135 Updates – work, home, HSCT

Hello dear reader and apologies for my long absence.  The last few months have been a period of much deliberation, discussion with friends, family and professionals, sleepless nights and general chaos.  I haven’t always coped well with this, but it has led me to make an important decision in relation to work. 

Before I explain further, I want to tell you a little about my job.  I am a teacher and for the last 4 years, have worked with a team who support and promote the education of children who are in care (we are known as a Virtual School).  The work is challenging, but very rewarding and it has been wonderful to be doing something that I really believe in.   We are a team of just 13 and I am very blessed that each and every one of my team mates is a friend as well as a colleague.  I remember reflecting a few months into this role, that it felt as if it was where I was meant to be … I was learning so much and really felt I was making a difference to children’s lives.  

During the last 18 months, I have struggled more and more with work as my health has deteriorated.  I have had many weeks off sick, recovering from relapse, fatigue and fall injuries.  On several occasions I have fought my way back to work, to only be overwhelmed by debilitating symptoms within a few weeks.  It has taken me a while to accept it, but I have come to realise that this situation cannot continue.  

My headteacher and the local authority have been wonderfully supportive through all of this.  I have reduced my work hours and had appointments with Occupational Health (OH), all reasonable adjustments have been agreed and put in place, but I can’t escape the fact that I am getting worse and working has become harder and harder

It is important that people with MS make good lifestyle choices and there is emerging evidence that those who live a healthier lifestyle do much better in the long run.  When I’m not working, I manage to walk daily, do yoga, eat healthily, sleep better, meditate and to generally take better care of myself. Once I’m back in work, this uses up all my physical, emotional and cognitive energy and I’m not able to do all the things I need to do to keep myself well.  

Neurology Professor Gavin Giovannoni discusses this issue in this blogpost (and in many others) … Barts MS Blog – Moving the Goalposts

So, I have made the difficult decision not to return to work and to pursue ill health retirement.  At my most recent OH appointment, I was assessed as not currently fit for work, with no actions identified to support my return.  My MS Nurse and GP are also in agreement and my neurologist will provide a supporting report. As you can imagine, I have been heartbroken by the realisation that I can’t manage any more, but I also have a huge feeling of relief that a decision has been made … and that tells me it’s the right decision.  

I’m trying not to dwell too much on the sadness of the situation for now, but to look forward to a future where I can better take care of myself and live my best life.  I hope I will feel healthier and will have more time and energy for family and friends.  I plan to become involved with local groups and to do some volunteering in schools or with vulnerable children, as I still feel I have a lot to give.  I’m hoping I can dip in and out of this and do as little or as much as fits with where my health is at.  My work friends have promised to keep in touch and to meet up when we are finally allowed. 

So, 2020 really has been a huge year for me … lots of staying home, thinking and making decisions.  I will be moving house early in 2021 and am hoping to have a confirmed date on that within the next few weeks.  With the help of Connor, Sophie, Niamh and Callum, I have made a slow start on sorting and packing my belongings.  I’ll be so relieved when that job is finished! 

HSCT has resumed at the clinics in Moscow and Mexico.  The hospital in Moscow is only accepting patients from certain countries, as the Russian government is strictly limiting visas to enter the country at the moment.  A few British MSers have had treatment this year and I am full of admiration of them for their determination and bravery.  For a number of reasons, I am deferring making a decision on my treatment until next year at some point.  I feel that having the treatment is as safe right now as it has always been, but I would be concerned about travelling home with a severely compromised immune system.  

During the early weeks and months of recovery, it is vital to avoid infection and Coronavirus is a particular danger.  Sadly, the HSCT team at Sheffield have had 2 patient deaths due to them catching the virus soon after treatment.  These were cancer patients, rather than MS patients and the hospital have now stopped all but the most urgent treatment.  

If I had treatment now, it would be necessary for me to totally isolate myself for some time afterwards. I wouldn’t be able have family and friends staying or even visiting to help me and I would need to manage everything at home on my own … including trying to maintain a scrupulously clean and sterile environment, whilst recovering from challenging treatment.  Having already spent much of this year in isolation, I don’t feel I could face doing this for now.

We are not actively fundraising at the moment, but in the interests of transparency, thought I’d share where we are up to. The total collected stands at £28,531 and I remain so grateful and in awe of all of you who have contributed, attended one of our events or taken part in a sponsored activity.

You can check up on the page here … GoFundMe

The funds are not actually held by Go Fund Me, but are automatically transferred to a bank account, which is kept separately from my other finances. If we decide ultimately that HSCT has become too risky for me, I will offer to refund individual donors and contribute the rest to AIMS to support others pursuing HSCT.

Autoimmune and Multiple Sclerosis (charity)

If you’ve got this far, thank you for reading my waffle! I am very aware that I am not the only one dealing with difficulties right now, all with the backdrop of a global pandemic and harsh restrictions, which are getting us all down. There are, hopefully, better times ahead, so until then, do what you need to do to take good care of yourself and those around you ❤️