Posted in Archive, September 2021

Covid-19 has arrived in our household

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Toward the end of last week our youngest woke with a fever. She didn’t have a cough, a runny nose or anything that particular screamed that it could be Covid-19, nor were we aware of anyone that we had seen recently who had developed it. So we were not particularly worried. However we arranged for her to have a PCR test as govt guidelines list a temperature as one of the signs to watch for. We didn’t expect a positive result, thinking instead it was far more likely to be a normal cold. After all the kids seem to have colds constantly. Less than 24 hours later at 1am in the morning my phone buzzed to let us know we needed to isolate. She had covid.

We tried our best to keep the anxiety at bay. Both myself and my partner are fully vaccinated, having received our vaccines at the start of the year. Yet after shielding for so long, and reading up on the virus over the past 18 months on the many different issues it can cause, it was hard not to worry. Both my son and I were shielders. Stefan, tested positive two days later. Whilst he has been undeniably feeling rotten and suffered more than Evie, he has luckily coped far better than we expected and is now seeming more like his cheeky self again.

We thought that we may have escaped catching it. Almost a week went by and then Damon tested positive. I was already isolating away from the rest of my household to try and avoid catching it as I had developed sinusitis which my body was already struggling to cope with. At my partners suggestions I was feeling worse rather than improving on my antibiotics I took a lateral flow test. The test result line appeared in less than twenty seconds. So off we went for a PCR again, which soon confirmed what we all ready knew.

This extremely short blog has taken me nine hours to write – ridicules I know. The fatigue I am experiencing is unreal I keep falling asleep while writing it despite being sat up with laptop on me. My body is not happy with a mirad of symptoms between dislocations, nerve pain, fatigue, spasms, no smell and taste, itchiness all over, breathlessness and spams on the left side of face which feels is as if it is determined to detach itself from my skull and be on its’ merry way.

My apologies for not getting round to live on facebook today. I needed to sleep. Hopefully tomorrow if I am feeling up for it I will do but it will depend on how I’m feeling.

Posted in Archive, August 2021

Adapt, Rethink, Go

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We recently had to return the power wheelchair we had on hire. It had been with us for the best part of a year and had quickly become a very integral part of daily life. It reduced my pain, dislocation frequency and enabled me to get out and about everyday. It was freeing. We’d hoped by the time it had to be returned that I’d have been seen by the local wheelchair service for an assessment as currently I dislocate my fingers while trying to push my manuel chair. However it’s a long waiting list and an appointment date is still a while a way.

In the meantime I’m reassessing how much activity I can do and what I do each day. My head deffinently believes I’m more capable than what my body thinks I am able to do. A lot of this week has been spent resting and trying to find a happy medium. However I’m also currently on week three of my period and I know that when I have extended bleeds I generally feel rubbish and my joints and muscles seem to be worse in general.

I’ve started introducing sleep hygiene into my night routine to help improve the quality of my sleep and to see if it improves how rested I feel. I’m trying to have no screens for an hour or two before bed. Instead I’m reading and crocheting. This has also given my mental health a little boost as well which is positive.

I’ve had a gyny appointment come through for the end of September, so not long to go now. Hopefully this one won’t get cancelled.

Posted in june, June 2021

First MaxFax Injections in a Year!

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Today I received my first lot of maxfax injections in a year! These are to help control my recurrent jaw dislocations. Normally these are timed so they are six weeks after my last lot of neurology injections to help max the benefits from both. The pandemic put a bit of a pause to that.

It was a new Dr today who treated me, who couldn’t quite believe that despite looking fairly normal, upon exam my jaw was still out of place. So we opted to switch things up. I had the usual jabs along with some new ones. Hopefully we will see some improvement.

I’d forgotten how much Botox flu can wipe me out. So I’ve medicated up and I’m mentally allowing myself to slow down for the next few days to help recover.

Posted in Archive, covid-19, february 2021

The Positive To Lockdown With Chronic Illness

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Chronic Illness in Lockdown memes

Whilst the multiple national lockdowns have come with there fair share of complications, for example cancelled treatments, the stay at home message has been a blessing in disguise for me. My body has been going through a decline/more frequent dislocations lately, which is less than an ideal. Now prepandemic I would have ignored my bodies pain signals, and ploughed through the day. A bad cycle, and habit that I had formed. Only collapsing in the evening, spoonless, in pain and annoyed at myself. Lockdown has relieved the social pressure to attended multiple groups a week, and be on the go all the time. For my particular lot of chronic illnesses it’s meant I have rested when I have needed to. I’ve had the opportunity to relearn my bodies distress signals.

Now don’t get me wrong, I’m not literally doing the above meme, though it has its appeals. But it has removed the guilt I felt on slow mornings when we watched a Disney film and had a slow start to the day, rather than rushing about. I still finish the day with no spoons. That is just life with chronic illnesses. However I rarely exhaust myself to the point that I have impacted the next day, which prelockdown was a frequent occurance.

Post-lockdown this is something I need to remember; that it is perfectly fine to acknowledge if my body is saying no not today. We can watch films, craft and bake in the house instead and have a lovely day. Just being kind to my body more often will allow more days out and in the long run that’s what works.

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, covid-19, January 2021

Disability & Discrimination During Covid-19

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As the world adjust to Covid-19, those of us shielding in the UK (and the thousands of other impacted disabled folk) have read multiple news report to see how it will impact us next. Reading through each new regulation brought in to ‘flatten the curve’ screamed ableism. Whilst I agree the new rules were needed there was no consideration for the disabled people in society. Even under tier three regulations when we were allowed to reemerge from our homes after months of shielding, the regulations had no adaptions for us. They were discriminatory at best; put yourself in our shoes and suddenly being faced with having no access to a public disabled bathroom, having to que to shop with no where to sit when your physically need to, a lack of parking because many disabled spaces are now being taken up by outdoor seating for pubs and restaurants. Many disabled people who were being interviewed for research by Inclusion London reported that they felt excluded and marginalised.

There was a fantastic article in The Guardian today, with an interview by paralympian Sophie Carrigill addressing inequality, specifically around how the needs of disabled people have been ignored throughout our multiple lockdowns; you can read the article here. I completely agree with her, my social media is full of adverts every couple of scrolls trying to encourage me to sign up to one fitness program or another. Even my gym is going live and notifying me, along with influencers left, right and centre. Yet I am aware of only two people currently who cater with workouts for the disabled. What really shocked me though was when I went to comment under the article on facebook. It was disability discrimination and frankly simply disability hate comment after comment. The completely ignorance of people was astounding.

Adaptive Workouts – Disability FriEndly

A fellow Dystonia warrior Gina, runs Adaptive Martial Arts (I’m meant to be trying this when I’m having a healthy run myself!), which you can do via Zoom currently. The second, is a woman I recently found on instagram who teaches dance via her wheelchair her handle is @katestanforth .

Disability Discrimination – The evidence

There has been a significant rise in negative attitudes towards people with disabilities since the start of the pandemic, or to be more specific since the start of the shielding and need to wear a mask. Its not hard to find evidence of this, its all over social media but also sadly there multiple news and police reports on the subject.

A report by the neighbourhood watch found that a recent survey carried out found 62% of deaf and disabled people organisations reported an increase in disability hate crime referrals on the previous weeks – this was just after it was announced face masks were to become mandatory. I myself have twice been yelled at for not having mask on, once whilst relocating my jaw and once yesterday whilst having a sip of a drink.

The findings from Inclusion London Briefing are really quiet troubling about the rise in Disability Hate Crime during the course of this pandemic, you can read it here. To name a few examples 1) A rise in hate crime by neighbours including a rise in hate crime against disabled children whilst they are at home by neighbours. 2) A rise in verbal abuse against disabled peoples and instances of being spat at whilst out of the home due to inaccurate perception the disabled person being a ‘virus spreader’. 3) An in increase in online hate crime, often on social media platforms, in which disabled have been that their lives are inferior and that they are taking up resources from non disabled people.

Disability Inclusion Post Lockdown

Where do we go from here? It’s going to take a lot of work and advocacy to get us to some level of equality – which the Inclusion London Briefing article briefly does touch on. I don’t know when that will happen and how we go about getting the public to flip their perception again. Part of the way that perhaps that can happen is that when we come out lockdown the regulations allows for disabled people to use our bathrooms when necessary, and doesn’t turn our much coveted gold dust parking spots into garden seating for pubs. But that would only be the start, we need a whole lot more to turn peoples attitudes around.

Posted in Archive, January 2021

The Test Results Are In

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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

Lockdown, Homeschooling and Work

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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

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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

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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!