying chatting with different people with a range of issues and starting them on their journeys with me.

Colourful heart enlarging in further colours being touched by a human figure in blues and purples

I would love to hear if any has had the vaccine yet? From the calculator I predict mine to be late Feb to March at the current injection rates and would be interested to hear your experience in the comments. I personally will be accepting the offer of the jab, I just would like to go in to it eyes open to side effects.

Posted in Archive, January 2021

Return To The Gym

After a lot of discussions with my family and my medical team we decided that it was finally time for my return to the gym. I have not been since my battle with sepsis in January 2020. However if we are being honest there was no way I could have have returned in 2020; I spent a long period bed ridden, my Ehlers-Danlos syndrome progressively worsened and that’s before we factor in Covid. My 2020 health spiral ended with unexpected weight gain of almost two stone in a month. Considering I live on 1, 200kcl a day that comes from perscriped ensure juices, the sudden and extreme gain is disconcerting.

Now while my GP is investigating causes into the gain, I’m also taking a practical approach. I used to have a fair level of fitness and enjoyed going to the gym. Whilst it left me shattered afterwards and with sore joints, I also found I benefited with less extreme spasms after. Today’s reintroduction was a gentle session for the most part, testing what my bodies current capabilities are; I chose a recumbent bike session followed by different weight lifting machines.

First time back in the gym

I certainly don’t feel as energetic as I did this morning; far from it. I’m completely out of spoons and sore. However I am chuffed with how well the session went and am looking forward to the next one.

No spoons

Posted in Archive, January 2021

Hormones and Chronic illness

Hormones, they hit us out of the blue in puberty and never stop showing up no matter how much we hope they may just skip a month. Even before my diagnosis of Dystonia my monthly visits from the witch were awful.

During my teen years my periods were unpredictable; sometimes not showing up for months and sometime arriving every two weeks. They would leave me doubled over the toilet in the night throwing up from the cramps, and going through a pad in under an hour over and over again. I spent years visiting my then GP who told me all this was normal and that I needed to learn to deal with these symptoms. It was only then when I was studying for my midwifery course that I had the courage to go to a new gp who recognised my distress and referred me to gyny. One operation later and I was diagnosed with Endometriosis.

Quote from Camran Nrzhat, ND.

Now my periods are worse than before and on average last 72 days. Yes you read that right. They last 72 days. Now normally they’d treat with a hormonal contraception to stop the period. Here’s where my health comes into play. My spasms, now I don’t know whether this is my Dystonia or EDS, but I can’t use any intrauterine device as the spasms physically reject it from my body which is fairly uncomfortable. The pill*/patch/injection all work on giving you progesterone however I am unfortunately one of those rare Ehlers Danlos suffers who can not tolerate this. The increase causes a dramatic increase in dislocations body wide.

*I am aware there are pills that are not just progesterone based however due to the fact I get daily migranes with aura I cannot take these as it increases my stroke risk.

Between the prolonged bleeding which leaves me severely anaemic (currently 3.1), the increase in spasms, dislocations, fatigue, it’s fair to say hormones really screw me over. So gentle hugs to all who also experience this. Remember chocolate always helps!

Posted in January 2021, Archive

Welcome to 2021

2021 has arrived! We rang the new year in a quiet manner, a nice drink, a dislocated thumb and an early night after realising we were out of bandages (and spasms were forcing my thumb to remain out). I hope all of you had a lovely NYE and are healthy and safe at the start of this new year.

So what does 2021 hold in store for me?

As you may know from my facebook page I have set up my own holistic health coaching business which is designed to help people who are disabled/dealing with invisible illnesses. Holistic Health coaching is a partnership that will empower them, pin point problematic areas and find realistic tools to help improve quality of life, improve pain management, mental health wellbeing, and more.

Business logo. Purple background with line drawing hand palm up open with branch and stars. Words saying Dystonia & Me Holistic Health Coach.
Dystonia & Me Holistic Health Coach

Enabling others to improve their quality of life is a passion of mine. My own struggles in that area, along with fighting for help with mental health, pacing advice and more stuck me as how much holistic health coaches are needed. I know that I could have benefited greatly from one in the beginning. I look forward now to helping others, for anyone interested you can contact me here https://www.facebook.com/DystoniaandMeCoaching/

Posted in Archive, December 2020

Let’s Bin Perfection.

What is perfection? It’s a word that we toss around like it weighs not a thing, when the reality is that’s a ball and chain dragging our mental health through the mud chasing after. I’m sure my own view of perfection is mighty different to yours! If it wasn’t then it would be a case of bottling up a potion or creating a word doc telling you what steps to follow to achieve perfection and selling it for a killing; I’d be able to have my own purpose built bungalow. No it’s different to all of us yet we all seek it.

It’s the little negative moments experienced that make us seek it. It’s the old man tutting and shaking his head repededly at me because he couldn’t push past my wheelchair easily. It’s the side eye and the sarcastic comments that are made by people who don’t understand ambulatory wheelchair users exist. It’s dislocating 15 times in one day and just having enough. It’s all these things and so much more that make us want to chase perfection.

The fog of insecurity in our brains full of thoughts like if I just weighed less, if I wasn’t chronically ill, if I wasn’t in my chair, if I was more like them; it’s all based on the negative moments and turned into insecurity and self doubt. It’s a weight that no one needs.

But chasing perfection is futile. It’s an unachievable concept. It’s time we move away from it. On that note can we bin chasing normal as well? Learn to love ourselves the way we are. Life would be boring if we were all the same. I know I would rather be my unique self than identical to every other person.

Posted in Archive, December 2020

Genes and Dystonia

Following on from yesterday’s Facebook live where we touched briefly on genetic causes of Dystonia, I wanted to delve into this a little more. DYT1 gene is the cause of some cases of early onset Dystonia and seems to be the one people are aware of. However there is a number of other genes that can cause Dystonia. Knowing whether it is a genetic cause is worth investigating as treatment can differ. For example I have the GCH1 gene which is the cause of Dopa Responsive Dystonia. I’ve lived with my symptoms for eight years and only recently found this out. I’m now awaiting to start on the appropriate medication for this particular type of Dystonia.

Taken from http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0004-282X2015000400350#:~:text=DYT6%20dystonia%20has%20an%20autosomal,no%20sex%20differences%20identified9.

Being diagnosed with Dystonia for the majority of people is a long road, and more complicated still if you don’t know the medical history of your parents, grandparents etc. I haven’t had contact with my father for years but I know from my mum that he had hand tremors and was often called shakey. Now this could be caused by anything and that’s important to remember but based on the fact that my hands also spasm and tremor it’s a significant point.

When I was on the initial road chasing for a diagnosis only one doctor recommended genetic testing and this was never followed up on. I then spent years fighting against the label of functional Dystonia, which seemed to being applied purely based on my previous traumas. It became a frequent sticking point, one in which I often pointed out that fighting for treatment and belief was by far more traumatic at the time than issues I’d already worked through with therapists.

It was only after resorting to private genetic testing that we discovered that I had a genetic cause; I’d been blaming it on a horse riding accident for years purely because my neck spasms started shortly afterwards.

So does having a genetic cause change anything? Yes! Some types of Dystonia are far more likely to respond to Deep Brain stimulation, while others respond to specific medications better.

It is important to remember however that not all Dystonia causing genes are known yet. This is one of the reasons family history is so important. I only went digging into my genes after my maxfax surgon mentioned that their appears to be a link between Ehlers-Danlos Syndrome and Dopa Responsive Dystonia.

Other causes can be medication induced (tardive dyskinesia), brain injury, as a symptom of another condition etc. If you have concerns over the root cause of your condition please speak to your neurology team.

Posted in Archive, December 2020

Chronic Aspiration

Today I had a meeting with speech and language to assess my ongoing difficulties with swallowing. Some days the issues fade into the background and are not to much of a problem, other times I struggle to swallow anything which has previously resulted in over a week in the hospital on IV fluids and having a temporary NG tube placed. I had no idea what to expect from the appointment as I’ve not met with speech and language before.

She came to my house, and was immediately met with Stefan and Evie talking a thousand miles a minute, both very curious over her PPE. We discussed my symptoms and long medication list and then she got down to examining me. She had a feel of my throat whilst I drank an ensure and picked up my usual spasms. While we were talking I was doing my usual post meal coughing, something that’s mild enough that I don’t really notice it, nor was I aware that my voice then became hoarse something my partner brought up.

The speech and language therapist explained what was happening was due to my spasms that I was aspirating during my meals. She’s arranging a barium swallow so they can get a look at the extent that this is happening. It also explains why I keep getting such bad chest infections; the last one left me needing two rounds of antibiotics and a course of steroids.

She mentioned the possibility of a PEG tube again, something that’s been circled around for a while, as well as refferal back to the dietitian. This will hopefully be after the barium swallow has been conducted as this should show what consistency of liquid will be best for me.

I’m feeling quite positive about it all after today’s meeting and will be hearing from her again in four week for an update.