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"But you don’t look ill"

Posted on: August 27 2020

IMG_0883.JPGAmy Thompson on her diagnosis whilst at university and how writing about her experiences is a form of therapy

My symptoms started off with slight numbness and difficulty walking. The only way to explain this is that I just started to be very conscious of my walking and thinking about almost every step.

I was on my year abroad working in Paris when this all started. It was a Friday and I was going on a weekend away with a friend. The whole break I was complaining of this strange feeling in my legs but just ignored it. The trip was great and we travelled back ready for work on Monday. But, that day I really noticed my walking and my left leg felt heavy. I got to work and thought that if it doesn't get any better I will go to a doctor.

Things continued to get worse. Obviously 90 per cent of the time, you know the Dr Google is not right and that it’s just going to make you think you're dying, when really you have a minor infection or something. But this time was different. Straight away the number one result was multiple sclerosis (MS). The second was a brain tumour. So, I obviously panicked and cried, and panicked and cried some more.

Read the rest of Amy's story in New Pathways magazine, which is free to download.  Download free copy

“I came to realise how strong I am for actually living with my condition”

Posted on: August 20 2020

Beth.jpg

We chat to 35-year-old Beth Graber from Cornwall about how counselling helped improve her mental health

Earlier this year, Beth undertook MS-UK Counselling sessions because she was at a time in her life where she felt she needed extra support and wanted to turn to someone neutral who could help. MS-UK provides a counselling service specifically for people with multiple sclerosis (MS), both over the telephone and via Zoom.

 What were you expecting from counselling?

I was expecting a friendly ear and possibly advice, and maybe just someone to be able to open up to.

The service was fantastic. I found comfort in the familiar voice each week and felt I could open up so much more freely over the phone, without judgement, rather than feeling anxious face-to-face. 

What benefits did you notice?

I understood more about myself, and about self-care and self-love. I realised I was being way too hard on myself. I started to understand more about why I was behaving in certain ways and instead of punishing myself, I began to take more care of myself mentally.

I realised that on the days I couldn’t physically cope, it was OK to rest and I stopped beating myself up for being ‘lazy’ – rest and recuperation are very important. I cannot blame myself for having MS and I came to realise how strong I am for actually living with my condition.

Being able to open up and ask for help from others was a big deal for me and this was made easier by having counselling. 

Did it benefit any of your personal relationships?

I felt I could open up more to friends and family, so this made it easier to communicate. I started to be more honest and not hide things, or how I felt. I was also able to ask for help.  

What would you say to someone with MS who is struggling to cope? 

I would say definitely try counselling. Having someone at the end of the phone to listen and just be there makes you feel so much better. If you are like I was, and keep in how you feel and don’t look after yourself emotionally, you will definitely see the benefits with counselling. It’s very true what people say – it’s good to talk! 

Find out more about MS-UK Counselling

“My daddy gave me a massive hug and told me so many people are proud of me!”

Posted on: August 18 2020

Meet Amber, our six-year-old Fundraiser of the month who’s just climbed SnowdoniaAmber Holmes.jpg

We were sat one day watching the Disney film Abominable where they eventually have to climb Mount Everest. “Can we climb Everest?” I asked my dad. He said, “You need to be a bit older and Daddy needs to be a bit fitter – why don’t we climb Mount Snowdon in Wales as a start?” I said, “This sounds like a great idea, let’s choose a weekend right now!" I knew I had to do some walks around Chelmsford to train and so the week before I walked eight miles in my boots for practice. 

When the weekend came, the weather was perfect! I was very excited and a bit nervous but knew I had to complete the task as so many people were supporting me.

The climb was steeper than we expected but we gritted our teeth and sometimes I had to use my hands to climb as well. It took two hours and 20minutes to get to the top. I was so happy to get there. I took a picture with my MS-UK jersey to show how proud I was.

We ate our lunch and then set off down the hill. On the way down the sheep kept making us laugh as they would stand on the train tracks and not move even when the train came.

Amber Holmes 2.jpgI had two falls on the way down where I cut my hands and knees but I knew I had to carry on. It took an hour and 50 minutes to get down, so in total it was four hours 10 minutes. My daddy gave me a massive hug and told me so many people are proud of me! I got a marshmallow ice cream at the finish.

My grandad had multiple sclerosis (MS) for 22 years and had such courage. Unfortunately, he passed away last October and I miss him a lot. I wanted to do something to make him proud and carry on his memory. I did it for MS-UK as they supported him and my family. They do wonderful things for people with MS. We managed to raise over £3,000 and are very thankful to all the people that cheered us on this very difficult task.

If you would like to take on your own challenge like Amber, and help to raise vital funds for MS-UK, then get in touch with Lucy on lucy@ms-uk.org

To help Amber with her fundraising, click this link https://www.justgiving.com/fundraising/luke-holmes8

 

A charmed life

Posted on: August 17 2020

Niall Presidential Chair website.jpgWhen MS derailed Niall Connell’s beloved career as a vet, he had no idea the new opportunities that lay further along the track

I am a veterinary surgeon. This makes me proud every single day. My family were from Glasgow’s East End and I went to a large comprehensive school in one of the city’s new towns.

Dad was a firefighter who retrained to become a teacher before sadly dying young. I finished my studies at Glasgow vet school just before my 22nd birthday. I was in mixed practice in Fife for 2 years before joining the People's Dispensary for Sick Animals (PDSA) in London. I enjoyed a hectic, rewarding 25 years with PDSA, becoming senior veterinary surgeon at East Glasgow PetAid Hospital. I am married to Colette and we have three children, who grew up to make us proud. Life was good and very busy. 

Life is precious

Colette and the children were in a bad car crash one September Bank Holiday weekend 25 years ago. They miraculously survived and, as a result, we don’t take our lives for granted. September weekend is memorable for us and in 2003, it became memorable again.

I had been experiencing numbness in my left hand for a while and checked in once with our GP. Looking back, I also had weird tingling numb episodes in my legs which I ignored. That September weekend, my legs went very weak indeed and I couldn’t stand. I was admitted to hospital and was subjected to tests, including a CT scan and lumbar punctures. I thought I had a brain tumour. Multiple sclerosis (MS) was diagnosed and I was put onto mega doses of intravenous corticosteroids.

During those long nights, I heard the next patient coughing horribly. I didn’t want to be that poor soul. That patient had throat cancer. I knew I was lucky.

To keep reading, download your FREE copy of New Pathways! Download free copy

 

Announcing our new Cognition Choices booklet

Posted on: August 14 2020

Cognition cover.jpg
Click here to download your free booklet

Our helpline has been busy writing and putting together new publications this year to extend our range of Choices booklets. We asked the multiple sclerosis (MS) community for suggested subjects to write about, subjects that you, people affected by MS, wanted to read about and gain more understanding. Cognition was a popular subject.

Cognitive difficulties are experienced by around 50 per cent of people living with MS. Some will only experience mild, more manageable symptoms, whereas others will experience symptoms to a larger degree.

Speaking about cognition and how it can impact a person and those around them can be a difficult subject to discuss. It can be hard to acknowledge that a person’s cognitive abilities are not as they once were.

We wanted to make it easier to understand the different ways in which cognitive difficulties can impact and to provide a wealth of information on how to manage it including tips from those who currently live with the symptom.

You can download our Cognition booklet from our website here. It is also available in plain text format. You can also order a hard copy and we will post this to you as soon as we are able. Please order via our website here.

All our Choices booklets are sent to our virtual insights panel (VIP) before publishing to gain feedback from people living with or affected by MS. The feedback we received on the Cognition booklet was very positive and included quotes such as:

‘I cannot express how pleased I am that you have brought this leaflet to my attention. I will be highlighting this to other people with MS.’

‘This leaflet is excellent, I feel very strongly that people do not see MS as having cognitive issues only physical ones.’ 

‘It will be a useful document for those of us (me included) who have issues with cognition.’

It is really helpful for us to receive this feedback to make sure we are producing what is really needed by the MS community. If you would like to join our panel please sign up here.

We will continue to review our current publications and also write new ones when required. We have another new booklet to be published soon too, all about spasms and spasticity. Keep a check on our website for when that comes. If you have any suggestions for other subjects that we are yet to cover please let us know. Email info@ms-uk.org We always welcome suggestions.

Laura & Ryan

MS-UK Helpline                                                    Click here to download your free Choices booklet

Mum guilt is real, especially for those of us with MS

Posted on: August 10 2020

Hannah Morris on how feeling guilty about your kids is only intensified by a condition like MS

hannah resized.pngI recently confided in a friend because I was feeling pretty fed up of not having my own space any more thanks to the COVID-19 lockdown. I love my kids to bits. I’d do anything for them, really I would, but I also need a bit of my own space and peace each day too.

It felt wrong to have such feelings towards the very children that I have given birth to. I had reached a point of frustration that I just needed to get it off my chest. And, at such a low point for me, I needed that shoulder to cry on. Her first response was ‘mum guilt is real’. I had never heard of this term until this moment, but it made so much sense.

What is mum-guilt?

There are so many reasons why we mums experience overwhelming feelings of guilt. To name a few...

  • Guilty for not giving our children what they need
  • Guilty for not doing what we feel we should be doing
  • Guilty for wanting a break from it all

Most mums experience this to some extent at some point, but for people with multiple sclerosis (MS) these feelings can be exacerbated further as a result of some of the symptoms of MS.

Examples

For me personally, there are three symptoms in particular that have an indirect effect on my level of mum guilt – cogfog, sensory overload and fatigue.

  • Cogfog. I often forget things that I have promised my children and that can make me feel like a failure as a mum sometimes, especially when it is something that means a lot to them, or they are relying on
  • Fatigue. On some occasions, I simply don’t have the physical or mental energy to engage with them as I’d like to. I feel particularly guilty towards my youngest two, that I had after my diagnosis. I had so much energy for my oldest three and I feel bad that I can’t give the same kind of energy to my youngest ones
  • Sensory overload. This has only become a significant issue in recent times. Having five children at home with me 24/7 has meant living in a very noisy house from morning to night which makes me get noticeably agitated at times, forgetting that they’re just children and children make noise! I feel terrible for trying to take that from them for my own benefit. It makes me feel selfish

How to help yourself have a break from this feeling (practically)

Firstly, let’s begin with how not to do it. For me, my mum guilt has been particularly noticeable at this time because I’m with my children 24/7 without the usual break that I get when they are at school in the day. Without that natural break I sometimes find myself staying up late just to get that peace, which of course had the knock-on on effect of increasing fatigue and grouchiness the next day!

In open discussion with other mummies with MS I’ve learnt some great practical tips from them that can help to reduce the impact of common MS symptoms impact on parenting and therefore reducing the level of mum-guilt as a result.

  • Teach them about your MS so they don’t think it’s something about them
  • Help them to help you by learning to keep themselves occupied when mummy’s tired or having a hard time with her MS or getting involved in helping mummy with tasks she is struggling with
  • Plan ahead so you are not too exhausted on other tasks before a planned task with your children

How to help yourself have a break from this feeling (emotionally)

  • Forgive yourself. You’re doing your best!
  • Don’t compare yourself to others mums (especially other mums from the playground who don’t have MS.)
  • Talk about it. I did, and it really helped. It was great to learn tips from other MSers that I’d never even thought abou
  • Ask for help from your spouse, friends or family either with engaging your kids in the things that you’d like to, or otherwise in tending to matters that may otherwise prevent you from engaging with them yourself

As my friend said, ‘mum guilt is real’ and it truly is, especially for those of us with MS who have additional challenges to manage too. It’s not easy, but there are ways that we can make things easier for ourselves.

My research

As part of my research, I am hoping to support others in the same situation and invite you to join me in this endeavour by having your say in what would help you.

If you are happy to help out then you can complete this online survey here by clicking the ‘start’ button at the bottom of the page.

Or you can go directly to the survey by clicking here 

“I was 68 before I had run a mile without stopping”

Posted on: August 05 2020

Roger Boys, 74, on his incredible challenge for MS-UK

R Boys 1.JPGI have a good friend Sue Bennett who has run a number of London Marathons on behalf of MS-UK, and in the past, I have helped her raise money on their behalf by organising a Rock ’n’ Roll Bingo nights for her Run Together Group, which I am a member of. Sadly this year the Virgin Money London Marathon has been postponed and will possibly have to be cancelled and therefore MS-UK could miss out on a considerable amount of income due to the pandemic.

Sue has, during the lockdown, done her very best to keep us all motivated via a Whatsapp group that she set up, despite being isolated herself. This proved to be very successful and great fun, it certainly kept me motivated and keen to get out and continue with my running.

Late starter

I am not a great runner having only really taken it up in later life. I was 68 before I had run a mile without stopping. However, I do have determination and therefore when I first heard about the parkrun events I was keen to join in and run their 5k. This I managed in 2014.

It was taking part in these events that I first met Sue who, in her quiet way, motivated me to continue and try and improve my technique, so I joined her Run Together Group on a Wednesday evening for some coaching.

It was great fun. I was the only man taking part at first but was made very welcome by all the ladies. Sue helped a lot with my technique and breathing, although I still can’t talk and run like the women!

So when it was suggested by Sue that we might like to take part in the MS-UK fundraising event called My MS Marathon, where people are encouraged to do something 26 times, be it running, skipping, walking, yoga or making cakes, I decided to set myself a challenge.

R Boys 3.JPGWhat can I do that I will enjoy but will also challenge me? How about trying to run a mile for every year of my life during July? Sounds fun and it will certainly be a challenge because that will be 74 miles in 30 days. I mulled it over with Nicky my wife, and we agreed I should have a go and she gave me my first £25 towards the target I had set, which was to raise £100 for MS-UK. I completed the registration form and was then committed. Things escalated as I put my intentions on to my Facebook page.

Beyond expectations

After I had run the first six miles, within a couple of days our friends had sent the total climbing. It went past £200 rapidly and was still climbing towards £300 by the time I had completed the third six-mile run, and more importantly, there were lots of words of encouragement. By the time I had got to halfway towards my target, the total had passed £500. I simply could not believe it.

For some reason, which I cannot explain, the challenge seemed to get tougher proportional to the total sum raised which of course is all in the mind but brings additional pressure never the less.

When we hit £750 I was about 75% of the way to achieving the objective and began to think that just maybe we could get to the magic £1000 mark. The running was becoming fun, as I explored the towpath on the Kennet and Avon canal searching for the wildlife and butterflies that became my companions as I headed towards my total.

Other days I explored new parts of Greenham Common looking for relics of the period when it was used by the US Air Force during the cold war, also the Craven Estate, a beautiful place to run with the sheep and lambs and very occasionally deer. Some days it was very hot and humid others windy and raining, neither affect the determination of the long-distance runner!

R Boys 6.JPGFor the final two miles, I was joined by Sue Bennett and friends from Run Together who offered to accompany me for the final run-in. Some were standing on the route waving banners and cheering me on – observing the protocol of social distancing of course! This was great fun as we tackled the parkrun course which is three miles, giving me an extra mile, making the grand total 75 miles completed during July, so one mile in the bank for my 75th birthday in September 2020. There was a professional photographer David Hartley on hand to take snaps as we crossed the finish line to be greeted with a glass of bubbles. Challenge completed – phew!

At this point, I must say a huge thank you to all who supported me with words of encouragement including Lucy King from MS-UK, who rang on a regular basis, and everyone who so generously donated money to the fund. How it got to the grand total £1,200 is just amazing. Nicky and I were just blown away by the support our idea generated.

Thank you!

“All I wanted to do was sit down, the bits between the chairs were very stressful”

Posted on: August 05 2020

Ex-pat MSer Elen Evans explains how a simple trike gave her back her zest for life

me and viking.jpgI have been living mainly in Barcelona for 10 years now, Spain for 14, and outside of the UK for 21. I was diagnosed with multiple sclerosis (MS) at the beginning of my travels but was so determined not to let it stop me.

Who'd have thought I'd name an inanimate object? Who'd have thought it could change my life in so many ways?

I’m talking about Tracy the trike, pictued right – blue and sporty, regal and grand, brought to Barcelona on an EasyJet plane somehow…by my old school friend Matt (he wouldn’t let airport security halt his mission!).

Tracy is what helped me get back to feeling proud of who I am, enabling me to look around and soak up my surroundings, enabling me to move from barrio to barrio in the city I live in, letting me look at my friends while they are talking to me, giving me space to forget, just for a moment, that I have MS. Such a small thing changed my life so completely. I felt low before Tracy. I lacked hope, I couldn't see how things were going to get easier. All I wanted to do was sit down, the bits between the chairs were very stressful and never a pleasure.

Having Tracy the Trike has taught me how important it is to find a way of coping with this life, how important it is to make it comfortable and manageable, whatever our circumstances may be, whatever cards we have been dealt.

One night they came and stole her. Unfortunately, in Barcelona, if you have a good bike and you lock it on the street it will get stolen. Tracy was locked with two hard-core chains when she was stolen but they obviously came at night with heavy-duty cutters and a van, and took her niftily away, never to be seen again.

ruby_25thOct2014.jpgBut, I then found Ruby, the red trike, and all my colleagues at work chipped in because they knew how devastated I was that Tracy had been nicked. I bought Ruby second hand but she is reliable and six years later I still have her.

A wrote a poem inspired by my feelings about the bits between the chairs

 

The Bits Between the Chairs

It all looks so peaceful,

Full of gaps and space,

Air and light.

So spacious,

To you.

 

But the bits between the chairs

Pose a threat,

They present an abyss

Of loneliness

Of empty space

Of solitude,

To me.

 

"You're on your own, love"

No support

No helping hand

Just me

And the space

And the uneven gait

The wobbling

The falling

The shaking

No holding

All alone

And lots of eyes

Looking, judging, questioning.

 

A crowded space

Hectic

So busy,

To you.

 

Full of support

Full of rest

Full of help

Not there to test

There is no threat,

To me.

 

The bits between the chairs

Are long and difficult

Never ending, it seems

But something to lean on

Gleams brightly,

So brightly

So nicely

So gently

So kindly

To me.

"When the diagnosis finally came, it was a relief"

Posted on: August 04 2020

IMG_20191026_190457.jpgJoanna Livermore talks us through her long road to diagnosis, embracing lifestyle changes and the positives she’s taken from having MS

My first symptoms started back in 2010. I’d not long moved up to Greater Manchester from Essex. My feet started tingling. I remember walking from my car to work one morning and I was wearing ballet pumps. I couldn’t keep them on my feet – all sensation was gone from them and they just felt really cold. That sensation gradually travelled further up my legs, and I kept switching between feeling hypersensitive to feeling nothing from the waist down. I went to see my GP, who referred me for an MRI scan. I never heard anything back from the scan. I didn’t chase it so I assumed it wasn’t anything serious or worth worrying about. Whilst that sensation I was experiencing is nowhere near as bad as when it started out, it’s never really left me.

Early clues

Between 2010 and 2017 I continued to pick up on odd bodily quirks. For example, I experienced random leg buckling, losing my balance without explanation, and even what I now know to be the multiple sclerosis (MS) hug (where you feel as if there is a tight band around your chest).

I could explain away everything though, from working too hard in the gym, to a sensitivity to caffeine. I distinctly remember one relapse where I spent about two weeks with my head over the toilet as I was persistently and violently sick from vertigo and double vision. Even at that point, aside from my GP suggesting that I might have had a stroke, it never seemed to cross anybody’s mind that I had MS.

That all changed in June 2017 when I lost my vision in one eye. After seeing my optician I was referred to St Paul’s eye unit in Liverpool and after three months, a lot of tests and loads of people asking me if I had tingling in my legs, I was told that I’d had optic neuritis and that I might have MS.

In limbo

After the initial shock of being told that I might have MS, honestly – I didn’t expect it at all – my world fell apart. I didn’t get my confirmed diagnosis of MS until four months later and that period of time between being told that I might have it and it being diagnosed was the toughest wait I’ve ever experienced.

What it did do, though, was give me the time and space to process that I was going to be diagnosed with a serious medical condition, whether that be MS, or something else. I had counselling through my work’s employee assistance programme to come to terms with what was ahead, which really helped me to prepare mentally. When the diagnosis finally came, it was a relief. Limbo had felt worse than the reality. You can’t do anything in limbo. Life is uncertain. You can’t move forward.

To read Joanna's full story, download the lastest copy of New Pathways for free! Download free copy