Vicky

34 Having a bad day

When I started this blog, I made a decision that I was always going to be open and honest about my battle with MS. I find I have good days and bad days and sometimes feel deep despair, but mostly I feel positive and optimistic and look at ways to overcome challenges rather than letting them stop me doing what I want to do.

Today I am having a really bad day, both physically and emotionally.

Last night my lovely friend, Beth and I went to see the wonderful Billy Bragg at the Ritz in Manchester. Billy was fantastic and inspiring, as always, but I discovered that managing my wobbly legs, in a crowded space, with a walking stick, in the dark is really tricky! Luckily we managed to get a spot right next to the lighting/sound guy box and I was able to prop myself up for at least some of the evening.

I had lots of realisations last night – I love live music and was previously a frequent gig goer, but I have been doing a lot less of it recently. I much prefer to be in the standing area, as the atmosphere is better, but I can no longer tolerate standing up for so long. By the end of the evening I had shooting pains in my legs, hips and lower back. I found myself wishing for the last song to come and was upset with myself for feeling that …usually I don’t want the evening to end.

Beth was dealing with her own challenges (fibromyalgia) so between us we felt ancient!

Other minor problems I encountered were other people tripping over my walking stick (one person literally kicked it away, almost causing me to fall) and the Ritz being an old building, so the toilets were down some rickety stairs – not good when your legs aren’t doing as they’re told! At one point, I went to the bar then realised I wouldn’t be able to carry two drinks and use my stick to get back to Beth. Thankfully she had realised this too and had followed me to the bar. Thanks Beth xx

The journey home was also challenging – going from the heat indoors to the cold outdoors compounded my pain and the bumpy bus ride didn’t help either!

I sound like such a whinger, don’t I?! Hopefully normal service will be resumed soon.

Today I hurt all over and I feel exhausted. I could have been going for a walk in Macclesfield Forest with Niamh, Sophie and my favourite dog, Odin, but I’m just not up to it.

I hate that this disease is robbing me of life’s simple pleasures – going to gigs, buying a round, going for a walk. I hate having to think about what I’m doing on one day as it can impact on what I’m able to do the next (starting the day with a spoon deficit isn’t good!). I don’t feel ready or willing to succumb to this way of life.

Anyway, I’m going to have a hot Epsom salts bath, then spend the day on the sofa, watching TV and cuddling with my cats …hopefully tomorrow will be a better day.

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! 💃🏼🕺🏻

32 To flu jab or not to flu jab?

This is a question many of us with autoimmune conditions ask ourselves every winter.

I am a believer in vaccination and for several years always had the flu jab. My thinking was that flu is something I’d very much like to avoid and the vaccine provides a good chance of being protected against it. My job involves going into schools (germ factories) and mixing with many different adults and children and I figured taking precautions to avoid flu was a good idea. In addition, I am aware that if everyone who CAN have the vaccine does so, this helps to protect others who can’t have it.

Then I began to have a reaction to the vaccine, which became worse each year … a kind of mini-flu! Two years ago I had the vaccine, the mini-flu then an MS relapse. I can’t say that the vaccine triggered the relapse but that is how it seemed to me. Many MSers describe a similar experience. Doctors tell us it’s a coincidence and there is no link, however the truth is that no one really knows the root cause of MS and everything that can trigger a relapse.

After that I took the view that as my immune system tends to act in unpredictable and unusual ways, it was probably a good idea not to provoke it. Last year I didn’t have the flu jab.

This year I am having a lot more contact with doctors and they keep nudging me towards the jab! Following a long conversation with a GP last week, I agreed to give it one more try.

So, on Monday I braved the needle and went for the jab. This time I’ve had no mini flu at all, just slight tenderness at the injection site and a bit of sickness the next day. Hopefully that’s it!

Keep your fingers crossed for me that there isn’t a relapse on its way and let’s hope, for all our sakes, that the flu vaccine is for the right strain of flu this winter and we are all spared 🤞🏻🤞🏻🤞🏻

31 Manchester Half Marathon 2018

Yesterday was an amazing day! We had an early start in order to get over to Trafford Park in time for a quick visit to the portaloos, an even quicker warm up and the start of the 2018 Manchester Half Marathon. It started drizzling just as we got out of the car and didn’t let up until we were back home several hours later!

The wet weather didn’t seem to dampen the spirits of the runners, spectators or organisers and the whole event was really well organised and very enjoyable (from a spectators point of view anyway!).

Nick is a seasoned runner and registered for the event a while ago, meaning he was in starting group B. The others were all in the final group, group G.

With 1400 people running, it took 30 minutes for them all to set off from the start line. I can’t fault the organisers and everything went like clockwork.

With my fellow supporters (Sophie, Ian and Odin), we managed to find a spot at the 5K point and waited with excitement for our team to appear. First past was Nick, who was so fast that none of us managed to catch a photo of him! After a bit of a wait, Connor appeared, looking happy and energetic …

Somehow we missed Gleaves in all the crowds but spotted Niamh and Heather running well together. They were so excited to have seen us cheering them on that they hugged, which made us smile!

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(Click link for video)

At this point we decided to head for the finish line, grab a spot and wait. By this time it was raining heavily and the only way we could see the road was to stand in a puddle! We were about 100 metres before the finish line, so spent the next hour cheering various runners through their last painful steps. I can’t tell you how much I admire each and every one of the people taking part today. Just getting round those 13.1 miles in the cold wet conditions is an amazing achievement. There was a great atmosphere amongst the spectators and lots of support for all the runners.

We all became super excited when Nick suddenly appeared, still looking fresh and running well. After a bit of a wait, Connor appeared and managed to find a surge of energy as we cheered him on to the finish line.

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(Click link for video)

Next through was Gleaves …we were so relieved, having not seen him at all since the start. He managed a smile and a wave and ran for the line.

We then waited anxiously for Niamh and Heather. We knew this was a huge challenge for them both …Niamh running with a hip injury and Heather having only started training a month before. We were overjoyed when we finally spotted them. Both were struggling but looked determined as they ran that final 100 metres and crossed the line hand in hand. Nick, Connor and Gleaves had joined us by this time, so we gave the girls a big cheer then whizzed round to the meeting area to find them.

A couple of Niamh’s friends, Lois and Jess, managed to get a spot on the other side of the road a little nearer the finish line so Niamh and Heather got double cheers for the last bit of their run.

After some emotional reunions and tales of pain, tears and amazing support from each other and from fellow runners, we headed home for hot baths and pizza!

What a fantastic day! Connor, Niamh, Heather, Nick and Gleaves …you were amazing. I couldn’t be more proud and pleased and so touched by your effort.

Everyone is struggling a bit today with sore legs and low energy, but I hope the fantastic five are also feeling very proud of themselves …they really should be.

Some numbers …

Nick – 1 hour 37 minutes (he was aiming for under 1 hour 40]

Connor – 1 hour 44 minutes (he was aiming for under 2 hours)

Gleaves – 2 hours 18 minutes

Niamh and Heather – 2 hours 21 minutes (they were aiming for under 2 hours 30) Continue reading 31 Manchester Half Marathon 2018

30 MS Fatigue

I have been thinking about writing a post about MS Fatigue for quite a while now, but have been holding back as it’s so hard to describe and explain and I don’t want to come across as being negative.

I work really hard on maintaining a positive attitude, as I really do think it’s the best way to cope with chronic illness and life’s challenges in general. That’s not to say I am happy and jolly all the time – I have my dark days and nights as much as anyone else, but I do make a conscious effort to stay positive as much as I can.

Fatigue is one of the most common MS symptoms and one of the hardest to deal with, because of the impact it has on everyday life, the fact that it is invisible to others and that it’s impossible to measure. Fatigue is the most common reason for MSers to stop working or to reduce their working hours.

The exact cause of MS Fatigue is not fully understood, in fact there is so much about this disease that remains a mystery. “Primary fatigue” is fatigue caused by the condition itself: the MS Society describes it like this …

“MRI scans of people who have fatigue show that they use larger areas of the brain to carry out activities than people without fatigue. Perhaps the brain is finding new routes for messages when the usual nerve paths have been affected. Finding new routes might mean it takes more energy to carry out an action, and this might cause fatigue.”

MS Society – Fatigue

“Secondary fatigue” is accumulated fatigue caused by the difficulties of living with the disease and its symptoms. Everyday activity requires a lot of concentration so as not to fall or bump into things or knock things over – I certainly notice that I have to work harder at this the more tired I am feeling.

The MS Trust has excellent information on fatigue here …

MS Trust -Fatigue

Spoon Theory

Spoon theory was devised from a metaphor Lupus sufferer, Christine Miserandino used to explain her daily struggle with fatigue and varying energy levels. She used spoons to represent the energy and effort needed to complete every day activities, explaining that healthy people will have unlimited spoons most of the time, whilst those with chronic fatigue have only 12, which they must use with care. If you use too many spoons on one thing, you will not have enough spoons left for others.

Christine’s idea has resonated with many suffering from long term illness where fatigue is common. Her account of how she first used the idea of limited spoons to explain how her illness affected her can be found here …

But You Don’t Look Sick

This is well worth a read …I remember reading this several years ago and it helped me to understand what a friend with Fibromyalgia was dealing with.

Like many with MS, I often have to cancel plans , despite desperately wanting to continue, because I don’t have the energy (or spoons) or because I am worried I won’t have energy left for something else that I must do.

I am a sociable person, but socialising uses up spoons and I always have to make sure I have enough spoons to work and look after myself.

I often have a nap after work as I have reached the point where I literally cannot do anything else …I am all out of spoons!

I have been referred to a Fatigue Management Group at my local hospital, where I will apparently learn how to manage my fatigue (or conserve spoons).

Well, after writing this extra long post and using up several spoons, I’m off for a lie down! 😴

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We are now on Twitter …Another MS Warrior

and Instagram …@anothermswarrior

29 Two days to go

It’s the Manchester Half Marathon on Sunday, training runs are finished and nerves are setting in for a few.

If you’d like to sponsor our amazing athletes, please click here … GoFundMe

We are now on Twitter …Another MS Warrior

and Instagram …@anothermswarrior

🏃🏻‍♂️🏃🏼‍♀️🏃🏻‍♂️🏃🏼‍♀️🏃🏻‍♂️

28 Final training run

With just 4 days to go until Manchester Half Marathon, some of the team are out for their final training run this evening. We have a couple of experienced runners but also a couple of complete novices – they have all worked so hard to get themselves ready for Sunday. Thank you so much you fabulous five!

Unfortunately Niamh has managed to sustain a hip injury and on medical advice, has decided to rest this evening, in the hope that she will be “race fit” by Sunday. She seems pretty determined and with the power of Ibuprofen and Tiger Balm, I just know she’ll do it!

If you’d like to sponsor the runners, you can do so by donating to them in person or through our GoFundMe page (linked below). Please mention them in your comment.

Go Team Warrior 💪🏻

Manchester Half Marathon

GoFundMe

27 One week to go!

It’s just one week until my fab running team take part in the Manchester Half Marathon. For most of them, it will be the first event of this kind they have taken part in and some only made the decision to enter a month ago!
They have all been training hard, out running in all weathers, healing blisters and pushing themselves to go further.

If you would like to support their efforts and encourage them on the day, you can sponsor them by making a donation to this page (please mention them in your comment) or directly to any of the team.

Connor, Niamh, Heather, Nick and Gleaves …thank you for all your hard work and sacrifice …I am so grateful for your efforts.

If anyone would like to join me in cheering them on at the finish line, give me a shout.

Go Team Warrior!

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26 The long road to HSCT

As you all know, I am determined to get HSCT for my Multiple Sclerosis. There is a lot going on in the background to try to get to that point, so I thought I’d update you on where I am up to …

My first choice would be to have treatment in the UK on the NHS, but it’s a huge challenge to even be considered for treatment here. I have started by writing to my neurologist to see whether he would be willing to refer me to the Haematology department and Manchester Royal Infirmary as a I know that a handful of MS patients have already been treated there.

I haven’t had a reply from him, but I have had notification that my November appointment has been rearranged and a double appointment allocated. It’s really difficult to know what to make of this – perhaps he is considering referring me and needs a double appointment to discuss it all? Or perhaps he is worried that I am considering going abroad and has arranged a double appointment to try to talk me out of it??!

Even if this referral was successful, the next stage is for a panel at the MRI to consider my case. The criteria for treatment are shrouded in secrecy, so I have no idea if I have any chance at all!

If this route doesn’t get me there, my next option is to try to get referred to the London panel. To do this, I would need to convince my GP to refer me to a London neurologist for a second opinion on my MS.

From the beginning I have been told that my MS has “unusual presentation”, so I would try to be referred to a neurologist I am aware of, who has a particular interest in patients with unusual presentation …he also has an interest in HSCT.

Both of these routes have a very small chance of success in terms of me accessing treatment. UK neurologists are on the whole, not particularly supportive of HSCT at the moment. I really think this will change in the future but we haven’t got there yet.

Which then brings me to the other option …clinics abroad. There are a number of countries where HSCT is available at high cost and in some cases, only for residents of that particular country. There are also several unscrupulous facilities offering “stem cell therapy” which does not include all the stages of HSCT, so is therefore ineffective.

There are two clinics recommended by UK support groups – one in Mexico and one in Russia. I have spent a lot of time researching the treatment at both, talking to previous patients and having discussions with my family and have come to the conclusion that the clinic in Russia is right for me.

If you haven’t done the research I have, it perhaps sounds a little crazy to be planning to go to Russia for such life changing treatment …but it really isn’t! They have many years of experience of treating MS patients, a high success rate and an excellent safety record.

For a while I planned to exhaust all UK options before starting plans for going abroad, but each option presents a long journey and I’m worried about deteriorating while I wait for all these processes to run their course.

So, here I am pursuing both options at the same time.

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25 The drugs don’t work

Well it’s been a tough week here in Warrior Towers, mainly because Rebif and I just don’t get along at all!

I have been injecting 3 times per week, following advice about keeping hydrated and experimenting with timing, but rather than the severity of the side effects easing up, they have actually got worse. By last Friday morning I was throwing up and by Monday was overwhelmed with continuous nausea, fatigue and headache and was unable to work. I was barely sleeping and was also peeing blood! (Apologies to squeamish readers!)

By Tuesday evening, when my next injection was due, I decided not to carry on. My MS Nurse isn’t pleased but understood when I explained how I was struggling to function. She tells me such reactions are unusual, however, fellow patients tell a different story. There are some patients who sail through, with few or no side effects and feel great on Rebif. But there are quite a few just like me, who are unable to tolerate it at all.

Further research has revealed a known link between Rebif and UTI (Urinary Tract Infection) with higher incidence in females and those in the 45 to 60 age bracket. I now seem to be more knowledgeable than the nurse!

I was never planning to take Rebif as a long term measure but was hoping that it might hold off another relapse until I can access HSCT. When I saw my neurologist in June, he predicted I would have another relapse “soon”, so I’m keen to do all I can to avoid this.

Five days after my last injection I’m now feeling much better. My sleep has improved and today was the first morning in a while that I haven’t felt sick on waking. The antibiotics are kicking in and I’m feeling a little less foggy headed!

So now I’m left with a difficult decision – do I wait a bit then try again, do I try another drug or do I just do my best to look after myself in the hope that I won’t relapse before I have HSCT?

If you have any thoughts on this, let me know in the comments below 👇🏻

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