Tag: CIS

132 Acknowledge, accept, release and let go

Yesterday on Facebook memories, this picture popped up and gave me a huge emotional jolt.  It was taken in August 2016 on holiday on the Greek island of Santorini.  It was a wonderful holiday … such a beautiful place, lovely fellow travellers and it was also the last time I felt truly “well”. 


I’d had two MS relapses by this point and had fully recovered each time.  At this time I was diagnosed as having had two episodes of Clinically Isolated Syndrome (CIS) and advised that a further episode was very unlikely.  I’m not sure how two episodes can be defined as “isolated” and it doesn’t seem to fit with the information available online. 

MS Trust: Clinically Isolated Syndrome (CIS)

At this time I was also at a point in my life when I finally felt things were going well in terms of my career and income.  Back in 2002, I had become a single parent, following an unhappy marriage and very messy divorce.  A few years later, I stepped back from teaching for less well paid jobs in order to have more time for my children (at this time I felt I had to be mother, father and grandparents to my kids, which didn’t fit well with working up to 60-70 hours each week as a teacher). This was the right decision for us and I have no regrets about doing it, but it left us rather short of money for quite some time.  

By 2015, my children were both adults and well on their way to independence, so I’d gone back into teaching, working in a local authority team supporting the education of children in care.  It was my dream job!  My experience in the classroom and in child protection was put to good use, I was with a wonderful team of colleagues and I was back on a progressive career path.

My holiday in Santorini in August 2016 was one of the first proper holidays I had been on in years.  I was feeling good, loving life and feeling confident about the future.  

At the top of Nea Kameni, Santorini Caldera


A few weeks after my holiday, I had my third major relapse and have never fully recovered.  This led to further investigations, MRI scans, lumbar puncture and eventually a diagnosis of Multiple Sclerosis.  I’ve had a continual increase in symptoms ever since, with new brain lesions identified at each MRI scan.  My next scan is in September of this year … please send positive vibes, in the hope that there is nothing new found.  I need this disease to stop and to leave me alone to live the best I can, where things are now.  

In 2017, I was doing reasonably ok in terms of mobility and moved to my current home, which I expected to be my forever home, in the Summer of that year.  At last my life was settled … perfect job, happy home, kids doing great and I was earning enough to afford the odd holiday. 

Then it all came crashing down.  Three years on, I now find work an increasing struggle and have had to reduce my hours and miss out on promotion.  I live in constant fear of falling down my stairs and no longer even try to get things from the cellar.  My house is going up for sale again soon and I’m heartbroken.  But I need to live safely and try to find a way to manage, if I need to cut my hours further.  

I’ve had counselling recently, which has helped me to see that I need to allow time for myself to grieve and mourn for all that I’ve lost, as I’ve mostly not allowed myself to do this.  Then I need to accept things and move on.  I’m a naturally positive and cheerful person, but in some situations this doesn’t help … I think my positive, ”just keep swimming” approach has got in the way of me being able to mentally process everything. 


I’m still doing daily yoga (except on those exceptionally hot and humid days we’ve had recently) and finding this a huge help mentally and physically.  My current mantra is …


I’ve managed to see a few friends recently, which has really lifted my spirits, but as the threat of a second wave of COVID 19 increases, I am starting to be more careful again and I don’t think it’ll be long before I’m back in lockdown, even if the government isn’t saying we should.

I hope you are all staying as safe and positive as you can, while all this is going on around us ❤️

72 TLAs (Three Letter Acronyms)

I work for the VST as a TLC alongside some ESWs. We work with LAC (or CLA) and we are always ready to provide a quick response to NIC.  I have particular responsibility for EY LAC  and we have regular contact with professionals from CSC, SEN and BSS.  Acronyms are everywhere! 

The world of MS has them too, although most are FLA!  I thought I’d share a post about some of the acronyms and vocabulary used in MS. 

MS – Multiple Sclerosis

CIS – Clinically Isolated Syndrome: A single attack (or “Sclerosis”).  Many with MS are diagnosed with this following their first attack or relapse.  For some reason, I was initially diagnosed with two episodes of CIS (which seems somewhat contradictory to the meaning of the word “isolated”!).

RRMS – Relapsing Remitting Multiple Sclerosis: MS which is characterised by attacks or relapses alternating with periods of stability.  Some neurologists argue that! with MS, there really is no period of remission, therefore using the word “Remitting” is misleading.  I am currently recorded as having RRMS.

RMS – Relapsing MS: Being used by some neurologists instead of RRMS

PPMS – Primary Progressive MS: a presentation of MS characterised by continuous progression, with no relapses or periods of remission.  10-15% of new diagnoses of MS are of PPMS. 

SPMS – Secondary Progressive MS: around 50-80% of those initially diagnosed with RRMS will become secondary progressive at a later stage.  I recently asked my neurologist if I was secondary progressive and he replied “well, you’re certainly on your way there”.

https://youtu.be/CgQfI0ZFvoo

MRI – Magnetic Resonance Imaging: used to view the health of the brain and spinal cord to aid diagnosis and monitor progression of MS.

DMT / DMD – Disease Modifying Therapy / Disease Modifying Drug (These terms seem to be used interchangeably so I assume they have the same meaning)

NEDA – No Evidence of Disease Activity (what we’re all aiming for!)

HSCT – Haematopoietic Stem Cell Transplant

AHSCT – Autologous Haematopoietic Stem Cell Transplant: an Autologous Transplant is one in which the recipient’s own tissues are returned to the body.  Allogenic describes transplants where tissue is donated by another.  Allogenic Stem Cell Transplant is considered far too risky as a treatment for MS. 

CNS – Central Nervous System: the brain and spinal cord

CSF – Cerebral Spinal Fluid: This is the fluid that surrounds the brain and spinal cord.  CSF is extracted during a lumbar puncture (or spinal tap) and can be tested and examined in a number of ways.  Most people diagnosed with MS have “Oligoclonal Bands” present in the CSF at a higher level than in the blood.  I had a lumbar puncture in 2017 which identified the presence of oligoclonal bands and confirmed my MS diagnosis. 

PwMS – People with MS

NICE – National Institute for Health and Care Excellence 

EBV – Epstein-Barr Virus: A common virus that causes glandular fever. I have included this as there is growing evidence that exposure to EBV may be a contributing factor to developing Ms for some. 

EDSS – Expanded Disability scaled Score: Used to measure disability in MS. A recent neurologist letter records my EDSS as 6, however I feel it is nearer 5.

TTFN xx

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