2021 has arrived! We rang the new year in a quiet manner, a nice drink, a dislocated thumb and an early night after realising we were out of bandages (and spasms were forcing my thumb to remain out). I hope all of you had a lovely NYE and are healthy and safe at the start of this new year.
So what does 2021 hold in store for me?
As you may know from my facebook page I have set up my own holistic health coaching business which is designed to help people who are disabled/dealing with invisible illnesses. Holistic Health coaching is a partnership that will empower them, pin point problematic areas and find realistic tools to help improve quality of life, improve pain management, mental health wellbeing, and more.
Enabling others to improve their quality of life is a passion of mine. My own struggles in that area, along with fighting for help with mental health, pacing advice and more stuck me as how much holistic health coaches are needed. I know that I could have benefited greatly from one in the beginning. I look forward now to helping others, for anyone interested you can contact me here https://www.facebook.com/DystoniaandMeCoaching/
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.
After a week long stay I was finally discharged from one of our local hospitals yesterday evening. I was admitted due to pain in my left eye which has optic neuritis, it had become overwhelming, to the point I felt I had to apply pressure on my eye to relieve it. I had also lost the sensation in the bottom half of my right leg.
During my time in the hospital they decided to carry out a Lumbar Puncture and MRI knowing that my neuro team wanted to do these anyway. The LP side effects I’m still dealing with, I am still having issues with my bladder, my whole leg now has no sensation, and I have a permanent horrondous headache. Both tests came back clear which left the dr’s there confused. On discharge I was diagnosed with Complex neurological disorders and global sensory loss in the right leg, and told my neuro team would take over figuring out the cause.
Today I had an Opthalmology appointment at another hospital. The opthamologist in charge of my care is wonderful. I sat down, he faced me and said “So you have MS ” he was quiet matter of fact about it. I corrected him and pointed out that my tests had come back clear. He muttered that they were wrong and went on to examine my eyes. After several tests he sat back looked me in the eyes and again said “Rebecca you have M.S”. He was quite insisted that my doctor’s must have missed something on my scans due to the state my eyes were in.
So where do I go from here? Such wildly different view points, everyone agreeing that my local neurology team needs to see me again and review what the different teams have found. However getting hold of them is darn impossible. Both myself and my gp surgery contacted them a few days before I was admitted informing them I was going downhill, and needed input desperately. Neither myself or my gp’s surgery has had a response yet.
Right now I’m very emotional and very stressed. I’m taking things moment by moment and trying to just accept things as they are and get on with it. But I work best with action plans and right now I don’t even know who’s responsible for my care. I feel very lost in the system.
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.
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.
Being diagnosed with a chronic illness, for the majority of people, stirs up a lot of emotions. Its a process we all go through at different rates, and there is no wrong or right way about it. With illness there is often a sense of loss of normality, for every individual that’s different depending on your condition and what symptoms your experiencing. I really wished I had been given a heads up back when I first got ill about the grief I would feel, for the profound sense of loss I would experience. I fell into a really deep depression and for a long time was in denial thinking that somehow I was just going to wake up one day and be able to return to my Midwifery degree. If you go back to some of the first blog posts I ever wrote on this site it’s really quite easy to pinpoint which part of the Grief cycle I was in.
I turned to a combination of Cognitive Behavioural Therapy and Mindful Meditation to help me come to terms with my health and my new reality. This was a good mix and after a fair amount of time had passed I reached acceptance. Now don’t get me wrong I still had blips, a friend would announce they had decided to train as a midwife, or I’d find my old coursework in a clear-out and I’d slip mentally for a few days, but I would always be able to pick myself back up again. However what I didn’t expect, and again I wish I had been warned that this was a possibility, was that with each new diagnosis that got slapped on to me, and with every new symptom that became clear was on a downward path and here to stay; that I would find myself having to repeat the Grief cycle again.
It of course make sense that you would have to. You are after all experiencing a loss of sorts again. Mentally and physically its challenging and draining. It is natural for you to grieve, to be angry, to want to challenge what your going through until you reach some sort of acceptance. I’ve found myself going through this again recently. I’m on my 7th bout of Optic Neuritis, along with loss of all sensation in my right leg; I have next to no use of it currently. My local neuro team suspect MS but are investigating fully for all demylation diseases to ensure nothing is missed. Finding myself once again with more limitations, really sent me spinning. I found myself asking why over and over again. I felt like I needed an explanation because it seemed insane to have yet another condition added to my already extensive list. I’ve not reached acceptance yet, but I’m remembering my mindfulness and I’m defiantly moving through the stages quicker this time.
If I had to give one tip to someone newly diagnosed with a chronic illness it would simply be to kind to yourself and to remember to practice self care. Your allowed to grieve, its natural, don’t beat yourself up. Make sure you don’t bottle your emotions up, confide in someone you trust. you will feel better for it.
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.
The issue with being chronically ill is that when a new complication arises it can be hard to know whether it has been caused by a preexisting condition, and if so which one, or if a new condition has popped into the question. Over the last few weeks I’ve had increasing amounts of pain in my knees, calf’s and feet. I tried to brush this off but slowly and surely my feet and legs have started spasming. So now I find myself trying to work out if this is due to a spread of Dystonia or a relapse of Chronic Neurological Lyme Disease.
I had a long chat with my neurologist on Tuesday, he’s of the thought that my Dystonia has progressed as I’m still within the 5 year time frame for a spread of symptoms. Personally I’m hoping it’s Lyme related, as whilst still hard to treat, the possibility of remission again is real.
The idea that it could be Dystonia scares me due to the painful nature of the spasms; but I know I can get through it. I just have to take it one wobbly step at a time. I never thought I’d see the day when I would have to strap my leg splints on again but they’re worth the discomfort.
So here’s to crossing my fingers and seeing where the next 12 weeks takes us, by which point we will have a better idea to the cause and therefore treatment options.
I cannot believe how quickly this year has flown by, it feels like just the other month I was curled up writing my usual Happy Christmas blog post. Looking back at my blog posts from the last year it has been a rather hectic emotional roller-coaster. My blog was set up to raise awareness in 2012, but rather accidentally for me it developed into a rather useful therapeutic outlet. For you guys that means whilst I do post the happy stuff, the negative is slightly more frequent. This is simply because life is unpredictable and the good, bad and the ugly don’t come in equal measures.
So to help end the year on a positive spin here are just a handful of things that have kept me smiling this year that wouldn’t have happened if I wasn’t chronically ill.
January 2016 – After BBC 3 Counties found my Cosmo Articles and my blog I took part in a quick phone interview to discuss disabled dating and ‘The Undateables’. Having been approached by ‘The Undateables’ before I took advantage of this opportunity to express how labels such as the shows title really are not helpful when tackling social stigmas.
February 2016 – I was invited down to the BBC 3 Counties studio to participate in a valentine’s day segment on dating and disability. I was extremely nervous but the humour I manage to find in my conditions meant that I had several great stories to tell. It was a surreal experience that received great feedback and really boosted my confidence.
March 2016 – Finally I realised the importance of not apologising for being the way I am. My genetic makeup makes me who I am. So what if I am a bit of an oddball with misbehaving limbs? If you feel uncomfortable around me then take a look at yourself and your views first, because my genetic make-up isn’t something that can be fixed and I no longer feel like I have to apologise for it.
April 2016 – After waiting just over a year I finally was admitted to The Royal National Orthopaedic Hospital Stanmore for a 3 week inpatient pain management program. I’d been extremely nervous about this, and if I’m being honest didn’t see how they could help me short of waving a magic wand. 8 months later and I’m still putting my pacing lessons into practice (I slip up now and then but on the hole I manage much better), and I have a flare up plan that works!
May 2016 – this had been a hard month, between being assaulted and the Drs telling me they were pretty certain I had MS (turns out I don’t but that was a scary few weeks). I was pretty much at my lowest point here. Then at the end of May I was offered a preliminary contract with Britain’s Next Bestseller. Now sure I may not have reached publication due to not hitting the pre-order requirements but hell that was a confidence boost and a half. I had a publisher believing in my work and that’s good enough for me.
June 2016 – I was still being investigated for MS, but with a wonderful man by my side I was managing to take it all in my stride. I was starting to see the funny moments in being ill again rather than allowing myself to be swamped in fear.
July 2016 – This marked 4 years since I had had to leave my midwifery training. Usually I would mope about and be quite tearful. This year whilst the sadness is still there I can smile when reflecting on it. For if I had never become ill all the wonderful opportunities I’ve had over the last 4 years would never have happened.
August 2016 – my partner gave me a key. I think I just grinned for the rest of this month.
September 2016 – I started my 2nd year at university. I’d survived my first year and am fortunate to be studying at a university that goes above and beyond to help meet my needs!
October 2016 – I was pretty ill and hibernated for most of this month. The fact that I recognised this and took care of myself was a huge leap forwards for me.
November 2016- I ended up back in the hospital for awhile. Nothing out of the ordinary in that respect other than the fact I have a huge fear of this particular hospitals neurology team. After being misdiagnosed by them before it was no surprise when I found them to be as pigheaded and ignorant as previous. The difference this time around was that I had the confidence in myself, and enough knowledge of my conditions to advocate for myself rather than allowing them to treat me incorrectly.
Everything that’s happened throughout the year whether big or small has been impacted by my health. Previously I would have told you that was awful, I wish I could be ‘normal’; whilst yes I’d love to be healthy, I cannot deny I have an exciting fun filled life that if I wasn’t a spoonie would have been drastically different.
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