April is always an exciting month for us here at MS-UK as we mark MS Awareness Week, and 2018 is no different!
This year we are celebrating our newest national service, MS-UK Counselling. We launched the pilot of this service in October 2017 and since then have delivered over 150 telephone counselling sessions to people with a diagnosis of multiple sclerosis. But we want to help even more people!
At MS-UK, we believe that it’s good to talk. However, we know that there can still be a stigma around accessing counselling, and we want to break down these barriers so people diagnosed with multiple sclerosis can get the support they need.
So, this MS Awareness Week I ask you to help us spread the message that it’s good to talk! Throughout the week of 23 – 27 April we will be posting on Facebook and Twitter all about MS-UK Counselling, and it would be great if you could help us spread the word by retweeting or sharing our posts. Thank you!
Keep an eye on our blog for updates as we near the big week...
We just wanted to let you know about this important source of information that our MS-UK Helpline team regularly uses to support the multiple sclerosis (MS) community.
The Disability Rights Handbook is a guide to benefits and services for anyone with a disability, their families, carers and advisers. It contains a wealth of information relating to the benefits system, as well as social care services and help for carers. This guide will be relevant to many people living with MS.
Clients who use the MS-UK Helpline have let us know how valuable the information provided by our advisors is and, since a lot of that information can be found in the Disability Rights Handbook, we wanted to share it with you. If you would like to buy your own copy, you can do so on the Disability Rights UK website store.
We wanted to let you know this was available to pre-order as last year’s handbook sold out in quite quickly!
As always, though, our MS advisors are available to listen to you, talk things through with you and keep giving you as much helpful information and support as possible.
With most of the country feeling the big freeze, here’s our top tips for travelling safe and keeping warm…
Find out more about our services to support people affected by multiple sclerosis (MS) on our website.
In her latest guest blog, Joanne discusses preparing for her son’s start at nursery and coping with a multiple sclerosis (MS) flare…
Little man has another development milestone coming up, going to nursery.
It doesn’t seems two minutes ago, he was putting his head up, sitting, then eating real food, walking then speaking.
Little man is only going to nursery for a couple of days but it’s a big step for him, an even bigger one for me.
He was going to start this month but due to illness (me mainly, we had bugs which take twice as long for me for them to shuffle off and also I’ve had a flare up, hence little writing, sorry). I wasn’t in the right place to start. It’s about little man settling in, but also as a new routine for him, l have to be ready too.
To prepare, we’ve been reading books about starting nursery (I’d recommend Spot and Pirate Pete). I’ve also been potty training (not a necessity).
I put a post on social media to see what may be useful. Everyone’s suggestions were helpful, recommending:
I saw a quote from Rosalind Dorlen, which said ‘handling chronic illness is about learning to live in balance’.
I remind myself of this. I thought I’d do lots before this milestone. The toughest part is beating yourself up about expectations. Learning to live in balance. Good days, you act like super woman, and on bad days, you feel like a rubbish mummy for not having any energy to do anything and switching CBeebies on again (a god send!)
Frustration kicks in. My flare up has caused me to fall a few times, my mobility rubbish, writing poor, fighting fatigue and generally feeling like what’s in the potty! As a mummy, I still have the same challenges but as a mummy with MS it is harder. Putting my needs ahead of little man’s and Daddy isn’t easy but a necessity. Getting the right support from family, friends, support groups and social media contacts all help. But I find it hard to ask or accept help. I know I need to do better!
I’m hoping nursery will be the right development milestone for little man, and also for me. Or at least my muse for writing.
I’d love to hear how you tackle development milestones (no chronic illness required).
Yesterday evening, BBC One’s The One Show aired the story of one MSers decision to end his life at Dignitas in Switzerland.
Colin Campbell, 57, from Scotland was diagnosed with primary progressive multiple sclerosis (PPMS) in 1995. In the knowledge that his MS would get progressively worse he had decided that “another winter would be unbearable”. He had chosen 15 June as the day he was going to die. He didn’t want to be alive and more disabled than he is now. His story even made it onto a local Scottish news channel. Little did he know that just half a mile down the road from where he was living a stranger was watching - another MSer Rhona Tynan. She had watched his story and decided that she “couldn’t let this man go ahead and do this without trying”, so she phoned up the TV station and got in touch with Colin. She asked him to come and see her and how she was coping.
“I just wanted to see if I could help him see if things could be better,” she said.
Colin did go and see Rhona and they formed an unexpected friendship. After spending two “enjoyable” days together and after discussing things with her Colin decided to cancel his 15 June appointment in Switzerland. Seven months later, Colin discussed how meeting Rhona had changed his life. He said: “My flat had become a prison. I couldn’t get out, there were two flights of stairs. You lose the will to live.
“No one had explained to me what options there were,” he explained. “If Rhona hadn’t have contacted me that would have been it for me on the 15 June. It would have been all over,” he added.
Rhona said: “It became very clear to me that Colin didn’t have the correct support for quality of life.” “I know a scooter gave me quality of life because it allowed me to get out and about. Colin didn’t have one and he didn’t know how to go about getting one.” So they decided to have a day out together trying out and testing some scooters. But getting a scooter was just the beginning. He also found out that he was entitled to a ground floor accommodation and 24-hour assisted living. Inspired by her relationship with Colin, Rhona has now set up a networking group for other people who have found themselves in a similar situation. Rhona has also recently been to Mexico for stem cell treatment and is seeing positive results. She talks about her improvements on the show and has most recently managed to walk 50 steps while holding her husband’s hand, something she wasn’t able to do before the treatment. If you missed the show, which aired at 7pm on 14 Feb 2018, and would like to watch the full interview visit the BBC iPlayer and scroll through to 32:40 minutes. If you would like to read more about assisted dying, subscribe to New Pathways magazine issue 107 and read a great piece written by Journalist and progressive MSer Ian Cook, as he discusses your right to die. New Pathways is a magazine for people living with MS. The much loved title has been running for 25 years and is a great source of information and support for many MSers. To subscribe click here, or call 01206 226500.
Whether you are thinking of jetting off to the sunshine for a luxury getaway, a cruise or a UK staycation, you can raise funds for MS-UK with every booking you make.
We have teamed up with Give as you Live to bring some great travels offers to you and when booking you'll know you will be raising free donations to help our ongoing work supporting all those affected by multiple sclerosis (MS).
Just visit our Give as you Live page, register and book online through travel companies including Expedia, Thomas Cook, Booking.com, Hotels.com and many more and know that you have raised funds for us at no cost to you.
Thank you and have a great holiday!
In February 2018, there will be a 2 day Switch2Move workshop in London. Open to any Movement Practitioner and Care facilitator, such as gym teachers, dancers, art-therapists, managers in Healthcare, etc. this workshop will offer tools and guidance to encourage novice learners to discover new realms through creative movement. The workshop will be led by Andrew Greenwood, who cofounded the organisation Dance for Health and created education programs specialised for people with conditions such as multiple sclerosis and Parkinson’s.
There will be a free open demo class on the Sunday morning and Andrew would love if any people with multiple sclerosis or other mobility challenges could attend!
If you'd like to take part in this you need to arrive by 10am, and wear comfortable clothes and shoes. This open demo class is free of charge, and you can take someone along with you. It will last up to an hour and half, which includes some time for feedback. Andrew's main aim is to communicate to wider society and especially to the medical world that dance can be a source of health and wellbeing. You can find out more on the Switch2Move website now.
In her latest guest blog Chloe gives us an insight into her first year of Tysabri treatment…
I can’t believe it’s been a year since I embarked on my new multiple sclerosis (MS) treatment, Tysabri.
What I started in trepidation has now become my lifeline. It has really transformed my life…but let’s start from the beginning.
As treatments go, it’s pretty non-invasive. I remember the first time well…I was nervous. I used to have a fear of having cannulas put in (after an unpleasant experience when I was younger) so to have one every month was nerve-racking. I sat down in the high backed treatment room chair, my heart fluttering. Heather, my MS nurse, had just started at the MS unit herself, so we were embarking on this journey together.
So after basic observations (temperature, blood pressure) were taken it was time for the cannula. And what a fuss I had made! I had built it up into something awful in my head, but it was absolutely fine. It was no more painful than having a blood test, and I’ve had plenty of those in the past! What a relief it was though.
Once the cannula was in, I was rigged up to my first infusion and we were away. I couldn’t feel anything going in, there was certainly no stinging or irritation, so all I had to do was sit back and relax. Heather joked that it was ‘enforced rest’ for me because, what with the children, it’s very rare that I get an hour in the day to just sit back and read a book.
The infusion took roughly an hour, and then I had to sit and wait for another hour to make sure I didn’t have any ill effects. There were no side-effects for me at all. If anything I felt quite buzzed up! It was probably from the relief!
The whole appointment took 2 hours, and then I was sent on my merry way.
The ‘buzzed up’ feeling lasted a day or two afterwards. I felt stronger and more energetic.
13 infusions down, and a whole year later and I feel like I can reflect now on any positive effect Tysabri has had.
Firstly, I haven’t had a relapse since I have started. I normally have at least one relapse a year, so already that is a very good sign and shows that something positive is going on. I don’t get the ‘buzzed up’ feeling after treatment any more (if anything I come out feeling tired), but every month is the same non-painful and simple procedure.
I can honestly say that I can do more now than before. Tysabri isn’t meant to get rid of day-to-day symptoms such as fatigue, but what it has done has pushed me into a good state of remission. My symptoms are manageable, and being able to do more exercise, I feel healthier. At the end of each month I do find myself flagging a bit, so I look forward to my appointments so I can get ‘topped up’ again.
I am so happy to have found a treatment that finally works for me. I had previously tried Rebif, Copaxone, Avonex, and Tecfidera, but none had helped reduce down my rate of relapses. I was in a bad place with my depression also at a peak, so Tysabri really felt like a light at the end of a tunnel.
But of course, there have to be down sides.
Firstly, Tysabri is only eligible for those who have two or more severe relapses in a year. I was ‘lucky’ in that after two relapses close together I was now eligible to try it, but for years I had just missed out.
Secondly, there’s a risk of developing Progressive multifocal leukoencephalopathy (PML).
Tysabri has its fair share of common side effects (tiredness, headache, muscle pain, to name a few) but a less common and extremely serious side effect can be contracting a brain infection called PML (Progressive multifocal leukoencephalopathy). This can lead to severe disability or even death. A test is done before treatment to see whether you have something called the JC virus. If you are positive, then it increases your chances of contracting PML from 1 in 10,000 to 1 in 1,000.
For the past year, I have been JC negative, so for me the positives outweigh the negative risks. However, would I continue on treatment if I turn out to be JC positive? That’s a really tricky question and one I will have to dwell on if the situation arises. I have met other people on Tysabri who are JC positive, but carry on with treatment anyway, but I’m not sure whether I would feel comfortable taking the extra risk.
That’s a topic for another day though. So far Tysabri has turned out to be a positive experience, and it’s allowed me to take on a new lease of life. I can make plans again without having to worry about cancelling them, I can take the dog for a walk independently and confidently and can play with my children without getting too tired. Long may it continue!
You can follow Chloe’s story at tantrumsandtingles.blogspot.co.uk.
In her latest guest blog Joanne ponders on Christmas, multiple sclerosis (MS) and ‘me time’...
Like many of us, a #christmas #break was on my list but didn’t happen.
For the simple reason, there has been too much going on. The family has been battling bugs (which has made my #MS rubbish), many festivities with late nights, #travelling, #family politics and eating indulgent food. It has all had a toll. All adding up to putting my #writing on the back burner.
Many recent events can be put down to MS. My rubbish #walking (I’ve realised Prosecco doesn’t help, despite it tasting nice), #speech sounds like I’m drunk (I’m not but everyone assumes I’ve had a few!) #spilling drinks (more noticeable at this time of year when transporting from the kitchen to guests) breaking wine glasses which need clearing up (another sign that things aren’t right) and #forgetting important things like turning my Dad’s home upside down as I convinced myself that I’d lost my wedding rings (they were back at home). I’m also contending with lots of pain.
You can say I’m just a clumsy, forgetful cow and despite resting, I’ve probably pushed myself too much, resulting in the MonSter coming out.
Christmas has made me realise how real MS is. OK, so I knew MS was real. There has been lots of tears. Tears because I know this is my reality as I’m so frustrated. Like a well known sports brand “just do it” is what I want to be like, what I was previously to #multiplesclerosis but I can’t “just do it” because of this stupid disease. My body has given up. As that advert says, we are in that Christmas limbo period, when we’re probably having a break before new year. I’m sat in my pjs (it’s 4pm, hopefully no one is coming around), watching Christmas television on catch up and doing very little because I’m exhausted. I’m getting my break now.
So with a #newyear on the horizon, reflection in the air, what do I want differently for #2018:
MS is a daily battle but remember you only have one shot at being you. Tears have come and gone. I will have good and bad days but doing the best I can is the only option.
There’s no magic pill to pop for MS (I’ve been told take this or eat that). Nothing cures, it may help, who knows. Fatigue for me, feels like I’m swimming in thick chocolate (there is probably too much of it at this time of year!) Recharging doesn’t cure MS fatigue but helps. I wrote my tips for managing #fatigue as a mummy with MS for the #MSSociety. I said “MS is like having a battery that can’t be fully charged, so know your energy drainers, those things that just zap the life from you”. Christmas is an energy drainer. But I know next Christmas (or any big event) has to be different.
In my past #writing, I’ve talked about this. I feel guilty for having no energy. I will continue to remind myself to cut some slack, especially as next year comes with more of little man’s milestones. I live with MS, that’s pressure enough.
This links with the previous point. This year has been full of acceptance. I’ve had grab rails, a walking stick, Blue Badge and a EDSS scale of 6 ( I had to google too!) All physical reminders that I’m no superwoman (I probably wasn’t before MS although I thought I was!) Life might be tough but accept all help and adjustment. Anything for a better life.
This year, #stleonardsyork have been great giving me more “me time”. I’ve tried #arttherapy, #laughteryoga and various treatments like #reflexogy. With my weekly stint of #pilates, I will plan in more “me time” for next year. Everyone deserves it. This year, I’ve used writing as my therapy. I will continue to. Thank you to everyone who believes in me. All there is to say, is have a fab 2018. Let’s hope it’s full of love, health and happiness. And sod resolutions!
In her latest guest blog Joanne writes about Christmas and multiple sclerosis (MS)...
Sorry it’s taken me so long to write. I’ve been battling bugs and the MonSter has come out with vengeance.
With Christmas only around the corner, I put my best foot forward (left if you’re asking!), grab my stick (I’ve realised it doesn’t work well in winter) put some lippy on and carry on Christmas starts in full swing. I may look like I’m in the Christmas spirit, but on the inside, my MS is bubbling away.
I’m secretly wanting peace and quiet.
I probably sound all bah hum bug as on the one hand, it is the most wonderful time of the year but it also feels like an assault course. Twinkly lights, the smell of evergreen, secret eating of cheap chocolate coins, knowing the big FC is coming soon and everyone running around like headless chickens.
Little man is still too young to fully understand but he does love Christmas like his mummy.
Christmas and MS don’t mix. MS is holding me back. I’ve had to scale back. What am I doing to make Christmas run as smoothly as possible:
Keep calm and carry on
Don’t stress out. With pressure to have this perfect Christmas, whatever perfect is, I try to ease the pressure by focusing on what’s important and remembering I live with MS, that’s pressure enough. Remember it’s only one day. Don’t over commit yourself. Do what’s right for you.
Tiring for all, but exhausting for you. There’s more travelling whether it’s seeing folks or going out and about. Food and drink topped with long days have their toll. Don’t ignore any vegging opportunities but plan rest. Like Christmas presents, MSers need our batteries charged too!
Blooming heck it is cold! It’s snowed recently, dark days and the heating is on full whack, so I’m feeling more tired, the cold is making my MS worse, getting out of a warm shower is my cryptonite and if someone sneezes, I’ll probably get the germs. Many things to contend with, so the girl guide in me is being even more prepared. I’ve bought supplements, wear lots of layers and my wheat toy monkey is on standby for placing on my MS mad hands or warming me up. Plus little man thinks it’s funny seeing him spin round in the microwave.
I can’t write, so no card writing. Annoying but probably a blessing. I try to focus on what’s important, rather than what I can’t do. Charities get my card money instead of the card manufacturers. I insist on hubby having time to help, whether it is present wrapping or shopping. Instead of list writing, I use the internet to save all my gift ideas and finally shop. It also helps with requests for buying for little man.
Christmas is about many things, for me, it’s also about random acts of kindness.
When little man saw the big man, the kind staff made it easier for me. Obviously you’d like it to be magical (and value for money) but I was also thinking about me. Not judging my mobility, was the cherry on the cake.
Recently I emailed ahead to get a table at a local bar. The bar reserved the table, so I could sit and enjoy drinks with ease. My friends have cooked meals and brought as a surprise. Many acts of random kindness. Before I wanted handbags or shoes, now I dream of kindness ( I still have the bag and shoes, although make them lovely flat ones!) So as the saying goes, I hope this isn’t just for Christmas.
So whatever your Christmas brings, let’s hope it’s happy, merry and kind. Remember kindness costs nothing (not like a drone at £500!)
Health and happiness to all.