Posted in Archive, covid-19, february 2021

Covid-19 Vaccine with Chronic Conditions

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Covid-19 Vaccines have been rolling out for several weeks now. I am fortunate enough to have had my first vaccine, Pfizer, administered last Saturday. The uptake the vaccines for Covid-19 has been fantastic to see. However I am aware from the questions that have popped up on my facebook page, and private messages that there some concerns out there on how safe these injections are for people with chronic health conditions. A worry I completely understand. I have a history of anaphylaxis myself to certain foods, and a have had psychotic reaction to two different medications previously, it has left me very wary of trying any medication that I’ve not previously had. But I’d much rather trust in the figures that say its going to be ok, than risk catching Covid-19. I’ve put together information gathered from a few of the charities/societies that this represent the conditions this blog covers, in the hope that it will provide those of you who want some information with what you need, and reliable resources to turn to (all the sections are hyperlinked so you can link through to them).

Covid-19 Vaccines| Dystonia UK

Dystonia UK put the safety of the vaccinations to their three medical advisors, all three agreed that it was safe for Dystonia patients to receive (including those receiving botox injections). It was suggested that if you have not already heard from your dr/gp in regards to your vaccination appointment and your breathing is affected by your Dystonia then it may be worth chasing this up.

Covid-19 Vaccines| Ehlers-Danlos Society

For those with Ehlers-Danlos who are wanting to talk to their Dr I recommend going to the Ehlers-Danlos Society website where there is a link for advice for clinicians on the matter. The site currently states that they are note aware of any studies that have specifically examined EDS or HSD with covid-19 injections. However those who have chronic conditions that could be made worse if they were to develop covid (including potentially Long Covid) the benefits of protection from the vaccine outweighs the risks associated with the infection on vaccination side effects.

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Covid-19| PoTSUK

For those of you with PoTs/Autonomic Dysfunction/MCAS who are specifically interested in the vaccines ingrediants list then click here. This will take you to the PoTS UK page dedicated to information on Covid-19 vaccine info, where you can find a full ingrediants list for both the Pfizer and Oxford injection.

The recommendation that PoTS UK are giving so far is that for PoTs patients, if your condition is uncomplicated then it is not a contraindication for the vaccine. If you have MCAS and experience very severe allergies, you need to discuss whether you are suitable for the vaccine with your allergy specialist.

Further information can be found on the link given above.

Personal Experience

I had my Pfizer vaccine jab 7 days ago. I was invited to book after being deemed extremely clinically vulnerable throughout the pandemic. The set up was simple, our local rugby stadium has been converted into a vaccination centre. Volunteers split us up as people arrived, those who were there via the mass vaccination scheme to one room, those for the GPs vaccination, like myself, into another. After confirming who I was, and being given some literature to read through on the jab for afterwards, it was done. Personally found it less painful than the flu jab, and far less painful than botox injections! It was then off for a 15 min sit in a chair to ensure that there were no unwanted side effects before being allowed to leave.

Side effects wise they have not been to bad, my arm has been a bit achy and I felt very low energy for maybe 36 hours. Quite similar, but not as bad, as to how I react to the flu jab. The provided information leaflet, did warn that the second jab could provide slightly more side effects, however I’ll take a couple days side effects any day in exchange for proctection.

Overall nothing to be concerned about. Relatively quick, very easy, fairly painless.

Posted in Archive, October 2020

New Found Independence

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After discovering recently the wait to be assessed in my area for an electric wheelchair was likely to be several months if not more, we decided to explore what other options were out there. My happy accident after days of searching and getting to the point of really feeling like I was just going to have to accept that I was essentially mainly house bound at the moment, I stumbled across National Mobility Hire, which I have until April 2021; hopefully by then I will have had my assessment but that’s about the current wait time. I only wish I had found them sooner. This morning they dropped my electric wheelchair off and it’s as if they gave me the key to life back.

As soon as Damon had got home from work we set off out with the kids to test drive the chair. It was a complete and utter dream, to be in control was empowering and so uplifting. It gave me such a boost. Since loosing the use of my leg I’ve been unable to take my son to school, such a basic task every parent does and it has devastated me. We weren’t entitled to help from the council as he’s not compulsory school age, my partners hours change every other week so he couldn’t take him, and Covid-19 has limited our options for help as we live in a Tier 3 area. Honestly with each week that was going past it was harder to figure out; this chair completely changes that, it enables me to get him there and back again. Knowing I can do this myself again brought me so much joy.

Posted in Archive, February 2020

An Anxious But Honest Return

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This morning I was on the phone to my mum when she brought up the fact I hadn’t blogged in a long time. I am rather good at finding excuses for why; too tired, too busy with the kids, don’t know what to say. But none of those are completely true. So bless her, I rambled for quite a while as to the reasons why.

Firstly Ableism. Honestly I’m mad for allowing myself to be beat down enough to feel I didn’t deserve a voice as an activist for people with Dystonia and other invisible illnesses anymore. Up until the last several months I had been having a relatively stable patch which I had been making the most of, and for that simple reason I felt I wasn’t ‘sick’ enough to do this anymore. Which is frankly ridiculous. I have several conditions all of which are chronic, a couple that will continue to deteriorate as I age. My good spells generally never last longer than a Botox cycle, yet because I don’t fit into a nice stereotypical tick box of what disability should look like I felt like I couldn’t blog. I expect myself to be able to do everything that a healthy person can do, because that it is what people, I feel, expect of me from many not so subtle comments for example lose weight your joints won’t hurt as much.

Secondly, was my depression and anxiety. The anxiety and paranoia I experience partially stem from post natal depression but are largely side effects of my medication. I feared hugely that holding my hands up and saying ‘Hey, I’m trying my best but I’m struggling like crazy, I’m terrified by the deterioration I am currently experiencing in my body and I don’t know to do’ that my doctor’s would somehow read this and decide to withdraw the medication that is so vital to me and pack me off for yet more counciling. That may seem ridiculously paranoid to read but when you’ve lived years of doctors gaslighting you, undermining your very real physical symptoms, skirting around the subject of mental health is now habit (though I am on antidepressants now).

I hope that clears things up. I want to blog here more. It helps to write it down and connect with others in the same situation.


So here’s a very late Happy New Year.

Posted in Archive, Feb 2019

Three Becomes Four

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As some of you may already be aware of from my other social media channels, we are delighted to announce that we are expecting our second child this summer. I had many concerns at the start of my pregnancy due to my previous poor experience in having my health insufficiently managed whilst I was pregnant with my son. This naturally left me with many worries as it was not an experience that I wish to repeat. My current GP is incredibly supportive and refreshingly up-to-date with his knowledge on my mix of conditions which has meant that so far *touch wood* although the pregnancy is complicated it has gone much smoother than we had expected.

I decided to take a few steps back from my blog in the beginning months. My health was really not great and whilst normally I would process how this was impacting me by writing about my experience here I didn’t want to blog about the pregnancy until we were past the halfway point; nor did I want to write half stories. Over the next few weeks, I’ll be posting blogs reflecting on the different things I experienced in this time. I’ll be touching on being your own advocate to doctors, the emotional trauma/impact of going through surgery without anesthesia or pain relief, and acceptance when doctors tell you your the worse case they’ve seen but there’s nothing more they can do for you. The last few months have been easier than my first pregnancy yet extremely hard in their own way.

I’m currently awaiting the results of further testing as once again my cardiac problems have reared their ugly head. I spend most days with a resting heart rate of 130+. It’s uncomfortable, to put it mildly. We recently discovered that the type of EDS I was originally diagnosed with was incorrect and that I actually have Classical Ehlers-Danlos Syndrome which may explain my current cardiac complications. I have a few more tests to go before we know more.

This has been a very quick overview of the last few months which I apologize for, but there’s a whole series of posts coming soon.

Posted in Archive, November 2018, September

Zebra or a Horse?

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When you hear hoofbeats its’ time to take pause,
Remember your training it’s not a Zebra but a Horse,
Go on throw diagnostic criteria’s out the door,
Something much simpler is bound to be the cause.

Patient not quite fitting those tick boxes on the chart?
Have you ensured you’ve torn their mental health apart?
Depression, trauma, maybe be a life stressor or two,
Cancel their painkillers and make sure to push through,
A psychiatrist referral to review them a new.

Yet your patient sits there and loudly declares,
“I’m a Zebra, I’m striped and Lord knows I’m rare,
I’m dislocated, spasming, and bruised black and blue,
Please don’t be yet another Dr that lets me fall through”.

You can stop my medication and hang me out to dry,
Or perhaps just this once you could choose not to turn a blind eye,
My connective tissue is failing and my body’s been wrung through,
My brain sends faulty signals, and I don’t know what to do,

Dystonia, EDS, CRPS, I all but shout,
Should your really ignore the fact my joints are hanging out?
Or what about the psych assessment that states beyond a doubt,
‘Her issues are organic you should promptly check them out’.

It’s become clear that your training needs a change of course
Try “When you hear hoofbeats it could be a Zebra or a Horse”.

Authored by R. McDowall, 2018.

Posted in Archive, September 2017

5th Blog Birthday

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Happy Birthday Dystonia and Me!

Can you believe it’s been 5 years of blogging already? I can’t quite wrap my head around how quickly this has come around. It feels like just last week, I searched for a webhost desperate to spread awareness of Dystonia after feeling like I was floundering in a sea of uncertainty with little resources to pursue in my quest for answers. Now I confidently tackle my condition head on and happily refer people to resources  I have come  to know and trust.

When I started blogging it was completely in the mindset that it would be purely to raise awareness. Over the last 5 years this has evolved to be a space where I can openly and honestly express myself without fear, safe in the knowledge that someone out in the vast vacuum of the web will be able to relate to what I am going through. My blog has become a site for awareness, expression and connection; I cannot get over how many online friends  I have made. Whilst I am sad that so many of you have to live with this life altering condition, I am thankful for each one of you that has become a vital part of my day to day support network.

Over the last few years this blog has been nominated on several occasions for awards, won one, and even become a resource that several neurologists hand out when diagnosing new patients (this still flatters, astounds and thrills me). I’ve had other sufferers pounce on me with hugs and their stories at hospitals; I love this, it shows me that I am doing something right.

Just a few years ago, reaching this milestone seemed ridiculous. I didn’t know how to live each day let alone 5 years with this hideous condition. Now, several diagnoses later, I have learned to find joy and laughter in my spasms, to treasure every moment that puts a smile on my face and be thankful that drs like my neurologist exist, for without my neuro my world would be darker (literally). So instead of being disheartened that 5 years on I’m still battling, I’m lifting my chin, defying my alien and celebrating each little success.

Here’s to another 5 years.

Posted in Archive, September 2017

New Adventure

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As many of you may remember in the summer of 2016 I attempted having a little part time job, this backfired on me when my employer refused to make reasonable adjustments and my body went into an extreme flair up.  At the time this wasn’t too bad, but it did leave me pondering as to what I realistically could do.  In February this year I moved in with my wonderful partner, now as you may or may not know such a milestone negatively affects benefits.  I’d been on ESA for quite a while, but moving in with Dame left me £400 worse off each month. The government’s current system presumes that your partner can A) earn enough to be able to afford to be the sole provider B) Is happy to financially support you.

A £400 drop in my income was quite significant as you can imagine.  So I’ve been wracking my brains as to what work I could do that wouldn’t leave me spasming and seizing in a hospital bed. I’d heard about Younique, a high quality skin care and makeup company that would allow me to set my own hours and work from home. In all honesty I thought it was to good to be true, but this week I took the plunge and messaged a fellow spoonie to get her take on the business. She spoke extremely highly of it, and knowing that someone in a similar health situation to me could make it work gave me home.

So here I am now. Today is the start of my 10 day online launch party, and I’m feeling incredibly excited by this opportunity. If you’d like to see what I’m doing then click on over to https://www.facebook.com/smilesparkleglow/. Fingers crossed that this adventure will be just what I need.

Posted in Archive, July 2017

5 Years On

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I can’t believe we’ve reached 5 years since my battle with my Dystonia Alien began.  I wouldn’t say time has flown by but I have certainly survived far better than I had anticipated at the start. In the beginning I struggled to picture a day ahead yet alone 5 years down the line. I was by no means depressed I just couldn’t imagine living with this condition for any length of time. Each hour was filled with pain, each month was taken up with ambulance after ambulance trip to the local resus department. If you had told me in 2012 that in 5 years time I would be typing this sitting next to my partner in our flat with a new baby I would have scoffed. It didn’t seem like a life I would ever be able to have.

Looking back on the first year of Dystonia I find myself thankful that even though I still have my spasms, my wonderful neurologist has found a combination of injections and medications that work for me. Life is in no way easy, pain is still a rather constant companion, but I have far more control over my limbs than I ever expected to have.

My bad days, pictured above, are thankfully better controlled

I’m happy to say I no longer struggle to imagine the next day or year coming, nor do I dread the coming days anymore. Now I find myself excitedly looking forward and making plans for life post university, writing my next book and jumping without worry at any opportunity  presented to me. I acknowledge that I’m always going to have my struggles, but with multiple health conditions that’s to be expected. Despite, and because of my Dystonia, my days are filled with laughter and joy. What more could I want

It’s amazing  I don’t rattle, but all these pills keeping me ticking along.

Posted in Archive, June 2017

Summer, Spasms & Studies

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Summer has arrived without a doubt, beautiful cloudless sky, sweltering heat and wonderful days out whilst I’m on my uni holidays. However, the arrival of summer also means that my body is working extra hard to compensate which has resulted in periods of tachycardia, eye and other spasms and an increase in pain. Sunglasses are now a permanent feature to try and relieve a bit of pressure on my eyes, but short of sitting in the freezer there’s not too much that can be done.

When I first became ill I found my focus was entirely on all the things I thought I wouldn’t be able to do anymore. Over the years I have conquered all the hurdles I was facing or found ways around them. Going to university was a huge deal and quiet the achievement for me. I’d been so reliant on others for years that living on my own and only having care for a little while a day was a nerve wracking decision to make. As you can imagine the idea of juggling a baby and uni has been a bit daunting.

Stefan’s first trip to Oxford Brookes University

At first, I didn’t know how I would manage both, but last week we ventured up to my university so I could sit my last exam of my second year. I was extremely lucky that my lecturer was willing to look after Stefan whilst I sat the exam. This has given me the confidence that I can do both, and that I’ll find ways to cope, for example little things like strapping the pram to my wrist so that if I have a seizure or have an extreme spasm he’s perfectly safe and can’t go anywhere. Small things like this put my mind at ease and reassure me that despite my conditions I can manage life as a student and mum.

Keeping the pram attached

Posted in Archive, March 2017

Practically Complicated In Every Way

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Its been a few weeks since I last posted, and it’s mainly because I don’t have a clue where to begin. My body has been doing what it does best and excelling at being complicated resulting in very confused Doctors trying to figure out what to do with me; I’ll let you know if they ever figure that one out!

Functional is how I would describe myself at the moment. In that I can get up and dressed but it’s causing a lot of pain, and then that’s my spoons used up for the day.  I’m pretty sure sleep would make me feel a thousand times better, but between my iron tablets (I’m extremely anaemic) causing severe sickness morning and evening, spasms, palpations and generalised pain, I have found that I am lucky to get three hours of sleep a night. As most people with chronic illness know being fatigued makes everything harder and it all seems a lot worse than it probably is. This has resulted in tears quite regularly recently simply because I don’t quite know what to do to help myself.

I’m currently 33 week pregnant, so there’s not long left to go. It reassures me to know that once baby is here I can go back on my Botox injections and safely take stronger painkillers and muscle relaxants again. Whilst I’m keeping my fingers crossed I’ll be able to avoid going back on high doses of these, it’s comforting to know that I will be able to manage my pain far better.

I’ve been in bed for three hours now, tossing and turning. My left shoulder is agony, and I have horrific nerve pain in that arm and over my right rib. I feel rather emotional, and wishing for the ever-elusive magic wand to be waved to take the pain away. I know that this flare up in the long run will be worth it, and once the baby is here I’ll forget about it. But right now, coping with a flare up of my current conditions and a flare up of my new symptoms is making things feel pretty tough.

I’m hoping that whacking my TENS unit on full and using my heat packs will help me get enough sleep tonight that tomorrow is better.