I want to start this blogpost by saying a huge thank you to family, friends and other donors who have been in touch since my last post. It has been really helpful to hear your thoughts on what I should do with the remaining funds raised. Everyone seems to be in agreement – people donated (or ran / sold things / came to an event) because they wanted to help me deal with my multiple sclerosis. If HSCT is no longer the right choice to deal with my MS, the funds should be spent on whatever is. I am so grateful to you all for your thoughtfulness and support ?
I will be still making a donation to AIMS, as it is important to me that I do what I can to help others to access HSCT. You can check out the work of this small UK based charity by clicking the link below ?
Once I have transferred money that needs to go to other places, there will be around £16K remaining. This will be a huge help to me in the future as I progress to needing additional equipment to help me to stay independent. I can’t tell you how reassured I feel, knowing that this money is there as a safety net. Thank you again ❤️
It has taken much longer than I planned, for me to write this post, as my summer hasn’t really gone to plan. Unfortunately, at the end of July I caught Covid 19 and my recovery has been slow. I was prescribed antiviral medication (Paxlovid), which dealt really well with the virus, but brought a range of difficult side effects.
I am very grateful that this medication was available to me (big up the NHS ?) and was so pleased to get my first negative lateral flow test on 6th August. The last few weeks have been difficult and I am struggling with fatigue, weakness, shakiness and ongoing headache. Hopefully this phase won’t last too much longer and I’m in contact my GP in the meantime.
That’s it for now … I’m hoping to be back to full strength soon and to get back to blogging about wider MS topics and how I’m working on living my best life ❤️
On 16th March 2020, I should have been flying to Moscow for a month long hospital stay to receive HSCT, in the hope that this would halt the progression of my multiple sclerosis. During March 2020, the whole world gradually went into lockdown due to COVID 19 and on the Thursday before I was due to depart, my flights and treatment were cancelled.
Before this, I’d spent the previous two years preparing for my trip … fundraising, making arrangements for post HSCT care, arranging time off work, preparing to make my home as germ free as possible, losing weight, eating well and mentally preparing for my treatment and recovery. I felt positive, determined, relatively healthy and as ready as I could be. HSCT was the main focus of my life.
It was devastating for everything to be cancelled at the last minute and I must admit, the weeks and months after that were a struggle. At the time, like everyone, I believed the new situation would last for just a few weeks or months, at the most, and I was determined to get my treatment plan back on track as soon as possible.
As time went on, I began to realise that this new situation was going to last much longer than we all expected. I also began to worry about having a treatment that virtually eliminates the immune system, during a worldwide viral pandemic. Once travel became possible again, the clinic in Russia reopened and was soon treating patients from all over the world as before.
On 24th February 2022, Russian forces invaded neighbouring Ukraine and there has been ongoing military action there since, with many of Ukrainian people brutally killed and many thousands more displaced, losing their homes and the lives they once knew. The rest of the world initiated sanctions on Russia (and Belarus), including restricting financial transactions and travel. The clinic in Russia has continued to treat patients, with most travelling via Turkey and paying by use of complex international banking arrangements. I have no reason to distrust anyone working at the hospital, but would not feel it ethically acceptable for me to pay money into the Russian economy, or to travel there at the moment. By this I mean, I don’t have any criticism of those who are still seeking treatment in Russia, but I don’t believe it would be right for me.
There are two hospitals in Mexico, with an excellent reputation for providing HSCT for international patients and these would certainly be an option for me if I wanted to proceed; the biggest draw backs being higher cost and further distance to travel.
There is much discussion in the world of HSCT about which patients are the best candidates for successful outcomes. It seems that some of the key factors are age; time since disease onset; disease type; presence/absence of current inflammation in the brain and/or spinal cord and EDSS (this is not an exhaustive list). Some of those for whom treatment isn’t successful, actually become more unwell following HSCT and there is a connection between these risk factors and mortality rates too.
Age … HSCT seems to be most effective in people who are treated when younger. There are people who have received HSCT well into their 60s or 70s, but evidence seems to show that those in their 20s, 30s and 40s people are more likely to have successful outcomes. The upper age limit for the STAR-MS trial ongoing in the UK is 55. my current age is 57.
Time Since Disease Onset … Evidence shows that HSCT is most effective for those in the early stages of the disease, with 10 years often quoted as the upper limit. Calculating the length of time since disease onset is much more difficult than it would appear. I was diagnosed in 2017, but my first known symptoms were in 2011. I had various health problems and unusual symptoms for a number of years before this and it’s possible that multiple sclerosis was the culprit.
Disease Type … I was initially diagnosed with RRMS (Relapsing Remitting Multiple Sclerosis) and this is known to be the “type” of MS that is most likely to respond well to HSCT. This presents as periods of disease activity with periods of remission, during which symptoms may subside or even disappear. Over time, many of those with RRMS transition to SPMS (Secondary Progressive Multiple Sclerosis) where there is a slow general increase in symptoms with no periods of remission and no recovery from symptoms. It is difficult to pinpoint the time of transition from RRMS to SPMS and the diagnosis is usually made retrospectively. My neurologist believes I am now secondary progressive with superimposed relapses, although these are becoming less frequent. I take this to mean that I am transitioning to SPMS.
Presence/Absence of Inflammation in the Brain and/or Spinal Cord … HSCT is thought to work by reducing inflammation in the central nervous system and acting on the process that would cause future inflammation. In SPMS, it is less likely for there to be ongoing inflammation, with symptoms caused by previously incurred damage to the brain and spinal cord and the body’s reduced ability to compensate for this as we get older. My last MRI (July 2021) showed no ongoing inflammation and no new lesions.
EDSS … Disability in MS is measured using the EDSS (Expanded Disability Status Scale) and although there is much criticism and discussion about the appropriateness of this system, it is still used by hospitals providing HSCT. For the clinic in Russia, the upper EDSS limit is 6, although the hospital in Mexico will consider those with a higher EDSS. Two years ago, my EDSS was 6, however, I think there is a possibility that it is now 6.5. Those with a lower EDSS are more mobile, are likely to be more active and generally in better health, making treatment and recovery a little easier.
I’ve been thinking about all of the above over the last months, had discussions with various friends and family members and have reached the difficult conclusion that HSCT is no longer for me. It has been a tough decision to make and I wanted to give myself time and to feel sure that it is the right one for me. I still believe that HSCT is an amazing, life changing, treatment for many and there is much hope for MS patients in the future. Basically, I feel timing is all wrong for me and I no longer feel it is my best option.
This decision leads me to thinking about how to manage the funds that were raised and that so many friends, family and strangers contributed to. The source of these funds falls into 4 main categories and I am proposing dealing with them as follows:
Donations from individuals … give donors the choice of where this money goes (return, AIMS or other medical expenses).
Money raised via events and sponsored activities … use for other medical expenses.
Money raised selling jewellery and other items previously owned by my mum … use to fund a family get together (this is what we originally planned for this money but my family kindly donated it to my fund).
My own savings … return to my own bank account.
If you have contributed in any way to these funds, please do let me know if you have a view on this. Thank you to the various friends and family who have already given me a chance to talk this through with them. Whatever is decided, full details will be published here and on the GoFundMe page.
I have mentioned other medical expenses above and I thought I’d explain a little about what I mean by that.
At the moment, I pay for CBD and for one of my thyroid medications that is not available on the NHS. I hope to try LDN and Ampyra in the future; both are only available by private prescription in England. Being chronically ill is very expensive!
My chariot
In November, I purchased my rollator (henceforth known as my “chariot”) as such equipment is not provided by the NHS. I bought a relatively cheap one, as I was unsure of how useful it would be to me. In fact, it has proved to be very useful and has kept me walking at times that would have been beyond me with just a walking stick or trecking poles. Now that I’ve had some experience, I realise that the specifications of my chariot are not ideal for me and I will need to buy a more suitable one in the future.
I am also now thinking about a mobility scooter and these are very expensive. I realise that it is really important to me to retain as much independence as possible and to be able to go out and about and do as I please. A mobility scooter may help provide this.
In addition I find myself considering private neurology, physio therapy and orthotics assessments in order to get the best possible advice on how to manage my MS and symptoms. Currently I have a 10 minute appointment with my neurologist once a year and I have been on waiting lists for physiotherapy and orthotics since April 2020. My MS Nurse has retired and despite making numerous phone calls, I am still awaiting an appointment with her replacement. My mobility has deteriorated markedly since 2020 and I’m becoming worried that I will soon be beyond any activity or devices that could help me to make the most of life.
In redistributing the funds we have raised, I want to ensure I am completely open and transparent about where the money goes and what it is used for. I’d like to help others who may benefit from HSCT and I’d like to try all I can to stay as well as possible for as long as I can, even if HSCT is no longer the route towards that for me.
I want to make it clear that I have made this decision for me (with help from family and friends) and I know it is the right decision. I am not a neurologist or expert in MS, just a person doing their best to manage their disease. If you have MS, I don’t want my decision to influence any decision you make for yourself. I also point out that the points listed above, that influenced my decision, are just my interpretation of my situation, following much reading and research over the last few years. I know the situation is not simple and that I will have got things wrong. Please do your own reading and research before making a decision for yourself. I have added some useful links below, as a starting point.
I hope no one is disappointed that I have made this decision, particularly those who have supported me and given your time and money towards helping me. I will be forever grateful for all the love and support I have received since I began considering HSCT.
You are all amazing ??
If you have made it to the end of this post, thank you and well done! (I know its rather long and not that interesting!).
2022 hasn’t started quite as well as we were all hoping, with all our lives still being impacted by Covid 19, Brexit and worries about our financial futures. I am trying hard to muster every ounce of optimism I can find, but it’s not always easy.
I’ve been struggling to think straight for the last few months, let alone write, so my blogging has totally fallen by the wayside. During the last year, I have retired from work on medical grounds, worked my way through complicated pension paperwork and evidence, sold my house, been rescued by family and eventually moved to a rented ground floor apartment nearer to my children and friends. It has been a lot to process, but I think I’m finally reaching a point of acceptance and can now begin to look more clearly to the future.
My brand new park home has never materialised, so I have had to change my plans. I am in now the process of buying a lovely new apartment and will definitely feel much more secure once the solicitors have done their stuff and the place is finally mine. I won’t say any more on this for now, just in case I jinx it!
As always, my MS has been making itself known. I have had several falls in various situations and suffered lots of bruises. It really does hurt when you hit the ground when you’re this size!
I had an MRI scan in July, which did not find any new disease activity in my brain and spinal cord … this is the first time a scan has revealed this outcome. It’s a cause for cautious celebration, but sadly, it doesn’t mean that my disease is no longer progressing. Hopefully it means that the DMT (Disease Modifying Therapy) I’m taking (Tecfidera) is helping. I’m going to do a future blog post on MRI, progression without visible lesions and “smouldering MS”, so will talk about this more then.
I am still thinking about HSCT, but two years on, have much more doubt than I did previously. I’ll do a future blogpost on this at some point too and am mindful of the need to be transparent about funds raised as well.
In the meantime, I’m going to spend the next few months researching what I can do now, to help me to live my best life with MS and putting what I can in place. I have started a bit of a list and will add to it as I begin my exploration. I am also open to helpful suggestions if anyone has any.
LDN (Low Dose Naltrexone)
“Low-dose Naltrexone has been used off-label as a treatment for various types of cancers, HIV/AIDS, Parkinson’s disease, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), emphysema, as well as multiple sclerosis (MS) and other autoimmune diseases”. Low-Dose Naltrexone | National Multiple Sclerosis Society
Fampyra
“Fampyra is indicated for the improvement of walking in adult patients with multiple sclerosis with walking disability (EDSS 4-7)”. Fampyra
HRT (HormoneReplacementTherapy)
“A further observational study in 2016 looked at 95 post-menopausal women with MS, of whom 61 had used HRT. The use of HRT was associated with better physical quality of life. It is thought that female hormones may have a neuroprotective effect and this is why HRT may be useful”. MS Trust: Menopause
FES (Functional Electrical Stimulation)
“Functional electrical stimulation (FES) is a treatment that applies small electrical charges to a muscle that has become paralysed or weakened, due to damage in your brain or spinal cord”. Functional electrical stimulation (FES) | MS Trust
Red Light Therapy and Near Infrared Light Therapy / Infrared Sauna
“Infrared light can penetrate skin and affect structures lying underneath, and Lyons first thought of applying it to MS after talking to colleague Janis Eells, who had studied its retina-healing powers. Other researchers are exploring infrared treatments to help with diseases such as Parkinson’s and muscular dystrophy.” Red Light Therapy
“Taopatch is a patented wearable nanotechnology device that combines acupuncture with light therapy”. Taopatch
Hyperbaric Oxygen Therapy
“Hyperbaric oxygen therapy (HBO or HBOT, also called high dose oxygen therapy (HDOT)) involves breathing oxygen through a mask in a pressurised chamber, similar to a diving bell”. Hyperbaric oxygen therapy | MS Trust
Cannabidiol (CBD)
“One in five people with multiple sclerosis (MS) surveyed in 2014 told us they’d used cannabis to help with their symptoms. They said it can help with muscle spasms or stiffness (spasticity) and pain”. MS Society: Cannabis
Revitive
“EMS is a world renowned technology that works by delivering electrical pulses that activate nerves in the body, causing muscles to contract and then relax”. Revitive
CircleRehabilitation
“At Circle Rehabilitation, we build bespoke private treatment and rehabilitation programmes for people with multiple sclerosis. Our aim is to build your independence as much as we can. Our rehabilitation programmes are medically-led – your care and rehabilitation is overseen by one of our specialist rehabilitation consultants and physicians”. Circle Rehabilitation: Multiple Sclerosis Treatment
I want to finish by wishing you all the very best for 2022. Once again, I have been very poor at staying in touch with the people I care about in recent months (years). Between lockdowns, my anxiety and increasing disability, I know I have neglected some people. Hopefully once I’ve moved and started to take better care of myself, I can begin to put that right ❤️??
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).
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.
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 ❤️
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.
The view from my home working desk
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
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!
What is this strange world in which we are now living? Nothing is as it was and it’s very unsettling.
This has been a really tough week for many of us and I hope you are managing ok and doing all you can to keep yourself and others safe.
Last Monday, I should have been flying to Moscow for HSCT. I’m so disappointed to not be having my treatment and the emotional shock of this change has been very difficult. For me and my family, everything has been building towards that day and that one aim, so it knocked us for six when it didn’t happen.
As we have moved though the week and the threat of CV19 has increased, and all the necessary restrictions have been put in place, I have become increasingly thankful to be at home and to be feeling relatively safe. The thought of trying to travel home from Russia in this situation really scares me … so I’m going to sit this out and see what happens when life gets better for us all.
I spent most of Monday and Tuesday in a state of emotional shock about this big change, with the rapidly evolving CV19 situation as the back drop. On Wednesday I had a telephone appointment with one of Professor Sharrack’s team in Sheffield. I have to say that this was the best neurology appointment I have ever had! He really took the time to ask me how I am, what has changed since my last appointment and how my symptoms are impacting on my life. He was also pleased to find that I was still here and not planning to go to Russia anytime soon. I’m not sure what my rights are to choose my own consultant, but I intend to find out and choose this one if I can.
The upshot of the appointment is that I should have had a brain and spinal cord MRI in January and no one seems to know why it didn’t happen. So, I am to be referred again and will have a further consultation when the findings are known. Obviously I have no idea when this scan might take place, but at least I’m still in the system somewhere! I was also informed that the hospital in Sheffield have suspended their HSCT for autoimmune diseases because of the risks presented by CV19.
There was another devastating blow this week when we realised that the Swan Brewery head shave and Bald Eagle beer launch event cannot go ahead. Jimmy and Gill have worked so hard for this and are now having to work doubly hard to protect their small brewery business from the current crisis.
If you are in the Leominster area and would like some good beer as an occasional isolation treat, check out their collection or drop off options here …
On Monday, I discovered that both Niamh and I are on the government list of vulnerable people – me because of my MS and Niamh because of her asthma.
I decided I need to “socially distance” and self- isolate as much as possible ..something I found very upsetting and depressing to begin with. On Wednesday, we made the decision that we should not be together. Niamh lives part of the week with me and part of the week with her boyfriend, Callum and from now on, will be living at Callum’s. It was incredibly upsetting for us both when she came home after work to collect a few things, blow kisses and say goodbye from a distance …but it was the right thing for us to do.
Yesterday Niamh dropped off a food parcel after work. I thought I’d feel upset and it was hard not to hug her, but it really did give me a boost to speak to her and to see her in the flesh.
On Thursday I went back to work. When I say “went” I didn’t actually go anywhere at all, but worked from home. All of my team have been working from home since Tuesday and both my employer and team manager have been amazing at ensuring everyone is safe and able to work. We have a work WhatsApp group and are keeping in constant touch with each other, which is great. I didn’t want to go to the office at all, so a colleague collected a few things and brought them to me and we even managed a short socially distanced chat, with me on the door step and her on the pavement! It’s good this is happening at a time when there is a break in the usual rainy weather! Thank you Jan and lovely to see you ?
On Wednesday evening, the government announced that schools in England would be closing to most pupils from Friday afternoon. It’s actually incorrect to say that schools are closed – most are, in fact, open and will be providing care for the children of key workers as well as those who may be vulnerable. I work with children who are in care and who automatically come under the vulnerable heading, so it’s been a hectic couple of days trying to ensure everything is in place for them as it should be. The task was made more difficult because of both the lateness and vagueness of government directions and the variety of ways in which these were being interpreted.
Most council staff who are able to work from home are now doing so and our IT systems weren’t designed for this level of remote demand, so there have been challenges, but we are doing our best.
All in all I have enjoyed being back at work. It has been good to have something different to focus on (other than on myself!) and to feel I am doing something useful. I am absolutely exhausted though!
I’m glad it’s now the weekend and plan to catch up with friends and family via Skype, messenger, Facebook, whatsapp, text and good old fashioned phone call. How would we have ever coped with this situation without technology and access to the online world?! I’ve even been invited to a virtual pub lock-in!
I also plan to make some lists of things to do whilst at home and create a bit of a timetable for myself. I definitely function best with a bit of structure and purpose in my life. In addition, I will be reviewing my food situation and having a stern word with myself … if I continue as I am, I may well avoid the virus but I am likely to become a very fat alcoholic, which I’d also like to avoid.
The government and NHS websites are being updated regularly with advice and guidance on what we should all be doing to protect ourselves and each other and I am also checking various MS/CV19 pages too …
So this is my life for now. Living and working in this little house on my own, with two crazy cats for company. I hope to keep in touch with the people who matter to me and I hope to get myself into some sort of routine that also includes time outdoors. I am dependent on others to do my shopping and bring me what I need …this doesn’t sit easily with me but I’m going to assume that no one will offer help unless they genuinely wish to provide it. There is an amazing local community group emerging where I live, offering all sorts of help, home deliveries etc. so I’ll be making use of that too. Most human beings are fantastic in crisis! (We won’t mention the virus deniers and panic buyers for now!)
Everyone else is talking about it, so I thought I would too!
Firstly, I want to say that I am writing this post to help me to gather my thoughts on the current pandemic situation and share them with you. I am not giving advice on how each person should respond, but telling you how I am responding right now. Obviously, as we are in a fast moving situation, my response may well change in the coming days, weeks and months.
The only advice I would give to others is to read and follow the most up to date advice and guidance and to judge for yourself what measures you should be taking to keep yourself and others safe. Please bear in mind that the risk could be greater for family members, friends or strangers with whom you have contact, due to their age or health situation – I believe we all have some responsibility not only for ourselves, but for others around us.
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As you are aware, I should have been travelling to Russia today, to begin my HSCT, but this has been postponed due to the spread of the COVID-19 virus. HSCT seriously depletes the immune system and recovery can take several months – clearly now is not the right time to deliberately lower my immune system.
I have been allocated a new date of 28th July and will be following developments closely as we move closer to that date. At the moment I’m not feeling hopeful that it will be safe to proceed in July.
At the moment I am not in work and I now have a decision to make about when or whether to go back. I am hoping to have a conversation with my GP and make a decision on that this week. I have appointments with both my neurologist and MS Nurse in April.
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As a person with MS, I am not at particularly greater risk due to the virus. I don’t think I’m more likely to catch it than anyone else, or more likely to die if it do. My lung function is fine, I don’t smoke and I’m otherwise reasonably healthy. I’m a little overweight and not as physically active as I’d like to be.
It is clear, however, that my immune system is faulty. I have two autoimmune diseases – Multiple Sclerosis and Hashimoto’s Disease (autoimmune thyroid disease). I also have a higher than normal presence of Antinuclear Antibodies in the blood – this indicates a tendency for the immune system to attack the body’s own healthy tissue (via cell nuclei). My biggest worry about catching the virus is that it could trigger an Ms relapse, trigger further thyroid issues or trigger another autoimmune response. I am therefore taking steps to reduce the risk of me being coming infected, which therefor also adds protection to those I am in contact with.
The MS Trust is providing regular guidance updates for people with MS. Here is their most recent update …
? I have increased hand washing over the last couple of weeks. I am washing my hands when coming home, after opening the post and several additional times each day (as well as the usual hand wash after using the toilet or before preparing or eating food). I have stopped wearing rings, watches and bracelets.
?? I carry hand sanitising gel with me and use it often when out, especially after touching anything (including menus and cash, both of which are filthy!)
? I am being very careful about what I touch when I’m out. This is a difficult one for me, as I need to use handrails etc to stay upright! I am now wiping shopping trolleys handles before touching them.
? I am not “self isolating” but I am limiting social contact. I am mostly staying at home, but still doing my own shopping and having contact with family and close friends who are well.
? I am keeping in daily contact with friends, family and others online – I am worried about us all feeling isolated.
? Shoes and coats will stay in the room nearest the front door and I am frequently wiping my handbag (inside and out).
??♀️ I am trying really hard not to touch my eyes, nose and mouth – why is this so bloomin difficult?!
? I am using disinfectant wipes daily to wipe my walking stick handle, door handles, light switches, the stair rail, door frames (I hold on to these for balance at home), window handles, blind cords, phone, iPad and TV remote controls.
? I wipe my keys, steering wheel, car door handles and gear stick often.
? I am opening windows and letting in fresh air. I haven’t seen anyone advising this but I personally thing a well ventilated home is healthier!
? I haven’t engaged with “panic buying” but have enough in my freezer and cupboards to keep me going for a couple of weeks if I have to. I have made sure I have a few weeks of my regular meds at home and have bought some additional packs of paracetamol.
I may well add to this list in light of new advice or as I think of further steps I can take to protect myself and others.
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I am feeling quite anxious about myself, about my family and friends and others. Because of my area of work, I know that there are many children who will be in danger if schools close and they have long periods holed up at home. I know there will be adults in danger because of this too. I know we are all worried about coping financially and especially about the self employed, small businesses, those on exploitative contracts and those not eligible for sick pay. I hope when this is all over, we can learn as a society, to make things a little fairer and safer for everyone.
I remain concerned about our government’s response to the threat of COVID-19, which is not in line with World Health Organisation, particularly in relation to testing and tracing contacts …
Countries should find and test every case of coronavirus to stop the pandemic, the World Health Organisation said a day after the UK announced that only the most seriously ill will be tested.
“You can’t fight a virus if you don’t know where it is,” the WHO’s director general, Dr Tedros Adhanom Ghebreyesus, said at a briefing on Friday. “Find, isolate, test and treat every case to break the chains of Covid transmission. Every case we find and treat limits the expansion of the disease.”
