Vicky

54 Neurology appointment

I finally got to meet my new neurologist yesterday and to find out why I won’t be seeing the old one. It turns out that my previous neurologist has left the NHS, in fact, he has left the country and has returned to Malta! My political mind wonders if this was Brexit related …I guess we’ll never know.

So my new neurologist was doing an additional catch up clinic for those of us left without a neurologist. He was a nice man but the whole appointment felt a bit rushed and pointless. He wants me on another DMT, but didn’t ask how I felt about that and he wasn’t aware of my letter enquiring about HSCT.

I asked him about HSCT and he looked a little flustered then explained that he thought it was likely helpful for some patients, but that we need more large group, long term clinic trials to be clear on who it might help. He also said that there was a number of drugs left for me to try, before considering anything more drastic.

He briefly mentioned “people who fundraise or sell their homes” to pay for treatment abroad (not realising that I am on my way to being one of them) and made some strange claim about those patients claiming to have improvements or to have halted their MS, but him not being convinced it was true! He felt some improvements were psychological and linked to the fact that people have invested in the treatment and believed it would work.

I wasn’t quite sure what he meant by that (intensive chemo, followed by stem cell transplant, having a placebo effect??) but decided not to discuss it further or tell him I am planning to have HSCT myself.

I felt he was a nice man and clearly believes that current drugs are good for his patients. It wasn’t until I was on my way home that I realised he didn’t ask me how I am, about new symptoms, or, in fact, my views or experience of anything at all!

So, that’s it, my hopes of accessing HSCT in the UK are now over. I am now one of those MSers who is diagnosed, shoved on drugs and seen once a year for a review (during which no one will actually ask how I am!).

I felt quite down about this last night but am ready to fight on today. Being an advocate for your own health is something we should all do, whatever our ailment. Knowledge is power. Find out what you need, find out how to get it and don’t give up 💪🏻

I now need to get back to fundraising (and possibly borrowing) with a vengeance. I think I’ll buy a lottery ticket for this weekend’s draw! 🤞🏻

On the plus side, the clinic in Moscow (as well as the one in Mexico) is infinitely more experienced in treating MS patients and has a much better safety record. I really will be in the hands of world experts and that feels good to me!

I also left the hospital armed with a bit of light reading!

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53 Thank you ❤️

I just wanted to write a quick update to say thank you for all the supportive messages I’ve received over the last couple of days. I really do have some wonderful people in my life xx

I must admit, I really didn’t feel like going anywhere Friday night, but once I had got myself ready and out, I was so glad I did. I work with a lovely team of 13 who are kind and supportive colleagues, but also great friends. We are very busy at work and in and out of the office at different times, so it can sometimes feel a little chaotic. It really was lovely to be able to sit and chat and enjoy the start of the festivities together.

I have included this photo as I think it is the first I have taken with my clumpy boots and walking stick. I would have avoided taking this a few months ago, but writing this blog has helped to see that it is much better to be open about things, rather than hide away.

A highlight of Friday evening is that, after over 30 days as a tee-totaller, Julie got to have her first alcoholic drink! She also got to try a porn star martini for the first time …I think she rather enjoyed it!

Thank you for doing this for my funds Julie xx

After my stressful day and night out on Friday, I was totally out of spoons on Saturday. I spent the day on the sofa, resting and recovering and felt much better today.

I managed to get out of the house with Niamh, Sophie and assorted dogs this afternoon and to give my trecking poles another outing. A bit of fresh air and exercise was just what I needed …thanks girls xx

I have also managed to do some research on the neurologist that I am seeing on Wednesday. Although I have spoken to one person who had a bad experience, I also heard from others who spoke highly of him and his knowledge of HSCT. So maybe the situation isn’t as bad as I thought after all. I’ll write more about that next time.

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52 Hospital blues

Today I had an appointment with my neurologist at Salford Royal Hospital. All my previous appointments have been at Stepping Hill, but last time I saw him, he suggested I see him at SRH, where he and his team are based.

So, last night I spent quite a bit of time preparing by making notes and gathering documents together, set my alarm for 6.30am and following a sleepless night, got up and ready and set off for the hospital.

I was a little early so had time to grab a coffee and admire the hospital building, before checking in for my appointment.

It was at this point that I was informed that there was no appointment and my neurologist is on holiday! I was told that I should have received a letter about this and it wasn’t possible to check if an alternative appointment has been allocated because her system couldn’t communicate with the neurology system!

I was upset/angry/disappointed by this, perhaps more so than I should have been and basically sat in the waiting room for quite a while, feeling helpless!

As mentioned before, Salford Royal is quite an impressive hospital, with a cafe and shops, so I indulge in a little retail therapy and another coffee, then set off for home.

I used to work in Salford and know of a sneaky back way on to the M60, missing out the M602 …what I didn’t know is that there are roadworks on my sneaky route, meaning my journey home took almost 2 hours! I think the radio station I was listening to must have known …

I was relieved to get home, then flabbergasted to find this on my doormat …

No mention of my appointment being cancelled, but notification of another appointment (with a different neurologist) next Wednesday!

I don’t know what to make of this?! The new neurologist is one I’ve never met, but know from others that he is not pro HSCT. I would really prefer not to see him. I have put in calls to my neurologist’s secretary and my MS Nurse and am waiting to hear back from them.

Why does all this matter? …Well, as you know, I am worried about the progression of my Multiple Sclerosis and would like to have HSCT as soon as possible to try and halt the disease and prevent further damage to my brain and spinal cord. I have been in touch with a clinic in Russia and am frantically trying to raise the funds to pay for treatment.

Fundraising is stressful and exhausting, at a time when my mental and emotional reserves are low and I also don’t relish the prospect of travelling for treatment, or more precisely, the journey home following such a gruelling procedure. If I could have HSCT in the UK on the NHS, much of my stress would be removed and I could focus my energies on staying well and taking care of myself. I’m find it really hard to keep going with all of this.

I know the chances of me getting treatment in this country are slim, but I wanted the chance to talk to my neurologist about it to see if he would consider referring me. I also hoped that, even if he felt unable to support my treatment in the UK, he might at least give me his blessing and be willing to monitor me when I get back from Russia. Now, I don’t seem to even have the chance to speak to him!

Anyway, I’m off out for my work Christmas do this evening, so will hopefully pull myself together, put my happy face on and have a good evening. I consider myself very lucky to have fabulous workmates, so hope to be feeling a bit brighter by the end of the night 🥂

51 A bit more about HSCT

In my quest to find out more about HSCT and decide whether it is the right option for me, I have spent a lot of time reading accounts of other people’s experiences.

Thankfully there are many people who have shared their experiences of treatment and their recovery through blogs, videos, Facebook pages and discussions in online support groups.

There are a couple of recurring themes I have come across. In terms of halting MS and improving symptoms, there seems to be a wide range of outcomes – from huge life changing improvements to very little change at all. The vast majority see the progression of their disease stopped and it is important to remember that this is the aim of the treatment. HSCT doesn’t “cure” MS but there’s a good chance it can put it in remission. At the moment, this would be a dream come true for me!

For a few people, the disease isn’t stopped by HSCT and their MS progression continues. Despite this, I have come across very few people who regret having HSCT and a very rare one or two who are thinking of having HSCT for a second time!

I think, because it feels as if MS has taken control of your life, it can feel empowering to be doing something to fight back and not give in to that control. The most common regret I see expressed by those who have had HSCT is that they didn’t have it sooner, before accumulating as much damage.

Last week, The Times published an updated personal account written by BBC correspondent, Caroline Wyatt, of her progress and recovery from HSCT.

If only we could all look this cool with a walking stick!

Caroline has had a mixed recovery and says this about where she is now…

“Nearly two years after my stem cell transplant, I’m back to where I started. Yet curiously, I am also more at peace with myself, with my life and with multiple sclerosis.”

You can read her full account here (you will need to provide your name and email address in order to read the full article – it’s quick and easy and there is no commitment).

It is an inspirational, highly personal, honest account and many of us in the world of MS/HSCT are grateful to her for talking openly about her experiences …

Caroline Wyatt: multiple sclerosis and my stem cell transplant, The Times, November 17 2018

Many MSers recovering from HSCT feel that their recovery isn’t complete until 3 or 4 years after treatment, so there is hope that Caroline could see further improvements.

Caroline wrote an earlier account of her treatment at Clinic Ruiz in Mexico, which can be read here …

Caroline Wyatt: How I’m feeling after my MS ‘body reboot’, BBC, March 22nd 2018

You can follow Caroline on Twitter @CarolineWyatt

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50 Wilmslow Festive 10K (and Blue Badge trial run!)

Today was the day of the Wilmslow Festive 10K. Unfortunately I wasn’t well enough to go and cheer the team on and to be official photographer, but they managed to get one or two pictures of their own, after their run. Other photos are from the Run North West official Instagram page.

There was the usual chaos and crowds before the start with Niamh and Cal unable to find Jake and Jess. Jake’s brother and his fiend were also running today, but I don’t think they all managed to get together until after they had finished.

It’s been very cold here recently and today was no exception but it was also bright and dry, so perhaps good conditions for running (says someone with no knowledge at all of what constitutes good conditions for running!).

Niamh continues to struggle with her hip injury, which has impacted on her training and flared up again this morning. She is a little disappointed in her time of 1 hour and 5 seconds and I think she’ll be giving running a miss for a while now (she is however, talking about some sort of swimming challenge and a coast to coast walk, so there really is no stopping her!).

I haven’t heard the times for the others yet but have heard that winner of the women’s race, Eilish McColgan achieved a new course record of 32:40 (perhaps I was right about the running conditions after all?!) .

The guys have collected their medals and headed home for a well earned rest, some warmth and a Sunday dinner!

Well done all of you …absolute superstars ❤️❤️❤️❤️

In other news, my Blue Badge arrived in the post on Friday and I manage to give it a test run on Saturday.

I met up with my lovely friends Brenda and Karen and we all squashed into my little car and headed off to the Christmas Makers Market at The Lowry. It took a lot longer than planned to get there (the Mancunian Way is definitely to be avoided at this time of year!) and we were a little confused by the disabled parking arrangements, but managed to suss it out. We received a top tip from the parking attendant – keep a photo on your phone of your Blue Badge – and may even look as if we know what we are doing next time!

We had a lovely couple of hours looking round the market (although our total purchases for the day amounted to a loaf of artisan bread and a bobble hat – I don’t think we are quite committed to Christmas yet!). I have been feeling a bit rubbish lately but found an afternoon with good friends really lifted my spirits …thank you, you two ❤️

Another thing I learnt was that if you try to eat a crepe with melted white chocolate, whilst standing up, holding a bag and a walking stick, when you’re feeling a bit wobbly, you will end up with melted white chocolate all over you!

We returned to the car park and realised we had been so focussed on sorting out the parking ticket (which was lost for about 10 minutes) and the Blue Badge, that none of us remembered where we had parked the car! So there we were, 3 supposedly intelligent women (all teachers!) with no sense of direction, spacial awareness or memory between us!

Julie is still doing well on her alcohol free November challenge …not long to go now Julie! 🥂

I’ll update you on other plans soon xx

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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 💦

❤️

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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

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47 More red tape

My Blue Badge assessment wasn’t too bad in the end. An observed pavement and stair walk, followed by an interview. I had taken some medical notes and letters with me, which proved helpful and the interviewer asked me lots of questions to extract information to gain as many points as possible.

Today I heard that I had the required number of points (12) and now qualify for a Blue Badge. I had hoped to pick it up this afternoon (as I work in a neighbouring building) but apparently it has to be posted to my home from somewhere in Nottingham (why does it have to be so convoluted?!).

Once I have the Blue Badge I can then apply to my work place parking team (who work in the same building as the Blue Badge assessor) for a parking permit. Until then, you may still see me wobbling about in the streets near my work place …I will try my very best not to fall on my face or get run over whilst waiting for this to be sorted out!

In other news, the four Wilmslow Festive runners are getting some training runs in and wondering what they’ve let themselves in for. It’s rather cold and damp here at the moment, so let’s hope it’s a bit brighter on the 25th!

There was a bit of a kerfuffle earlier in the week when everyone’s race numbers arrived, well, 3 of the 4 arrived as it transpired one doesn’t know her own postcode! Let’s hope she doesn’t have similar problems with the route on the day!

Here’s a map showing the starting point just in case!

I’m hoping to get a little team together to go down and cheer them on – do give me a shout if you’d like to come along.

If you’d like to sponsor Jess, Jake, Callum or Niamh, please see them in person or click on the link below (please mention them in your comment).

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46 Blue badges and red tape

Tomorrow I have an assessment for a Blue Badge. I don’t actually want a Blue Badge, but have found myself applying for one and being invited for an assessment.

In my daily life, I am trying to continue as “normally” as possible. I also want to keep moving as much as I can and feel no need for special parking privileges.

But then there’s parking at work …

I work for my local authority and one of the biggest issues all who work there have, is the lack of parking. We basically have two choices – pay £50 per month for a parking space or park 10 or 15 minutes away and walk. There’s an extra issue here as my job involves travelling to meetings at various places, so I can end up in and out of the office during the day, sometimes carrying paperwork, laptop etc.

Until now, I have always chosen to park and walk – I didn’t want to pay for parking and I figured that those short walks were good exercise. But now walking to and from my car for work is becoming quite a problem for me. All the roads close to my work place are sloping or uneven or both and quite a challenge for someone with poor balance and wobbly legs! Throw a bit of windy weather and Northern rain in the mix and my journey to work in the morning can be like an endurance challenge!

I have posted before about how fatigue affects my daily life and the need to conserve spoons (energy) Some days I am so out of spoons by the end of the working day that I struggle to manage the walk to my car. I don’t feel safe on days like this – my right foot drops sometimes and catches on the ground, I sway when I stop at the kerb to cross a road and sometimes feel vulnerable as I feel so weak and exposed.

Under the Disability Discrimination Act, I am allowed to ask my employer to make reasonable adjustments to support me to be able to work. I’ve had a couple of appointments with occupational health and discussions with my team manager and am well supported – I really value all the support I have received from my team and manager. The only additional adjustment I have requested is to be provided with a parking space in the car park beneath the building where I work.

The response from HR was that I am already provided with parking …I just need to pay for it! I have argued that this is unfair – I choose not to pay for parking but my disability is forcing me to do so, but they weren’t for budging.

I occasionally have reason to walk through the car park and it’s never full (because most staff are choosing not to pay for parking), so it’s not as if providing me with a space would cost them money or do someone else out of their space.

My manager looked at the possibility of paying for my parking using team funds but was prevented from doing so by (yes, you’ve guessed it) …HR. HR then advised me that the only way I could prove I needed a parking space provided was to get a Blue Badge.

I decided to look up the criteria for being allocated a Blue Badge to see if I was eligible and discovered …there aren’t any! Responsibility for issuing Blue Badges lies with each local authority and they can decide their own criteria and assessment process.

So, now I find myself attending a Blue Badge assessment, where I have no idea of the criteria, which is being carried out by someone from the local authority …the same local authority that is my employer, who have already refused my parking request!

So, Blue Badge assessment, here I come! Let’s hope I pass! …or should that be fail??!

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Ask me a question …

45 Ask me a question …

I am aware that I’ve just been talking at you for weeks about my MS, my pursuit of HSCT and our fundraising efforts. Whenever I talk to friends and family, they always have lots of questions, so I thought I’d throw this open to everyone!

So, if there’s anything you’d like to know, you can submit a question in the comment box below or through any of the following:

Instagram @anothermswarrior

Twitter @anothermswarrio

Facebook Another MS Warrior

Or, if you know me you could WhatsApp, text, email or ask me in person!

I’ll pull any questions together and try to answer in future blog posts.

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