Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘Dystonia blog’

Leg Spasms; Lyme or Dystonia

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.

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Celebrating The Fabulous in Spoonie Life

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.

  1. 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.12583607_824636114328836_1166901021_n
  2. 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.12695785_835851056540675_1209977806_n
  3. 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.
  4. 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!
  5. 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.thumbnail_Regan Final Cover (2)
  6. 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.
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  8. 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.
  9. August 2016 – my partner gave me a key. I think I just grinned for the rest of this month.
  10. 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!
  11. 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.deacf0c45b71fe38bc45675bced94b07
  12. 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.15128841_1048302218628890_7420253256398203646_o

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.

Positivity Promising Proactive Prospect

Its been a few weeks since I blogged and it is hard to know where to start as so much has happened. I have had hospital appointment after hospital appointment, and I find that I am still trying to wrap my head round them all. I’ll keep todays blog brief and just mention a couple of appointments.Thankfully though my Dystonia has not been too bad as of late, my legs are tolerating my splints with more ease which is making life and physiotherapy much easier.

Last week I had an appointment at the Royal National Orthopaedic Hospital to see a specialist to do with my Joint Hypermobility syndrome, she has decided she wants me put on an outpatient program there building up towards being put into a 3 week intensive rehabilitation program. It was extremely a positive appointment that has left me feeling very optimistic. Joint Hypermobility Syndrome combined with Dystonia means my body can end up in some weird and wonderful positions, which can be rather painful, so I am hoping this program will give me some coping tools.

On Wednesday I attended a local private hospital that treats Lyme Disease to see if they would consider treating me. The Dr was rather lovely and very thorough in her examinations which left me feeling quite confident. They took blood to test for a number of things including Lyme Disease, and explained the treatment process if the results they needed came back. Having treatment through this hospital will be extremely expensive however you cannot put a price on health. Lyme disease has robbed me off so much of my life, and in many cases literally takes people lives, I don’t plan on being next. The NHS turning a blindeye on this condition will be one that in years to come they will look back on with regret.

This coming week is filled with more appointments. I am rather looking forward to seeing my neurologist, I am going to ask if he will botox my calf again and see if this helps with learning to walk!

Busy Bee

I intended to write this on Wednesday but this week has been extremely busy – I’m not complaining, I’m loving it, even if Benedict my Dystonia alien doesn’t. Between neurology appointments, college, horse riding and more college, I have been wheeling around like crazy, and sleeping fantastically well due to exhaustion.

I visited my wonderful neurologist on Tuesday, and got my six usual injections. Two to the eye area, jaw and neck. Receiving my injections makes me so happy that I have a trusting relationship with my neurologist, as I really dislike needles and would not let anyone else stick needles near my eyes! He even cracked a joke when cleaning the area with alcohol wipes that he was sorry it was not the good stuff…this really made me laugh as I’d just informed him I was going to try to come off some off my medications over the christmas period so that I could have a drink on christmas day, my 21st birthday and new year.

Whilst I was at my appointment my neurologist diagnosed me with chronic migraines. I have had what I thought were just normal but painful headaches for years. The opticians told me to tell my doctor but he just advised I drank more water which did not help. Recently I was having pains in the back of my eyes that have been so bad that I have had to shut them and go to sleep. I had been concerned that the pains were caused by my blindness, so have been relieved to have this diagnosis. He has promised to look into what treatment he can give me for them, so I look forward to my next visit.

Last week I hurt my back and neck when I had an episode of functional paralysis whilst sitting in my wheelchair – I ended up flopped out the side. This has resulted in a long recovery process. So I am extremely pleased that I have managed to cope with such a full on week.

Despite a repeat incident at college today, my back is not to bad! I find this reassuring as I hope this means that even though my Dystonia still acts up constantly, my body is finally getting used to all the extra activities I have started doing.

I feel like I have gone from drowning in this condition, to treading water, and now I have reached doggy paddle stage. I am not swimming up and down life like a good swimmer, but I’m moving around better, my head is firmly above water and I’m living life to the full.

Recovery & Sensation Overload

It never fails to amaze me just how long my body takes to recover from illnesses and accidents these days. Pre-Dystonia I was one of the those people who always had some of thing going on be it sinusitis or a broken bone, but I always bounced back. I fell and ended up in the hospital a week and a bit ago, and yet I still don’t feel back to my usual dysfunctional self.

Many Dystonia sufferers have informed me if they get an infection or have an accident it takes them longer than most to get back to their selves again. So I know I’m not alone, but its irritating. I’m still sore, tired and my spasms and paralysis are being triggered more than usual. I know I sound grumpy! I do not mean to, but lack of sleep and some new sensations in my legs have set my teeth on edge. At least I know I shall sleep tonight after todays Reflexology session.

A couple of days ago this new sensation hit my legs (knee down). It’s extremely hard to put it into words exactly what it feels like. It sort of feels like sharp pins and needles mixed in with a numbing sensation. I try my best to distract myself but the sensation is rather uncomfortable. Part of me wishes that it would hurt enough that my brain would disconnect from my legs so I that I would not be able to feel it just for a little while.

On a far more positive note I would like to thank the lovely people who have nominated my blog and Facebook page for a WEGO health activist award. It is extremely touching and uplifting! I have had a number of people ask me how to go about nominating me, I put it on my twitter and Facebook page, but for those who have not seen it, here is the link http://awards.wegohealth.com/ .

Life is a Lottery

I love this quote, and for me it rings true, I may only be at the beginning of my storm but I am already a stronger person for it. It can be applied to anyone and everyone as we each go through our own ‘storms’ at different times in our lives. The struggles we experience, no matter how big or small they are, change us. They allow us to develop and change so that we are stronger, so that we can carry on with our heads held high, it gives us the knowledge that no matter what life throws at us we can and we will beat it every time.

In life people always ask themselves ‘why me?’ or ‘why now?’, next time you feel like asking those questions stop and breath, understand that those questions will not solve anything. You just need to battle your way through to the other side of the storm. It will be hard, but if you give up, you won’t see the wonders that are waiting for you on the other side.

Life is truly a lottery, some of us soar through life with ease and others battle endlessly. However at the end of the day, what will be will be. All you can do is battle on with the knowledge that you are fighting for a reason, that things will get better, and you will conquer every storm life throws at you.

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