The title says it all. I am filled with relief. I have spent the last week hardly sleeping, overthinking and consumed with dread at today’s hospital appointment. Good news for a change though. I do not have MS! The Dr was uncertain as to whether the issue with my sight is being caused by inflamed optic nerves or inflamed retinas, she’s leaning more towards the problem being with my retinas. Because my left eye, which is my ‘good eye’ also shows signs of being affected I have been prescribed a 3 week course of steroids to help speed up the recovery process.
Emotionally I feel drained, and a lot of sleep needs to be caught up on but I am thrilled to know what’s going on with my body and that it can be sorted! This evening is being spent recuperating with Harry Potter, and dairyfree chocolate. What more can a girl want?!
I learnt many things from Harry Potter…this was one of them.
Since I last blogged things have been hectic. I have spent the majority of my days either at the hospital having various investigations carried out, or on the phone to them chasing down followup appointments. This week I have had more bloods taken and an MRI of my brain, eyes and spine with contrast performed. Tuesdays MRI experience seemed a bit surreal. It took 35 minutes, three medical personnel and 7 attempts before I was successfully cannulated as my veins were up to their usual disappearing act. This time allowed for me to internally become quiet anxious at the thought of being in the MRI machine for a minimum of an hour – in the end it was about one hour twenty. I am generally not a claustrophobic person, but this machine brings that fear out in me, this is most likely exacerbated by the fact that I have to be strapped to the table to ensure my spasms cannot move me around to much and distort the images.
Taken just after escaping the MRI machine
My stress levels have been through the roof this last week. I have fought so hard over the last four years to be put on a medication regime that allows me to have more control over my body again, and live a relatively normal life. The mere thought that my body may become more of an issue again is distressing. However I am lucky that I have a good support system in place, my family help keep me distracted, my boyfriend is great at talking through my concerns with me, and my councilor has been a fantastic space for me to vent and explore my frustrations at my faulty body.
Relaxing in Costa after a long day of tests at the hospital
I get the results of my MRI on Monday. So I shall know then whether more investigations need to be carried out or if it is MS.
My body going wrong is something I have become rather used to over the last four years. Each time something starts functioning abnormally I find myself less and less surprised. Over the Christmas period I lost my sight in my right eye, and had some issues with my left one too. After spending the majority of my time at the hospital for three weeks I was eventually prescribed Doxycyline for a Lyme Disease flare up. This treated the issue, and everything returned to normal. I was discharged and told they would keep an open door policy for me. Foolishly I presumed that I would not need this and promptly went back to living life.
On Saturday I visited my local opticians. I had noticed that my glasses were no longer helping with my sight, my right eye had begun to get painful and was not focusing properly. After repeating over and over again the eye exam, and consulting his colleagues, the optician asked me to come back today. This was so he could redo the test and in case a miracle happened and my sight improved over the weekend.
There is something rather unnerving about watching a professional get more concerned with each passing moment. At the end of today’s exam, he turned around and asked me who would see me sooner, Eye Casualty or my neurologist. This instantly had me on edge. In theory Eye Casualty will see me quicker, as my neuro is not due to see me until the 6th June. The poor man and his colleagues could not comprehend how I had managed to not notice the dramatic deterioration in my sight. I laughed in pure exasperation at this comment, trying to explain that my body functioning abnormally was something I was used to, so it had not struck me as something to worry about. So off they sent me with an urgent referral in hand.
Upon getting through to Eye Casualty the nurse asked if I had been seen by the John Radcliffe yet. I had no idea that I was being referred to them so queried it, only to have her respond with well because of your MRI results. Excuse me? I had been informed that my MRI was clear. This took her by surprise. She has decided to wait till five to try and speak to the consultant who saw me over the Christmas holidays.
So now I’m sat by the phone waiting for her to call back as she hopes to squeeze me in tomorrow. I’ve gone from being relaxed about it all to rather nervous.
After a year and a half of waiting tomorrow I am being admitted into The Royal National Orthopedic Hospital Stanmore for intensive rehabilitation for my Ehlers Danlos Syndrome Type Three. I am a mix bag of nervous and excitement. From talking to previous inpatients of the program it sounds extremely positive and successful. There are many different components to the rehab, such as hydrotherapy, physiotherapy, pain management and sessions with psychologists. On the most part I am very optimistic, my consultants all feel that the treatment should offer significant improvement.
The only part of the program I am wary about is the psychology sessions. If I could opt out of these I would. Now I shall be sensible and fully cooperate with them but I can’t help my reluctance. I have had years of sessions with varying types of psychologists. Since I have been ill I have had specific sessions with cognitive behavioral therapists to attempt to control my seizures, however out of the three therapists I have seen only one has looked at me holistically. Due to this my file now contains a note from my neurologist instructing therapists not to focus on my past and informing them it has no impact on my medical situation. Click on VLOG and blog for more info. However, many therapists choose to ignore this. Whilst I am sure the psychologists I am going to be seeing over the next few weeks will be lovely, I worry that they will be like the many I have seen before.
I get admitted at 8:30am tomorrow morning, so it’s not long to go now. My neurologist is convinced it will make a huge difference to my jaw and I’m keeping my fingers crossed he is right.
Today is my first appointment with a new neurologist. I was meant to have another appointment with my wonderful consultant on the 29th of this month. I had a phone call the other day telling me he had left earlier than planned and that my appointment needed to be bumped up to 3:40pm today. So here I am now sat in the café of the hospital, coffee in hand, desperately trying to not freak out.
I brought one of my favourite books with me, Twilight, to help pass the time. However sitting here observing other patients around me, who are also in various states of unease, I can’t help but feel trapped. I know that my anxiety is mostly likely heightened by those around me, yet even knowing that doesn’t quiet the voices in my head. Will this be one of an endless list of consultants? Will he give me the time to ask my questions? Will he aggravate my CRPS?
My first thought is to leave, and hop on the next train home, and just put up with the increase in spasms. Crazy I know. I doubt I’d make it two months before I’d be back begging for my injections. I know that life without my botox is not worth it. It is not a life. It is ambulance trip after ambulance trip, and I won’t go back to it. So where does that leave me? It leaves me cowering over twilight determined to loose myself in its love story.
Botox makes the biggest difference to my life. But the administration of it terrifies me.
Before I became ill I frequently had periods away from home. Whether that was holidays with friends, slumber nights with mates or living in halls at university during term time. Having independence rudely snatched away by Dystonia has been something I have had difficulty adjusting to. To a degree you could say I have refused to adjust to it and have enjoyed pushing my boundaries even if they landed me in hospital.
At times rolling over, bowing down to my alien and declaring its victory, has been tempting. However I’m a stubborn person, a trait that I am rather sure is one of the reasons I have come as far as I have in my battle against my many illnesses. Up until this weekend I had not spent a night away from my family (my mum has always slept at the hospital with me) due to the severity, complexity, and erratic nature of my health. Over the last year we have finally found a combination of medication and regular injections that has helped to manage my symptoms enough to give me a better quality of life. So I decided to embrace this new found stability (though I shall admit I still have some unexpected moments, and have almost hit my boyfriend on a few occasions), and spent the weekend in Manchester visiting two of my old flatmates.
My flatmates Emily and Rachel are very close to my heart. I see Rachel several times a month as we live seconds away from each other still, but Emily I haven’t seen since 2012 though we have kept in touch. They were both there for me in uni when my body started going downhill, and have spent numerous occasions in hospital with me at silly o’clock in the morning. To have my first time spent away from my family be with these two girls meant a lot to me. It was also quite reassuring as they have both done their nursing training, so I was in safe hands!
Today I am shattered, after a full on weekend with the girls, a subtle reminder that although it feels like no time has passed since we last were all together I’m slightly more fragile than I was back then.
When ill with any condition it can become very easy to allow yourself to be wrapped up in the negativity of it all. Recently I slipped, I fell off the positivity bandwagon if you will. I don’t think this slip is necessarily a bad thing. After all it is only natural that in life we have our highs and lows. Ironically it was Dystonia that reminded me to try and see the positive that does exist within and around the condition again.
My left arm and shoulder spasms/twitches rather violently, flinging itself out to the side. I always hope silently whenever this happens that nobody is within hitting range. I have had one to many awkward apology conversations following such a spasm. It was following a rather forceful one in a hospital Costa last week that I found myself out of my chair and on the floor, slightly stunned, sore and in a complete fit of giggles. A small part of me knew that one flailing arm had tried to grab the table, in a useless uncoordinated attempt to stabilise myself.
This incident was exactly what I needed to break the haze of negativity that I had cocooned myself up in since my Complex Regional Pain Syndrome diagnosis. I had forgotten to tackle this condition with the same approach I had the others. I was frankly too scared, I know how bad the pain can get and even though I am not at the same pain score I was in 09, mentally I jumped ship. Embarrassing myself by ending up on a busy Costa shop floor was the exact laughter filled wake-up call I needed. As much I crave a life without chronic illness, my Dystonia never fails to provide laughter, I’ll give it that much.
The last week and a bit I have had a bad cold, which would normally be fine but as I have mentioned before Dystonia tends not to react well with other illness even if they are just small things like colds. This has resulted in a week full of a variety of spasms and a handful of pain triggered non epileptic seizures. My jaw has tremored quite a lot, I can only presume that the pressure in my sinus area has aggravated it and this is why it has played up more than normal. This in particular has caused the most pain as often my tongue gets bitten in the process.
In spite of feeling under the weather and my Dystonia alien being more mischievous than usual I managed to sit outside the house and enjoy the sunshine. This may sound rather simple, but it involves quite a maneuvering process as our house is not very wheelchair friendly. I normally don’t try to get out the house unless I am actually going somewhere as its hard to do and rather painful.To actually have achieved this without ending up in a hospital A&E department was extremely satisfying. I love being out in the sun, even if it is just for 20 minutes, it’s a nice change from being inside. Even though it’s a very simple achievement it is one that I am celebrating.
I’d like to start this post off by apologizing in advance if bits don’t quite make sense. I have a fair bit of medication in my system and I am having to concentrate very hard as I do not really feel like I am with it today. Over the last few days my body has been very interesting. I presumed it was just in meltdown mode after the trip to London and back for my Botox injections last Tuesday. My right leg in particular has been bad. The spasms have been impressive but rather painful. I have found myself repeatedly over the last few days in the position in the photo below. which I can assure you is not a comfortable one to be in.
Last night my body did full body twitches, which was a new symptom for me, however this did not seem to stop, then my leg joined in spasming repeatedly into the above position. However several times whilst in that position my hip spasmed in one direction and my lower leg spasmed in the opposite direction. This caused agony, and according to my family they all heard a cracking sound. I then started to have lots of my Non Epileptic Seizures. In between seizures when I was spasming we tried administering our crisis medication, Tramadol and diazepam, but this did not seem to touch the pain or the spasms, which meant that an Ambulance had to be phoned.
The paramedics, Gareth and Amanda, were two of the nicest people I have met. They helped keep me as comfortable as possible, which is saying something considering the amount of pain I was in. It was decided that I needed to go to hospital to have my leg checked out as it was swelling and they thought I had torn a ligament. In the end they gave me IV morphine which made me slightly sleepy and giggle, to helped ease the pain enough to transfer me into the ambulance safely, where they then gave me Gas and Air. I now understand why the women I looked after on the labour ward loved the stuff so much. At first it had me creasing up in laughter like a crazy woman, eventually I then thought I was dreaming the whole situation, which was when we decided I had maybe had enough of it. I have to say I was so impressed by the standard of care they gave me. They didn’t know anything about my condition, but they treated better than half the previous doctors I have seen!
The doctor Teeto and the nurse Precious in charge of my care, were again wonderful people. I feel extremely lucky to have been under the care. Teeto actually knew a fair bit about Dystonia and was not fazed by spasms at all. He quickly had me sent down to x-ray to make sure I had not broken my knee, where I had some more seizures on the poor woman as she to move my leg about. Thankfully I have not broken anything!! I have just damaged and pulled some of the bits in my leg. Teeto, sent me home with a box of Diazepam, his plan is for me to take this at regular intervals over the next few days, in the hope it will break this new spasm cycle.
Whilst I am in a lot pain now, and feeling rather spaced, I am so thankful that I was under the care of four such wonderful people last night. They were all so caring, and you could tell really wanted to help stop my pain and spasms. It is amazing the difference incredible people like these can make during times when you are in agony!
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.