update – Another MS Warrior

133 A few updates

Work

With the start of the new term, I have been back at work this week. Thankfully, my employer continues to advise that all those who can work at home, should do so. As a person with chronic illness and disability, there are advantages to working from home – mainly that I can get up, log on and just get on with it, rather than negotiate the challenges of rushing about to get ready, sorting out a packed lunch and driving to the office. In the past, I would often arrive at work feeling exhausted from the efforts to get there. I don’t miss the parking issues, queues for the lift, long walk to the kitchen or having to go up or down a floor to visit the ladies. Now I’m starting my working day feeling fresh and ready to go and I haven’t used any unnecessary spoons just to get to that point.

You can read more about Spoon Theory here … The Spoon Theory written by Christine Miserandino

My cats have loved having me at home over the last few months and one in particular loves his morning snuggle on my knee each day. He’s not at all happy that some mornings I’m now sitting at my desk and my knee is no longer available …

Of course there are down sides to working from home and I miss the contact with colleagues and face to face kitchen chats to quickly agree actions or find out information (all so much more formal and convoluted by email).

I have no idea what the new version of normal will be in the future, but I hope there will be continued opportunities to work from home, at least for part of the time. I really feel this would help me to stay in work for longer – better for me and better for society. I know that many disabled people around the world are feeling this too.

House move

Over the last couple of months, I have come to the conclusion that now is the time for me to move to a home without stairs. Thankfully, I haven’t had any further falls, but I’ve had lots of wobbles and near misses. I’m anxious about the stairs every time I use them or cross the landing to go to the bathroom from my bedroom. I love my little house and garden and I love the community I live in, but it’s not right to continue living like this for a longer period of time.

I have considered the option of having a stair lift fitted, but that wouldn’t take away my daily fear of falling from the top. I also have a cellar here, which is another challenge, as for some reason no one thought to install a handrail. The loft is also difficult to access and I don’t like having to ask for help whenever I want anything to go up or down. In addition, this house is well over 100 years old and so needs continual maintenance and is expensive to heat.

So, I am now in the process of getting my house ready to sell. I’ve only been here for 3 years, and there was a lot of interest at the time of buying it. The housing market in this area seems buoyant, at least at the moment, so I feel this is the right time to go. I have a plan coming together on where I’m moving to, but will keep that under wraps for now.

HSCT

HSCT has started again in Mexico and I’m already aware of a couple of Brits who have made that journey and are now recovering at home. The clinic in Russia is admitting patients again but I think visa issues have held up any Brits trying to get there. Hopefully this will be resolved soon.

I understand that some patients have started HSCT at the London hospitals, but no one is being treated in Sheffield just yet.

I have an MRI scan in Sheffield on Thursday. Professor Sharrack plans to compare this to the scan I had last July and if he can see new disease activity, he may still consider me for HSCT, which would be amazing. I have very mixed feelings about this. I started a new DMT (disease modifying therapy) a few months ago, which is hoped will reduce disease activity so it would be great if things are calming down. I have a feeling the scan will show a little activity, but not enough to meet Professor Sharrack’s criteria!

I used to find the MRI machine terrifying – feeling trapped, unable to move, cut off from the world and with all manner of super loud clunking and grinding noises going on, but I’m obviously becoming desensitised now, as I haven’t started worrying about it (yet)!

Tecfidera (DMT)

I am pleased to report that the initial flushing, rashes and itching triggered by Tecfidera have mostly stopped now. I still have the odd day when this happens, but it’s much milder. I haven’t yet spotted a link that would explain why it sometimes happens, but more often doesn’t. I have a blood test at the end of September to check liver and kidney function and once that’s cleared, there’s just possible hair loss to worry about!

Many thanks to family and friends for your continued support with all these ups and downs ?

129 What’s happening with my MS?

Hello dear readers, I’m sorry for neglecting you of late. Today is my 66th day in lockdown and as everything is on hold, there really isn’t much to report!

I’ve had lots of messages and questions from family and friends about how my MS is affecting me at the moment and my plans for treatment, so I thought I’d write a bit of an update.

Over the last few weeks, I have had telephone appointments with my GP, an occupational therapist, a physiotherapist, my neurologist in Salford and with the neurology team in Sheffield. My long awaited appointment with the MS Nurse has been delayed as she has been redeployed due to the pandemic.

The situation with Professor Sharrack in Sheffield is that he believe that I have Secondary Progressive MS with superimposed relapses. This would exclude me from their criteria for HSCT treatment there. They would like me to have a further MRI scan, which they will compare with the previous one, before making a final decision. At the moment, the hospital is not carrying out routine scans, so this is likely to be on hold for several weeks/months/who knows?!

My own neurologist is very concerned about the length of time I have been without treatment and would like me to try another DMT (Disease Modifying Therapy). He understands why I am pursuing HSCT but feels that it won’t be safe to travel for treatment for quite some time (a year or more was mentioned) and would like me to be protected from further relapses during this time. So I have agreed to try Tecfidera. This is taken in tablet form and reduces both the frequency and severity of relapses. My neurologist thinks I am having lots of mini relapses, so hopefully this drug will reduce them.

You can read more about Tecfidera here … MS Trust – Tecfidera

Regular blood tests are required when taking Tecfidera, including an initial test to check liver and kidney function, full blood count and diabetes status. So, last week I went to Salford Royal Hospital for the test. It was a very strange experience, having not left my local area for weeks and only occasionally driving around the block.

The hospital was eerily quiet and no one seemed to be wearing a mask, except me! I was asked some COVID questions and had my temperature taken on arrival (by a man not wearing a mask) and several vials of blood were quickly taken (by a nurse who was wearing a mask).

I have also been prescribed a drug that may help with my debilitating fatigue and brain fog and started it this week. It takes a few weeks to begin to take effect, so fingers crossed it works for me ??The drug is called Amantadine and is an antiviral which has been found to help 1 or 2 people in 5 with MS fatigue, although the mechanism for this is not known. It is sometimes used to treat people with Parkinson’s Disease as well.

you can read more about Amantadine here … MS Trust – Amantadine

I am still off work and my GP would like me to stay off until both new drugs have had a chance to kick in. I have very mixed views on this … some days I feel that I could manage work (at home of course) and on other days it feels like an impossibility. Being at home has given me lots of time to think and come to the realisation that I need to make some changes in the long term (whether I eventually have HSCT or not) …I have no idea yet, what those changes might be.

I have been continuing on my daily walk most days and some days this has been quite a struggle, as my left leg tends to drag and can often feel like a heavy, dead weight by the time I’ve walked a few hundred yards. A couple of weeks ago, I developed a severe muscular pain in the right side of my lower back. I spoke to my Occupational Therapist about this and after much discussion, she worked out what was causing this problem. Most of the time, I wear flat ankle boots when out and about, as I find these comfortable and benefit from the ankle support, especially on my left foot. When the warmer weather arrived, I started wearing flat lace up pumps and was aware that my left foot was dragging and would sometimes catch on the ground. The OT worked out that I was leaning slightly to the right in order to accommodate my dropping left foot and that this was the source of my back pain … how amazing is she?! So I have now been provided with a device to help lift my left foot, which should reduce tripping risk and take the pressure off my back.

It’s ugly and a little uncomfortable, but I’m going to persevere with it. If it keeps me mobile, who knows, I may grow to love it!

A combination of Tiger Balm, hot water bottle and gentle movement has healed my back pain, so I’m back on my feet again.

I hope you are all staying as safe and well as you possibly can ?

109 A quick update

This is just a quick post to touch base and to update you on a couple of things.

I was going to write a post entitled “A day in the life of an MSer” but as I started writing it, I began to realise it was too bloomin miserable for public consumption!

I’ve had a difficult couple of weeks, overwhelmed with MS symptoms and generally feeling rubbish. I didn’t manage to go to work at all last week but I’m hoping to get back to it on Monday. I think I’ll delay my “day in the life” post until I’m feeling more positive!

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I don’t live in the same place that I grew up and I have friends and family all over the place. I keep in touch with many by email, whatsapp, Facebook, Messenger etc and really love to hear from people. Over the last few weeks, I’ve had lots of lovely messages from friends and family, many of which I haven’t managed reply to. I’m sorry for being so rubbish at this. I really do appreciate hearing from you, I’m not ignoring you, I haven’t forgotten you …I’m just struggling to deal with everything at the moment.

Something else I’m in danger of falling behind on is this blog, so this post is an attempt to address that.

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In amongst the stressful last few weeks, I received some really good news …a letter from Professor Sharrack at Sheffield Hallamshire Hospital. I have an appointment with him in February and he is hoping to bring this forward. He has also asked me to bring a copy of my previous MRI scans (on a CD) so that he compare it with the scan I had in June. It’s hard to say whether this is a hopeful step or not (I’m trying not to get my hopes up), but at least I’ll have a final answer on HSCT in the UK a little sooner previously thought.

In the meantime, we are still fundraising and aiming for my date in Russia in March. Our fundraising total now lies at …

It would be amazing to get to £20K before Christmas ????

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We are asking people to think about the Christmas cards they send and consider whether there is a different way to approach this …

Are you about to hurry out to buy Christmas cards that will eventually end up in the bin? Why not help us instead…

This year, instead of buying Christmas cards or receiving a Secret Santa present, please consider donating the money you would usually spend to our fundraiser?

Not only would this help us to get a little bit closer to our target, but it would also help to save our planet and hopefully relieve some Christmas stress!

It is estimated that around 900 million Christmas cards are sent each year in the UK. When you factor in postage costs, that’s a lot of money on something that will be forgotten about in just a few weeks time. Why not send an e-card, text, WhatsApp or Facebook message to wish your loved ones a happy Christmas …real life hugs and good wishes are even better! ❤️

Thank you so much for anything you are able to donate. Please share this idea with your family and friends and anyone you know who would like to find a way to help others at Christmas time ??❤️

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Our next fundraising event is the Vintage Village Merry Little Christmas Fair on Sunday 8th December from 10am till 4pm. Thank you for all your kind donations of items to sell ?

Please come along and join us if you can …I’ve heard there will be mulled wine! ?

GoFundMe

70 How to fall safely

Obviously the best bet is not to fall at all, but sometimes it just happens! I experience a lot of near falls, stumbles, trips and bumping into things and sometimes end up with a few bruises.

I take a few precautions to keep as safe as I can – using my stick, holding on to furniture, linking arms with whoever I’m walking with and staying focussed on what my feet are doing (even when I can’t really feel them!). Despite this, I have still managed a few spectacular falls.

Recently I’ve been reading advice in “How to fall safely”. The general advice is …

Protect your head and face
Bend your arms and legs and try to “stay loose”
Try to land on a fleshy part of the body (rather than on bones or joints)
Roll with the momentum of the fall

I think I may have to practice, as most of my falls involve landing on my knees and hands …and really hurt ☹️

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I have just added the following to the “Where to begin” page. I’m aware that I have quite a few new readers so thought it was appropriate to update it …

31st January 2019

Its’s been almost 6 months since I wrote this first post. A lot has changed since then , so I though I’d add an update to explain …

Since August, my MS has continued to progress with no major relapses. I now use a walking stick daily and have been issued with a Blue Badge and work place parking permit. I have also reduced my hours at work in order to cope with my ever increasing fatigue.

My neurologist has left the country! He has returned to his home country of Malta and I have been allocated a new one. He has offered me Copaxone but I have declined.

I have decided that I want to go for the most effective treatment for MS currently available …HSCT (Haematopoietic Stem Cell Transplant). Unfortunately this isn’t widely available in the UK and I don’t quite meet the very tight criteria for treatment on the NHS. This could possibly change in the next few years but I don’t think I can wait that long.

After much research and discussion with my family, I have decided to go abroad for treatment. I am booked to go to a clinic in Moscow on 23rd April. The clinic is experienced in treating MS patients and has an excellent record in terms of successful outcomes and patient safety.

The cost of the treatment, flights and visas is around £40K. We are working hard to raise the funds and will borrow if we have to so that I can make that date in April.

There are lots of posts in this blog which explain this in more detail, so feel free to browse and search.

Thanks again for reading

GoFundMe

35 Fundraising news

Well, a couple of days ago, this happened …

100 donations in one month!! Thank you so much each and every one of you xxx

The sponsorship money from the Manchester Half Marathon is still coming in so I don’t have a total for that just yet.

Connor, Alex and Gleaves have been out training on their mountain bikes today.

Having said that she’d never run again, Niamh, along with Callum, Jess and Jake, has signed up for the Wilmslow Festive 10K run on 25th November. She is still resting up to allow her hip injury to heal, then all 4 will be training in earnest!

We also have some other fundraisers coming together …

My Prosecco loving friend, Julie, is giving up booze for a whole month!

My niece Fiona has signed up for a 10K and my sister Glenda, for a sponsored Nordic walk event.

My sister in law, Gill is hosting a coffee morning next weekend, including yummy cakes (she is an excellent baker) and a raffle.

I’d like to hold some sort of cake related event too …I seem to have so many cake making friends! Maybe some sort of Bake Off or something along those lines? Or a good old fashioned cake sale? Or something Christmas related? If anyone has any ideas, please give me a shout.

We are still working on a possible sky dive and a long haired person is considering a drastic hair cut, in exchange for donations …watch this space for more information on that soon!

We are planning an evening event to take place in January. We have a fabulous venue and plans coming together for music, food, drink, a raffle and a silent auction.

So, this is my next request for help …

Do you have anything you could donate as a raffle prize or silent auction item?
Do you own a business and would be able to donate services, a beauty treatment, a meal or anything else we could raffle or auction?
Do you have any contacts at venues who could donate event tickets?
Do you have a connection to anyone famous who could donate items?
Do you have connections with anyone who could help with any of the above?

If you can help with any of the above, or you have any other ideas for fundraising, please give one of us a shout.