It’s been a few weeks since my last post, as some of you will know from my Facebook page I took time away whilst my son had a major surgery. Now things are settling again the posting schedule will be returning to normal.
So what’s been happening? My neurologist and I have been trialing different medications over the last three months to try and improve my quality of life, bring my pain levels down and reduce the number of Jaw Operations I have. We tried a number of different ones before landing on trihexyphenidyl. This medicine has been life changing. It’s drastically reduced the constant jaw spasms, and whilst they are still there the severity is reduced and manageable. We’re still playing around with the dosage to see how much further we can control my spasms. It’s been amazing.
I’m still waiting for a Barrium Swallow test to confirm my chronic Aspiration and give the dietician an idea of what thickness fluids need to be to help stop this. In the meantime the speech and language therapist is checking in regularly to ensure I’m doing ok.
Currently I’m waiting to see my Gastro Dr as my GI symptoms have returned. It’s extremely painful to eat or drink anything heavier than a cup of tea. I’m pretty much living off sugary tea in the meantime to get by.
On a more positive note I’ve just signed a three ebook deal for my young adult fantasy series which is very exciting. I feel very fortunate that this is something I can do from home while the children are asleep, as given the severity of all my conditions on my body a typical job is out of the question.
Finally I want to say thank you for the support I’ve received over the last few weeks. It’s been extremely touching. Now that this post is up and you are all caught up I’ll be back to posting my usual blogs from tomorrow.
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.
Today I moved into my halls of residence at Oxford Brookes University. Saying goodbye to my family was incredibly hard. On countless occasions they have helped me through painful spasms and watched over me during my seizures. However sitting here in my new bedroom now after promising my mum that I would be careful and look after myself, I feel immensely happy. I have been battling for three long years, but now that I have finally reached a place where I can cope with my symptoms myself most of the time, I have won.
I cannot wait for Wednesday when our introductory lectures start, but in the meantime I look forward to having some time to go out and explore Oxford.
The weather is getting colder and colder each day, and as my little Dystonia alien hates the cold and loves to spasms more I have been investigating different ways to keep myself warm, without looking like a marshmallow. I’m sure many of you know the feeling of when you have so many layers of clothing on, you begin to look less like a human more like a marshmallow. As I know many other Dystonia sufferers find the cold worsens their symptoms I thought I would share with you all my top three products that I have found helpful – and for those of you without Dystonia who are reading this, it may interest you as well, after all everyone likes to keep warm!
1) Tozies – I am one of those people who if my feet are cold the rest of me is cold. My reflexologist recommended I invest in some Tozies. Tozies are slippers which are double fleece layered, and without a hard sole on them. Not having a hard sole means I don’t worry about my spasms bending them out of shape. I have to say these are fantastic, I am actually going to buy a second pair, but this time a microwavable version for the really cold winter nights that leave you shivering. I wear my Tozies constantly, some nights I even sleep in them, as I find if my feet are toasty warm then the rest of me does not feel as cold. If you want to check them out here is the link to where I purchased mine http://coziewarmers.co.uk/ladies-slippers-shoe-size-3-12-22-c.asp
These are my Tozies.
2) Reusable heat pads – are my second favourite method for warming myself up. They are pads with a metal bit in, they come in all shapes, sizes and colors. When you bend the metal an internal chain reaction is set off which warms the pads up and causes them to harden. The warmth lasts for several hours. I have taken to wearing these pads in my shoes under my feet and inside my gloves. To reuse them you simply put them in a pan of hot water for a minute to return them to their original state. It’s a cheap, but effective method.
3) Thermals – Now I know saying wear thermals is an obvious one, but in all honesty how many of you actually remember to put some on under your clothing? I purchased some thermal socks, leggings and vests, and make sure I always have at least one, if not all, of them on. I got my thermals fairly cheaply off marks and spencers (you could probably get them even cheaper if you shopped around). It’s an obvious, but often overlooked, step to keeping warm.
I am always searching for ways to keep warm, to avoid the extra spasms that the winter brings. I hope some of these ideas helps those of you who find the cold causes extra issues.
On Sunday afternoon my ‘good leg’ spasmed for the first time. I choose to simply ignore this, as I was having lots of spasms and seizures as it was. Other than having the odd spasms in a toe or two yesterday, my leg and foot were fine, and I choose to completely forget about it, as I felt there was no use in getting wound up over something that may or may not cause an issue.
However I woke up this morning to the bottom half of my leg and my foot in spasm. I breathed through the spasm and tried to think of calming thoughts. Once it relaxed I once again pushed it to the back of my mind and tried to go back to sleep. However any chance of having a peaceful day was destroyed when I woke up. My step-dad had been accidentally locked himself out, so I got up to let him in. What would normally be a couple of quick hops on the crutches to the front door, took a painful minute or two. My left leg was spasming badly and I struggled to balance myself and avoid setting off a spasms in right leg.
A similar situation arose later in the day when I got up to go to the other room. I really struggled to move at all. Which sparked a great deal of panic in me. I rung my GP and left a message asking for him to call me back, I knew that he would not be able to offer much advice, however the question he asked in response to my statement about my leg was “are you able to eat?”. I now have an appointment to see him tomorrow morning, I hold little hope for this though due to his earlier comment, after all since when have I used my leg to eat?
I am trying to stay calm and have mediated several times already today, however I have not been able to relax. Part of me is worrying about how I will be able to mount when I go riding on Thursday (I am going to go no matter what and plan on medicating myself to the max) and another part of me is having a break down over the impact that this is going to have.
I have tried standing in different positions over the day and if I stand on the side of my foot then this works to a point. It enables me to hobble around a little bit but I have no idea what else do. My whole body is now completely out of my control and I cannot stand it. I do my best to try to stay positive every day and fight against the spasms, but I am beginning to feel like I have fought one battle too many and they feel like they are never-ending.
However despite all my pessimistic thoughts I refuse to give in, I will keep trying to find new ways to get around the spasms. In the mean time I shall occupy myself with hounding the NHS for some form of treatment as I’m beginning to feel like I am drowning in a sea of untreated symptoms. I do not want to spend my days in bed, I want to be out and about!
Today marks the beginning of yet another battle against my Dystonia alien.
After spending the last couple of weeks in a wheelchair, I have decided that I am not meant to be in one…EVER! I simple do not trust anyone pushing me. Now I know that no-one was ‘meant’ to be in a wheelchair, but I am honestly a control freak. Every curb, bump, lamp-post, person, etc, that appears sends me into a panic! I find myself constantly saying “please steer further away from the curb” purely because I am terrified of falling out.
I know that whoever is pushing me, is trying their best not to throw me out, or run into anyone/anything, but I panic anyway. I normally end up gripping the sides or leaning away from the curb, despite knowing that these actions will not stop me falling etc. I think most of my panic is because I know that if I was pushing the wheelchair, I would be an awful driver, so in my mind, everyone is automatically a bad driver.
However, I must admit, that despite my irrational fears when in my wheelchair, I have had a few amusing moments in it. Take for example, my mother the other day, deciding to run (whilst pushing me) down an aisle in Tesco singing the James Bond theme tune. It was a moment that had us both in fits of giggles.
My fear of other people pushing me in my wheelchair, has just increased my excitement at my upcoming treatment, if there is anyway they can improve my symptoms so that I am able to walk (even if its only for short distances) would be so amazing! I can only hope and pray for the best!
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