Health conditions can have both a physical and emotional toll, for example chronic pain; this can impact your sleep, cause more fatigue and leaves you starting the day just as drained as when you went to bed. A routine can change all that.
Now I’m not suggesting you plan out every moment of your day!
However a well thought through routine can empower your day, lowering your pain levels over all as you’ve optimised the way you have used your body.
It’s worth asking yourself when is your pain worse in the day? What activities does that impact? Make a list. From here you can proactively look at your routine and adjust how you manage your day which in turn should lower your pain levels. An example of this is if you struggle more in the mornings, then lay out what you need (or ask someone to help you) in an accessible place. This will save you time and energy in the morning.
Make sure to include time for you in your routine and space out energy consuming tasks over the day. If there is a task you are particular struggling with think about how it can be altered. For example, when chopping vegetables does sitting on a stool help? Would buying pre-chopped vegetables be a more realistic option? Is there someone else who could do this task for you?
Doing to much will result in a Boom and Bust cycle. Pacing is your friend.
I’ll be live tomorrow night with more on the Boom Bust Cycle.
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.
Following on from yesterday’s Facebook live where we touched briefly on genetic causes of Dystonia, I wanted to delve into this a little more. DYT1 gene is the cause of some cases of early onset Dystonia and seems to be the one people are aware of. However there is a number of other genes that can cause Dystonia. Knowing whether it is a genetic cause is worth investigating as treatment can differ. For example I have the GCH1 gene which is the cause of Dopa Responsive Dystonia. I’ve lived with my symptoms for eight years and only recently found this out. I’m now awaiting to start on the appropriate medication for this particular type of Dystonia.
Being diagnosed with Dystonia for the majority of people is a long road, and more complicated still if you don’t know the medical history of your parents, grandparents etc. I haven’t had contact with my father for years but I know from my mum that he had hand tremors and was often called shakey. Now this could be caused by anything and that’s important to remember but based on the fact that my hands also spasm and tremor it’s a significant point.
When I was on the initial road chasing for a diagnosis only one doctor recommended genetic testing and this was never followed up on. I then spent years fighting against the label of functional Dystonia, which seemed to being applied purely based on my previous traumas. It became a frequent sticking point, one in which I often pointed out that fighting for treatment and belief was by far more traumatic at the time than issues I’d already worked through with therapists.
It was only after resorting to private genetic testing that we discovered that I had a genetic cause; I’d been blaming it on a horse riding accident for years purely because my neck spasms started shortly afterwards.
So does having a genetic cause change anything? Yes! Some types of Dystonia are far more likely to respond to Deep Brain stimulation, while others respond to specific medications better.
It is important to remember however that not all Dystonia causing genes are known yet. This is one of the reasons family history is so important. I only went digging into my genes after my maxfax surgon mentioned that their appears to be a link between Ehlers-Danlos Syndrome and Dopa Responsive Dystonia.
Other causes can be medication induced (tardive dyskinesia), brain injury, as a symptom of another condition etc. If you have concerns over the root cause of your condition please speak to your neurology team.
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.
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.
I hadn’t planned on writing this. Originally I was going to keep it pent-up. But the whole point of Dystonia and Me is to share with you all the highs and lows of this condition and the many battles I fight along the way. As I mentioned in a post during awareness week, I was abused physically and emotionally as a teenager. I have since had a lot of therapy to help me come to term with this and move on from that period of my life, which I have done. I have always strongly believed that you should be completely honest with your doctor. After all how else are they meant to successfully treat you if they do not have all the information they need?
The way many doctors have treated me after learning I have a history of abuse has left me wishing I had never informed them of it. This specifically applies to my GP. It seems that every aspect of my sanity has been called into question. I have never been so insulted. Yet it would seem that I am expected to roll over and accept this as the norm?!
My GP called me into a meeting to explain himself last week. At the time I was slightly pacified. Yet as I sit here, redrafting blog posts for college (exam prep), I find myself becoming incensed. This same routine has gone on for years now. Is it really so hard to believe that an abuse victim can move on with their life and be coping well, despite having a movement disorder? I am absolutely fed up of having to reassure him over and over that I am not depressed, that my past is not the route of all my problems. Even informing him that the genetic test showed that the Dystonia was genetic did not seem to make a dent in his warped view. As I keep pointing out to him, I am not the one dragging up my past it is him.
It worries me how little so many doctors know about Dystonia. My GP has looked after me since 2012, and yet still clings to the idea of abuse being the root of all my problems. This is despite having letters from my neurologist and my cognitive behavioral therapist telling him that my past has nothing to do with my Dystonia. I know that I am not the only sufferer experiencing this problem. Having to fight against doctors is hard. Standing up to them is frightening, I respect my GP, but at the same time he angers me so much because he is not taking the time to listen to myself or my neurologist. By standing up though there is a chance he may learn. I keep hoping…you never know. He may change.
Last Thursday my riding lessons started up again. It was the first time I’d ridden since June, so I was extremely excited to be getting back on a horse. As usual I rode Nelly who is a complete delight to ride! I went all medicated up as I knew that after not riding for so long my body was going to feel it afterwards. As it was the first lesson back, we did lots of exercises to get everything working. Riding makes me forget I am disabled, which is an amazing feeling. Feeling like a ‘normal’ person and being able to do something I am passionate about at the same time is something I am incredibly thankful for. Riding keeps me sane, the boost it gives me mentally plus the physical activity does me the world of good. The next day I was really feeling it in my muscles so I took it easy, but it was worth every ache and I cannot wait for this Thursday.
I have been very lucky that my spasms this last week have not been too bad. I have had the usual leg spasms but nothing seizure inducing. I have started having to wear at least one pair of socks on my feet as the drop in temperature has been enough to set my spasms off. It was a bit of a shock that it was getting that cold already but at the same time a relief knowing that some socks were currently enough to ward off cold triggered spasms.
Tomorrow my carers starts! I shall be having care two hours a day, four days a week, which will be fab as not only will I have company but things like washing my hair etc will become so much easier to do. I shall have 3 carers who will come in on different days, that way if one is ill or on holiday one of the others will fill in, which is great as it will mean someone who has gotten familiar with my condition is there and who will know what to do if something goes wrong.
I received a letter from my neurologist last week, which basically summarized our last appointment. I have waited for this letter so that I can take it to my GP with me as ‘supporting evidence’. The letter states that he is happy for me to IV antibiotics for my Lyme Disease, which is fantastic and much needed, it also asks him to refer me for Cognitive Behavioural Therapy for my seizures and neuro-physiotherapy for my Dystonia. I am hoping my GP will agree to arrange all three.
I am really happy at that moment and I feel that I am beginning to get things in place. I have had reflexology today so I am looking forward to a fab nights sleep tonight.
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