Back to normality ooop there goes gravity

I have been back at work for the past two weeks now and have really pushed myself back to ‘normality’. Pretty certain my balance and coordination was still a little ‘off’ when I first got back into my 12 and a half hour nursing shifts, however, onward and upwards is my new favourite motto. I also recently started taking fitness  classes (Konga, Zumba, Rockout workout) which have been absolutely fabulous for mind, body and soul.

So work haven’t been the most understanding and it’s taking me an age to get an occupational health appointment, self- referral may present a faster route than my manager (charge nurse) referring me. I keep having to tell my ‘story’ to my colleagues when they act concerned, asking why I have been off. Doing so feels like indulging in self-pity once again which makes me feel guilty and sad. I don’t want sympathy but at the same time I felt like I had to explain (especially at first since I still didn’t feel completely, 100% recovered (I now do)).

Work also told me I had IV training the Friday before last. So get this!- we’re meant to have two weeks notice to fill out a chunky calculations book- this I didn’t know about and the IV training I was meant to attend was the following Monday. So I lit had two days to fill out this workbook I never knew about and to add insult to injury I was working day shift Saturday and Sunday. I ended up having to go back to the ward and work a 12 and a half hour shift there because I was being put on the course in place of another staff nurse so they never had a record of my name.*face palm*

My thoughts and feelings have been very ‘up and down’ these past few weeks. At present I feel emotionally stronger than ever. I have read somewhere that emotional lability can be a symptom of clinically isolated syndrome/multiple sclerosis. I guess deciding whether that’s cause or effect is challenging though.

I feel sad and undeserving when explaining to colleagues what I was off with. I think I feel frustrated at myself for something that was beyond my control and for what I perceive as ‘letting my team down’ by being off work and perhaps leaving them short. Maybe that’s a sign of the times in the NHS and the result of pressures felt at all levels.

I think these feelings are natural to experience after a neurological episode. Everyone is wrapped up in their own issues and in such a fast-paced work place there’s really no time for special allowances or much compassion for other staff members. Plus I don’t want to be treated out of the ordinary because I look and feel fine now.

My action plan is to be positive, get an occupational health appointment if only for the sake of having a paper trail and to keep doing what I’m doing- healthy living and taking Vit B12, Calcium and magnesium, Ginkgo biloba, Omega 3 and Vit D.

I’ve not really gone in to too much depth in this reflective account because after feeling so vulnerable throughout this period, I’d rather not drudge up all the negative feelings that I had been experiencing but I feel it’s important to write a blog and keep track of my progress. Peace out.

First line MS medication

 

UPDATE:

So yesterday I had an appointment with the neurology consultant and now have an appointment on the 16th of May at an MS clinic and I have my MRI (spine) tomorrow at 15:45.

The neurology consultant says although they cannot officially diagnose me with MS yet, he’s convinced I have MS from looking at my MRI (head) and my presenting symptoms (even with me insisting I now feel fine). He told me to tell my travel insurance that I have MS so that I won’t incur extortionate expenses if anything was to happen upon my upcoming visit to California (I live in the UK so I am fortunate enough to have use of the NHS). He suggested I look on the official MS website and decide the first line medication I would like to take to prevent progression. So this is my overview:

Why start early treatment?

I was shocked I would be considered for early treatment given that I don’t yet fully view myself as someone living with’stereotypical’ MS and possibly haven’t yet come to terms with the reality of it. So why start early treatment? Well..

• It improves long-term health and well-being
• Slows down the build up of irreversible damage
• reduces the number of relapses

(MS Society 2017)

Why aren’t more people taking Disease Modifying Therapies (DMT’s) ?

• Access to DMT’s in the UK is low
• The UK employs less neurologists in comparison to other European countries so it stands to reason that people living with MS  in the UK may not be able to spend adequate time discussing treatment plans

(MS Society 2015)

DMT’s and clinically isolated syndrome (CIS)

A study into the use of interferon beta-1b in Clinically isolated syndrome showed that it reduced the risk of conversion to definite MS by 37% in early treatment.

The use of Teriflunomide as a treatment in people after a first episode suggestive of MS was found to reduce the conversion rate of clinically definite MS and the number of new MRI lesions.

Treatment was found to preserve the brains grey matter and cognitive function.

(MS Society 2015)

The Numbers 

82% of people with CIS and an abnormal MRI go on to develop clinically definite MS.

Overview

So there we have it. I have an 82% chance of developing clinically definite Multiple sclerosis. I’m surprisingly fine with that. I am a registered nurse and so I have a bit of background knowledge already (although I am no expert). I have treated some of the most resilient people with multiple sclerosis (perhaps effecting them to a greater extent than it ever will effect me) and they give me hope. It doesn’t have to be bad and it is certainly not a ‘death sentence’. Life is what we make it regardless of our situation.

References

MSSOCIETY. 2017. Early Treatment [online]. [Viewed 3rd March 2017]. Available from: https://www.mssociety.org.uk/earlytreatment

MSSOCIETY. 2015. Time to act- a consensus on early treatment [online]. London: MS Society. pp.1-10. [Viewed 3rd March 2017]. Available from: https://www.mssociety.org.uk/sites/default/files/Time%20to%20Act%20-%20a%20consensus%20on%20early%20treatment.pdf

 

 

 

My brain malfunction

Hi all,

I’ve decided to start writing a blog. My main reason for starting this is because I have had a tough couple of weeks…

Me: I am a newly qualified nurse working in a medical admissions unit. I am in a long-distance relationship with my boyfriend of two years. I was just accepted into a MSc in Advanced nursing practice at a top uni!! and I have just been diagnosed with Clinically Isolated Syndrome (which is related to the development of multiple sclerosis).

So, in this blog I hope to note my thoughts/ feelings/ research and changes I am making to my lifestyle in light of recent events.

I had been feeling a little overwhelmed and stressed in my new RN role . This is due to a multitude of factors: the patients I care for have a very diverse range of illnesses, I often care for people who are acutely ill, the patient turnover is very high and I work in the NHS. To give some insight, a few people have referred to working in MAU to start as ‘The baptism of fire’ (perhaps a little extreme). There are definitely things I could have done better in my first couple of months of working there in relation to my own health and well-being. I have realised that you are no use to anyone if you are overly tired/stressed/hungry. I often miss my breaks which is no good- I need breaks to do my job well. I can not skip meals or eat quick, crappy foods if I want to have adequate energy.

My Horrific week

Night-shift 1

I was actually excited to see that I had been allocated to my first set of night-shifts. In my student days I was always a bit of a night-owl and seemed to cope well with night-shift and with MAU being so busy throughout the day it would be a nice change to still be busy but not have the added stress of speaking to worried relatives. I could focus more on patient care.

My first night-shift went well. I was constantly kept on my toes but I had more time to thoroughly update patient notes and do my job well. I remember feeling a little bit off-balance but I put it down to tiredness and the fact that I had started a trial of contact lenses to correct my astigmatism. After handing over my patients in the morning I did notice the unsteadiness in my visual field- looking back, I almost felt drunk and a little muddled.

I phoned my mum as I walked to the train station at 8 in the morning. After a brief moment of small chat, I asked ‘It’s totally normal when you’re tired to have fuzzy vision right? Do you ever get that?’

I got the reassuring answer I was looking for. Must just be tiredness I assured myself as I looked over to my right crossing the road not being able to tell the precise location of the car driving past me. Deep down I think I knew something wasn’t right but I hoped I could sleep this episode off and carry-on as normal. It must be these new contact lenses, I’m definitely wearing my glasses tonight I thought.

Night-shift 2

Boarding the bus on the way to the hospital, I called my boyfriend. He is UK born but now on Californian time and has a background in neuroscience. I was becoming increasingly worried about my vision issues and wanted to get his thoughts. He, like me, had a suspicion it may be my new lenses as that was the common denominator of things that had changed before I started having problems. I’m so thankful for his support. He pushed me to make it strongly known to the shift coordinator and nurse in charge that I was having double vision.

I did this and was asked if I thought I would be able to work the shift. I said I would be able to work the shift ( in hindsight I shouldn’t have). Luckily I was given extra support from a very competent student nurse who put herself forward (thanks!). My thinking was muddled, balance/coordination was off, my eyesight deteriorating and something that felt like it could develop into a full blown migraine. By goodness I was glad when I’d finished handover. Feeling a little sorry for myself, I mentioned to the nurse I was handing over to that the night-shift had been fine but it had been a struggle to concentrate as I had bad double vision. I think she was trying to be positive and reassuring when she confided in me that sometimes she gets double vision too. I think I knew what she meant but I knew this was different.

Getting changed out of my uniform, I looked in the mirror and the sight made me cry. I could look into the mirror with my right eye and see that my left eye was not in it’s rightful place. Instead it was facing outwards, I had some control though- I could make it wobble back a bit. At this point I was a wreck- walking to the train station, I phoned mum in floods of tears. I had to get to my optician. Fast forward a few hours and a coffee and chocolate cake later (optician opened at 10am). I was triage’d by an optical assistant who I’m almost certain I overheard describe my eyes as ‘really weird’ to the optician. I’m not one to be easily offended and I’m sure she didn’t mean it as such but it made me feel like more of a spectacle than a person with a serious eye issue.

The optician was great- he assessed me straight away and quickly referred me to the Eye Pavilion (specialist eye hospital). I had an appointment for half one that day. I was assessed at the eye pavilion by an orthoptist and given tape for my left glasses lens. I was then seen by the ophthalmologist who was an absolute god send through out this entire journey! After having another two eye specialists inspect my eyes, they concurred that the best plan from there was to have an MRI scan.

The ophthalmologist kept in close contact with me and was absolutely excellent. She referred me to neurology and was in close contact with the team there. I received a phone-call from her when the report of my MRI had been confirmed. My MRI has shown areas of demylination in my brain. This is what I understand from this: This means that the ‘insulation’ effectively for the wiring in my brain has broken down in some areas due to an autoimmune response. The body can rebuild myelin (just not as strong as before) and there is a 1 in 5 chance that it will never happen again. If an episode happens again and new lesions appear that is when it becomes multiple sclerosis.

I was shocked to find myself so relieved at having a name for what I was experiencing. Clinically Isolated Syndrome. It was a huge weight off my shoulders in just knowing more about what was going on. I have been out of sorts and after having taken steroids (methylprednisolone), my vision has improved. My balance still seems off and my thinking is rather slow and muddled compared to normal (unsure how much is psychosomatic). I have another neurology appointment soon and I’m taking it easy at the moment but hopefully will be back at work soon!