Dystonia and me – Page 2 – Dystonia and Me

Archive, December 2020

Life, Health and Wellness Coaching with Dystonia and Me

Posted on December 18, 2020 by dystoniaandme

Launching a new chapter of Dystonia and Me whilst in the middle of a pandemic may seem like madness or at the very least questionable. Yet here I am registered and my social media page set up. It’s a move I’ve been toying with for a while but never seemed quiet the right time. However the multiple lockdowns have provided me with the perfect chance to finally spend some time getting my diploma. I spend a lot of each day already giving advice and talking to readers on an individual basis that it made sense to ensure that I’m as qualified as I can be to do so.

How does Dystonia and Me Coaching differ from others around?

I’ll be taking on only those with physical and/or mental health issues. The reason for this decision is that I’m in a unique position with my own health issues to understand how the applications of my methods can make a positive impact to individuals with health conditions. Having seen how many scammers prey on people in this area its vital to me that individuals know where to turn if this is a route they want to pursue and can trust in my brand.

Are you working during the pandemic?

Yes! Starting January I am officially open (currently taking bookings), I’ll be working through the use of zoom, phone calls and regular emails.

Is this a one size fits all approach?

Absolutely not! Each session is mapped around the individual. No two people are the same, so it wouldn’t be inappropriate to treat everyone so. Everything is tailor made to you and this is a process that occurs through conversation between myself and client.

I have a question you’ve not answered yet?

Fantastic, please head on over to Dystonia and Me Coaching where you can send me a message. All questions will be answered.

Archive, December 2020

Life alongside Complex Regional Pain Syndrome

Posted on December 16, 2020 by dystoniaandme

Complex Regional Pain Syndrome (crps) first appeared in my life back in February 2006. I was 16, in my GCSE year and had just had my appendix removed after a gruelling week on the adult inpatient ward being poked and prodded by consultants. Whilst they ummed and erred over whether or not to operate I would be given morphine injections into my thighs. A seemingly normal procedure which resulted in any semblance of normal vanishing in to the fire of nerve pain.

Around a week after discharge I was back in A&E having my leg x-rayed. Despite mine and my mother’s instance that it couldn’t be broken as I had barely walked due to the pain in it; so there’s been no fall, twist or bang to break a bone. Instead I was living in shorts unable to bare touch upon my skin, I was walking on my tip toes and every movement was agaonizing. This time I was admitted to the children’s ward after they’d established no break and the whispers of crps emerged.

My leg deteriorated rapidly to the point it was in a fixed dystonic position (not that anyone explained that at the time) I could not bare any sort of touch and felt like I was being burned constantly. I can vividly remember one day where the pain was so bad I was screaming for them to put my leg out; my brain so convinced that it must be on fire, despite my eyes seeing otherwise. They ended up sedating me with diazepam to help.

My stay on the children’s ward was not a short one. I was there for a total of six months, studying and completing my GCSEs and undergoing intensive physio therapy. I couldn’t be more greatful to the physio team. They impressed on me the importance of desensitisation of the leg. This essentially meant running different textures up and down my leg multiple times a day to reprogram the nerves to recognise that it wasnt a painful stimuli, we used things like make up brushes, sponges etc. The turning point though was when they introduced hydrotherapy into my treatment. I would be hoisted into the pool and spend the session pretty much holding the side for dear life trying not to scream to loudly. It was traumatic and still makes me want to cry thinking back on it but I am so glad that they kept me going with it. There is no doubt in my mind that it was the best desensitisation treatment.

My leg now can bare clothing and shoes, I don’t scream out when we go over bumps in the car or if there’s a windy day blowing my clothes. For the most parts the symptoms are there but quiet, only roaring their disabiling heads when I do something foolish like walk into a table edge, or spend to long on that side at night. The Dr’s told us they were fairly certain the morphine injections were to blame and I’ve refused all leg injections since.

Part of my Dystonia treatment involves three monthly injections. In 2015 following my usual jabs I found myself at the Dr’s being diagnosed with crps once again, this time in my right shoulder. I was struggling to wear clothes and move my arm. Thankfully we knew from last time how to act and I arranged hydrotherapy straight away and started my old desensitisation routine again. I still struggle to wear a bra, it causes immense burning but I force myself to for as much of the day as I can bare. Every 12 weeks the area is injected again and I have a flare up. It’s shattering but I take comfort in knowing that the desensitisation methods bring it back to a tolerable level

There’s a lot yet to be understood about this condition but to anyone who is suffering please remember you are not alone and my facebook page inbox is always open.

Archive, December 2020

What’s In Your Flare Box

Posted on December 14, 2020 by dystoniaandme

The concept of a flare box is one that I didn’t properly venture into untill I attended the Stanmore Inpatient Pain Management course back in early 2016. It was really impressed on me that this was something that could impact my pain management. As soon as I got home I set about setting it up. Almost five years on and I still use these! In fact I have one in my bedroom and a second one by my desk downstairs so that they’ll always be accessible when needed.

A flare is generally considered to be a worsening of symptoms over a fair length of time e.g a week to a month or so. This is in comparison to just having a bad day or two of symptoms, then reducing to your normal levels.

My two boxes differ slightly and reflect the area of the house I’m in. My upstairs box contains several TENs units and chargers, multiple wheat heat packs, a symptom diary and pen so I can write down anything that I think may be important to remember to tell my drs, some volterol cream, neck brace and various other splints for dislocations, earphones, lavender pillow spray, and some books.

My downstairs box has all of the above but it also has some cue cards for if I’ve struggling to physically talk, so I can just flash these up instead; these have my most used phrases on e.g please can you fill up my flask? Please can you reheat my wheat pack? It also contains some electrolyte water soluble tablets for if it’s my POTS is also worsened.

Everyone’s flare kits differ depending on what they feel they need in the flare, and my deffinently have evolved over time. For example right now both have spare socks added to them as I know cold feet induces spasms for me. So in winter some extra warming bits are a must. Plus five years ago I wasnt a mum, so there also contained a notepad with a list of easy binging Netflix show, a stash of free from chocolate and anything else that cheered me up.

Let me know in the comments if you use one!

Archive, Novemeber 2020

Local Anaesthetic and Me

Posted on November 14, 2020 by dystoniaandme

When I was 17 weeks pregnant with my daughter I underwent surgery to remove a mole on the underneath of my right breast that had early cell changes. Due to the fact I was pregnant and it was a relatively short surgery they didn’t want to give me a general anaesthetic, so decided a local would do. Unfortunately my Ehlers-Danlos means I have no response to local anaesthetic and felt every cut, and every stitch. The whole process was rather traumatic and I’ve worked hard at trying to forget it.

I was admitted to my local hospital a couple of days ago due to worsening symptoms in my eye and leg. Due to this it was decided last night to bring my lumbar puncture forward to that evening. I explained that local anaesthetic does not work in the slightest for me. They decided to give me a double dose in the hope it would work; it didn’t, which I expected, maxfax team has tried injecting several times this amount with no effect previously. Now lumbar punctures are known to be painful anyway, so to know I was having one without effective pain relief was nerve wracking to say the least.

It was one of the most agonising experiences I have ever had. It took multiple attempts to place the needle correctly as they found the spaces inbetween the spinal collum to be be extremely narrow. It’s been just over twenty four hours since and I’ve struggled to move. My whole back is in horrondous pain, taking a deep breath or swallowing liquids really seems to agreviate it. I’ve also lost sensation over my waterworks which is concerning. I’ve spoken to the consultant but everyone’s answer over this is that I need an MRI, which apparently is booked but no can tell me a day or time.

I’m missing my kids loads but I know that being here is where I need to be. If this helps put a piece of the medical jigsaw in place and leads to better management that can only be a good thing. Just got to take everything one moment at a time.

Archive, Novemeber 2020

Vulnerability is Strength

Posted on November 14, 2020 by dystoniaandme

It’s a painsomnia night so I thought I would share with you all something that I’ve been coming back to frequently recently. Personally I’m a very sensitive, emotional person; now some may view that as a bad thing, others a good thing, some of you will be neutral. I can see the pros and cons, but it’s what makes me me, so yes I may cry buckets everytime we watch certain episodes of Vikings, or The Lion King but i’ll also laugh myself to stitches five minutes later. It’s a rollercoaster of life. It’s real, honest and truth.

So why do I, and I know many others with chronic illness will be able to identify with this, go on autopilot everytime a doctor, family member or friend asks after us? You know the drill, you walk into the drs room the doctor greets you and asks how you are before you get down to the nitty gritty. It’s a formality, so like a healthy person you respond with I’m good thanks, and you? It’s ridiculous! Why is it so hard to say you know what I’m actually not great at the moment and I need some help.

I forced myself to do this yesterday. I could hear the usual auto response slipping out my mouth, so I caught myself, took a breath, looked the doctor in the eye and said I’m pretty awful and I don’t know what to do. Now saying that wasn’t easy but boy did the relief for sharing the burden feel good. Making that choice to let the facade of I can cope with everything slip for a moment to ask for help took an incredible amount of inner strength and it’s something I’m going to practice doing more often. Vulnerability is not something to view in a negative light, in fact it allows others to reach out and see if they can improve your situation. Sometimes just talking things over can make a difference.

So just pause for a moment and think; are you like me and guilty of putting walls up? Is it worth flexing your inner strength and letting that vulnerability show? Let me know what you decide to do!

September

What Can I Do For YouToday?

Posted on October 27, 2020 by dystoniaandme

What can I do for you today? It’s the standard greeting I find I’m met with at every doctors appointment, no matter the speciality. Perfectly poliet, open ended so therefore inviting me to dive in to the promblem that has brought me to their office. Expcept lately that is not how that questions makes me feel, it leaves me biting my sarcastic answer off of my tongue. Fix me, take my pain away, how about just stop my constant deterioation please and i’ll make do as I am but please press pause in the meantime. Let me correct myself, it’s not sarcasm, it’s truth, it’s honest words from a scared vulnerable person who wont utter them because I know the reality is the Drs are trying but their isn’t much they can do.

I was diagnosed yesterday with Trigeminal Neuragia, along with being informed they no longer expect the sight I’ve lost (the majority of it) in my left eye to return; I can see blurry outlines but I cannot work out shapes or distance. It was a bit of a hit emotionally as whenever I have had Optic neuritis before my sight has recovered fairly well, however this has been going on for a while now and if anything the pain has gotten worse behind my eye, it is incredibly intense. I’m trying not to dwell on this too much while we await my Evoked Potential results and wait for a date for my lumbar puncture test. Hopefully these tests will shed some light as to what is going on currently.

In the mean time I feel much like this blog; I am all over the place, one minute quite happy dealing with things as they come, the next frustrated that despite almost a decade of chronic illness a level of normality is yet to be reached. I’m still fighting against the current of deteriation. It may be as useless as trying to swim the wrong way around wild rapids but it helps to know that I am trying to do something to counter the every growing pill box.

Archive, October 2020

New Found Independence

Posted on October 20, 2020February 24, 2022 by dystoniaandme

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.

Archive, October 2020

Dystonia & Me; Spoonie Talks

Posted on October 13, 2020February 24, 2022 by dystoniaandme

Some of you who have popped on to here over recent days will have noticed small changes popping up around the site. It’s an exciting time for the blog. In the eight years its been running for it has had the same look, so it was about time it had a make over along with a brand spanking new feature. Hopefully this means you’ll find it easier to navigate, but as always I’m only a message away and you can always drop me a line over on the Dystonia and me Facebook page if you’re having any difficulties.

Spoonie Talks is the blogs latest new feature, this will be a weekly podcast posted up every Friday evening. I am overly excited about this. It’s an idea I have had bubbling away in the pipeline for awhile but it was never quite the right time. However sometimes you’ve just got to grab the pandemic by the horns and give things a go, so I’m launching Dystonia & Me: Spoonie Talks podcast and hope to have the first episode up and running by the end of the month.

How can you be involved?

While some of the the episodes will just myself talking, I’m aiming to make this an interactive series bringing light to issues that my readers, and the Dystonia and me community feel strongly on. This really could be anything! It could be on a specific condition that you would like to spread awareness about, you could be a carer and wish to discuss what that’s like, maybe you want to share your journey to diagnosis, tips on balancing illness and home life, pacing, perhaps you are a charity and want a platform to speak on. The possibilities are really endless.

If you think this is something you may be interested in, drop me a message through the facebook page and we can have a chat. The more the merrier!

The Return of Facebook Lives

During National lockdown I was on the Dystonia and Me facebook page twice a day doing facebook lives to check on how everybody was doing both physically and mentally. This meant I could provide links to resources for those who were struggling, and hopefully for those who were feeling isolated it meant that they had something to look forward to.

Now with my health not being at its most stable at the moment twice a day is not something I can commit to, however I feel (and some of you have messaged) that the lives returning would be helpful with so many local lockdowns in place again. With this in mind I’m going to be coming Live on the Facebook page 7.30pm every Monday and Wednesday night. It wont always be awareness spreading, it might just be a friendly chat to see how you are all doing, so join in in the comments. I will schedule these on the page, you’ll be able to set reminders for those who want to join.

I’ll see you all tomorrow night.

Archive, August 2015

Taking Dystonia on Holiday

Posted on August 15, 2015February 24, 2022 by dystoniaandme

We recently got back from a beautiful family holiday on the coast. The weather was fantastic, and there is something relaxing about waking up to the sound of the sea lapping against sand. Going on holiday with Dystonia requires a fair amount of preparation. Every medication I’m currently prescribed has to be brought with us, just in case of an emergency, so that we can try to ‘contain’ the amount of spasms and deviation my body endures. Even though I can walk, both my walking sticks and my wheelchair were also packed. In all honesty I thought that packing the wheelchair was overkill, but then I have never enjoyed being it, I used to quite literally bum shuffle around the house rather than use my chair.

As many of you will be aware I have recently had a change in neurologist. At my first consultation with him he declared that he would not be following my old injection routine and that we would be switching from 6 weekly to 10 weekly injections. My objections to this change fell on stubborn, deaf ears. Due to his determination I spent my holiday, and the weeks either side of it, unable to consume solid food. Smoothies and soup were my saving grace. Chewing led to rather painful jaw spasms. It made sense to switch to soft/liquid foods in order to trigger the spasms less.

I spent several hours on a couple of separate occasions functionally blind whilst we were away. My eyes had spasmed shut. This was a complete shock to the system, my condition has been incredibly well managed for so long. It is my arm and jaw that I am used to contending with; not my eyes. I don’t think I’ve felt as thankful for my wheelchair as I had in that moment. For once I did not begrudgingly sit in it, I clambered in thankful that it enabled me to still be out with my family whilst lessening the risk of injuring myself. My family were fantastic, describing the sights in front of them to me so I could conjure up in my mind’s eye my own version. My brother amused us all by whizzing around the aquarium with me clutching on to the wheelchair with fear and hilarity.

I would much rather have not had to fight my Dystonia whilst I was away, but in hindsight I’m glad I had no option but to do so. Not only did it create some great memories, but it gave me the strength to not back down when I visited my new neurologist this past Wednesday. I stood my ground and managed to get him to agree to seven weekly injections and back at my normal dosage. This has left me feeling optimistic and far more relaxed about my upcoming move to university.

Archive, October 2013

Short Term Goals

Posted on October 1, 2013February 24, 2022 by dystoniaandme

As I have mentioned before my body does not react very well to me getting ill, even colds cause my Dystonia alien to act up more than usual. Therefore I have spent today spasming, having seizures and trying to find the energy to get things done. I have not slept well the last few nights which I know will be aggravating my symptoms – thankfully I have reflexology tomorrow which should help with my sleep.

I have spent a lot of time thinking today about goals. I have lots of long-term ones that I am determined to achieve, but it occurred to me today that I also needed short-term ones as well. Goals that would keep me motivated even when I am feeling under the weather and my body is at its worst. I have decided that my first goal will be to be to walk in my splints around the house by Christmas without crutches! As I am starting neurophysiotherapy soon I see no reason as to why this cannot happen. I was walking around the house last Christmas and I shall, with the aid of my splints, be walking by this Christmas.

There is a girl on my college course who I find very inspirational. Despite being young (17), she is coping amazingly well with a combination of different conditions. One of her issues is that she cannot feel her legs – she has some very limited feeling in her upper thighs but that’s it and yet with the help of crutches she walks. Now most of the time I can feel my legs, and I have the extra help of splints, so it is time to put them to good use and start walking!

I know that I may not be able to walk every day due to my Dystonia aliens games, but I will walk as far as I can every day, whether that only be walking 2 footsteps or walking for 2 hours, I shall every day walk! And I shall do this by Christmas!