128 Where am I up to?

Isolation day 47 and I can no longer remember my old life! This has been the strangest few weeks any of us have ever known and I think it’s beginning to take its toll.  What did I used to eat? Does the rest of the world still exist? What’s the cat trying to tell me? 

I’ve had numerous conversations with friends and acquaintances who are experiencing sleeplessness, exhaustion and nightmares! I don’t often remember my dreams, but I sure do know how they are making me feel at the moment.  I’m waking up most nights (that’s after spending a good couple of hours tossing and turning trying to fall asleep in the first place) feeling panicky, scared and stressed after a bad dream.  Apparently we use our dreams to process our thoughts and feelings, so if you consider how much change we are now living with, it’s not surprising we have a lot of anxious thoughts to process! I hope someone is doing a study of this somewhere, as it’s actually quite fascinating 🤓

I sometimes use a meditation App called Calm, to help me relax and to get off to sleep.  I’m still using it, but even that isn’t quelling my general anxiety.  It is quite comforting to find that lots of us are experiencing this difficulty at the moment, but I do worry about how this will impact us in the long run. 

As well as dealing with life in lockdown, missing family and friends, worrying about loved ones and about the planet and wondering whether Vodka can really be classed as an “essential item”, I am also experiencing an upturn in my MS symptoms, as well as the disappointment and implication of the cancelling of my treatment.  

I’m not going to talk much about my MS issues here, as I plan to log a full inventory of my current symptoms in another blog post at a later date.

As you know, I was all geared up to fly to Moscow on 16th March, to stay for a month to have HSCT to treat my MS.  It was a long and difficult journey just to get to that point – 2 years of fundraising, lots of stress, visa applications, flights booked then changed and lots to prepare for my time in Russia, my journey home and making the house safe for my return.  When anyone mentioned a time in 2020 that was beyond the 16th March, it didn’t really exist in my head.  My whole life was geared up to getting there and getting it done! 💪🏻

It was Thursday 12th March when I heard that the hospital was having to put new restrictions in place, which ultimately led to me postponing my treatment.  It was a really tough decision but ultimately it was the right one.  If I’d gone to Russia, I might not have been able to get home and My COVID fear would have been through the roof.  Life may be challenging now, but at least I’m safe as I can be, in my little house with my 2 crazy cats. 

Luckily my flights were cancelled by the airline, so I should be able to get my money back … I’ve been trying to get through to them for 7 weeks now, with no success (unless you count sitting in a 2 hour telephone queue success).  I’m hoping that will all got sorted out eventually.  

I had already sent the payment to the hospital for my treatment, a complicated international money transfer, but there was a delay in it getting there, due to everywhere beginning to shut down around that time.  It arrived eventually and the hospital sent it straight back, but it hasn’t got to me yet.  I’m told it’s somewhere in transit and not to worry (but of course, I do!). 

I had to let my GP know that I was still at home, then my neurologist and the team in Sheffield.  I am due for a further MRI scan in Sheffield as soon as it is safe to travel there. Theoretically there is still a very slim chance I could be accepted for treatment there, so it’s certainly worth me pursuing this.  

I had a neurologist appointment in Salford booked for the 5th May and an MS nurse appointment at Stepping Hill booked for the 28th April.  I was notified that both would be telephone appointments and then later notified they were cancelled.  I’ve had a new neurologist appointment arranged for April 2021!! 

Chronic illness is an area where our health system struggles.  Most of the neurology team that I have met are hardworking, dedicated experts in their field, but they are so poorly funded and have to spread themselves so thin, that they struggle to provide an adequate service.  Phoning and demanding to be seen usually works, but it shouldn’t be this way and I find it exhausting and frustrating.  

I went back to work around the time that lock down was beginning and was working from home.  At first it felt good to have something else to think about and to have that contact with colleagues.  But as time went on, I started to struggle with increased pain, fatigue, brain fog and anxiety, so have made the difficult decision to stay off work for now.

So, where am I up to?  Will I ever have HSCT? 

The answer to the second question is that I really don’t know.  The situation we are now in has really frightened me.  There is no treatment for COVID 19.  In severe cases, all the medics can do is treat symptoms and do all they can to keep you alive, whilst your immune system fights the virus.  The immune system remains compromised for quite some time after HSCT and it can take 12-24 months for it to return to normal.  If I were to catch the virus during that time, particularly in the early weeks and months, this would be very risky indeed.

Most clinics offering HSCT currently have their treatment programmes on hold because of this and there has been no treatments started in the UK, Europe or Russia during the last few weeks.  Initially the clinic in Russia offered me a new date in July, but I don’t think it will be safe enough for me to do it then and I’ve recently heard that they are possibly closing until at least September.  Looking forward, it’s hard to see a time when it will feel safe enough, with concerns about the journey home, particularly frighting.  

So, everything is in limbo and I’m just doing my best to live with it!

Stay safe everybody ❤️