isolation – Another MS Warrior

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 ❤️

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 ❤️

126 Isolation day 18

I’ve been a bit unsure on whether to keep updating this blog at the moment. My treatment is on hold, life is on hold, in fact all our lives are on hold, the whole world is on hold. What strange times for us all.

I’m going to keep writing, because it really helps me to do so. I don’t mind at all if no one reads!

Well I’m now on day 18 of isolation and this time has been strange, interesting, unsettling, boring, frightening, calming and a million other things. The first few days were really tough. It really felt that I would never see my friends and family again, I was scared I wouldn’t cope being entirely in my own and I was worried about what will happen with my MS while waiting for the world to go back to normal.

Since then, I have managed to get myself into a new routine, to get on with work, to do a few jobs in the house and to mostly stay positive. There are times when it’s really hard. My little house can feel huge and empty and at other times, small and oppressive. Sometimes I feel desperately lost and alone, but powerless to do anything about it. I have lovely friends and family in my life and appreciate every single one of them. I have numerous people I could call or text or message but somehow I don’t – this is something I am working on. Most of the time I feel fairly upbeat, positive and optimistic. I feel grateful for what I have … my lovely home, my crazy cats, a job I love, my fantastic workmates and most of all, my friends and family. But sometimes the misery grabs me. I’ve always been like this but have always had options to go out do something, make plans, distract myself …it’s not easy to do that when you’re stuck inside your own four walls with only cats for company!

This is so true. Right now I am safe and I feel luck to be safe. I am able to carry on working from home and I have daily remote contact with lots of people. I know I am in a much better position than many are at the moment. I am only leaving the house for a daily walk in the local area and Niamh is doing my food shopping for me. I can manage like this for as long as I need to.

I am trying to push myself to walk every day, even when I don’t really feel like it and I’m finding that it really does lift my spirits. I have enjoyed spotting children’s pictures in windows and noticing all the good things about where I live.

I am lucky to live close to a beautiful park and am visiting when I can manage it.

I realise that we are all going through a period of adjustment at the moment and we are all still processing everything we are dealing with and the rapidly changing world in which we live. This will be taking a toll on us, even on a subconscious level. When we are unsettled by change, it’s the stability of relationships that gets us through. But relationships don’t quite feel right from a distance and that’s why I miss people so much and feel a bit out of kilter.

Apologies to anyone I have accidentally left out!

So, how am I managing my time?

Well I have discovered I feel much better when I stick to some sort of routine, so I continue to get up at my usual time and go to bed at my usual time. I am working from home 4 days a week, which is helping to keep me grounded and gives a sense of purpose. On the other days, I’m doing the usual housework, talking to friends and family, talking to my cats, trying a bit of yoga and meditation and making lists on all sorts of topics. There are a few jobs at home, like putting pictures up, that I haven’t got round to doing and I’m telling myself how lucky I am to have all this spare time To get these things done …I just need to muster up the motivation to actually do it!

If anyone has any top tips for coping with isolation, suggestions for new hobbies or activities I could try or ideas on how I can use this time to better myself, please send them my way.

Apologies to anyone offended by swearing 😊

I also have an important decision to make …do I cut my fringe or let it grow?!

115 Planning for Russia

Planning for my trip to Russia for HSCT is well under way now, so I thought I’d share with you where I’m up to.

A visa is required for travel to Russia and the process for this is rather complicated. I am waiting for an official visa compliant invitation from the hospital and once this arrives, there is a long and detailed online form to compete, followed by a visit to the Russian Consulate in Manchester. Shortly after that, my passport will be returned, containing a 90 day single entry Russian visa. I am hoping to find time to book my flights in the next few days and will feel quite relieved once that’s all done.

Then it’s just preparing the house and things I will need on my return, sorting things out at work, finalising plans for my aftercare and packing my suitcase to do! I am already compiling lists. My mum was one for writing lists and I often think of her when I’m in list writing mode ❤️

As the time draws nearer, friends and family are naturally asking lots of questions about how long I will be away, what the treatment will involve and how I’m likely to be when I get home. I thought I would try to answer some of those questions here.

I will be in Russia for a total of 30 days from Monday 16th March until Wednesday 15th April. I plan to travel on my own, basically to keep costs down. I have spoken to many others who have travelled alone without difficulty and know how to plan for the journey home.

The first few days are taken up with pre treatment testing. This is to ensure there are no hidden medical conditions which could be impacted by HSCT. There is also an opportunity to have a full MRI scan of the brain and spinal cord in one of the higher strength Russian machines, which can show greater detail than the UK MRI machines. During this time, there is also a bit of down time, during which I’ll be able to go outside, mix with other patients and hopefully squeeze in a bit of sightseeing.

The exact protocol used varies from clinic to clinic, but at the Moscow hospital, the timeline is as follows …

Day 1 – 4 Examination and final decision on treatment.

Day 5 – 8 Stem cell mobilisation Drugs are used to stimulate the bone marrow to produce extra haematopoietic stem cells and release them into the blood. These stem cells can develop into the cells of the blood, bone marrow or immune system.

Day 8 – 9 Stem cell harvesting – An apherisis machine is used to extract stem cells from the blood. These are then frozen until needed.

Day 9 – 12 High dose immunosuppression (chemotherapy)

Day 13 Stem cell reinfusion

Day 14 – 27 Haematological and Immunological recovery – Isolation – the body builds a new immune system using the reinfused stem cells.

Day 29 – 30 MoAb-Rituximab and discharge

It is important to note that it isn’t the stem cells that treat the faulty immune system (the root cause of MS), but the chemotherapy that partly destroys the faulty immune system, allowing a new healthy one to grow. It is thought that a new immune system would eventually grow following chemotherapy, without the introduction of stem cells, but by providing the transplant, recovery is much quicker and the time a patient has a compromised immune system is significantly reduced.

Through the Facebook HSCT support groups and by reading numerous blogs, I have followed the journey of many patients travelling to Russia and through treatment. I feel I have a good and realistic idea of what to expect …and I believe I will cope and it will be worth it.

Isolation

The period in isolation is not as alarming as it first sounds. The reason for isolation is to reduce the risk of infection whilst the immune system is at its lowest. There are regular visits from medical staff and your developing immune system is monitored daily via blood tests. Once the medics are happy with your blood results, you can leave your room and mix with others again. I see the isolation phase as a time to rest and recover and allow the body to heal and repair. I will have access to TV, Netflix, Facebook, Whatsapp, my kindle, phone etc and will be able to keep in touch with family and friends (as well as updating this blog!). I’m not worried about coping with isolation.

Hair Loss

Yes, I will most likely lose my hair!

The chemotherapy used causes hair loss in virtually all patients and the use of cold caps is not recommended. I quite like my hair so was a bit bothered by this when I first read about HSCT, but I’m feeling fine about it now. Other patients have spoken of the liberation of baldness and I’m looking forward to seeing what it’s like! I can’t see myself bothering with a wig so will be spending some time researching funky scarves and head wraps over the next few weeks.

Once I am home, my GP has agreed to manage my aftercare. This will mainly involve monitoring my bloods to ensure my immune system is regrowing. When first home, I am likely to be tired and in need of peaceful rest. It is important to keep the house spotlessly clean, to eat carefully (to avoid infection) and to avoid contact with sick people. My amazing daughter has arranged to take some time off work to take care of me and I am so grateful for all her support.

Recovery varies enormously from person to person and is often described as a rollercoaster. The general advice is to eat a safe and healthy diet, slowly build exercise and movement, but most of all to have a positive mental attitude … or as Dr Federenko advises …

GoFundMe