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 Archive, February 2020

Rare Disease Day 2020

When I met my partner Damon back in 2016 I was upfront about the fact that I had a whole host of chronic conditions some of which would deteriorate as I aged. It was a subject that I broached on our first date, romantic I know, but it was important to me that he knew life with me would not be an easy one; our first date lasted five hours. What was meant to be coffee, turned into a museum trip, and hours spent talking on a bench overlooking the River Cherwell. At the time my Dystonia was my most limiting condition. The EDS was annoying and had its fair share of debilitating moments but in comparison was easy enough to deal with.

However over the years with a good combination of medication and very regular Botox injections my Dystonia is often far more controlled, yet my EDS has spiralled dramatically so. My jaw which takes the brunt of both conditions is in need of replacement yet both conditions make replacement not necessarily the easiest call for my surgical team; it’s an ongoing argument. My knees are in a similar state. They too need replaced. They currently sublex at 0 and 30 degrees constantly yet bracing doesn’t seem to work due to the change in position with each time the knees come out of place. I frequently joke that I’m falling apart and honestly it feels that way.

The latest part of me to be affected is my hearing. My hearing tests have showed that im hearing impaired and im awaiting further appointments on the next steps to see what aids will help me. Whilst my hearing being affected isn’t overly surprising, it wasn’t something at 27 I expected to be told. However after almost a year of struggling I knew it was time to give in and get some help.

If you look at me you could be forgiven for not realising anything was wrong. Which is one of the reasons Rare Disease Day is so important. Disabilities come in all variations and I for one never look the same one day to the next.

I always say no hospital untill I’m unconcious.
Posted in Archive, December 2017

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