Tag: Facebook

132 Acknowledge, accept, release and let go

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. 

MS Trust: Clinically Isolated Syndrome (CIS)

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 ❤️

117 MS and HSCT online roundup

I am so glad to have this illness at a time when we have access to information, opinion and support online.  If my only source of information was my neurologist, my life would be a complete mess by now! 

I am a big supporter of the NHS, my parents were both GPs and I’ve been on marches to protest funding cuts, but … I really don’t think the NHS has it right yet, in managing chronic illness and supporting patients with long term health problems.  It is common for MSers to have a long fight to be taken seriously, to be referred to a neurologist, to be diagnosed and then to receive appropriate treatment and support.  

Meanwhile, in other parts of the world, rapid diagnosis and early treatment has been shown to be the best option for patients in terms of minimising progression and disability and the most cost effective for health services.  

At present, I see my neurologist for 10 rushed minutes once per year.  He doesn’t even ask me about new symptoms or my opinion on anything!  It’s a very deflating experience and I don’t feel at all supported (probably not his fault – what can he do in 10 minutes?).  I should have had access to an MS Nurse for ongoing support and advice for the last few years, but unfortunately my neurologist forgot to refer me and I have slipped through the net (despite numerous phone calls and requests from me).  

I recently had an appointment with an Occupational Therapist, which has been a really positive experience.  She has given me advice, access to equipment and most of all, she has listened to how MS affects my life. She has also managed to chase up the MS nurse service and they are finally acknowledging my existence!  Thank you Hannah ?

I have learnt a lot about MS through reading and researching online.  The MS Trust, MS-UK, Shift MS, the MS Society (amongst others) are all excellent sources of information and guidance.  Another source of knowledge is Dr Aaron Boster, who is an Ohio based MS neurologist with a Youtube channel, where he seeks to educate and empower people with MS.  Dr Boster works on the premise that neurologists and other practitioners working with MSers should have the goal of helping each person to be the “most awesome version of themselves”.  I love this!  I want to be the most awesome version of me that I can be!  Here’s a short video in which he answers viewers questions on how to manage their MS symptoms …

There are many other videos on a variety of topics linked to MS on his YouTube channel … well worth a look if you, or someone you care about, has MS. 

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I have spoken before about following the journey of Scott McCormick (Gogglebox) as he underwent HSCT at Hammersmith Hospital in London.  Scott is recovering well, has had no further disease progression and is now back at work and enjoying life.  He is doing all he can t raise awareness of HSCT.

He has written a couple of blog posts for MS-UK to summarise his experience …

Part 1 My neurologist tried to talk me out of having HSCT

Part 2 I was told to expect the worst I could imagine, and then some

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My main source of information, advice and personal accounts of those who are seeking or have had HSCT has been through the UK Facebook support group.  This is a closed group for MSers and their supporters only.  

I thought I’d share the link in case any fellow MSers are interested … link 

Another source of support is a new UK charity, AIMS (Autoimmune and MultipleSclerosis), which was set up a little over a year ago.  A group of MSers and their partners experienced the tough journey to access HSCT and they set up AIMS as a means of helping others on that journey.  They are now a flourishing charity and have started rolling out travel grants to those of us having to go abroad for treatment. 

You can read more on their website here.  I would recommend anyone who wants to know more about the treatment, to read their excellent summary “What is HSCT?”.  AIMS also have an active social media presence and can be found on Facebook and Twitter …please follow them and share with your friends. 

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On Monday it will be just 6 weeks until I set off on my journey to Moscow in an attempt to stop my MS progressing further.  I’m feeling really positive about my decision and so grateful for the support of my family and friends ❤️ 

I’m a little tired and stressed, but this is more about the worry of getting myself and my home ready and managing all the planning and practicalities involved.  

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We are still fundraising and have a long way to go before we reach the total needed to fund my treatment.  A family member is kindly lending me the outstanding funds as I am worried about delaying my treatment any further. This means that I will be continuing to fundraise after my treatment so that I can repay my loan. 

My journey to Russia begins on Monday 16th March and we are holding a fundraising fare well tea party on Sunday 8th March.  We’re still finalising the details and will share those with you soon, but please put the date in your diary … we’d love you to come along and bring your friends and family ?

GoFundMe 

96 MS and HSCT online

Well it’s a week into the school holidays and I’m finally starting to unwind a little.  I have decided not to book a holiday or even a trip to the IoM and to just stay home, relax, see friends and get a few jobs done.  

My garden is small and I usually manage it myself, but the recent warm weather combined with heavy rain fall, means that everything has grown madly over the last few weeks and it’s is now a bit beyond me!  

I am still anxiously awaiting news from the hospital in Sheffield.  I am expecting an appointment in “mid-August” but haven’t been informed of one yet.  It’s very hard to plan anything at all, as I want to make sure I’m available for the appointment. 

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I am one of those people who needs to learn as much as I can about things that affect me, so have been reading and researching all things Multiple Sclerosis since before I was formally diagnosed. It was through doing this that I came across a BBC news report on the MS MIST (HSCT) trial, leading to further research on whether it could be the treatment for me and how I could access it.  

In case anyone else is starting this journey or for anyone who is interested, here are some of the sources of information and support I have used.  

MS Society

In the UK, there are several organisations providing information and support for those with MS, their families and friends.  Perhaps the most well known of these is the MS Society.  The MS Society provides information via their website, has local support groups all over the country, funds research and campaigns on behalf of MSers.  The MS Societies in various countries are all linked and receive some of their funding from major drug companies.  The information they provide about MS is likely to be very reliable, however, there is concern amongst some MSers that that the Societies may be influenced by their pharmaceutical backers and that people with MS may not always be their first priority.  Certainly, it is very evident that the MS Societies do not promote HSCT and some of the information they provide on this is both inaccurate and overly negative. 

MS Trust

The MS Trust is another large UK organisation providing information and support for those impacted by MS.  The information on their website is reliable and easy to understand and I have also found their telephone helpline to be useful.

MS-UK

MS UK is a slightly smaller UK organisation, with a useful website and helpline. 

Shift.ms

Shift MS is a patient driven world wide organisation providing an online community of fellow MSers, where all aspects of the disease, treatments and everyday life are discussed. 

All of the above have social media presence on Twitter, Facebook and elsewhere and provide news and commentary on new developments in managing MS, living with disability, entitlement to benefits etc. 

When researching HSCT, it is not easy to find reliable information and patient experience.  The most reliable and supportive resource for me has been the Facebook groups, which are run by HSCT patients.

There is a general world wide HSCT group … HSCT Hematopoietic Stem Cell Transplant – MS & Autoimmune Diseases (Facebook group)

And a very helpful UK group – UK HSCT for MS and Autoimmune Diseases (Facebook group) – where UK citizens can get advice and chat with others about accessing treatment here or abroad.  There are further groups for the clinics in Russia and Mexico (as well as some others).  

AIMS (Autoimmune and Multiple Sclerosis)

There is also a new UK charity, the world’s first that supports people with MS and other autoimmune diseases to access HSCT.  The charity was set up by some HSCT patients and their partners and had its official launch last year.  They are mainly operating via their Facebook and Twitter pages at the moment and have recently launched their first invitation to those pursuing HSCT to apply for financial support with travel expenses.  

These have not been my only sources of information … I have also read numerous research reports and neurology opinion pieces, which have all helped me to feel confident in my decision to pursue HSCT.

A couple of my fellow HSCT UK Facebook group members have recently had their stories reported in the national media.

Colette and Lucy were both successfully treated by the team in Sheffield. You can read more about their stories here … Colette and Lucy.

62 New Year – New Numbers

I can sometimes be a bit of a geek, so please bear with me while I briefly indulge my love of numbers …

*This refers to comments posted on the blog page. 
I often get texts, messages etc in response to things I have posted …too many to count, but they all mean a lot to me ?

As you can see, we are almost a quarter of the way there with our fundraising campaign. Never in my wildest dreams did I think we would do this well …thank you to everyone who has contributed with donations, shares or by taking on challenges.

We have a few other events in the pipeline but I am very aware that we are unlikely to achieve the full amount by the date of my treatment.  Ideally I would like to pay early so as to avoid the crashing of the value of the pound when we leave the EU.  Next week I plan to begin looking into options on borrowing to pay the rest. I am not very money savvy, so if anyone has any advice or guidance you could give me on that, please get in touch.  Our plan would be to continue to fundraise and hopefully repay the loan by the end of the year.  

I also want to share this YouTube video with you …

Aaron Boster is a well regarded American neuro immunologist. In this video, he makes the argument for a therapy deescalation model, where a patient gets the most potent therapy, as early as possible in the disease course. He describes induction therapies as the best option and includes HSCT (Hematopoietic Stem Cell Transplant) as one of these.  At present, patients are initially offered the least effective treatments, with an escalation to more effective treatments if the first drug fails.  He also makes some interesting comments about how a patient’s age can the impact the efficacy of DMD’s.

GoFundMe

Facebook

Instagram – @anothermswarrior

Twitter – @AnotherMSWarrio

49 She’s a waterfall …

I’ve been feeling a bit sorry for myself over the last few days.  Lots of reasons – worrying about the future, wondering how long I can manage working full time, resenting how much time I spend planning how to preserve spoons (see previous post on “spoon theory”), noticing worsening symptoms and also dealing with feeling cold most of the time.

According to the MS Trust, between 60 and 80% of those with MS struggle with heat sensitivity …I don’t think I fall into this group.  This is what they say about cold sensitivity…

“Cold sensitivity is less common with MS than heat sensitivity, and it tends to affect different symptoms. The symptoms most likely to be affected are nerve pain, mobility and spasms. Depression and fatigue may also be triggered by the cold, particularly if it coincides with poor weather and less sunlight.” 

I think that sums it up nicely!  I always struggle mentally with winter and this year is no exception.  In addition to this, my thyroid levels are all wrong at the moment, so feeling cold is something I’m stuck with for now.   As well as MS, I have Hashimoto’s Disease (autoimmune thyroid disease) and am currently working with my GP to get my meds at the right level – unfortunately we’re not there yet! 

Yesterday, whilst scrolling through Facebook, this photo of me from exactly a year ago popped up …

A year ago I could go to a gig and dance all night, I didn’t need a walking stick or a Blue Badge and although I was experiencing episodes of fatigue, I didn’t have to give too much thought to how many spoons I had left to get through the day.   I am haunted by the feeling that I’m slowly fading away. 

Today I met with my lovely friend, Beth for a coffee and a chinwag (therapy really!) and when I got in the car to travel there, one of my favourite songs came on the radio …

This song has a lot of meaning for me – it tells me I can get through things if I just keep going.   So, I can get through this bit of a blip too.   Thank you Stone Roses and XS Manchester. 

Later, I had a visit from my son and his dog and we went for a walk in my local park …lovely. 

So, today has reminded me that the best things in life are all around us …we just need to make sure we value and appreciate them.  Here’s my list from today:

  • Music ?
  • Friends ?
  • Coffee ☕️
  • Cake ?
  • Family ?‍?‍?
  • Pets ??
  • Fresh air ?
  • Sunshine ☀️
  • Trees ?
  • Water ?

❤️

GoFundMe 

48 Help needed!

We’d like to ask for your help …and it won’t cost you a penny!

We would like to try and increase the online presence of my fundraising pages.  This is because we plan to start appealing to businesses and contacts for donation of items and services we can auction, or give as raffle prizes at an event we’re planning for early in the new year.

We’d like to give all donors a mention and it would benefit them most if we have as wide a readership as possible.

So, here’s what you can do to help …

Subscribe to my blog anothermswarrior.com so that you receive email updates on new blog posts.  You can always direct the updates to your junk folder if you don’t want to read them!  At the moment, we are getting a lot of hits and people reading through from page to page, but don’t have many subscribers currently 2640 hits and 18 subscribers.

If you are on Facebook, you can Like and share our page Another MS Warrior . Liking, sharing and commenting on posts helps too currently 54 page likes.

If you are on Twitter, please follow us @AnotherMSWarrio.  It would be great if you could Like, reply and retweet tweets (Twitter is a whole new language for me!) currently 84 followers.

If you are on Instagram, please follow us @anothermswarrior currently 121 followers.

We are so grateful for all the support we have received so far …there is still so much kindness in the world ❤️

Please share wherever you can xx

GoFundMe

41 Head and chin shave

Yesterday I received a message to have a look on Facebook.  This is what I found …

Callum (the one with the long hair) is my daughter’s boyfriend and Calum is his friend (you can tell them apart by the number of l’s).

The message above says …

“Right then folks , this guy has agreed to let me shave his head and beard if we can raise £2k to put towards a great cause , have a read here. https://www.gofundme.com/another-ms-warrior If you’d like to donate please comment “ Callum’s head shave “ on this post so we know when we’ve hit the target and can get this guy looking 12 years old again ? Soon as we hit the target I will be posting a video for everyone to watch and laugh!”

Callum has been growing his hair for over 4 years now and has volunteered to, not only have it cut off, but to have his head and chin shaved too.  Thank you Callum (I expect I will feel guilty about this one for 4 more years!).

Callum loves his long hair and has only agreed to give it up for a price … £2,000  Money and pledges are rolling in already …going bald is clearly an attraction! ?

The head shave will take place in early December and of course, we will update with photos/video then.

Callum will be donating his hair to The Little Princess Trust.  You can read more about their work by clicking this link.

In other news, we have launched our Facebook page today …

Please click on the image and like, share, post ?

33 BBC Breakfast ~ Friday 19th October 2018

Yesterday was an exciting day in the UK world of MS/HSCT, when BBC Breakfast did a feature on HSCT.  The item featured Roy Palmer and his partner, Helen talking about the amazing life changing improvements he has experienced following HSCT.  Roy was in a wheel chair for 10 years and is now walking again!

HSCT works!! ??‍♂️

Roy is a member of the online support group that I am also part of and is living proof that HSCT can help those who are older (Sorry Roy!), have long established MS and who are no longer mobile.  Like most of us, Roy had to fight to get HSCT  and prove that he met the strict criteria required for NHS treatment.  It was wonderful to see Roy so happy and positive on the BBC Breakfast sofa!

Whenever the BBC feature any discussion about MS, they always wheel out an “expert” from the MS Society and this is where many of us begin to feel frustrated at the slow progress in making HSCT more widely available to MSers who want and need it. 

The MS Society does some excellent work in providing information on the disease and on current mainstream treatments.  They also facilitate many groups and activities at a local level, which is a huge support to many.  But they are not only slow to promote HSCT, but actually continue to provide untrue information.  HSCT is not an experimental treatment and is not only appropriate for a very small number of those with MS.  There are too many success stories from patients with diverse presentation of the disease for them to continue saying this …yet they do.

Worldwide MS Societies are all connected and are partly funded by the big pharmaceutical companies, who make millions from the drugs currently used to treat those with MS.  I guess if we all had HSCT, hardly anyone would need those drugs anymore and their funding stream would end.  I don’t know if this is the reason for their reluctance to get behind HSCT, but find it hard to accept that an organisation that exists to support those with the disease, does not always seem to have the interests of patients at the forefront.

As well as fighting for my own treatment, I find myself wanting to fight to help others.  So yesterday, along with others I found myself posting on BBC articles about the item, directing people to more reliable sources of information. 

The UK now has a new charity dedicated to supporting those with MS (and other autoimmune diseases) to access HSCT.  The charity was formed by a group of MS Warriors and partners of MS Warriors who have had HSCT treatment and want to make a difference to others.  

You can find out more about their work here…

AIMS Facebook Page 

or on Twitter @aimscharity

For those with MS who are interested in HSCT, there is an excellent Facebook group for information and support.

UK HSCT Facebook Group

And YES, I am going to the ball! ????

9 Are stem cells the answer?

 

A couple of months ago, I was watching the news when this report on Hematopoietic Stem Cell Transplant (HSCT) for multiple Sclerosis appeared…

Stem cell transplant “game changer” for MS patients (Fergus Walsh, BBC 18 March 2018)

I’d seen “stem cell therapy” and “stem cell transplant” mentioned on various MS websites and support group pages, but thought it was a long way from being available on a scale that might be helpful to me.    There  are also a whole host of scam, money making clinics around the world, offering various stem cell treatments for a range of ailments, with no evidence of success. 

I decided to research further. 

I have spent the last few months reading as much as I can about HSCT, speaking to others who have had the treatment and asking lots of questions.  I am so lucky this has happened to me at the time of social media and internet access – so much information at our finger tips.  

HSCT works by tackling the faulty immune system – the root cause of MS – rather than treating symptoms.  By “wiping out” the immune system and rebuilding a new one without the memory of MS, 70-90% of patients experience a halt in disease progression, with many also experiencing an improvement in their symptoms.  These outcomes far exceed any current drug treatment for MS.

There is much more I could write about HSCT, but the main thing I want to say for now is that I have come to the conclusion that HSCT is, by far, the safest and most successful treatment for MS currently available.

My next step is to find out how I can access it …