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 ❤️??
Here I am blogging from somewhere new, but not strange. My life, on the other hand, definitely feels strange. Last week I left my lovely little home and moved in with my brother and his family 125 miles away. This is a temporary measure, until my new bespoke park home bungalow is finally ready. Issues linked to lockdown, followed by Brexit, followed by further lockdown, have caused a delay, which I’m told could be anything from days to weeks to months. I am having to learn to be patient.
It has been a busy and stressful few months getting my house packed up into boxes, selling and giving away unwanted items and moving things to Niamh’s house for storage. This had to be quite a gradual process, given that I live on my own, am disabled and we are in the middle of a pandemic. Connor, Niamh, Sophie and Callum have been amazing – lifting and moving things, taking stuff to the tip and moving packed boxes for storage. We managed all of this whilst being as covid safe as we could – masks, hand washing, social distancing and ventilation. It wasn’t easy, but we did it … I’m so grateful to my little team of hard working helpers ?
By the end of February, I was beginning to feel as if I was camping out in my own home! Bare walls, minimal furniture, a few kitchen basics and a lot of making do, became my way of life. The whole experience of streamlining my belongings and living in a rather minimalist way for a while, really highlighted to me, just how much “stuff” we have, much of which we don’t really need (or is that just me?).
Unfortunately, my cats, Ziggy and Luna did not cope well with all these changes. Ziggy can freak out at a chair being in a different place, so you can imagine how he coped with every room constantly changing. He is also sensitive to loud noises and sounds of people moving about in another part of the house. I have no idea how I ended up with such a neurotic cat!
By the time moving day came, I was ready to go. My home no longer felt like home and my cats were on the verge of a nervous breakdown. As I haven’t driven such a long way for quite a while, my children offered to drive me, my cats, my car and my belongings to Herefordshire and deliver me to my new temporary home.
To add to the complexities of the day, I was booked in for my first Covid vaccine on the same morning. Perhaps not the best timing, but I am grateful to have been offered it so soon and continue to be thankful to all the scientists, medics and volunteers who have helped to get us to this point.
So here I am for the next few days/weeks/months until my new home is ready. I am settling into rural life and very much enjoying the peace and quiet. Anna and Zeb (niece and nephew) have already taught me the names of various garden birds and last weekend we had a picnic and found a rope swing … this doesn’t happen often in Stockport!
Whilst in the midst of all this sorting and packing, I have also officially informed work that I am not fit to return and have submitted my application to Teacher Pensions for their consideration (along with 5 pages of notes explaining how my MS affects my ability to work and 17 items of documentary evidence – doctors letters, hospital notes etc).
It has been an awful lot of change in a very short space of time, so perhaps it is no wonder I am feeling a little unsettled and out of sorts. I am also a little “homesick” for a home that no longer exists for me, which is hard to get my head around. When I bought my house, I thought it would be my forever home. I loved its quirky old fashionedness, the local community and location. When I started this job, I thought it would be my forever job! I loved the work and my team and my office was just three miles from my forever home. I was hoping to feel settled, to take time to get my house exactly how I wanted it, to focus on myself and to plan new adventures. But my MS had a different plan and decided to deprive me of both my home and my job all in one go. I have spent much of the last year feeling heartbroken about this, but am now starting to feel optimistic for the future, whatever that may be … I am turning to face the strange … and it’s ok.
Big thanks to Jimmy, Gill, Anna and Zeb for taking me in during my hour of need. Also thanks to William (the cat) who is now having to share his home with two neurotic visitors.
I have been thinking about writing a blog post about PIP for some time, but wanted to wait until my own assessment and award cycle was complete. The wheels of the DWP are turning particularly slowly at the moment, so it has taken a while.
PIP (Personal Independence Payment) was introduced a few years ago, to replace DLA (Disability Living Allowance), to help those with additional living and mobility needs, to meet the expenses involved. It is not a replacement for income through work and goes no where near compensating those with disability and chronic disease for their lost earning ability. Our country does not provide for this – just as the elderly are expected to live on less than younger people (state pension), the disabled and chronically ill are expected to live on less that the able bodied.
Unlike almost all other benefits, to begin a claim for PIP, the first step is to make a telephone call, where some basic identification and other information is requested. Having a long term condition and dealing with the physical and mental affects of this, can leave you feeling vulnerable and self protective, so having to telephone an anonymous stranger to share personal information in order to ask for help is quite a challenge. I think many who could qualify for PIP, may be discouraged from applying even at this first step.
A week or two later, the dreaded PIP form arrives through the post … and the DWP clock is already ticking. The actual form is less like a form and more like a 40 page book, requesting detailed information on your condition, diagnosis, medications, doctors and consultants involved in your care and how your condition affects you. The How your condition affects you section is the most important part of the form and provides much of the information on which you will be assessed.
There are two elements to the PIP assessment and claimants can be awarded Standard or Higher rate payments on each element. The two elements are Daily Living and “Mobility.
Because the form is a paper document, rather than something that can be completed online, most applicants complete it by hand – a laborious task for anyone, but even more so if you have difficulty holding a pen, writing large amounts of text or with spelling, grammar or general articulation (as many PIP claimants do). The other issue with this section of the form is that space is limited … yes, the section of the form where you are required to describe in detail the complicated ways in which your condition impacts your life … the section on which their judgements are made … allows just a short paragraph under each question. I decided to type my responses and physically “cut and paste” them onto the form. Additional pages are allowed, so I included several. Copies of medical letters and any other evidence should also be included.
At some point after this, despite having all of your information, medical evidence, access to your doctors and consultants; a further in-person assessment is required. Before covid, these would be an hour long meeting with a nurse at an assessment centre. Currently, these assessments take place by telephone (my most recent one took 90 minutes). In both cases, they tell you there’s no need to be anxious, they are just there to support you and to ensure they have all the information they need to assess your claim (despite you having already provided it, in great detail, on the form).
After that, they ask questions that seem to be trying to trick you into admitting you are more able than you have stated. It’s humiliating and demoralising. All who have been through this process have common understanding of how gruelling and exhausting it is.
After this, it’s a waiting game! At some point you will receive a letter to inform you of your award (if any) and explaining how they reached their decision. There is a point scoring system under each category within each element and clear information on how many points you have been awarded and how many are needed to be awarded standard or higher rates of payment.
The award lasts for a set period of time (I think it’s usually 2-3 years), after which, your claim is reviewed (you go through the whole process again) and a new decision made. You still need to go through the process every few years, even if your disability is permanent and your disease progressive. At present, the DWP is struggling to keep up with applications and assessments, so award periods are commonly being extended. My current award lasts until June 2025 and I am so relieved to have certainty until then.
If there are any changes in your condition before the next review period, you are obliged to let the DWP know, then …you’ve guessed it … you go through the whole process again. On the advice of my neurologist, this is what I did last year and I must admit that the thought of going through it all again, probably caused me to delay reporting my decline. Thankfully it was worth it in the end, as I have gone from receiving Standard rate for Daily Living to receiving Higher rate for Daily Living and Standard rate for Mobility. It is astonishing just how disabled you need to be in order to meet the threshold for Higher rate for Mobility.
The cost of administering this long winded clunky system must be enormous. The barriers to claimants are significant and too much for many … I’m sure there must be a better way. There are regular campaigns and analysis by disability charities for the process to be made simpler and fairer.
The MS Society has produced a report entitled PIP Fails, which can be accessed here.
So, what advice would I give to anyone who may qualify for PIP?
Keep all letters and any evidence you have relating to your condition and how it affects you.
Make the phone call to the DWP as soon as you can (any award you receive is back dated to the date of this phone call).
Read and research – Look at the DWP guidance website, visit websites and support groups for those with your condition, get familiar with the process and what they are looking for (how your daily life and mobility are affected).
I highly recommend signing up to Fightback4Justice. They are a non-profit organisation supporting disabled people. Once you have joined, you have access to a wealth of advice and information. There are sample PIP forms for numerous conditions, guidance on what to include (everything!) and mistakes commonly made when completing the form. They can also provide personal advice by phone and can advocate on your behalf if you need to appeal a PIP decision.
Type and print your responses if you can. Include all the ways, big and small, in which your condition affects you. Give specific examples and describe how long it takes for you to complete every day tasks. Explain things that you no longer do because of your condition. Explain how this impacts you emotionally as well as physically. Explain you are typing your responses as you don’t feel able to hold a pen and write this much text. Explain how challenging and time consuming it has been to complete the form. Go into detail, give examples (eg of times you have fallen or hurt yourself). We are so good at adapting and accommodating that we don’t always notice the small changes we are making all the time in order to cope – include everything! Don’t complete it all in one go … take your time and think and reflect, ask those close to you what changes they have noticed, run through your average day in your head. If anything seems to fit in more than one section, put it in both. Try to keep focussed on how practical tasks and activities are affected by your condition.
If you cannot complete the form your self, there are several organisations (including Citizens Advice) who will complete it for you.
Once you’ve posted the form, be patient as it will be a while before you hear back from them with your assessment date (waiting is so hard!)
The assessment is daunting, there’s no doubt about it, but try to see it as your chance to expand on anything that they pick up on from your form. They are usually fairly amicable towards you, but they will try to catch you out … DON’T be demoralised by this. Be honest and speak up for yourself (I told my assessor that the extra work created by my cats was worth it, as they help with my mental health).
Once you’ve had the assessment, breath a sigh of relief, then try to be patient again! The DWP are notoriously slow to send letters and you may even spot some money going into your bank account, before you receive a letter informing you of your award.
If you are unsuccessful or not awarded at the rate you feel you should be, you have various rights to reviews and appeals. This hasn’t happened to me (yet) but I would seek help from Fightback4Justice or a similar organisation and proceed that way. Your letter will explain how many points you were given for each question, so it should be possible to identify where they have underscored you.
The whole process will most likely make you feel rubbish … try not to take it personally … it’s the system and the process that’s highly flawed and that’s not your fault ❤️
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).
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) … BartsMSBlog –MovingtheGoalposts
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.
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.
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 ❤️
Falling, tripping, bumping into things, misjudging space and distance – these are all everyday occurrences for many of us with MS. Moving around, using stairs and walking through doorways require concentration and focus and it’s not always easy to maintain that level of focus, when most of your previous life, you didn’t need to! This is one of the reasons why those with MS are often fatigued – every day movement is exhausting.
The Fall – Hit the North
It can also make life a little risky. My arms and legs (and currently my forehead) are often full of mystery bruises from various incidents involving furniture and doorways. I’ve had a few bigger falls and many near misses – loss of balance or footing, or maybe legs refusing to work, but just managing to grab something (or someone) to stop myself falling. I find it quite terrifying!
Fallout Boy – Dance, Dance
A couple of weeks ago I had my worst fall yet and ended up having X rays and various examinations before being diagnosed with bruised ribs (and bruised everything else!). This fall happened in my own home, where I should feel safe and has really shaken me up. If I was having any doubts about moving to a stair free home at this point, those doubts are well and truly gone.
The Primitives – Crash
My house went up for sale a week later and sold for above asking price within a few days. I am very thankful that this was as stress free as it possibly could have been and my buyer seems lovely – she has already promised to love this house as much as I do ❤️
About 10 days after my latest fall, I suddenly developed severe vertigo. My GP and MS Nurse do not believe this is linked to my fall, but is more likely a small relapse. I have a had fleeting episodes of vertigo before but nothing like this – everything moving, nausea and vomiting and everything but sitting still and quiet made it feel worse. I am now awaiting another MRI and an appointment with the Community Rehab Team and have anti sickness meds to help me in the mean time. Thankfully, the vertigo is improving each day and I’m hoping it’ll soon subside altogether.
With the start of the new term, I have been back at work this week. Thankfully, my employer continues to advise that all those who can work at home, should do so. As a person with chronic illness and disability, there are advantages to working from home – mainly that I can get up, log on and just get on with it, rather than negotiate the challenges of rushing about to get ready, sorting out a packed lunch and driving to the office. In the past, I would often arrive at work feeling exhausted from the efforts to get there. I don’t miss the parking issues, queues for the lift, long walk to the kitchen or having to go up or down a floor to visit the ladies. Now I’m starting my working day feeling fresh and ready to go and I haven’t used any unnecessary spoons just to get to that point.
My cats have loved having me at home over the last few months and one in particular loves his morning snuggle on my knee each day. He’s not at all happy that some mornings I’m now sitting at my desk and my knee is no longer available …
Of course there are down sides to working from home and I miss the contact with colleagues and face to face kitchen chats to quickly agree actions or find out information (all so much more formal and convoluted by email).
I have no idea what the new version of normal will be in the future, but I hope there will be continued opportunities to work from home, at least for part of the time. I really feel this would help me to stay in work for longer – better for me and better for society. I know that many disabled people around the world are feeling this too.
House move
Over the last couple of months, I have come to the conclusion that now is the time for me to move to a home without stairs. Thankfully, I haven’t had any further falls, but I’ve had lots of wobbles and near misses. I’m anxious about the stairs every time I use them or cross the landing to go to the bathroom from my bedroom. I love my little house and garden and I love the community I live in, but it’s not right to continue living like this for a longer period of time.
Yikes! ?
I have considered the option of having a stair lift fitted, but that wouldn’t take away my daily fear of falling from the top. I also have a cellar here, which is another challenge, as for some reason no one thought to install a handrail. The loft is also difficult to access and I don’t like having to ask for help whenever I want anything to go up or down. In addition, this house is well over 100 years old and so needs continual maintenance and is expensive to heat.
So, I am now in the process of getting my house ready to sell. I’ve only been here for 3 years, and there was a lot of interest at the time of buying it. The housing market in this area seems buoyant, at least at the moment, so I feel this is the right time to go. I have a plan coming together on where I’m moving to, but will keep that under wraps for now.
HSCT
HSCT has started again in Mexico and I’m already aware of a couple of Brits who have made that journey and are now recovering at home. The clinic in Russia is admitting patients again but I think visa issues have held up any Brits trying to get there. Hopefully this will be resolved soon.
I understand that some patients have started HSCT at the London hospitals, but no one is being treated in Sheffield just yet.
I have an MRI scan in Sheffield on Thursday. Professor Sharrack plans to compare this to the scan I had last July and if he can see new disease activity, he may still consider me for HSCT, which would be amazing. I have very mixed feelings about this. I started a new DMT (disease modifying therapy) a few months ago, which is hoped will reduce disease activity so it would be great if things are calming down. I have a feeling the scan will show a little activity, but not enough to meet Professor Sharrack’s criteria!
I used to find the MRI machine terrifying – feeling trapped, unable to move, cut off from the world and with all manner of super loud clunking and grinding noises going on, but I’m obviously becoming desensitised now, as I haven’t started worrying about it (yet)!
Tecfidera (DMT)
I am pleased to report that the initial flushing, rashes and itching triggered by Tecfidera have mostly stopped now. I still have the odd day when this happens, but it’s much milder. I haven’t yet spotted a link that would explain why it sometimes happens, but more often doesn’t. I have a blood test at the end of September to check liver and kidney function and once that’s cleared, there’s just possible hair loss to worry about!
Many thanks to family and friends for your continued support with all these ups and downs ?
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 ❤️
