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 ❤️
With just 5 and a half weeks until my trip to Russia, my travel plans are coming along nicely. My flights are booked and all necessary paperwork has been sent to the hospital ahead of my treatment. My transfers between the airport and hospital are booked and family are ready to transport me both ways at this end. The hospital is processing my visa invitation and I am hoping to receive this very soon.
I have started buying bits and pieces I will need whilst in hospital and when I get home and it really feels as if things are coming together at last. When we get a bit nearer to my departure, I will post my packing list, in case it’s of use to any fellow MS Warriors in the future.
When I get home after my treatment, my immune system will still be very low and it will be necessary for me to take precautions to avoid infection. I will be asking friends and family to stay away if they are unwell and will be avoiding certain foods such as soft boiled eggs, blue cheese and sushi. I will also be keeping the house scrupulously clean. Niamh and Sophie have volunteered to do a “deep clean” shortly before I come home and we will need to be obsessive about wiping surfaces, light switches, handrails etc to lower the infection risk. We will use anti bacterial hand gel regularly throughout the day and most importantly of all, I’m going to try really hard to keep my hands away from my face (the number one way in which we catch infections).
Arrangements are in hand for my blood levels to be monitored by my GP on my return (with support from Haematology if needed). My GP will also be providing “fit notes”, which Niamh will collect and pass on to my employer while I’m away.
Something I Have had to give a lot of thought to, is how to avoid any risks from my two cats, Ziggy and Luna.
Thankfully neither of them are biters/scratchers and it’s fine for me to touch and interact with them, provided I wash my hands afterwards. We have already ensured that their immunisations are up to date and I will make sure to avoid cat litter duties for the first few weeks. The biggest cat problem I envisage is keeping them off my bed and out of my bedroom ?
I love having plants and flowers in the house but both soil and flower water are potential sources of bacteria and fungal spores. I am going to send all my houseplants to Connor and Sophie’s house for a while and will be politely requesting visitors don’t bring flowers.
—- ??? —-
As you are aware, we have been fundraising to pay for my treatment for some time now. The cost of treatment is 45,000 Euros and with the value of the pound so unsteady at the moment, I find myself anxiously watching the financial markets to see where it is up to. There was a big dip earlier this week, which sent me into a bit of a panic! I’ll be so glad when I’ve made the payment and can stop worrying about this so much!
Our GoFundMe appeal has raised £21,181 so far … thank you to each and every one of you. We have a few fundraisers in the pipeline and will continue after my treatment, until borrowed funds are replayed. If anyone has any fundraising ideas or would like to do a sponsored event, please get in touch with one of us.
At this point, any and all donations will be gratefully received via the GoFundMe page linked below.
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.
—- ????????? —-
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 …
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.
—- ????????? —-
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.
—- ????????? —-
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 ?
Well, after my slightly miserable New Year post, I am pleased to report I’m over that little hurdle now and feeling much more positive. I went back to work on Monday and had a good week. I was tired by the end of it, but not as overwhelmed with fatigue as I was back in November and December. It actually felt good to be back with my fabulous work mates and to get back into a routine. Thank you everyone who helped to make it a good week.
I am booked to go to Russia on Monday 16th March, which is just 9 weeks away! I have completed my hospital registration forms and am awaiting my official invitation, which is needed in order to obtain a Russian visa. I also hope to book my flights in the next few days. At long last, it’s really happening!
There is a lot to do over the next 9 weeks …
We will be having a last push on the fundraising and have a few plans coming together (more info below).
I need a dental check up (it is best not to have dental work for 12 months after HSCT).
I need to plan on what to take with me and pack everything for a month into one suitcase.
I need to think about how to prepare the house for my return with a low immune system.
I need to mentally prepare myself for the treatment and for a month away from home, from family and friends and from my beloved cats!
I’m the kind of person who likes to make lists, so hopefully this will help me to get organised.
It’s the first Vintage Village fair of the decade tomorrow and Sheila has decided to give it a go! If you’re in the area, please pop in and say hello and grab yourself a vintage bargain.
We are in the beginning stages of organising an afternoon tea party shortly before I go (hopefully Sunday 8th March). This will be a fundraiser and also a chance for me to see everyone before I go. We will let you know more once our plans are finalised.
There is going to be a fundraising event at Swan Brewery in Herefordshire on Friday 3rd April. My brother and my sister in law are planning to shave their heads and beard (only one of them has a beard!) and to launch a new beer to mark the occasion! I am so grateful to them for doing this and since I’ll have lost my hair by then too, we can all be bald together!
The lovely ladies at Seed Beauty in Edgeley are doing a sponsored walk up Mount Snowden in North Wales. This will be happening towards the end of March and I look forward to following their story from Moscow.
As you can probably tell from the numerous requests for bottle gift bags, we also have a bottle lucky dip coming soon.
1 year ago we had just crossed the £10K line and here we are now a little over £20K. This is such an amazing achievement and just shows what people can do when they work together. It so good to see kindness and generosity shining through, even though we are living in such uncertain times. I am so grateful to every one of you who has donated, responded to requests for items, come along to an event, taken on a challenge, shared or liked one of our posts, read this blog or sent a message of support …thank you all ?
You can find out more about Stockport Vintage Village by clicking here
You can find out more about Swan brewery by clicking here
You can find out more about Seed Beauty by clicking here
Hello everyone and happy twixmas! What a strange time of year this is … it seems no one knows what date it is, what day it is or what time it is! What shall I eat and when? Shall I leave the house today or have another day snuggled up with the cat, watching rubbish on the telly?
The last few weeks have been filled with their usual ups and downs, so I’m really quite glad of this quiet time to think and reflect and to process everything that’s happened this year.
A couple of weeks ago, I received an unexpected phone call from Professor Sharrack’s secretary, asking me to come for an appointment just two days later. The original date for my follow up appointment was in early February, so I was really pleased that it had been brought forward. Niamh kindly arranged to take the morning off work so that she could come with me and also offered to drive me there, which was a big help. So off we went across a rather foggy Snake Pass, ready for my appointment.
I’m not going to go into great detail about the appointment here, but a summary would be to say that he didn’t say “no” but he also didn’t say “yes”!
Things are all a bit uncertain and he is unsure whether I meet his criteria for treatment. Amongst other things, he said I would likely meet the criteria for treatment by the London HSCT team and would therefore definitely meet the criteria for private treatment in London! Unfortunately, I don’t have time to explore the London NHS option or the funds to consider the private route (£80K+), so neither of those are an option for me.
Prof S also thinks I have Progressive MS with Superimposed Relapses, rather than Relapsing Remitting MS …I’m not sure that I understand the significance of this, so more reading and research ahead for me!
Anyway, I am to have a further MRI scan in Sheffield in January, which Prof S will then compare with the last one (June 2019), before he makes a final decision.
It was so good having Niamh with me to help with the practicalities of getting there, provide moral support and to discuss things with afterwards. I’ve had so many medical appointments over the last few years and it was good to get the views of someone who is new to it all.
We were rather deflated on our journey home. We had been sure we would have a final answer at last and be able to fully focus on either Sheffield or Moscow, rather than this weird limbo we have been in for too long. Having reflected on this further, I feel that treatment in Sheffield is now outside my reach and I need to spend the next few weeks focussing on getting to Moscow. I’m booked to go on 16th March, which is just 11 weeks away!!!
So, let’s get on with fundraising!
At the start of December, we appealed for people to donate to the fund instead of buying Christmas presents and/or cards. We were hoping to raise a few hundred pounds and to hit the £20K mark but your kindness and generosity has been astounding and this appeal has raised an amazing £1,430 …thank you so much to everyone who responded ???
Our grand total now stands at …
We are hoping to squeeze in a couple of fundraising events before March and to do this we will need your help. Do you have any used bottle gift bags you would like to donate? These can be Christmas or any theme. If so, please let one of us know.
If you have any unwanted Christmas gifts we could sell or use as a prize, please also get in touch …we would be very grateful for anything you can give.
Information on fundraisers to follow (and we are always open to new ideas and suggestions too!)
I hope you all had a wonderful happy Christmas and wish you all the best for 2020. Many thanks for all your ongoing support ?
Well it’s been another week of ups and downs here at Warrior Towers. After a week off work, feeling physically and mentally low, I managed to pick myself up in time to get myself to work on Monday. It felt good to be there …I work with the most amazing team of kind and supportive people and I love the work we do (supporting children in care to achieve in education).
Unfortunately, by lunch time, I was struggling. The pain in my right hip, both thighs and left lower leg got worse and worse through the day and I found the noise and lights in our busy open plan office to be a challenge to my ears and eyes.
By the afternoon, I was struggling to follow conversations and to process information. “Brain fog” is a real and frightening symptom commonly experienced by those with MS. The brain is working so hard to deal with the attacks and damage to the central nervous system, that there is little left to deal with the extra challenges of life …or of work.
I went home on Monday and cried. Never have I felt such a failure …and a fraud. I care so much about the children I work with, but they are so important and deserve the very best support, not someone who isn’t functioning properly.
I decided not to go to work on Tuesday. My GP has provided a sick note, which has gone some way to alleviate my guilt for not being at work.
Like all of those working in the public sector, we are over stretched and under staffed. I know that me being off work will add additional strain on my colleagues, at a time that’s already challenging, but I don’t feel I can be at work when I’m not able to do my best, or at least do a good enough job. Thank you to my wonderful team for everything ?
I have spent the week mostly resting and not doing much at all. The trouble with being off work is that it gives you too much thinking time …not good for an over thinker like me! I have managed to relax a little and to live in the moment rather than worrying too much. I use a meditation app called Calm, which has really helped and I’m starting to feel a little more level.
On Wednesday I went to a lovely pre-Christmas event at Seed, my local ethical beauty salon and returned the next day to have my nails Christmasified! Small things, but both lifted my spirits immensely. Today I met my lovely friend, Anne for lunch and girl friend therapy, so tonight I’m ending the week feeling more positive than I did at the start.
A few other things have happened this week …I discovered I have a routine appointment with my usual neurologist on Monday …lucky timing for once. I’ve had telephone contact with Professor Sharrack’s secretary to try to get my appointment with him moved forward (from February) …no answer on that one yet. I also have an appointment with Occupational Health next week, to talk about work and the support I will need in the future. I really want to continue working …I love my job and my team, I believe in what we do and when I’m well, I believe I do a good job. With all these phone calls and appointments, being unwell is becoming a full time job!
Today, I received a letter from the DWP. I knew this was likely to be the outcome of my application for PIP (Personal Independence Payment. With sweaty, shaky hands, I opened the envelope, fully expecting my application to be rejected, only to find I am to be granted lower level PIP! I am delighted with this outcome. For those of us with additional difficulties, life becomes more and more challenging and it also becomes more and more expensive. I have had to reduce my working hours because of MS and this payment goes a (very) little way towards addressing the shortfall. So the week has ended on a positive note and I’m very grateful.
~~ ?~~
Some of you may know that my brother, Jimmy and his wife, Gill, opened their own brewery a few years ago. Since then, Swan Brewery has gone from strength to strength and they already have a number of awards under their belt.
The brewery holds regular and popular open days and Jimmy and Gill have decided that the focus of one of these days will be for them both to have their heads shaved to raise money for my treatment fund! Jimmy is currently sporting a rather impressive beard and this too will be shaved off! To commemorate this occasion, they will also be launching an exclusive new beer …they have been running a customer vote on Facebook this week to choose the name of the beer …head over to their Facebook page to find out the winning name.
This Sunday we have our stall at the Merry Little Christmas Fair at Stockport Vintage Village. Thank you so much to Sheila and Alan for their support. I will be there for an hour or two, if I am up to it and would love to see you there if you can make it.
The lovely ladies at Seed Beauty are pulling a plan together to climb mount Snowden to raise money towards our treatment fund. They have been persuaded to delay this until spring, when the weather will hopefully be more favourable. More info on this at a later date.
Thank you to everyone who has responded to our Christmas card appeal – making a donation instead of buying Christmas cards …I am touched by your kindness.
We have a few other fundraising plans in the pipeline, but will let you know about these once we have more detail.
Read more about MS “Brain Fog” on the MS Trust website here … MS Trust
you can find out more about the Calm app on their website … Calm They are also on social media.
You can find out more about Seed Beauty on their Facebook page (Seed – Beauty Therapy) or Instagram (@seed_beauty_158).
Apply for PIP here … PIP (Please seek support with this. I plan to write a more detailed post on the whole process at a later date).
Find out more about Swan Brewery here … Swan Brewery (or on their Facebook page).
Full details of Stockport Vintage Village can be found here … Vintage Village (they are also on Facebook, Instagram and Twitter).
Thank you once again for your ongoing support. The last few years have been tough and fundraising is a daunting task, but one thing I have discovered is that people are mostly kind, supportive and generous and for that I am eternally grateful …thank you ?
Thank you to everyone who has got in touch since we relaunched our fundraising efforts – your offers of help and support and your good wishes mean a lot ?
Stockport Vintage Village
We will have a stall at the next Stockport Vintage Village, which takes place from 10am till 4pm on Sunday 10th November. If you have anything you could donate, please get in touch.
Please also pop along on the day. The Vintage Village is a great day out and there are some lovely shops, bars and restaurants nearby too.
I am looking at arranging some sort of ladies afternoon tea event towards the end of the year, maybe with music, games and a quiz thrown in! I’ll let you know more about this as my plan comes together.
Seed Beauty Team Walk Challenge
The lovely team at Seed Beauty have volunteered to take on a sponsored walk challenge. Katy, Kate, Yssy, Jules and Vicky are just at the beginning of putting together a plan for a sponsored walk. Watch this space for date, distance and location.
You can find out more about Seed via their Facebook page … Seed – Beauty Therapy.
My sister, Glenda, is planning to get her Nordic Poles out and complete a Nordic walking challenge.
Our cycling team have expanded and are exploring a route for their cycling challenge. This is likely to take place in March when the weather is a little brighter and the day slightly longer, but Alex, Connor, Carl, Sophie, Niamh and Callum will be in training throughout the winter.
We have a team in Leeds who are looking for a Tough Mudder event.
Lots of people have asked if we will be doing another evening fundraiser – I know everyone really enjoyed the last one and those who couldn’t make it would love to come to the next one I’ve even had a 5 year old ask when my birthday is, as he loved my last party so much! We are working on a plan for another one …no details yet, but watch this space!
We would like to get some t-shirts printed, for people to wear when completing challenges. Do you know anyone who may be able to do this for us at no or low cost?
If you have any fundraising ideas or anything else you could do to help, please get in touch with one of us
This started off as Niamh’s idea and has spread to the rest of my immediate family. I was a bit hesitant at first, concerned that I would be spoiling everyone’s Christmas, but they were all so enthusiastic and supportive …thank you all …I really am grateful ?
Now that I have got used to the idea, I realise that I am really looking forward to a Christmas where the focus is on time spent together, rather than the rampant consumerism we are all compelled to partake in.
It will also make this my most environmentally friendly Christmas yet, which makes me happy ?
I haven’t sent Christmas cards for some time now, instead donating money to charity. This year I will give this to my HSCT fund as well.
xxx
Thank you to everyone who has responded to my last post, asking for fundraising ideas. I’ll share more news on this once we’ve formed up some plans. We are still open to ideas and suggestions, so please do get in touch if you have any.
I also want to thank a couple of people who have kindly made recent donations and helped to get things going again ?
It has been a stressful and emotional few weeks for me, which have come to a head this week and led me to make a decision.
As you know, I have had the HSCT clinic in Russia on hold whilst pursuing the possibility of being treated in Sheffield, here in the UK. Today we made the decision to rebook Russia and start fundraising again. Lots of things have contributed to this decision…
On Thursday I had a meeting with a psychologist who works with my team. Amongst other things, she has occasional meetings with us to advise about difficult cases and talk about anything that’s bothering us. She is also a friend and knows about my health situation. I’ve been struggling the last few weeks, feeling very low, physically and mentally. Anyway, we spent most of our time talking about it all. It was so good to explain it all in words and acknowledge how difficult I have found this situation. She was so good at helping me to focus on what’s important and what I need to do. I think one of the reasons I have felt so down is that it feels everything is out of my control and all this waiting is really stressful … and I don’t even know what I’m waiting for!
That evening I fell at home and really hurt my foot/ankle. My leg gave way when I stood up and my foot kind of folded awkwardly under me. It’s the first time I’ve had a bad fall at home and it really scared me (and terrified the cat!)! It reinforced the realisation that I need to DO something now, before I get any worse. If I wait for the Sheffield option to run its course, another 6 … 12 months or more could go by and it could still be a NO.
Apologies for the ugly foot picture!
On Friday I received a letter from Professor Sharrak’s registrar, regarding the outcome of my MRI scan, which took place back in June. It describes numerous lesions in various parts of my brain, but no active inflammation. I’m not sure if any of the lesions are new, as I don’t think they’ve been able to compare to my last scan (which was at a different hospital). Its worth mentioning that 4 years ago, I had no brain lesions, then some “tiny white spots” were found and these then increased in size and number between each scan. The letter is really unhelpful! And no change to my appointment (5th Feb).
I met with my lovely friend Anne on Friday afternoon and talked to her about everything – she told me how hard it is to see me gradually getting worse and how worried she is about me. She felt that no one one would criticise me for planning to go to Russia as soon as possible, having a definite date to work towards and doing all I can to give myself the best chance of getting better.
I spent much of Saturday with my children, Connor and Niamh. We went for a walk and then for lunch. They are both worried by waiting any longer and want me to be treated ASAP. Niamh has been terribly upset since hearing my appointment is in February and we all agreed we should focus on Russia and get me there as soon as possible.
So that’s where I’m up to!
I can’t tell you how much better I feel to have made this decision and to have the support of my family and friends. I am waiting for a response from the clinic with a date to work towards and will plan from there.
What do you all think?
We already have some fundraising plans brewing and some old ones to resurrect. We are open to ideas, offers of support or anything else that might help …please get in touch with one of us if you have any suggestions.
I want to say a special thank you to Sally, Anne, Connor and Niamh for helping me to get to this point this week and also to family, friends and colleagues for all your ongoing support ?
