lockdown – Another MS Warrior

136 New year, new blog post

Happy New Year everyone. Thank goodness 2020 is over – it has been a dreadful year all across the world and I don’t feel I can begin a new year blog post without first acknowledging the huge loss and suffering the COVID-19 pandemic has caused to so many. Over 1.8 million lives have been lost to the virus worldwide (over 73 thousand in the UK), with many more left with debilitating health problems and organ damage following recovery from the virus itself.

Another consequence of the pandemic has been the numerous lockdowns and other restrictions we have all had to cope with for many months. The practical impact and mental health consequences of this have been enormous and it’s going to take us all a long time to recover.

But 2021 is here at last! The start of a new year always brings new hope and perhaps resolve to work towards a better future. This is how I’m choosing to view today.

I have discovered a lot about myself this year. Perhaps enduring long periods of solitude forces us to look inward and to question things more. I have found that I am more self sufficient than I thought and despite having many down days, I have managed to pick myself up and do something about it. Perhaps the greatest thing I have learnt is that it is no use hanging on to things/situations that no longer serve you, even if you believe everyone expects that you should. My two big decisions (taking ill health retirement and moving house) have come from this. I realised I was putting all my energies and focus on to hanging on to my work and my home, but that both of these were causing me harm and leaving nothing for any other aspects of my life. I’m still very sad about both, but glad to have made these decisions and confident that I am doing what is right for me.

It’ll be while until both of these come to fruition, so I’m planning to spend the next few months doing all I can to get myself ready. Despite living alone, I have eaten and drank for too much over the last few weeks (stressful times often lead to comfort eating for me) … now need to get a grip! When your body doesn’t quite function as it should, carrying extra weight adds further stress to a messed up system.

I’m not one for new year resolutions but by the end of January, I plan to be eating healthily, back in a proper sleep routine and moving a bit more. And I still have a lot of sorting and packing to do too! Plenty to keep me busy.

The other thing I have realised during this year of lockdowns, is how important people are to me, well, actually I already knew this, but this time of reflection has doubled me belief. We don’t need lots of “things” in our lives, we need authentic connection with people who mean something to us. So, when life returns to “normal”, I’m going to focus on time with good people to help recover from this last year and invest in a better future. At this point, I’d like to say a massive thank you to friends and family who been such a great source of support. I’m not always good at staying in touch, but I do appreciate hearing from you and think of you all often.

Recent news of vaccine rollout has given us all a boost … light at the end of the tunnel at last! I think I am in group 6 on this priority list, so may still have some time to wait (but that’s fine).

So I am starting the new year on my own, in England Tier 4 (lockdown by another name) with some feelings of trepidation, but mostly optimism for the year ahead, at least once these first few months are over.

HSCT is still forever in my mind, although it’s obviously on the back burner for now. The hospital in Sheffield has not resumed treatment for MSers since it was suspended in the summer; I am uncertain of the situation in London. I know a few have braved the journey to Mexico over the last few months and others are going soon. The hospital in Russia is continuing to treat a few patients, however, travel restrictions mean it is impossible to get there at the moment (if I understand correctly, the Russian authorities are not currently issuing visas to UK passport holders).

I’d like to end by sharing a picture of a Facebook conversation with my friend Beth, who has recently learnt the art of Tarot reading. This was the outcome of a little online card picker she set up. Fingers crossed ??????

Take good care of yourselves and try to stay positive if you can. If that doesn’t work for you at the moment, accept where you are and know that you don’t have to be strong all the time, just do your best to keep going (an achievement in itself when life is a challenge).

❤️

131 My current thoughts about HSCT

This is going to be one of those posts where I throw a load of my thoughts on to the screen, in the hope that I can make some sense of them. So, if that’s not your thing – click away now!

As you all know, I was meant to be travelling to Russia on 16th March for HSCT (Haematopoietic Stem Cell Transplant) … hours of research, numerous discussions with family and friends and huge fundraising efforts had led to this point. Provisions were purchased, the house was disinfected, visas were obtained, plans put in place for my return, flights were booked and I was all ready to go. Then along came COVID 19 and everything changed. With just 4 days to go, my trip to Russia was cancelled and ten days after that, the UK began lockdown.

Before COVID, I was feeling incredibly positive, full of determination and confident in my decision. Four months on, I am struggling to connect to those feelings and now find the thought of doing this really frightening.

Initially, I was keen to get my treatment back on track as soon as possible, but as the full impact of the pandemic unfolded, my thoughts on this began to change. There was talk of the clinic reopening in July and this has now been put back to at least September, but I wouldn’t feel at all safe going that soon. The Russian borders remain closed and their COVID infection rate is rumoured to be high.

If things had gone ahead as planned, I would be 3 months post transplant now … past the most dangerous, low immune system, phase, hopefully starting to recover, reconnecting with friends, getting back to work and seeing my hair beginning to return. I was so ready to take this on … but now totally dread that this is all still ahead of me.

Like all of us, I have spent the last few months in lockdown and have experienced a mixture of emotions. I’m a sociable person, so have struggled without daily contact with others and with not see my friends and family. I’ve also been unwell during this time, so it’s been quite a challenge. Maybe this was a glimpse of how life might be in the first weeks and months after HSCT? Would I want to put myself through that again? Maybe I feel that way because we’re not out of it yet and I’m still missing my old life? ??‍♀️

Before COVID I also felt confident about keeping my house clean and sanitised and about all the extra measures needed to keep infection risk to a minimum during the early weeks and months after treatment, whilst the new immune system is developing. Now I am super anxious about germs everywhere!

In my mind, my treatment has been put back until COVID has gone and who knows when that might be?!

In the meantime, all the other worries that keep me awake at night continue to haunt me … Can I really manage to carry on working? If only I could afford to reduce my hours. Should I move house? Will my steep stairs kill me?!

These are issues I planned to think about after HSCT, but with the delay, I’m being forced to think about them now

I always feel it’s a bad idea to make important decisions while you have “stuff” going on. With the COVID pandemic, we all have stuff going on and we are likely to be in this situation for quite some time. How can I decide what to do??

I’ve been having some counselling (by telephone) over the last few weeks and through that I have realised that I’ve never really come to terms with my diagnosis and carry a lot of shame and guilt associated with it. Counselling has been really helpful and I am grateful that my employer has funded this for me. I am now back at work (from home) on a phased return, something I felt was impossible just a few weeks ago.

So dear friends, if you have any words of wisdom to help me deal with the whirring thoughts in my head , do let me know!

I don’t want anyone to be too concerned about this post full of doom, gloom and confusion … I’m feeling ok day to day and have found some real positives in lockdown (maybe I’ll write about those in a later post). I continue to be so very grateful to family and friends for all your support. I also want to apologise to loved ones I haven’t had much contact with (that includes you Melanie and Auntie Ann) … I’ve had to keep my world very small recently to cope with the madness … I promise I’ll be in touch soon xx

Stay safe everyone ❤️

129 What’s happening with my MS?

Hello dear readers, I’m sorry for neglecting you of late. Today is my 66th day in lockdown and as everything is on hold, there really isn’t much to report!

I’ve had lots of messages and questions from family and friends about how my MS is affecting me at the moment and my plans for treatment, so I thought I’d write a bit of an update.

Over the last few weeks, I have had telephone appointments with my GP, an occupational therapist, a physiotherapist, my neurologist in Salford and with the neurology team in Sheffield. My long awaited appointment with the MS Nurse has been delayed as she has been redeployed due to the pandemic.

The situation with Professor Sharrack in Sheffield is that he believe that I have Secondary Progressive MS with superimposed relapses. This would exclude me from their criteria for HSCT treatment there. They would like me to have a further MRI scan, which they will compare with the previous one, before making a final decision. At the moment, the hospital is not carrying out routine scans, so this is likely to be on hold for several weeks/months/who knows?!

My own neurologist is very concerned about the length of time I have been without treatment and would like me to try another DMT (Disease Modifying Therapy). He understands why I am pursuing HSCT but feels that it won’t be safe to travel for treatment for quite some time (a year or more was mentioned) and would like me to be protected from further relapses during this time. So I have agreed to try Tecfidera. This is taken in tablet form and reduces both the frequency and severity of relapses. My neurologist thinks I am having lots of mini relapses, so hopefully this drug will reduce them.

You can read more about Tecfidera here … MS Trust – Tecfidera

Regular blood tests are required when taking Tecfidera, including an initial test to check liver and kidney function, full blood count and diabetes status. So, last week I went to Salford Royal Hospital for the test. It was a very strange experience, having not left my local area for weeks and only occasionally driving around the block.

The hospital was eerily quiet and no one seemed to be wearing a mask, except me! I was asked some COVID questions and had my temperature taken on arrival (by a man not wearing a mask) and several vials of blood were quickly taken (by a nurse who was wearing a mask).

I have also been prescribed a drug that may help with my debilitating fatigue and brain fog and started it this week. It takes a few weeks to begin to take effect, so fingers crossed it works for me ??The drug is called Amantadine and is an antiviral which has been found to help 1 or 2 people in 5 with MS fatigue, although the mechanism for this is not known. It is sometimes used to treat people with Parkinson’s Disease as well.

you can read more about Amantadine here … MS Trust – Amantadine

I am still off work and my GP would like me to stay off until both new drugs have had a chance to kick in. I have very mixed views on this … some days I feel that I could manage work (at home of course) and on other days it feels like an impossibility. Being at home has given me lots of time to think and come to the realisation that I need to make some changes in the long term (whether I eventually have HSCT or not) …I have no idea yet, what those changes might be.

I have been continuing on my daily walk most days and some days this has been quite a struggle, as my left leg tends to drag and can often feel like a heavy, dead weight by the time I’ve walked a few hundred yards. A couple of weeks ago, I developed a severe muscular pain in the right side of my lower back. I spoke to my Occupational Therapist about this and after much discussion, she worked out what was causing this problem. Most of the time, I wear flat ankle boots when out and about, as I find these comfortable and benefit from the ankle support, especially on my left foot. When the warmer weather arrived, I started wearing flat lace up pumps and was aware that my left foot was dragging and would sometimes catch on the ground. The OT worked out that I was leaning slightly to the right in order to accommodate my dropping left foot and that this was the source of my back pain … how amazing is she?! So I have now been provided with a device to help lift my left foot, which should reduce tripping risk and take the pressure off my back.

It’s ugly and a little uncomfortable, but I’m going to persevere with it. If it keeps me mobile, who knows, I may grow to love it!

A combination of Tiger Balm, hot water bottle and gentle movement has healed my back pain, so I’m back on my feet again.

I hope you are all staying as safe and well as you possibly can ?

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 ❤️