I had really debated whether or not I would post this blog. As you will know over the last 7 years I have strived to share the ups and downs of my journey with you all in a brutally honest fashion. However what I am experiencing right now is something I am finding to be increadibly difficult to deal with and awfully humiliating at times. However as I have found in the past that ripping the metaphorical band aid off and sharing bluntly with you all to be rather helpful I figured I may as well start at the beginning.
I shall try to keep it brief. About three weeks ago after several days struggling with a dislocated jaw and severe spasms to the point I couldnt eat or drink I collapsed in the kitchen. The resulting head injury leading to an ambulance needing to be phoned. Several seizures later I was whisked off to resus. I dont remember much of the first four or so days in the hospital. Luckily despite being severly ill I had the sense to keep notes of my concerns, for example being denied antisickness and painkillers following several hours of vomitting and seizures.
For some unknown reason that was never communicated to me all of my medications were stopped the whole time I was in the hospital which led to uncontrolled seizures, spasms and pain. My kidneys were found to be damaged, there are changes to my spine and in my brain matter, I have been diagnosed with epilepsy. Twice whilst I was in there I had an NG tube placed and failed. Unfortunately the second time round it took the drs 6 hours to view the xray showing it misplaced. In this time I was quite distressed due to the fact I was violently vomitting blood due to a tear from the ng in the lower eosphaoghes for the better part of the 6 hours all with a dislocated jaw. A rather agonizing experience.
Throughout my 6 days in hospital I was on IV fluids 24 7 due to the fact I currently am having extreme difficulty swallowing and can go days at a time unable to do so. At the point of discharge I had managed a few sips in a 3 hour period and was discharged with no plan of action. Its been a hurrondous time since then with me only getting worse. However I am now also completely bowl incontinent which has left me terrified to leave the house. But being the mum of a 2year old means fear cant win.
Hopefully I’ll have a more optimistic update soon.
After Tuesday nights functional paralysis drama, I am pleased to report that my little Dystonia alien has not scared me witless with a repeat episode (so far). In fact other than a light and pain triggered seizure whilst at college yesterday, I have been rather good. I even managed to go riding on Thursday!
I spent Wednesday in bed resting, as I did not want to trigger off any spasms or seizures as I desperately wanted to attend both college and riding on Thursday. Amazingly my Dystonia gave me break from the recent dramatics and I only had to contend with my usual spasms. The normality of the usual spasms were a much-needed breath of fresh air. Both college and riding went fantastically well, with my spasms only acting up right at the end of riding – thankfully that was perfect timing,
Yesterday, for several hours my legs were functionally paralysed, this did not scare me as I am used to this happening several times a week. It turned out that it had been triggered by me strapping my splints to my legs too tightly – but hey its a lesson learnt. I now know to always check the tightness after strapping myself to them. I had a little light and pain triggered seizure whilst I was at college yesterday. I feel very lucky that the college dealt with this calmly and once I regained consciousness they let me carry on as if nothing had ever happened, which is just how I hoped they would react.
Today my body is extremely sore and I am experiencing an on/off functional paralyses to my legs. Therefore I am having a lazy day in bed. I am so happy that I am managing college and riding. I had been worried that the two would be too much for my body to cope with, but so far so good. It is days like the last few that remind me that despite being in a wheelchair and not really having control of my body, I can still make a life for myself and enjoy the things I love. I just have to remember to balance things out… I’ll get the hang of balancing eventually 😉
My little Dystonia alien has been a right pickle to put it politely, for the last two days. It is doing a new spasm, which whilst I can bear it at first eventually becomes agonising. It’s one of those spasms that makes me welcome the bliss of unconsciousness that my non epileptic seizures bring. During the seizures I am completely out of it and unaware of any pain, whilst normally I hate these seizures the last two days they have been a welcome and needed break from the spasm.
My normal method of using a TENS machine, massaging the spasming muscle etc have not made a difference to this spasm. Therefore I have relied on topical medications such as volterol and oral medications such as Tramadol and Diazepam, to help me through the spasms.
Whilst these are not the best pictures you get the idea of what the spasms were doing. I am not sure what triggered this spasm to develop and am hoping that my body is fighting a bug and that is why my Dystonia is playing up. Illness always seem to worsen my Dystonia, which in this case would be a nice reality compared to the horrid thought of the spasm being here on a daily basis.
I am determined to stay positive and am focusing on all the fantastic activities starting next week, such as riding, and my reflexology training. I am extremely excited as I have had an email saying my text books are on their way. I love burying myself in a textbook so I’m looking forward to their arrival.
I am hoping that the spasms will stay away for the rest of the night so that I shall get a good nights sleep as I am completely exhausted. It is amazing how tiring being in pain is.
The ability my Dystonia has to twist my body into any position it desires never ceases to amaze me. Having hypermobility syndrome aids it somewhat. The two conditions are both painful and amusing. Over the last year my body has got itself into positions that are simply not natural. I always knew my hands moved in ways that were not normal, but never realised that the rest of me could.
Some of the positions Dystonia has put me in has reduced me to tears of both pain and laughter. Take for example last October, I ended up on the floor doing the splits, something that I had never done before. A month or so ago, the spasm in my leg caused my leg to turn back to front, a movement that shocked those around me and triggered a non epileptic seizure. At other times it has caused slight embarrassment, but this is something I accepted as part of the Dystonia parcel a long time ago.
This evening I was crawling to the next room as I did not want to use the wheelchair, my right leg quickly spasmed sideways, I ignored it as it was not preventing me from moving. However whilst I was crawling through the doorway my hip went into a spasm causing my spasming leg to shoot up and my foot to become caught under the door handle. Both my mother and step dad came to help me. My mum supported me incase I had a seizure and my step dad wrestled with my spasming foot to free it. I was on my hands laughing. The situation was ridiculous. At 20 years old I am crawling around trying to have some sort independence yet even this simple act is not alway possible. It is so ridiculous that I did not feel cross or upset, all I could do was laugh it all.
Throughout the last year my spasms have shown me just what my body can do, and it amazes me. I often joke that I would make a fantastic acrobat or ballerina. Though the spasms cause pain and pull my muscles, I refuse to let it get me down. Instead I see it as a strange talent that provides entertainment for all.
After all why cry when you can laugh?!
Yesterday I phoned the Breakspear hospital in Hemel Hempstead which has a reputation for being fantastic at treating Lyme Disease. It is unfortunately a private hospital so is costly, however my health means a lot more to me than money. I spoke to one of their patient liaison officers about what I was aiming to get from the appointment, specifically the information I need as to exactly what medication I need to be taking and in what form, such as oral or intravenous, so that I can go back to my GP and ask to have the treatment done on the NHS. The P.L.O reassured me that they could tell me all of this in the appointment and that it was up to me where I seek treatment afterwards. I am hoping the NHS will treat me but if not I shall use this hospital. I am very lucky that I don’t live very far away from it.
As I did not want any tests done whilst I was there they are able to see me on the 7th August. This is fantastic as they originally offered me an appointment for the end of September. I am slowly composing a list of questions for the Specialist, as I do not want to forget to ask something vital whilst I am there. I am really looking forward to this appointment and hope it will be all I want it to be.
This morning i went blind and as usual due to the pain it triggered off a seizure. Unfortunately I was sitting a little too close to the edge of the bed and seized off it on to the floor. I think I hit my head on my scales as when I came round my head was really throbbing. My body did not take kindly to my fall and has since played up for the rest of the day.
This evening my poor mother has spent hours in my bedroom looking after me and preventing me from having another fall whilst my whole body spasmed and I had many seizures. My Non Epileptic Seizures really take it out of me, and as a result they leave me wanting to just curl up in a ball and go to sleep. Tonight I am feeling more tired than usual but I think this is because I had to take a diazepam to try to control my spasms and seizures.
Despite my body misbehaving today I am still on a high from Tuesdays consultant appointment and from the excitement from my upcoming appointment with a Lyme Disease Specialist. Things are finally looking a bit better!