Posted in Archive, January 2017, September

So This Is Happening…

So, this is happening…Due May 2017.


As some of you may remember, a couple of months ago I blogged that I was off all my medications and was learning to cope without them. Many of you noticed that I was very vague with my answers as to why myself and my neurologist had made the decision to do such a thing. After all, I’m normally complaining about my treatment being administered late. At the end of the summer I had the biggest surprise when we found out that we are expecting our little boy! Whilst very exciting, this meant a frank discussion with my neurologist about the available treatment options now open to pregnant me. There have been very limited studies done on the medications that I take for my varying conditions in relation to the safety of them in pregnancy, so a decision was made for me to come off of all my treatments and we would judge where to go from there.

I am extremely lucky to have a wonderful neuro who doesn’t mind me/my local hospital inundating him with emails and phone calls as my body plays its usual tricks. Although my body has been misbehaving with varying spasms and dislocations, the pregnancy itself has been progressing well. Due to having a whole host of conditions that are on the rare side of things, I have been under the care of a specialist maternity unit. It’s been fascinating seeing how they respond and their treatment suggestions; and very positive, as for a change they understand one or two of my medical conditions.

Despite weeks of horrendous 24/7 sickness, a spell in the hospital due to my Dystonia going on the rampage and a whirlwind of further hospital appointments as my body learns new tricks, I have continued with my university studies and plan on continuing into my 3rd and final year after the baby makes his appearance.(Thank Goodness for a uni with a fabulous disability team and amazingly supportive lecturers).

I’m looking forward to blogging about Dystonia and Me’s, and bumps adventures.


I'm 27 years old, a mother, author, partner and spoonie. I suffer from Dystonia,POTS, EDS, Osteoarthritis and Lyme Disease. I have set up my blog to help spread awareness and bring light to this condition. This blog will be full of all my experiences that happen during my dystonia and chronic illness journey, from natterings, musings, moans, laughs, highs and lows. :-) It will be a little bit of everything

11 thoughts on “So This Is Happening…

  1. My daughters whose 28 has recently been diagnosed with cervical dystonia and I’m looking for all information I can get. I wish you the best with your pregnancy.


    1. I’m sorry to hear about your daughters Diagnosis, if you head over onto my FB page Dystonia and Me you can drop me an email with any questions and i’ll do my best to answer them


      1. Hi my name is Susan , I have cervical Dystonia with many secondaries. You have a great site with useful information, I’m 62 years , and can’t remember in the last 17 years having rest front shaking , I like to keep fit , but my husbands poorly and I don’t get out as much has I used too , today I took my teenage grandchildren swimming. Gosh I injoyed it , my voice shake was worse after and neck, but mentally I feel life’s more worth living , love all you guys totally understand this nightmare we are all going through , with little help , I have a great Nuro Doctor , but the system let me down this time I’ve waited since August for my injections and the pain and shake is dreadful , making a lady in a shop CRY for me , being so strong , God bless her ……….look after yourselves and a joyous New Year to ALL. Sue J X


  2. I’m so happy for you Rebecca, it’s just wonderful to hear your lovely news!! Hope your pregnancy is going well and Benedict is behaving himself. Many congratulations xxx


  3. Wow, didn’t see that one coming but Congratulations. You and Damon must be so happy. I’ve been reading your blogs for a while and as a fellow spoonie/dystonia sufferer i just wanted to let you know how much I enjoy your blogs. You not only bring a unique insight into the turmoils of living with a rare pain in the arse disease, but you infuse it with a positive twist and high light the triumphs you have. I hope you blog throughout your pregnancy because I think that will provide an even more interesting aspect into it all, as many other dystonia sufferers i know, including myself, struggle with the thought of being pregnant.


    1. Thank You for your congratulations. I’m glad that you enjoy reading my blogs, but am sorry that you to live with this condition. I shall most definitely be blogging about the pregnancy and it’s effects on my health. It’s been an interesting 5 months so far. xx


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