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.
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.
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.
Currently I’m sat in the rush hour traffic on my way home from seeing my neurologist in London. It’s been a long day which upon arrival I soon expected to end in despair. Despite email confirmation of my appointment, my slot had not been added on the system. I’m a big believer in to be early is to be on time, and this slightly over anxious side of me always shows itself before appointments; being extra early was something I was extremely relieved about this time as it meant that they had time to order up the injections.
Thankfully I was seen and as usual I left feeling ever grateful that I’m under my neurologists care. He’s been a rock for me these last 8 years and continues to be. He’s agreed with maxfax recommendations to start me on Sinemet and recommended an alternative to try if this one doesn’t have the hoped for impact. Maxfaxs theory is that there are a small number of EDS (I’m CEDS) who also have dopa responsive dystonia and that I may fall into this category. I’ve not tried any of these medications before so I’m keeping my fingers crossed and hoping for some sort of dent in symptoms.
I’m planning on resting most the journey home as the injection site in shoulder always aggreviates my complex regional pain syndrome. More on this tomorrow.
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.
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!
Today I was up in London to see my neurologist to get my six weekly injections. I was looking forward to speaking with him as this time round my botox had been 7 weeks apart. Normally this would have resulted in severe facial, neck and arm spasms but for a change I have been okay. It is only over the last few days that I have felt the familiar tugging sensation around my eyes, jaw and neck. Whilst I have had spasms in these areas it has been easy to cope with. My arm has been spasming/twitching more but still at what I consider an acceptable rate, so I was eager to discuss with him aiming for 7 weeks again. Now as luck would have it he’s not working that day in 7 weeks time, so my appointment is as usual in 6 weeks, but this something I would like to aim for.
I am not fond of needles at all. In fact watching the doctor draw the botox up each time is enough to make me want to run screaming from the room. Every 6 weeks I turn up at the hospital racked full of nerves, if the injections did not make such a big difference on my quality of life then I don’t think I’d go. I trust my neurologist completely however, and after two and a bit years of having him administer my injections I feel confident in his skill. You can imagine how sky high my nerves rocketed today when upon arrival I was informed that my neurologist was absent. The doctor filling in for him was perfectly pleasant, however having never met him before, I found it hard to sit still in the chair whilst he injected me.
Today was my first round of injections since developing Complex Regional Pain Syndrome. On my GP’s advice I tried covering the area that was going to be injected on my back with topical local anaesthetic. I find it hard just wearing clothing over my shoulder/arm at the moment so was dreading having a couple of needles being inserted. As I have mentioned before I have Ehlers Danlos Syndrome Type 3, this unfortunately means that local anaesthetic does not work for me. I had been hoping that as it was a topical one and not an injection that it would be slightly different and would work, however I discovered very quickly that this was not the case. I cannot describe what my arm has felt like over the last few hours, it has been a mix of a burning and pin and needles sensations. I am hoping that this will die down as the evening wears on.
Hopefully my neurologist will be at my next appointment and we can discuss our next steps.